Food Allergy Crazy

Valentine's Day postscript

2012-02-17T17:37:00.000-08:00

I spoke too soon about the Valentine's Day party. I knew all the food that came to the party, and I thought several times about checking what game they would play, but I didn't want to be a pain and who would play a food game with all that food at the party?

Well, the kids did their craft, a cute little "love" sign, and then they split up into groups to play the game and eat. The mom who brought the game started getting Hershey's kisses out of a bag. I leaned in and asked if the game involved touching Hershey's kisses and explained Little Dude couldn't do that. She looked at me like I'm an idiot and said, "He can't touch foil?" If I'd had more presence of mind I would have replied, "Would you like your child to touch poison wrapped up in foil? No, he can't touch the foil!" But, I just shook my head instead. She went about setting up the game and I pulled Little Dude aside and explained that he couldn't play. I was so mad and upset I wanted to just leave, but Little Dude really wanted to stay, so we did. He watched the other kids play the game and wandered around for awhile until it was his group's turn to eat. At the end of the game the kids were given stickers, so I leaned in to at least grab some stickers for Little Dude, at which point the mom finally said "Sorry" in a not-so-sincere kind of way.

I know the whole thing was my fault -- I should have checked on the game ahead of time. I just get so tired of being that mom. But it would be better to be that mom ahead of time and in private with just the mom concerned rather than totally losing my cool in front of all the moms at the party. I just feel so bad for Little Dude. I hope he doesn't remember that party forever.

Valentine's Day

2012-02-14T10:21:00.000-08:00

I just have to share what Little Dude's class is having for their Valentine's Day party:

Valentine’s Candy
Beverage
Chocolate dipped strawberries
Salty snacks (3 different ones!)
Sweet snack (popsicle)
Veggie & fruit trays

The moms have been very nice about trying to include Little Dude, and letting me know what to bring and make. But seriously -- do six-year-olds need this much food for a Valentine's Day party? Am I alone in remembering that we used to get conversation hearts and maybe a cupcake? I always wonder if I would feel this way without the food allergies, but it just seems like elementary classroom parties have rocketed way out of control. This, to me, is food for an adult party, not an afternoon school party. And of course the kids will also get tons of candy as they trade Valentines. Hmmm . . . I wonder why all our kids are overweight?

Miscellany

2012-02-06T15:57:00.000-08:00

Well, the good news is that the school principle responded to our email and agreed that there is a conflict with school policy. All collected peanut butter jars are to kept in the elementary office. (This was our main concern to begin with -- you can't have a peanut free classroom policy and then collect peanut butter jars in the classroom! The teacher managed to spin that into us not caring about the hungry. Sooo frustrating.)

Interestingly, Little Dude also brought home all his "100th Day" worksheets today. One said, "In 100 years I hope that I can . . . " and Little Dude filled it out "eat whatever I am allergic to." Sigh. Chances are he'll be in heaven in 100 years, so I guess he'll be sitting down at God's banqueting table and digging in! (And I'll be right there with him, rejoicing!)

Another worksheet said "If I had 100 dollars I would" to which Little Dude wrote "give to the poors." Hmmm. I think he has compassion in his limited 6-year-old way. I really don't think bringing a jar of peanut butter is going to enhance that.

Peanut Butter Food Drive

2012-02-06T06:31:00.000-08:00

Yes, you read that correctly. Less than two months after enacting a policy that all elementary classrooms will be peanut and nut free, our lovely school is doing a peanut butter food drive. What the @#$@Y^@%%@I$^O(!!!!!

Here's the real kicker. I sent a very polite email to the principle, school nurse, and Little Dude's teacher explaining why he would not be participating and suggesting that this was a clear violation of their new policy. Little Dude's teacher sent me an email back saying, in part:

"Wouldn't it be just like God to ask for peanut butter ~ taking us our of our comfort zone and asking us to be a part of something much bigger than ourselves? Giving is truly the lesson I see before us. Will we give only when it fits us, when we are comfortable with it, or will we give because we have been asked and it's the right thing to do?"

I am seething with anger right now, and since I can't send a scathing reply to Little Dude's teacher, I'm going to type it here instead. How dare you suggest that God is asking us to bring peanut butter? The stupid high school students are asking us to bring peanut butter!! God knows how dangerous peanut butter is for Little Dude, and I can tell you for a fact this is not from Him!!! Furthermore, God asks me to get out of my comfort zone every single day by sending Little Dude to a school where his safety, clearly, is no one's primary concern. What's more important -- keeping my child alive or providing a meal for someone who's hungry? And let's not forget that we could provide lots of diffferent foods for that hungry person that would not be life-threatening for my son.

The teacher goes on: "As far as feeling sad because he can't have any himself could be turned around to giving to someone who eats this product making their diet nutritious, ultimately making their life better . . . Giving something that we personally don't eat could be a positive life lesson of learning that we are all unique and have various differences; yet not allowing that to stop us from helping each other. Our class is in the middle of a nutrition unit and this school drive is perfect timing in teaching the different choices we have to reach a well balanced diet. Not all of our diets looks the same and that's OK. The end goal is to be healthy."

Oooookaaay. First off, why should I have to turn it around? Again, there are plenty of foods we could bring that would not make my child feel bad. He's only six years old! That's a little young to be able to put your personal feelings aside and focus on others instead. And the nutrition unit they're doing in school? Has any of that unit focused on Little Dude's unique nutritional needs? NO! He comes home every day with some new bit of nutritional information, and I have to tell him, "That's not true for you, buddy. It's true for most people, but not for you."

And lastly, my favorite part of the email: "I contacted the student President of Key Club and he assured me everything has been approved and thought safe for ALL students. Let's allow God to use each of us and embrace helping others regardless of our differences. It's not about us, it's about helping others. I ask you to please pray about allowing Nick to give...not because it fits him, but because it fits someone else's needs. I believe it will be a life lesson that he can embrace, feel good about and teach his own children. What a unique God we have. I'm so thankful He didn't make is all the same!"

Oh, so the President of the Key Club has an MD now? Well, as long as a high school senior thinks it's safe I guess we'll go with it! Are you kidding me!!?!

And that last bit -- now I'm a bad, selfish Christian because I'm not allowing my son to participate in a peanut butter food drive. Really?

I just feel like I'm going round and round and round. Every single year we have to go through this with one thing or another. People always think I'm being selfish, and all I'm doing is trying to keep my kid alive. How is that selfish? How is that not God's will?

Of course we can't say any of this to the teacher because we need her to be on our side for the rest of school year. My wonderful husband sent a polite, but stern, reply explaining again why we are not participating, and emphasizing again that to have peanut butter jars in the classroom is a clear violation of school policy.

And around we go.

Big News!

2011-12-30T06:43:00.000-08:00

Hubby took a week of vacation right before Christmas, so we decided to head to Branson, Missouri for a little downtime. While there, we checked into allergy friendly restaurants and found that Macaroni Grill had an allergen menu. We were a little nervous, and we brought some backup food just in case, but we decided to give it a try. (Little Dude was one year old the last time he ate restaurant food -- a plain burger, no bun at Red Robin, before we knew he had a beef allergy. When he developed an itchy rash afterwards, we swore off restaurant food. Soon after that we got all the rest of his allergies diagnosed and there was nothing he could possibly eat in a restaurant anyway.)

We got to Macaroni Grill around 5:00, so there was no one else there, which we figured would allow the chef to really pay attention to Little Dude's food. We ordered him a plain pork chop, just salt and pepper, and no sides. (We brought some sides with us.) He loved it. He ate almost all of an adult size pork chop! And here's the kicker: he also got to eat some lemon sorbet!!

It was a great experience. The waiter was concerned and helpful, and really went the extra mile to help us out. Little Dude was so happy. He did get a very small rash on his face, but as my husband said, it was the mildest allergic reaction ever.
We're hoping this is just the beginning!

Wheat Oral Food Challenge

2011-10-27T11:30:00.000-07:00

We bravely went through our first oral food challenge last Friday -- wheat! Of course it wasn't what we expected. They told us to bring some prepared cream of wheat. We told Little Dude he was just going to eat wheat -- no pricks, yeah! Then we got there and the doc wanted to redo the skin test before going forward with the oral challenge. Sigh. That did not go over well, but we got it done.

Then the fun part -- it was positive. The doc said there was a 30% chance Little Dude would pass the oral challenge despite having a positive skin test. Hubby and I knew that meant there was no way in the world Little Dude would pass, but we'd been hyping this for a week, so how could we just leave without letting him taste wheat?

So, despite our misgivings, we proceeded with the oral challenge very cautiously. First they put some cream of wheat on his arm to see if it would react. Then they put a tiny little dab between his bottom lip and teeth to see if his lips would swell or get red. So far so good. Finally they gave him 1/4 tsp orally. Waiting around 15 minutes between each dose, they increased the doses for about 2 hours, giving him a total of around 3 tsp cream of wheat. At that point two little whelps popped up on his chin. We called the nurse in and loaded Little Dude with Benadryl, Singulair, and steroids. A few more whelps popped up on his arm and jawline before the Benadryl kicked in, but within 30 minutes he was recovering nicely.

So, no wheat for Little Dude. I was hoping the allergy would at least be downgraded from life-threatening, but it was not to be. Good news is, we're well versed in avoiding wheat. It's not nearly the emotional wallop that the initial diagnosis was!

Little Dude was pretty bummed, and teared up a little when the whelps formed. That was the worst of it for me -- just watching him deal with it. But, we've really tried to make a big deal about all the foods we can try without the doctor's supervision. It's been a challenging week (especially for Little Dude's teacher) as the steroids seem to cause extreme hyperactivity, but we're hoping he'll calm down pretty soon.

Latest Test Results

2011-08-26T11:31:00.000-07:00

We went through another round of skin testing a few weeks ago. The results show that he is still allergic to egg and milk. (No surprise there.) They didn't even test peanuts or tree nuts (thankfully); we can safely assume those are still problematic. Here's the real kicker, though: he was negative for wheat! Yes, wheat! It is literally inconceivable to me -- I can't imagine a world in which I do not have to worry about wheat.

We haven't decided how to proceed yet. The doctor said we could try it at home or do a food challenge at the doctor's office. Since wheat has caused anaphylaxis every time Little Dude has ever eaten it, we're not thrilled with the idea of trying it at home. (Maybe in the parking lot of the ER?) On the other hand, to do a food challenge in the doctor's office they require us to be off antihistamines for seven days prior. Not really our favorite thing to do, and really scary with Little Dude at school every day.

For right now, we are trying the other food that came out negative -- corn. Little Dude has been feasting on corn on the cob (which he loves), kernel corn, and even some cornbread. So far he's doing great! We've been afraid to give him too much of it, but he's been eating it off and on for 2 weeks now, so it's probably time to just go for it.

I hate to say we feel blessed, because the truth is we have been blessed all along. But it is such a relief to feel the burden lifting a little. To finally feel that maybe there is an end to all this, or at least an easier road in sight.

Summer Breakthroughs

2011-08-07T14:02:00.000-07:00

Food-wise, we have been having a great summer! It looks like perhaps Little Dude is finally starting to grow out of some of these allergies. Hallelujah! Fall allergy season and the start of school will be the real test -- those always make the food allergies worse, but hopefully we can continue some of the foods we've added this summer. Here's a list, because I know you're curious!

Fresh grapes (yes, with the waxy preservative!)
Beef (only about once a week, but still a huge deal for us)
Blueberry
Garlic (occasionally)
Edy's Just Fruit popsicles (lemon, lime, and strawberry)!!!!!!!!!!!!!
Pineapple (including pineapple fruit cups with ascorbic acid)
Rice (occasionally)
Annie's Gummy Bunnies (occasionally)

Little Dude is having so much fun eating these new foods. It is such joy to watch him eat a store-bought popsicle, or loudly sip the juice from a fruit cup. Good times!

Followup

2011-06-21T10:41:00.000-07:00

I never thought I'd say this on the heels of that horrible tonsillectomy experience, but . . . it was worth it.

Before the surgery every meal was a battle with Little Dude. My husband and I would be finished eating before Little Dude had even taken one bite, and then you had to coach him through the entire meal, chanting "chew and swallow" over and over again. It was really wearing, meal after meal, day after day.

After the surgery, Little Dude sits down and starts eating. He is still a slow eater, but we don't have to literally force him to eat anymore. He sits and eats, and keeps eating until it's gone. He's already gained two pounds, and I have hopes for many more!

It feels like a giant weight has been lifted. I still have a lot of guilt over what Little Dude isn't allowed to eat, but mealtimes are no longer horrible. Hallelujah!

Tonsillectomy/Adenoidectomy Saga

2011-06-04T12:17:00.000-07:00

Yeah, get ready, this is a long one! We decided (and the ENT concurred) that Little Dude needed a tonsillectomy since his tonsils were always huge and swollen. He seemed to have problems swallowing his food, and there was a possibility of sleep apnea as well. We made the decision in March, but decided to wait until school was out to have the surgery.

Two weeks before the surgery I called the ENT's office and asked for a list of what they were planning to prescribe so that I could check all the ingredients and make sure it was all safe. They told me Little Dude would get Lortab Elixir, phenergen gel, and a Tetracaine sucker. Then I went to our wonderful local pharmacist to check ingredients. Lortab Elixir actually has barley in it -- kind of weird and possibly anaphylactic for Little Dude, plus the sucker had all kinds of bad stuff. But the pharmacist said he could compound hydrocodone liquid, and then we could give Tylenol separately. (Lortab is a mix of hydrocodone and Tylenol.) One week before the surgery I called the ENT office and explained to the doc's Medical Assistant about the Lortab Elixir and asked for the compounded prescription instead. The day before the surgery, the medical assistant called me and said they needed a release in writing from Little Dude's allergist stating that he could take hydrocodone. They gave us approximately six hours to contact our allergist and get a letter, after I gave them an entire week to get the prescriptions. So frustrating!

Thankfully, my husband used his handy dandy M.D. initials, managed to contact our allergist even though he was in meetings all day and could not possibly be disturbed, and got the letter faxed to the (insert colorful adjective here) ENT.

Next day we went to the hospital around 6 AM for the 7:30 surgery. I had already talked to the nurse manager the day before during a pre-op phone call and alerted her to Little Dude's many allergies. We checked in, they took us back to the room, and the nurse says, "no allergies, right?" We heave a big sigh and start going through it. The nurse actually looks at the chart at that point and says, "Oh, it's right here." She puts a bright red "ALLERGY" bracelet on Little Dude's wrist along with his name bracelet. So, I'm thinking it's taken care of. However, every succeeding nurse that comes in or deals with us says, "no allergies, right?" I guess they just ask the question because it's easier than reading the chart, but wow, is that frustrating and anxiety-producing for two worried parents!

Good news is, the anesthesiologist had actually read the chart in advance and assured us that she would not be using the anesthesia with egg whites in it. (This about gave me a heart attack, too, though. Why on earth is there an anesthesia made with egg whites? And why didn't I know about it so I could make sure ahead of time they weren't going to use it?)

Anyway, Little Dude got rolled back to surgery and we settled in to wait. Pretty soon the ENT came and reported that the surgery was complete. He told us Little Dude's adenoids were blocking about 95% of his nasal cavity, so apparently it was a really good thing we got them taken out.

We got called back to recovery soon after, and that's when the wheels came off. The anesthesiologist said that Little Dude's airway was small (notice this wasn't her fault), so the tube she put in the first time was too big, which probably irritated his airway. Meanwhile, Little Dude was absolutely hysterical, which I was kind of prepared for after his last surgery, but he was also in huge pain, which was a surprise. I just assumed they would have the pain under control, especially when he first came out of anesthesia. We could visibly see the pain in his face. It was awful. We had to wait what seemed like forever for more pain medication -- the nurses have to jump through all kinds of hoops because it was a narcotic. They finally got it, and then it had to be given very slowly into the IV. We kept waiting for it to take effect, but no change. So the nurses ordered more pain medication and we went through the whole thing again. Finally Little Dude settled down.

Once we got him settled, we noticed he was having stridor, or trouble breathing, probably due to the tube issues. With that and the major doses of narcotic he'd been given, they moved us into a private recovery room so they could watch Little Dude for an extra hour. I found out later that the high doses of narcotic could have made him stop breathing. So glad I didn't know that at the time! We ended up sitting in recovery for another hour and a half, and finally they released us to go home.

We brought Little Dude home, settled him on the couch with all his quilts and stuffed animals to watch a show, and my husband went to get the prescriptions filled. Usually I read all the small print the first time I get a prescription, but since the hydrocodone was compounded there were no side effects or anything listed. So, for the first week after the surgery Little Dude kept waking up in hysterics 2-3 times a night. We thought it must be pain, but it was weird because it was almost like he was having night terrors again. We kept dosing him with the hydrocodone thinking we were helping him with the pain. Finally after a week I called the ENT and asked if Little Dude should still be in this much pain. I explained the hysteria at night, and the ENT explained that sometimes hydrocodone can cause nightmares and night terrors in children, so maybe we should try weaning him off. Sure enough, we cut down on the hydrocodone and he immediately started sleeping better. So frustrating!

We're about 10 days out now and Little Dude is finally starting to act like himself again. He has really enjoyed all the extra TV privileges, plus popsicles (homemade from grape juice) and ice cream (found a mango sorbet he seems to be able to eat) whenever he wants. Hopefully once he's on solid foods again we'll see a real difference in his ability to swallow. Maybe he'll even gain a few pounds!!

Under the Umbrella

2011-03-04T06:52:00.000-08:00

I absolutely love Little Dude's kindergarten teacher, and she has done a great job of keeping him safe this year at school. Unfortunately, she's been sick quite a lot this year and we've also had to deal with a lot of substitute teachers. (The upside, as my husband is quick to point out, is that all the subs will probably know Little Dude after this year!)

The downside is that things slip through the cracks. We had a sub a few weeks ago, and we'd had her before, so I didn't go through the whole food allergy training program with her again. I just reminded her about Little Dude and she said she remembered.

Later that day I came to help with Little Dude's art class, as I do every week.  They were doing a project with play-doh, which contains wheat and is therefore off-limits. (And catching these things is exactly why I help in art every week!!) I ran down to his regular classroom to find some of the gluten-free play-doh we brought for him to use. The sub helped me look, and I noticed that there were piles of candy on the tables. The sub said they had been counting candy, and since Little Dude couldn't touch the candy she made him the "policeman" to watch the other kids and make sure no candy hit the floor.

Sidenote: how is this acceptable? Why does anyone think it's ok to exclude a five-year-old from an activity that everyone else gets to do? We've had this happen over and over again, and the teachers just act like, "Oh, well, what was I supposed to do?" Hmmm . . . maybe plan an activity ALL the kids can do? Because you're a teacher and that's your job?

Anyway, I told the sub that Little Dude was probably not happy about watching the other kids, and she gave me that "oh well" shrug. Love it. But, I thought they were done with it, so I didn't say anything else. We finished our play-doh art project, the kids went back to class, and I went to sit in the parking lot for the thirty minutes until school was out.

When the kids got back to class they took the candy they had counted and glued it to big pink paper hearts. Apparently Little Dude had reached his limit at this point, and he took two chocolate chips and ate them.

One of the other kids saw him eat the chocolate chips and told the sub. She called up to the art room to see if I was still there. When I wasn't, she did NOTHING. Yep, that's right, nothing. She didn't call the nurse. She didn't call the office to ask what she should do or get my cell phone number. She did absolutely nothing.

By divine Providence, I went into the school lobby early and was sitting there waiting for the kids to get out. One of the other kids came out to go to the bathroom and told me what Little Dude had done. I raced back to the classroom and gave him Benadryl. His chin was red and rashy but that was the only symptom. I was able to get the wrapper from the chocolate chips; they contained milk and possible traces of peanut.

I watched him closely all afternoon, but he never went into anaphylaxis. I don't know if it was the small amount that he ate or what, but praise God, he came through it.

We have spoken with the principal, and new procedures are now in place for training the substitutes. And I will never again leave him with just a reminder to a sub; we will go through all the information every single time. We've also talked with Little Dude about appropriate responses when he's angry about being left out.

I guess we have to learn everything the hard way.

I am SO grateful for the protection God has given Little Dude.  It's like he has this little umbrella of grace over his head. Keep him under the umbrella, Lord.

Fish (Again!)

2011-02-21T11:23:00.000-08:00

I know you're probably all tired of reading about my fish phobias, but I have to tell this story. Little Dude once again tested negative to fish on the RAST and a skin test, and his new (wonderful) allergist wanted to do an oral challenge. I know that's reasonable from a scientific standpoint, but I just have this deep gut feeling that we should not, not, not eat fish. So my husband and I discussed it, and my husband wanted to do the test as well. Very frustrating, but not surprising. Finally, after a few weeks of stalemate, I went ahead and made the appointment. As I did, I prayed, "God, I am making this appointment to honor my husband. But if for some reason Little Dude is not supposed to eat fish I am trusting You to get us out of this somehow." And as the appointment neared, and I got more and more nervous, I repeated that prayer over and over and over.

Five days before the appointment we took Little Dude off antihistamines, as required by the allergist. (This was another big hangup for me; Little Dude needs his antihistamines!) The very next day meteorologists began predicting snow for the day of the appointment. By that night the reports were conclusive enough that we gave Little Dude his medicines. And the day of the appointment, Oklahoma received record-breaking blizzard conditions. Yep, God got us out of that appointment!!

I guess I should apologize to my Oklahoma friends who were snowed in for 4 days . . . it was all my fault!

A Dream

2011-01-24T06:01:00.000-08:00

Just have to share a dream Little Dude had last week. He came down to breakfast and said, "I had a dream that God was real [as in flesh and blood -- he knows God is real!] and that He was lying beside me at night and sitting with me at breakfast, lunch, and dinner every day." Of all the things for God to be doing with my Little Dude! He's sitting beside him at every meal, and I can just picture Him with his arm around Little Dude, watching every bite that goes in and protecting him from harm. Isn't that beautiful?

Gingerbread House

2011-01-14T10:27:00.000-08:00

Part of Little Dude's Christmas celebrations at school this year was making a gingerbread house. Our first reaction was no way, we'll just keep him home. The teacher explained that the houses would be made from two milk cartons hot glued together, with graham crackers glued to the outside. She said Little Dude could just frost the cartons without the crackers, and that the only decorations would be "hard candies." Moreover, the children were not going to be allowed to eat the candies as they decorated. So we agreed.

The day before the decorating was to take place, we got an email from the teacher asking for more candy and decorations. She said she had already received pretzels and shredded wheat (for a snowy roof), but she needed more. This email caused a bout of panic for us. What happened to the hard candies? Little Dude can't touch pretzels or shredded wheat -- you may as well give him rat poison to put on his house. That would probably be safer for him, actually. It was too late to back out; we'd already told Little Dude about the activity. So, the best husband and father in the world made an emergency trip to Walmart to buy decorations Little Dude could use. He came home with awesome stuff -- little candy trees and snowmen, sprinkles, pastel marshmallows. We're good to go!

The morning of the activity I brought Little Dude to school, since I was staying to supervise and make sure he stayed safe. The teacher was sick, and a substitute was trying to get everything ready. The milk cartons had all been covered with graham crackers, which meant there was not a safe one for Little Dude to use. After much ado, the very kind teacher next door traded us a house that did not have graham crackers for one that did. (Her kiddos weren't decorating until a few days later.) She even gave me a sheet of brown construction paper to glue on the cartons so Little Dude's would be the same color as everyone else's.

The parents who were there to help started laying out the decorations and icing for the kids to use. The icing wasn't the Betty Crocker kind we had been told to expect (that does not contain eggs), but rather Pillsbury, which does contain eggs. More panic, but it's too late to back out. I decided I would hover over Little Dude the whole time and stay at the school an hour afterwards to make sure he was ok. The other parents had not brought near enough candy, and everyone is looking at the sack full of Little Dude's bounty expecting us to share. I politely explain that we can't share because we can't let Little Dude's stuff get cross contaminated with the wheat. Blank stares of incomprehension. I'm reminding myself God has not called me to be liked! He has called me to protect this little boy.

The kids start decorating. Little Dude has an absolute blast, and he is the envy of all the other kids because his decorations are so much better. One little girl comes over and says, "You are sooo lucky." Cracks me up! Inevitably, one of the kids starts eating the candy. The substitute teacher doesn't know the kids aren't supposed to and so doesn't stop it. One of the dads joins in, which gets all the kids eating. Little Dude gives me a mournful look and pointedly says, "they're eating the candy!" I tell him he can have some of his candy when he gets home. Big internal sigh.

Finally it is over. I brief the sub on what anaphylaxis looks like and what to do if it happens. I stick around and check on Little Dude a couple more times; he seems fine. Thank God.

I share this story because it's so emblematic of dealing with food allergies. I feel like we are constantly negotiating what's safe and what's not, and then having to hold people to the agreements they made.

What I noticed, especially over Christmas, is that things which should be joyful have a layer of sadness for us. Even though Little Dude enjoyed making his house, he was sad because the other kids were eating and he couldn't. It feels like every bit of joy has this undercurrent of grief.

A List

2010-12-27T12:41:00.000-08:00

A list of all the food-related activities in Little Dude's kindergarten class so far this year:

1) Popcorn Worksheet (glue popcorn to a sheet of paper)
2) Field trip to apple orchard
3) Taste test different apple varieties
4) Make apple crisp in classroom
5) Make teepees from flour tortillas (Little Dude had to use a corn tortilla, and his collapsed. Sigh.)
6) Field trip to pumpkin patch, including a petting zoo/feed the animals area (Animal feed usually contains large amounts of wheat)
7) Halloween party
8) Make "stone soup" in classroom
9) Make gingerbread cookies/cake (His teacher actually decided not to do this since we were going to have to keep Little Dude home that day, but then he got sick anyway.)
10) Make gingerbread house (this was a complete nightmare)
11) Visit from "Santa's helper," who gave out cookies and chocolate
12) Mexican fiesta
13) Christmas party

For every one of these activities I have to either figure out an alternative for Little Dude or a way to make the activity safe for him. Am I just hypersensitive, or does it seem like they do a LOT with food?

The Latest

2010-11-11T06:45:00.000-08:00

It all started Sunday. Little Dude woke up with a bellyache at 4:30 am. We gave him the usual medicine and I laid down with him and rubbed his tummy to help him go back to sleep, our usual nighttime bellyache procedure. Well, I'm guessing because of daylight savings, Little Dude was convinced that it was almost morning and if he just kept himself awake long enough he could get up. So, he successfully kept himself awake until 7, when we finally let him get up. He was out of sorts all day (yeah, I was too!) and we put him to bed early that night. Went to check on him before going to bed ourselves and found him asleep in a puddle of vomit.  Apparently he was so tired it didn't even wake him up.

Monday, we kept him home from school, but he was acting fine and never ran a fever. The only problem we noticed was that he didn't want to eat, but I chalked that up to whatever was going on with his stomach. We gave him lots of juice and figured he'd be fine.

Tuesday he still wasn't eating. Finally put it together that he didn't want to eat the food he had upchucked Sunday night. Can't blame him there! But, that food is the food he eats all the time because it's all he can eat -- homemade sausage, oat pancakes, golden syrup. So I ran out and bought some beef for him to try. Of course, we can't just run to Wal-Mart and buy some ground round. It has to be preservative, additive free, and completely uncontaminated by other proteins. (We finally figured out that while butchers are legally required to clean knives and cutting boards between meats (beef vs. chicken vs. pork), they don't change their gloves. Thus, cross-contamination.) We buy our pork from a specialized grocery here in town that sells it to us in bulk, still in the plastic from the wholesaler. I went there Tuesday and bought 13 lbs of sirloin in bulk.   (I'm actually kind of laughing as I write this -- it all just seems so absurd!)

Tuesday night we gave him pan fried steak. I know, not the best option for beef, but we can't use the grill because the smoke bothers him, and he was adamant he didn't want hamburger. He ate 4-5 pieces and slept all night. We thought he was doing great with it. Then I went to school for the Veteran's Day program, and Little Dude had turned into a bear -- snarly, irritable, and stay back! Wow. Don't know if it was the beef; he still has a cold, so maybe he wasn't feeling well, or maybe something happened at school that morning that upset him. My money's on the beef, but Little Dude wants to try it again so we will.

I'd been stressing and stressing and stressing about this, and of course my mind goes straight to worst-case scenario: he stops eating entirely, starts losing weight, gets diagnosed as "failure to thrive," on and on. Yesterday afternoon as I sat waiting in the school parking lot I made myself remember: God is good. He knew this was going to happen; it was not a surprise to Him. He knows exactly what is going on in Little Dude's body. He knows exactly what Little Dude can and can't eat, and at some point, as He always does, He is going to send me or my husband an inspiration for how to get him to eat again.

And last night I had the brainstorm (thank you, Lord!) of making meatballs out of his sausage. He actually ate a decent dinner and seemed to feel alright this morning as we sent him off to school. Hallelujah!

Now . . . why can't I bypass the stress and go directly to the Source of all life and knowledge? Why do I spend so much time fretting and worrying, thinking the burden is all on my shoulders -- it's all up to me? At what point in this craziness do I realize none of this is under my control? I can't make my own heart beat!  Why can't I submit these problems as they come to the One who has the answers?

Chocolate Update

2010-10-29T08:06:00.000-07:00

Good news on the chocolate! We did another round of RAST testing a few weeks ago, and added chocolate on at the last minute just to see what it looked like. Well, Little Dude is completely negative for chocolate! So . . . I guess there's another ingredient in Amanda's Own chocolates that is causing a problem. I'm guessing vanilla, maybe, but who knows. At any rate, I've ordered some EnjoyLife chocolate bars for him to try, and we'll see how that goes.

And, in the search for a new chocolate, I discovered that Miss Roben's cake mixes are back! Hallelujah!! Little Dude has been able to eat their chocolate cake and chocolate frosting in the past, so I've ordered some of that to try, as well.

The RAST tests also showed Little Dude to be negative for beef, so we'll be trying that sometime in the next few weeks (after the seasonal allergies die down a little). He is also negative for fish, and the doc wants to do skin testing and then an oral challenge for that. I'm still not sold on the fish idea, but I guess it's worth a try.

We are so excited and joyful about all the good news we've experienced lately! God is so good.

What Not to Say

2010-10-18T10:04:00.000-07:00

Many, many horrible things have been said to us in the guise of encouragement and support. For the most part I try to internally repeat the mantra, "They're just trying to help . . . They're just trying to help" so that I can respond graciously. So, in the spirit of helpfulness, here is my list of what not to say to families dealing with food allergies, and why:

"God wouldn't give you what you can't handle." This phrase is one of my biggest peeves. I know most people who say this mean well and probably believe it. What they don’t realize is the burden of guilt this creates in someone who isn’t handling whatever God has given them. It says, not only are you drowning under this load, but you’re a bad Christian to boot, because if your belief was right, you wouldn’t be drowning. And maybe I’m stretching it, but when it’s been said to me I always got the feeling that this platitude was a way of sloughing off the Christian responsibility to share each other’s loads: if God won’t give you what you can’t handle, then I don’t have to help. You should be able to handle it. The truth is, however, that God does allow things into our lives that we can’t handle. 2 Corinthians 1:8-9 says, "we do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure; far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us." Adverse circumstances teach us to cast our burden on God, and then we find we can handle it – but only with His help.

"Will he ever outgrow these allergies?" I realize this probably seems like a perfectly sensible question to someone uninformed about food allergies. But it's like asking someone with cancer, "Is it possible you'll be cancer-free someday?" We would never ask that because we know the outcome is uncertain. It also implies that what you're struggling with today is insignificant because it might be gone tomorrow. No one knows if any one child will outgrow his/her food allergies. The doctors can quote statistics with percentages, and I in turn can share those statistics with you, but there's no way to tell which side of the statistics Little Dude will fall on. I certainly hope there is a future where he can eat whatever he wants, but honestly, I can't see that far. Right now I'm focused on today, what he can and can't eat and how we're going to cope with all our food-centered activities.

"Have you tried (fill in the blank food)?" I spend all day most days thinking about foods to try and ways to make sure Little Dude is included in food-related activities. Trust me, we've tried it.

Here's what you do say (please!): "I'm sorry." "That must be tough." "I'm praying for you." And leave it at that! If you must go further, say "Tell me about it" and then listen when I talk. Don't preach, don't judge, don't quote Scripture at me; just listen. That would make a big difference to this mom's heart.

.

Gratefulness

2010-10-15T07:16:00.001-07:00

I've been reminded today that I should be grateful for what God is giving, instead of focusing on what He isn't. So I've been thinking of the good things that have come through our journey in food allergy crazy land, and the primary one is gratefulness. We have developed a profound sense of gratefulness for what we have today, knowing it might disappear tomorrow.

Over the summer Little Dude was able to eat store-bought bacon. I didn't even blog about it because I knew it probably wouldn't last, and sometimes my friends take it harder than I do when we lose a food! All summer my house smelled like a greasy diner, my stove was constantly covered in grease, and my pajamas reeked of lard. But none of that mattered because every breakfast was like a little party for us -- a bacon party! Little Dude put on two pounds, a HUGE deal for his scrawny frame, and he was so unbelievably happy every single morning to see bacon strips on his plate. I was very sad when Little Dude stopped eating it and eventually announced that he didn't want bacon anymore. (I already knew it was bothering him, but it wasn't that bad, so I let him call the shots on it.) But we have wonderful memories, and maybe we'll be able to add it back in someday.

So right now I'm really mourning the loss of chocolate. And especially the fact that every time Little Dude wishes he didn't have food allergies (which is more and more often), my stock reply was, "Me, too. But at least you're not allergic to chocolate!" At which he would always perk up, smile, and say "Yeah, I can eat chocolate!" Really kicking myself for that one right now. But, it was a good way to focus on what we do have; I just have to find something else we can focus on now that chocolate is a food of the past.

For today, I'm going to be insanely grateful for every single thing Little Dude can eat. I keep wondering where this road is headed, since the science indicates we should be outgrowing these allergies but we just aren't. Where is God taking us? I guess there's no telling, but I know He'll get us there in His good time.

Chocolate

2010-10-11T11:56:00.001-07:00

For the past week Little Dude has been suffering severe belly pains. He woke up at night, several times a night, for several days with them. We were all exhausted. Matt and I were emotionally battered from watching our kid curled up in a fetal position crying. Finally one night Little Dude slept through the night. I kept reviewing the foods he had eaten, and more importantly, hadn't eaten that day, and realized he had not eaten chocolate that day. We took him off chocolate for two days; no belly pain. Gave him three small pieces on Saturday; he was awake that night and had belly pain off and on all day Sunday. We will try it a few more times to confirm, but I am really depressed thinking he might have developed an allergy to chocolate.

We order Little Dude's chocolate from Amanda's Own, and Little Dude just loves it. We order different shapes for each season, and he always looks forward to seeing the new bags. He gets chocolate for dessert after meals, for treats if the kids at school/Sunday school are getting a treat, and just for fun. What will we do without chocolate?

To Blog or Not to Blog?

2010-09-25T08:51:00.001-07:00

I haven't written on here in a looong time, in large part because of the following quote by St. Therese of Lisieux:

"The more private suffering is, the less evident it is to the eyes of created beings, the more it makes you glad, God."

This led to some soul-searching on my part. Why do I blog? How much of it is the inner 5-year-old saying "Look at me!" (we hear that phrase a lot around our house) and how much of it is a genuine desire to share our journey and the latest news? And can you separate the two? Is there a difference between complaining and sharing what God is teaching us through the struggle? Because you have to share the struggle in order to share the lesson. But maybe the lesson is just for me, and doesn't have any meaning for anyone else.

I don't know what the answer is on this one. But I know writing this blog helps me focus on what God is doing, rather than the day-to-day struggle of our food allergies. So . . . stay tuned, I guess.

Rice

2010-05-04T12:12:00.000-07:00

We finally met with the doctor last week. I won't even go into that other than to say I really, really, really don't like this allergy doc. Enough said.

The doc said that in trying new foods we should give Little Dude at least one serving a day, up to as much as he wants, for two weeks or until we notice a reaction. We had been giving him a serving of rice pasta every other day, but after the appointment we upped it to every day, plus rice milk (homemade) and rice ice cream (homemade from the milk). Little Dude developed horrible stomach pains -- he was writhing in his bed unable to sleep -- and some small bumps on his face and back.

The numbers on the rice were borderline positive, so the reaction isn't that surprising. Still disappointing, though. Now we're on to bananas . . . .

Skin Testing

2010-04-09T09:16:00.000-07:00

It is once again time for the annual testing, and our new allergy doc really did not want to do the RAST, which involves a simple blood draw. Oh, no, we had to do the skin testing. I guess if I were an allergist I would understand the difference, but from where I sit it all seems to be witchcraft that doesn't accomplish much. Anyway, Little Dude did amazingly well during his 10 days without antihistamine. We were definitely struggling there at the end, but it was not nearly the ordeal it has been in the past.

We did the actual skin testing yesterday, and they tested for more than 40 foods. Little Dude's tiny arms had 3 rows of pricks each. I basically had to hold him down while they did it, which is horrific to me. Then I had to keep him from itching the ones that were forming large whelps. Awful.

All that to discover that yes, he is in fact still allergic to milk, casein, wheat, peanut, pecan, black walnut, English walnut, soy bean, beef, chicken, green beans, almond, lamb, turkey, broccoli, cucumber, green beans, lettuce, and onion. I'm doubly frustrated that they tested for all those stupid tree nuts. Tree nuts are easily avoided, and even if he tested negative I wouldn't give him any because of the cross contamination issues. Meanwhile that cost us 5-6 extra pricks which could have been avoided. Grr.

The good news is he tested negative to cod (hello!! Am I going to give this hyper-allergic child fish?), Brazil nut (another tree nut), apple, apricot, banana, blackberry, blueberry, lemon, cherry, orange, peach, plum, strawberry, corn, garlic, olive, pea, tomato, barley, buckwheat, spelt, and rice. We are very excited about all the fruit possibilities, since that is something Little Dude really wants to eat. I think he may have an intolerance, if not a true allergy, to corn (it makes him manic hyper), so we'll probably tread lightly on that one. But rice conjures up all kinds of wonderful visions of milk, ice cream, and pasta! How awesome would that be?!

We're not really supposed to try any new foods until we meet with the doctor again on April 28th, but we justified the horror of the skin test by telling Little Dude we were going to try some new foods, and he is ready to try them now. So we will probably let him try some fruits over the next few weeks and see how he does. I already promised him a banana when he comes home from school today. Here's hoping . . . .

Chronic Esophagitis

2009-12-11T07:30:00.000-08:00

This is our newest diagnosis. Last Friday Little Dude had a throat scope. We were actually checking for eosinophillic esophagitis, a throat condition often seen with multiple food allergies. We are very thankful that Little Dude does not have it!!

But, they did find chronic esophagitis, which, as I understand it, is inflammation of the esophagus that has been going on for a long time. Our wonderful GI doctor (seriously -- I wish all our pediatric specialists were like Dr. Donovan!!) thinks Little Dude probably has acid reflux. We had suspected this, and even tried him on Zantac at one point, but he had an allergic reaction to the Zantac and we didn't pursue it any further. Dr. Donovan prescribed Prevacid. There are a lot of corn derivatives in it, but we're going to just try it and see if Little Dude can tolerate it. If not, the pharmacist has already told me he can compound it for us.

Maybe, just maybe, if we can get the acid reflux under control we can expand Little Dude's diet!

Fresh Side

2009-09-28T11:46:00.001-07:00

Thought I'd share the sight that has been greeting me every time I open the fridge. Yes, it is a side of pork, skin and all. Totally disgusting. We rendered part of it into lard to use with baking and frying for Little Dude, and we cut part of it into bacon. The skin we cut into little pieces and fried into pork rinds. Unfortunately, the first night Little Dude ate 3 pieces of bacon and several pork rinds, and spent the night writhing with a terrrible stomachache. We're hoping there's something on the skin from processing (they've got to remove the hair somehow) and maybe he can eat the bacon and lard. Haven't tried it again yet.

I can't believe we're making homemade pork rinds and lard. Of all the things I never thought I'd do!

Allergy Shots

2009-09-18T08:14:00.000-07:00

Little Dude and I have been on allergy shots for awhile now. We started in Arkansas, where he started getting one shot twice a week for a few months, and then progressed to just one shot a week. The allergist here in Oklahoma insisted on retesting him for everything, and now we're having to get three shots once a week. (My allergist was going to give me two shots once a week, but I told him if Little Dude was having three I needed to get three too. Lucky me.)

Little Dude was doing great with the shots in Arkansas; he didn't like it, but he didn't cry or put up too much of a fuss. We always brought a chocolate for him to have once it was over. Three shots, though, has just put him over the edge. The first few times he cried hysterically and we had to hold him down to get the shots done. He's gotten better, but he still "hides" from the nurse behind the couch in the waiting area, and tells me over and over that he doesn't want a shot. (Me either, kid!) On top of that, he's usually pretty itchy for two days afterward.

This clinic gives out lollipops to the kids after their shots, but of course Little Dude can't have them because of the corn syrup. He was pretty envious of the other kids, though, so I've bought a mold and we're making chocolate lollipops from his chocolate chips. That seemed to help him cope more than anything else.

How It All Began

2009-09-16T12:02:00.000-07:00

Another question I get all the time is, "How did you figure this out?" Well . . .

We knew by the time Little Dude was one week old that he had a problem with milk, and we switched him to soy. That improved things tremendously, but he was still rashy all the time. He had the worst baby acne and cradle cap my husband (a pediatrician) had ever seen. He would cry inconsolably for hours on end. Unfortunately, his symptoms did not match what medical professionals are taught to associate with food allergy, so we didn't think the formula was a problem.

As he got older, we tried solid foods one at a time. At nine months I gave him chicken noodle baby food, his first exposure to wheat. He broke out in these itty bitty red dots all over. No whelps, no swelling, just little dots. The second time we tried wheat I gave him half a jar of baby food spaghetti. I didn't notice anything amiss as he was eating, and he went down for his nap as usual afterwards. About half an hour into his nap he woke up screaming bloody murder. This was not unusual, so I went in and picked him up to rock him back to sleep. As I was rocking him, I ran my hand up and down his back. It happened to go under his shirt, and I noticed some bumpiness. I threw on the light and discovered that my baby was covered in whelpy hives.

I knew nothing about anaphylaxis. What I should have done was give him the max dose of Benadryl and call an ambulance. What I did was give him the normal dose of Benadryl and call his pediatrician's nurse. (I couldn't get hold of my husband.) The nurse told me that unless he was having trouble breathing I should just stay home and wait for it to wear off. (This was completely WRONG advice!) I didn't think it sounded like such a great idea to wait for him to have breathing issues and then try to get him to the ER, but I didn't want to be the hysterical doctor's wife so I did what she said. I took pictures and emailed them to my husband in hopes that he would call me. While I waited, I sat on the couch with my hands on Little Dude's chest, feeling every single breath go in and out. By the time my husband called, the reaction was completely gone. He was very upset that I had been told not to go to the ER.

That was the beginning of our saga through food allergies. We knew from this experience that Little Dude was allergic to wheat, but they tested him for all eight major food allergens(peanut, tree nut, soy, wheat, egg, milk, fish, shellfish), and he came back positive to all of them. We switched him to Nutramigan formula, which completely transformed Little Dude's personality and our lives! The hours of crying disappeared; the cradle cap disappeared.

The rest of the allergies have been discovered one by one over the years. Sometimes we have been able to add in a food for awhile, but the allergies always seem to come back over the long term. The doctors continually tell me he will outgrow them -- the last edict was "sooner rather than later," but we don't count on that anymore. Little Dude is just as God made him, and any healing he receives will be in God's perfect timing, not ours.

It's been a long journey, but God is faithful to journey along with us.

What We're Eating Now

2009-09-14T11:52:00.001-07:00

A lot of people ask me, "So what does he eat?" In answer to that question:

Pork -- He has to have fresh pork with no preservatives. We make homemade sausage (storebought all have corn in them). We are trying to find a source for "fresh side," which we could then cure into bacon. We used to make pork tenderloins and such, but our foods have become so limited I don't really have a way to cook them anymore and make it tasty.

The homemade sausage contains non-iodized salt (the iodized version contains corn) and McCormick brand pepper, ginger, marjoram, and sage. (My research shows that McCormick spices do not contain corn cross contamination, and we have never had a problem with them. We have learned to stick with what has not caused problems!)

Potato -- We fry diced potatoes in leftover sausage grease! Little Dude does not gain weight easily, so we are constantly trying to add fats to his diet.

Kettle Unsalted potato chips -- This is new one, as of this summer, and we are very excited about it! Little Dude loves being able to eat chips!

Oats -- We only use Quaker oats, as we have never had any cross-contamination issues with them. We make oatmeal with McCormick cinnamon and brown sugar (C&H brand pure cane sugar to avoid beet or corn sugar additives) in the morning. We also make oatmeal pancakes with quick-cook oats, as well as muffins and cookies with oat flour we grind ourselves from the quick-cook oats.

Minute Maid snack size raisins -- I read on a corn-free blog that this is the only size raisins that do not have corn contamination, so this is what we try to use. Little Dude has had the other sizes on occasion, though, and I've never noticed a problem. But, who knows.

J.W. Knudsen Just Concord grape juice -- This is the only juice Little Dude can drink. He can't have juice made from concentrate because they invariably add corn.

Right now we are using Spectrum olive oil in the muffins and cookies. Little Dude has had problems with olive oil in the past, but it seems alright as long as limit the intake.

Amanda's Own chocolates -- Love these! They are simple molded chocolates, but they are the only kind Little Dude can have. They offer lots of seasonal shapes, which make fun gifts on holidays.

Chebe cinnamon roll mix -- I just found this. It's made with tapioca flour. It does seem to bother Little Dude if he eats too much of it (and he loves it), but that may be the olive oil again. We are thrilled to have cinnamon rolls for him! We make icing using Miss Roben's corn-free powdered sugar and water, at least until we run out of the Miss Roben's.

As mentioned previously, we were eating Miss Roben's chocolate cake mix and icing mix, but they have gone out of business. I have six pieces left. My husband is determined to recreate the mix with scratch ingredients, so hopefully he will succeed! This summer we were able to eat chicken some, but now his nose starts running after just one bite. We have tried our hardest to find preservative-free, contamination-free chicken, but you never can tell. We don't know if it's the chicken or something in it.

So, there you have it -- a complete list of what Little Dude eats. Bon appetit!

Chocolate Cake Mix

2009-08-26T11:20:00.000-07:00

I have just found out that the company we buy chocolate cake mix and chocolate icing mix from (Miss Roben's) has gone out of business. I have searched the web and can't even find one left at any of the food allergy sites. Little Dude loves eating his chocolate cake; it's what we make for his birthday each year. I always have some made and frozen so he can take it to school for classmate birthdays, plus we use it for family birthdays as well.

How do I explain to a four-year-old he can't have chocolate cake anymore? I would make it myself but I haven't even been able to find a tapioca flour (the main ingredient) that Little Dude doesn't have a reaction to, just from cross contamination in the factory. I just don't know what I'm going to do.

More school adjusting

2009-08-21T11:57:00.000-07:00

We are still trying to adjust to the new school schedule, and especially to eating in the cafeteria. Every time I go eat with Little Dude I leave with stomach pains. I sent my husband to eat with him today and he left with stomach pains, too! I was relieved that I'm not just being totally overprotective and emotional about it. The other children just don't understand (and why should they?) that food could hurt Little Dude, and being four, they're very messy eaters. Last time the little boy on one side of Little Dude was waving his peanut butter sandwich all over the place. He was excited because his mom had cut it in the shape of an elephant -- very cute, but just eat it! Don't wave it! The little boy on the other side was eating a school lunch (beef tortilla)and getting it everywhere -- all over the table, the seat, his hands and face. It was a mess.

So, my husband and I are brainstorming some possible ways to keep Little Dude a little safer in the lunchroom. For right now I will be going up there every day that he is in school. We are hoping to convince his teachers to sit him on the end of the table so he only has one kid beside him, and make sure that kid isn't eating peanut butter. The question is, will that be enough? Can we really trust that he'll be ok when he's surrounded by four-year-olds who just don't have the ability to eat neatly?

I am reminded (again) that God has not asked me to be make sure that everyone likes me. He's given me this boy to take care of, and my mission is to do that, and if people get mad at me for making too many demands, that's not my problem. It's just so hard when we have this inherent desire to be liked, to be highly regarded. I want to be nice, not demanding! And yet this is the role I have been given.

Why

2009-08-17T07:13:00.000-07:00

Every time I am besieged by the "whys" -- Why this little boy? Why me? Why can't he outgrow just one of these allergies? Why isn't it getting better? I remember (or try to) these verses, as interpreted in The Message:

"Walking down the street, Jesus saw a man blind from birth. His disciples asked, 'Rabbi, who sinned: this man or his parents, causing him to be born blind?' Jesus said, 'You're asking the wrong question. You're looking for someone to blame. There is no such cause-effect here. Look instead for what God can do."

OK, Lord, we're looking.

First Day of School

2009-08-14T11:06:00.000-07:00

Little Dude started at his new preschool today, and I am fighting back the panic attacks! He is attending school three days a week, but it will be a full day, 8-2:45, with lunch in the cafeteria. This is what I've been dreading since he was diagnosed with food allergies more than three years ago.

The school is very parent-friendly, and they allow parents to come eat with the kids anytime, so I am planning to eat lunch with Little Dude until we are both comfortable. I went to eat with him today, and I am glad I did. The teachers have to help the four-year-olds open their food, and so a lot of food was passed over Little Dude's head and tray. A cinnamon roll (thankfully, still wrapped in the cellophane) got dropped on his tray, and a neighbor's applesauce sprayed everywhere, including all over Little Dude's food, when it was opened. He had finished at that point, but he was a bit unnerved by it, and so was I. We'll have to discuss all this with his teachers and see if we can't make sure food is passed around, not over, Little Dude and his tray.

The good news is, he seemed to be having a pretty good time at school. Another little boy had a Lightning McQueen lunch box like Little Dude's, so they hit it off and talked together through lunch. I have to remind myself that's why we're doing this. He is so social, and he loves being with other children. If we can get the cafeteria under control, I think he will really enjoy being in school.

Moving

2009-06-27T08:26:00.000-07:00

I haven't posted for awhile because we have been in the process of moving. And if moving by itself isn't enough of a challenge, try moving with food allergies!

We had a three day move -- one day of packing (movers, thank heavens, not me!), one day of loading the truck, and one day of unloading. Luckily our fridge stayed with the original house, so we were able to leave Little Dude's food in it while we were still there the last two days. Then we threw it all in a cooler and brought it to my in-laws' fridge until our fridge at the new house was delivered. To make sure we'd have enough food to last awhile, we made a double batch of sausage and froze it.

Once we got here, we had to find a new source of preservative-free pork and chicken. (Yes, we're pretty sure the chicken is ok! Hooray!) We made a new batch of sausage, but Little Dude kept having these random reactions. It didn't seem to correlate to what he was eating, but we didn't know what else to blame it on. Finally, this week, we discovered teeth marks in the sheetrock around his window and on the footboard of his bed. So we think that's probably why he's been having all these random reactions. So frustrating! You wouldn't think you would need to tell a child not to chew on the wall!

We did some research into pica (what it's called when children eat rocks or non-edible objects) and found it could be the result of a vitamin deficiency. Given Little Dude's very limited diet, that was a real possibility, so we got him tested just in case. He came out normal. So, we're assuming the chewing was the result of stress from the move. But who knows. We've repaired the damage and explained that chewing sheetrock or wood is not acceptable behavior. Sigh.

Farm Friends

2009-04-23T12:19:00.000-07:00

This morning Little Dude went with his preschool to an event called "Farm Friends" at University of Arkansas. The kids get to see lots of animals up close, pet them, etc. I was pretty worried about it with our allergy issues, but I hate for Little Dude to miss out, so I loaded him up with Benadryl in advance and went along to keep an eye on things.

The first exhibit was a cow in a special trailer that had a milking machine set up to show the kids how a cow is milked. The man doing the demonstration started by asking the kids, "Do you like milk?" and all the kids cheered "YEAH!" -- all except for Little Dude. Then he went on and on about how good milk is for you and it helps you grow and you should drink 3 glasses a day. About halfway through his spiel Little Dude looked up at me, his face all crumpled and ready to cry because he can't drink milk and clearly he's missing out. So I comforted him as best I could and said he could still watch the cow get milked and that would be neat even if he can't drink it. He threw me a pouty face, sat down on the gravel, and absolutely refused to even glance at the cow during the demonstration. Off to a good start.

Once we got into the barn, the exhibits were mainly baby animals for the kids to pet -- ducklings, piglets, chicks, calves, and so forth. Little Dude enjoyed petting the animals, and that was fine. Then we came upon some guinea hens, and the man in charge had a guinea hen egg he was letting all the kids touch. Of course I didn't see it in time to physically grab Little Dude, so I was yelling "Don't touch that!!" as I was trying to get to him. Little Dude reached out and touched it just as I got there. Well, there's no running water in the middle of a barn so I got the Germ-X out of the first aid kit and we washed his hands with that. I spent the rest of the time watching him closely for signs of a reaction. Apparently I embarrassed Little Dude, too, because he did NOT want to sit next to me on the bus ride back to school.

Now I'm left to wonder if I should have just kept him home. Is it better for him to realize he's different and get used to it now, and at least have the experience, or should I keep him home until he's a bit more responsible about it?

RAST results

2009-04-16T13:00:00.001-07:00

Yes, the results are in. Actually, we got the results about a month ago, but I have put off posting about it because it seems so irrevocable once it's in print. But, here goes.

We got a lot of things tested this year because there were several foods that seemed to be causing problems but we just weren't sure. I guess the good thing is, now we're sure! We've added blueberry, broccoli, cucumber, olive (oil), and palm oil to our "bad" list. We think green beans are also bad, but apparently they ran out of blood (SIX vials later!) and didn't test it.

We also tested some random things just to see if we could possibly try them -- goat milk, barley, and chickpea -- and found that no, we can't. Spelt (an alternative grain for folks allergic to wheat) tested as a class 1(very low allergy), but we have tried it and he has a definite reaction to it.

His major allergies (wheat, egg, soy, milk, peanut, tree nuts) have stayed mostly the same instead of getting worse. And his egg allergy has actually improved from a class 5 to a class 4. We'll take what we can get!

The best news is that his chicken allergy was totally negative! Now we have the challenge of getting him to eat it, but at least we know that it really shouldn't cause a reaction. Plus his beef was down to a class 2, so we're hoping maybe he'll be able to eat beef once a week or something. Hamburgers here we come!

J is for Jelly

2009-02-26T08:08:00.000-08:00

I got a note from Little Dude's preschool last week that they would be sampling jelly this week as part of learning about the letter J, and could I send some jelly for Little Dude? I can't even explain the tizzy this sent me into. No, there is no jelly Little Dude can have. So now I have the option to a) let him feel left out during an activity all the other kids are doing, or b) keep him home from school for a day. I don't like either option.

I spent Sunday afternoon at the health food store trying to find a jelly he could possibly eat. The problem is that fruit pectin, the ingredient that makes jelly, well -- jelly, is made with apples or citrus fruits, all of which Little Dude is allergic to. Needless to say, there was no jelly he could have.

Finally, on the way home from the store, I had a brainstorm. What if we added hot grape juice to oat flour and let it thicken? I tried it, and VOILA!! It looks terrible, but it does actually taste like jelly.

Three days of near panic later, I find out that it wasn't actually a group activity. The teacher is doing the jelly activity with the children individually, and if they don't want to do it, they don't have to. Sigh. That would have been good to know in the beginning. But, now he has a jelly, and he can participate if he chooses.

It's the simple things like this that just get me down. Why can't we do J for jumping, or jacks, or ANYTHING else that isn't food related? I love Little Dude's preschool, don't get me wrong, and they have gone to great lengths to keep him safe. But it seems like this activity could have so easily been changed so that all the kids could participate equally.

Funny Story

2009-01-08T11:40:00.000-08:00

We received our samples of Nutramigen AA and Enfamil 3232A before Christmas, but didn't get a chance to try them until after the holiday. We spent the week after Christmas with a sick Little Dude. Six ounces of Nutramigen AA made him sick for four days (whiny, irritable, clingy, itchy, miserable). I let him watch a little more TV than usual in order to retain my sanity, but I told him we were only watching extra TV because he was sick. He finally started feeling better, and we enjoyed two days of being happy and healthy before trying the 3232A. That seemed to make him sick again, although we will probably try it again just to make sure. Anyway, he got to watch a lot of TV last week!

This week, we've been trying a new dried mango snack. He's been on it for 3 days with no problems, so we think it's probably ok. He was eating some at lunch today and informed me that the mangos were making him sick. I asked him why he thought that, and he explained that if he was sick he could watch TV, and since the mangos were making him sick he needed to watch more TV after lunch. Waaay to smart for his own good. Needless to say, he ate all the mangos and doesn't seem to be having a problem with them.

Allie the Allergic Elephant

2008-12-12T13:04:00.001-08:00

The above is the title of a book I bought Little Dude that explains food allergies. He's had it for about a year, and has never wanted to read it before, but in the last few weeks we have read it several times. Allie is allergic to peanuts, which is difficult for an elephant! The book goes through everything that happens to Allie if she eats peanuts, and talks about how she feels being different from all her friends. I especially like that Allie has to learn to say "no, thank you" if someone offers her peanuts, and it explains that sometimes Allie's friends may offer her something to be nice, but she still has to say "no, thank you." I don't like that it talks about all the foods Allie can eat that don't contain peanuts (with pictures of said food), because Little Dude can't eat most of the foods mentioned. I usually skip that page!

Anyway, we have been reading this book a lot. Recently Little Dude got out his Fisher-Price Noah's Ark set, and both elephants are named "Allie," one for him and one for me. We play school with all the animals, and at snack time both Allies have to say "no, thank you" when offered a peanut snack. I guess this is Little Dude's way of processing being different at school. His teacher told me that he made a point of telling her he couldn't have the apples everyone else was having on Thursday. (He gets a cookie, the other kids get apples -- he doesn't have it that bad, if only he knew!) Still, it makes me sad . . . and proud. I wish he didn't have to deal with all this, but at the same time he deals with it so well for a 3.5-year-old.

The continuing saga of the milk alternatives

2008-11-07T12:58:00.000-08:00

We have spent the last two months confirming that yes, Little Dude is definitely allergic to Nutramigen. He is also allergic to Neocate. And he can't even take one Tums a day for a little calcium supplement. Now what?!?

The next step, apparently, is prescription formula. I didn't even know such a thing existed! But yes, there are formulas you can only get with a prescription from your pediatrician. (Luckily we have some connections in that department!) We have made some phone calls and are now waiting on free samples of Elecare, Nutramigen AA, and Enfamil 3232A. (I guess they ran out of creative names and just started giving them numbers!) I'm not holding out a lot of hope for the Elecare and Nutramigen AA, because their ingredients are very similar to regular Nutramigen and Neocate, which we know he can't tolerate. I'm not really looking forward to trying these, since I'm 99% sure they will make him sick, but from a medical standpoint we need to try them first because they're more nutritionally complete. Plus they're probably cheaper. Enfamil 3232A is made primarily with tapioca starch and looks, from the ingredient list, like it might be ok for our Little Dude. It is actually meant to help infants who can't digest carbohydrates properly -- go figure. It probably costs an outrageous amount of money, but we're hoping since all of these require a prescription that we can get them covered by our insurance.

We've probably got several more weeks of sickness ahead of us before we get this straightened out, but maybe at the end of it we'll have a "milk" for Little Dude. He is really missing drinking his milk. I figured he would love drinking juice and water, but he told me yesterday he wants milk to drink. Nutritionally, he definitely needs all the vitamins and minerals that he only gets from formula, especially the calcium.

It's just one challenge after another here in food allergy crazy land!!

2008-10-13T11:11:00.000-07:00

Today Little Dude and I were reading his new Clifford book about the runaway rabbit. I told him he could watch an episode of Clifford on TV while I fixed his lunch, and he said he wanted to watch the one with the runaway rabbit. I explained that I can't control what episodes PBS decides to air, but we would see what was on today. The description on the DVR said "Cleo gets jealous," so I turned it on for Little Dude and he settled in to watch. As the second half came on, Little Dude came running into the kitchen yelling, "Mommy, I do want you to come here for a second!" I took his hand and followed, and he ran to the TV to show me -- the rabbit episode. Now what are the odds?

As I mulled it over while cooking, I realized this happens to Little Dude quite a lot. One morning this summer he told me he wanted to see a "BIG" orange butterfly. It was long past butterfly season, but I told him we'd look for one. Sure enough, when we went to play outside, an absolutely huge orange butterfly came flying around the driveway where Little Dude was playing. Another time we were driving and we saw a red Mini Cooper on the road. (Little Dude loves Minis; I don't know why.) He decided he wanted to see a green Mini Cooper. I tried to discourage him, explaining we probably wouldn't see another Mini Cooper that day, since we rarely if ever see any around here. But sure enough, as we drove further down the road, we saw a green Mini Cooper.

Maybe these are all coincidences, but I'm choosing to see them as answered prayers of a sort. It's so encouraging to me to remember that God cares about all our little desires, and there's nothing we can ask for that He can't provide. Our big prayers for new foods seem to be on hold, but God is still working, still loving us, still sending us little reminders that He is bigger than our impossible requests.

". . . with God all things are possible" Matthew 19:26b

Maturity

2008-10-10T17:37:00.000-07:00

I just had an interesting conversation with Little Dude while he took his bath. Out of the blue he said, "Mommy, I don't want foods [that] make me sick." I was kind of caught off guard, and said something about how I thought that was a smart decision. Then he added, "Hudson [another kid he goes to school with] said 'You want some?' and I said "No, thank you! I don't want food makes me sick." I'm assuming this must have happened at school on Thursday. Little Dude related the whole story in a sing-song voice like it was no big deal. Meantime, I'm trying not to cry while I tell him emphatically what a smart boy he is and how proud I am that he didn't eat that food. Is it just me, or do I have an exceptionally mature 3-year-old? I'm so glad he's taking it all in stride, but at the same time I so wish he didn't have to.

Nutramigen Woes

2008-09-23T17:58:00.000-07:00

I haven't been writing because the past few weeks have been pretty tough. Little Dude is waking up every night screaming in pain, and so far we have cut out palm oil (Spectrum shortening, that we were using to fry his potatoes), vanilla, maple syrup, and honey. We knew the palm oil was an issue because he abruptly stopped eating it. The others are educated guesses, based on what he won't eat more than once. Today, however, I discovered the underlying issue. Nutramigen infant formula, of which Little Dude still drinks 18 ounces daily, is made of 44% palm oil.

Unfortunately, we can't just cut it out because that is his sole source of calcium and most of the vitamins and minerals growing kids need. The only other option is Neocate, a different formula made especially for kids like Little Dude, but without the palm oil.

I don't often discuss the cost of food allergies, because I know we are blessed financially and therefore I shouldn't complain. But just give me a moment. Nutramigen is currently $200/month. Neocate, assuming he will still need 18 ounces daily, will easily double that amount and may even triple it, depending on which formulation he needs. (I hope he can tolerate the "cheap" one!) Yes, we can afford it, but who wants to spend that much on MILK? (And you thought you were paying too much for cow's milk, didn't you?!!)

OK, the moment has passed. The bottom line, of course, is that we would do absolutely anything to help him feel better. So hopefully Neocate will solve the problem and we will rearrange our budget as needed to make it work. As usual, I'll keep you posted.

Preschool

2008-09-03T12:06:00.000-07:00

Little Dude started preschool yesterday, and I am very happy to report that we experienced no problems on his first day. The preschool he is attending comes highly recommended by quite a few of my fellow food allergy moms as well as by Little Dude's allergist, who serves on the board. They have done a wonderful job of trying to create a safe environment for food allergy kids.

The entire preschool (one hallway of a church, but the classrooms are only used by the preschool) is peanut-free, although that doesn't help us all that much. All the kids have to wash their hands before entering the classroom. Inside the classroom, I was given total access to all the craft supplies used and allowed to veto any that might cause a problem (and they didn't even fight me on anything!). I bring Little Dude's snacks, and he sits at the end of the table with just a little bit of extra space between him and the other kids. After snacks, all the kids wash their hands again and the tables are washed as well.

The danger still exists that he could grab a snack from someone else and eat it, but we have done our best over the summer to teach him that he only eats what is given to him to eat. He certainly understands when we explain that a food will make him sick, so we've tried to emphasize that the foods the other kids eat at school will make him very, very sick. (Ambulance rides are BAD.)

He says he likes school, so hopefully we can keep him safe. He's such a social little boy, I think preschool will be really good for him. He loves being with other children.

Another step back

2008-09-01T12:06:00.000-07:00

We tried chicken again (no preservatives, no additives, no corn-enhanced foam tray liners to catch the liquid, just pure fresh-from-the-farm chicken) and Little Dude's chin turned red and he started to scratch. Sigh.

I really don't understand how he could go three weeks eating a little bit of chicken daily and then bam, have a reaction to it. But I plan to discuss it with the allergist next time we go.

Two steps forward, one step back

2008-08-22T12:41:00.000-07:00

I've been putting off writing about this, because it is just too depressing. We can no longer eat the hot dogs. Little Dude spent two weeks rashing and itching and cranky. At first I thought it was the pool chemicals, since it coincided with our week of swim lessons. But the symptoms continued after the swim lessons stopped, and eventually we figured out that the last package of hot dogs must have contained something the others didn't. On the bright side, I don't think it was the chicken; I'm really hoping it was cross-contaminated with something at the factory. But we're steering clear of chicken, too, for the time being.

The other bad news is that he seems to have developed a pear allergy. I've been frantically trying him on snack foods trying to find something "normal" he can eat at preschool for a snack. He had stopped eating fresh pears, but I thought since they were going out of season the taste might not be as good. Then we tried him on a pear bar last week and quickly figured out that pears are no longer a safe food. SO frustrating. We're down to blueberries as the only fruit he can have.

This seems to be the way it goes. For every food we add in, we lose another. We do have a long list of fruits to try, though, so maybe we'll be able to add something else. I'm trying, trying, trying to be optimistic!

2008-07-31T12:24:00.000-07:00

Little Dude surprised us last night by announcing, "I feel little bit sick. I ride in ambulance, go to hospital." We explained that riding in the ambulance is something you do if you're very, very sick and it is not a fun experience. He wasn't convinced.

This morning he wanted to give the dog a treat, and I said no, because it could make him very very sick. (Most dog treats are wheat-based, and therefore potentially deadly for Little Dude.) I had completely forgotten about our ambulance conversation yesterday, but not Little Dude. He perked up and said "I get very very sick, I ride in ambulance, go to hospital!" Then he added, "I ride in ambulance, I go 'WHEEE!'" Clearly we failed to make our point.

So, the dog treats have been moved to a higher location where Little Dude cannot reach them. I am still trying to explain that an ambulance ride is not fun, but I can tell he just doesn't believe me. Lights, sirens, driving fast -- what's not to like, after all?

CHICKEN!!!

2008-07-22T11:39:00.001-07:00

I hesitate to write this, because I am scared that Little Dude will suddenly develop a problem, but it would appear that Little Dude has outgrown his chicken allergy! Praise God!!!

Little Dude has been obsessed with hot dogs this summer, ever since he saw a Clifford episode where they dressed Clifford like a hot dog for a parade. I bought a very simple beef hot dog for him a few weeks ago, but he ate one bite and wouldn't eat anymore. He kept putting it in his mouth and then taking it out -- he wanted to eat it so badly but he knew it would make him sick. No surprise, as the beef numbers are still pretty high.

Last week I found a chicken hot dog with minimal ingredients, so I thought we'd try it. When I put them in the cart at the store Little Dude could hardly contain himself. He gave me a big grin, started wiggling, and said, "I like you." It was pretty cute. We tried them that day for lunch, and he ate two in no time at all. The next day he ate four, all in one sitting. He's had them every day for lunch since, and I haven't noticed any allergic reaction.

The next step is to try "real" chicken. Unfortunately, Little Dude is convinced he doesn't like chicken, so it will be a challenge. (I didn't tell him the hot dogs were chicken-based.) The first time we tried chicken, at age 18 months, Little Dude had a stomach virus and spent the entire night throwing it up. I guess I can't blame him for having an aversion to it! If we could convince him to eat it, though, then we could actually eat as a family on a regular basis.

Food allergies stink in so many ways, but I am glad that our family has a constant reminder to find joy in simple things. I would never have imagined that I could experience such overwhelming joy and thankfulness for a hot dog!

Update

2008-07-17T11:37:00.000-07:00

The latest RAST tests were again disappointing. Wheat and milk have gone down a little, but everything else they tested (egg, soy, peanut, corn, and rice) have gone up. Little Dude's total IgE (a measure of how allergic he is in general) has also gone up. But, you just have to look at it as nothing has changed. Our daily lives have not gotten worse or better, so it really doesn't matter.

The skin testing showed a very bad birch allergy, which may mean hope for Little Dude's many fruit allergies. Birch trees cross pollinate with pitted fruit trees (apple, apricot, etc.) and the fruits can retain enough birch to cause a reaction in those allergic to it. However, the allergist said if we cook the fruit the birch reaction is somehow negated. So maybe we can add a few more fruits to Little Dude's diet.

My plan was to try apples this week, and Little Dude was all excited about buying apples at the grocery store on Monday. I peeled them (to eliminate the corn-based preservative on the peel) and cooked an apple crisp. I thought Little Dude would be all over it! But, when I served it, he insisted he wanted red apples. I actually had one apple left over, so I went ahead and cut it up and gave it to him with the peel. He took one bite and stopped, but kept putting it in his mouth like he really wanted to eat it. We kept trying to redirect him to the apple crisp, but he did not want it. Poor little dude -- food allergies and 3-year-old stubbornness don't mix!

Food, Food, Food

2008-07-05T08:06:00.000-07:00

Has anyone noticed how much the preschool programs focus on food? Little Dude refuses to watch Sesame Street anymore, and I honestly believe it's because Elmo pushes apples so much. I think he felt betrayed when he tried to eat apples and they made him sick -- he stopped wanting to watch the show directly after that. (I do really like the little broccoli puppet, though!) Anthony in The Wiggles also loves food, and his favorite food is apples. They sing songs about vegetable soup, hot potatoes, and honey bars. Even Clifford has scenes with doughnuts, ice cream, and hot dogs. I had to find a recipe for doughnuts after the doughnut episode, and now Little Dude is clamoring for hot dogs. We could roll his sausage into a hot dog shape, but we have no way to make him anything resembling a bun. Walmart has big signs up now with kids eating hot dogs, and every time we go in he tells me he wants to eat a hot dog. I've been looking at children's CDs, too, and it's amazing how many kid songs focus on food. I know I can't protect him from it completely, but it's so hard to explain why he can't have the foods he sees on TV and hears about in his songs.

Quick Update

2008-06-17T12:30:00.001-07:00

We suffered through another round of skin testing last week, and the doc has given us a list of 5-6 new foods to try. I'll update you as we try them.

He also told us to try probiotics, so we've started Little Dude on one capsule of lactobacillus GG per day. Apparently this has been shown to help some kids with extreme food allergies like ours, so here's hoping!

We'll keep you posted . . . .

Quote of the Day

2008-06-06T15:31:00.000-07:00

This is a quote from one of my favorite books, The Blessed, by sharon mcmahon moffitt:

Americans "don't have much patience for people who are down and can't seem to get up. By and large in this culture, anyone ailing with the dis-ease of despair can count on getting everything from a gentle scolding to a boatload of free advice -- a plethora of aphorisms reminding her to look on the bright side. Friends tend to rush us to treat symptoms before we've given much thought to causes. Sadly, the most outspoken of all of the folks handing out free advice is liable to be a Christian. I remember finding it ironic when my friend, who had lost her son in an automobile accident, told me that she asked her husband to spirit her out of the church one Sunday morning because she had begun to lose her composure. Because her son had been dead two years, she thought people would think she was wallowing in her grief. I had two thoughts in quick succession. The first was a question, really. If you can't cry in church, where can you cry? The second was this: Christian friends do send out lots of messages suggesting a person must not be a very good Christian if she can't 'let go and let God' and do it pretty darn fast."

I've sort of touched on this subject in another post, but I just love this quote and wanted to share it. It is so true. People don't ask me how Little Dude is doing; they ask if his allergies are getting better. And I don't get the sense they really want to hear about it if I respond with the truth, that no, they are not! I can't count the number of times I've heard the platitude, "Oh, well, he'll outgrow them eventually." Yes, I truly believe he will, but that doesn't help us get through today.

I catch myself doing this with other people too -- trying to solve problems or give a quick cliche instead of really listening to their hearts. It takes time and effort to meet people where they are, to turn off the circus of thoughts going around in my head and really listen and empathize with someone else. Very hard to do, but what's the point otherwise?

French Fries

2008-05-25T12:49:00.001-07:00

Little Dude turned 3 this week, and ate his first French Fries! We bought a Fry Daddy and made some homemade fries using Spectrum Organic shortening (palm oil). They were delicious, and Little Dude loves them! I think we have a new favorite food.

We made him some fried pig nuggets too (pork chops cut up and breaded with oat flour and spices), but as you can see from the picture those were not as well received. Nothing beats French Fries!

Peeling Grapes

2008-05-08T11:46:00.000-07:00

You know you're losing just a little bit of your sanity when peeling an entire bowl of grapes begins to sound like a reasonable idea. But maybe I'd better start at the beginning.

Little Dude doesn't seem to mind most of the foods at the grocery store. The boxes and meats and processed foods have no appeal for him. When we get to the produce section, however, he just can't stand it. He wants to try everything he sees. As we walk through, we have this ongoing conversation:
Little Dude: "What's that?"
Me: "Green peppers"
Little Dude: "I like green peppers!"

We go through this with almost every vegetable and fruit, despite me practically running through, trying to grab the things we need and get out. Monday, after a long string of "What's that" conversation, Little Dude spotted the grapes. Technically he is not allergic to the grapes themselves, but in processing the grapes are coated with a wax preservative made from -- yes, you guessed it -- corn. I was worn out, and in a moment of weakness I agreed to get the grapes. It had been awhile since we've tried them, so I thought there was always the chance they've changed the wax contents. And hey, I can always peel them!

So I gave Little Dude his grapes for lunch (unpeeled -- it was worth a try). He ate two and refused to eat anymore, but kept insisting "I like grapes!" despite the red rash forming on his chin. So I knew we had a problem and gave him some Benadryl before his nap.

While he was sleeping, I began peeling grapes. I don't know if you've ever tried to peel a grape, but it's just not easy. The part by the stem comes right off, but then it gets messy and difficult. A peeler just digs into the grape itself and you end up with a little nub of grape. I peeled four grapes in a record time of 15 minutes and decided that was probably enough!!

By the time he woke up from his nap Little Dude had decided he did not like grapes and refused to even try the peeled ones, so I was saved from peeling the entire bunch.

I would have done it, though, and happily, just to add one more food to his diet.

2008-03-28T13:21:00.000-07:00

I've just spent a very depressing half hour trying to make sure the rest of Little Dude's toys are safe. In the midst of that search, I happened onto a "comedy article" written by a father whose child spit out an almond that was then ingested by a nut-allergic kid. Somehow, I didn't think it was that funny. Then I made the mistake of reading the comments and found this little jewel (quoted as written):

"Wow what a loser. Any one alergic to peanuts should really die. John you shouldn't apologise to thay kids dad, you should teach him about natural selection. Now that would make a good article."

Judging by the (mis)use of the English language, this person is not that intelligent, but it is still a very scary glimpse of the depravity of American culture. How can anyone seriously suggest letting a small child die on purpose when treatment is available? Darwin would never have endorsed that (the death of his own daughter was so traumatic for him that he became an agnostic). Besides which, to bring in the natural selection theory, this person is making the huge assumption that food allergies are solely a genetic problem. This hasn't been proven, and in fact several other theories (usually environmental) are more prominent in most articles I've read.

The bottom line, it seems to me, is that most people don't want to have to change their own behavior to accomodate food allergic children. I'm sure this person's attitude would change the minute his own child was diagnosed with food allergies.

Sidewalk Chalk

2008-03-28T12:26:00.000-07:00

Little Dude has been having allergy symptoms for several days now, and we finally figured out why -- sidewalk chalk. We hadn't given him any new foods, so I knew that probably wasn't the issue, and it finally occurred to me that we've been outside playing for the first time in several months and I just opened a new case of sidewalk chalk a few days ago. So I got online to do some research, and sure enough, sidewalk chalk is made with corn and eggshells. The mention of eggshells really startled me; I guess we're lucky Little Dude hasn't gone into anaphylaxis as a result of the chalk.

This is so frustrating. I've obsessively checked ingredients for markers and paints, but the chalk completely slipped by me. Now I'm wondering what else I've missed.

The Boy Next Door

2008-03-14T12:32:00.000-07:00

I had been hoping that once Little Dude turned 3 we could let him play in our fenced-in backyard by himself, with close supervision through the windows. However, the boy next door has made that impossible. Almost every day we have trash blowing up against our fence from next door. This little boy (6 years old) brings his snacks outside to eat, and then throws the wrapper on the ground instead of in the trash. The other day Little Dude picked up a cracker wrapper that had made its way inside our yard. I saw it happen and immediately hustled him inside to wash his hands, but what if I hadn't been there and Little Dude had licked it or put it in his mouth? Or even touched it and then put his hands in his mouth? I am so frustrated by our society, that this child's parents can't even teach him to put trash where it belongs. Their backyard is literally spotted with trash, then it blows against our fence and I pick it up. What happened to teaching our kids even the smallest amount of responsibility?

Nutramigen Ice Cream

2008-03-09T13:18:00.001-07:00

Here is our Little Dude eating his first bowl of ice cream! He still drinks Enfamil Nutramigen infant formula (in a cup) in order to get all his vitamins and minerals since his diet is so limited. My husband had the idea, since Nutramigen is high fat just like milk or cream, to try making homemade ice cream with it. So we did, and Little Dude loved it. We had just watched an episode of "Clifford, the Big Red Dog" where the ice cream machine gets stuck on and floods the dogs and kids in ice cream, so Little Dude kept telling me he was eating ice cream just like Clifford and Emily Elizabeth. He was pretty excited about it.

Annual RAST test results

2008-02-28T12:11:00.001-08:00

We got back Little Dude's RAST test results yesterday, and they were a bit discouraging. His wheat and egg numbers are a little bit better but still in the life-threatening range, while all his other allergy numbers went up. I was really looking forward to getting the test numbers back and having the opportunity to try him on some new foods. I guess we're in for another year of pork and potatoes. God bless him.

OF COURSE I love my kid!

2008-02-26T11:21:00.000-08:00

I hear moms complaining about certain traits in their kids all the time, and never think anything of it. We all have challenges of some sort, right? Yet there are certain people, that if I say anything at all negative about food allergies, respond with, "Well, I know you love him" or "You need to focus on the positive" or "You just need to love the kid God gave you." Now maybe I'm being sensitive, but this response makes me so angry I could spit nails. How dare anyone imply that I don't love my sweet, wonderful little boy? Most of what I complain about stems from my love for him. I don't want to see him hurting and sick every time we try a new food. I want him to be able to participate in birthday parties and all the normal kid things without feeling left out and different. And more than anything, I want him to live through his childhood, to survive this potentially deadly disease. How is that not love?

Down with the Flu

2008-02-26T11:06:00.000-08:00

We thought maybe we'd been able to avoid it, but as of yesterday, Little Dude has the flu. He can't take the flu shot because of his egg allergies, so I guess with this nasty flu season it was unavoidable. The amazing thing is, even with temps of almost 104, he plays and acts just like normal. He even slept through the night! (We didn't -- we got up and dosed him with Advil or Tylenol every 3 hours.) One dose of cornstarch, on the other hand, leaves him cranky and irritable for a week. So, as my husband pointed out this morning, can you imagine how bad he must feel with a food allergy reaction if a high temp doesn't bother him in the least? It makes my heart ache for him.

Licked by a Dog

2008-02-11T11:59:00.000-08:00

We went to the vet today to pick up some medicine for our dog, who has an ear infection. While we were standing at the counter, a good distance away from the scale, a lady with a black lab came over to weigh her dog and it unexpectedly lunged out and licked Little Dude on the face. (I am glad all it did was lick!) This is what Little Dude looked like by the time we got home, about 10-15 minutes later. The red patches are where the dog's tongue touched his skin; everywhere else he was fine.

This is not life-threatening, and all I had to do was give him Benadryl, but it's just frustrating. It's so easy to forget how sensitive he is when we've been going along fine for several weeks now. On the positive side, I am very thankful for our little dog, the only dog I've ever met who never licks anyone, ever. I guess the Lord knew we would need a dog that doesn't lick!

Silly Feet

2008-02-01T12:25:00.000-08:00

Little Dude and I were shopping at Linens N' Things this week, and he spied some little silicone cupcake holders with big clown shoe feet on them, called Silly Feet. Even though we can't do cupcakes (the wheat-free, dairy-free, egg-free cake mix ends up with a big hole down the middle when you cook it in a cupcake pan), I thought that would be a fun way to serve his oat muffins. He was pretty excited, and talked about his silly feet all the way home. I washed them out and Little Dude helped me make muffins. It never even occurred to me (and I consider myself pretty paranoid at this point) that there might be a problem. When I gave him one to eat, he dug into it face-first and came up with red stripes on the sides of his mouth where the silicone was rubbing on his face. And that night he was up twice, exactly when the Benadryl wore off each time.

Since then we have sent the Silly Feet through the dishwasher in hopes that there was something left on them from the manufacturing process, but it's no good. He is still getting red stripes on his mouth whenever we try to use them. And of course the worst of it is that he absolutely loves them. Now I'm going to have to hide them from him until he forgets. My husband says silicone is the 2nd most common element on the planet. So how can Little Dude be allergic to it? Or is there something they mix in with it that he's allergic to? So frustrating!!

Catch 22

2008-01-15T11:49:00.001-08:00

Little Dude's newest thing is eating food off the floor. Unfortunately, for him that's a potentially life-threatening activity. We went through this already when he was about 1.5, but for some reason the terrible twos have brought it out again. I hate having to come down on him so hard for something that seems so small, but he simply has to learn not to put anything in his mouth. The really frustrating thing is that he's been having a constant low-grade allergic reaction for several days now, which makes him more rebellious and disobedient than normal, and thus more likely to eat off the floor. But if he doesn't stop eating off the floor, he'll never start feeling better and behaving better! Catch 22.

I think there's something wrong with the world when I'd rather see my two-year-old pick his nose and eat THAT then pick up who-knows-what off the floor and eat it! His grandparents get so upset when he does the former, but that's not a battle I'm even going to try and fight right now. At least boogers can't kill him.

Antibiotics Continued

2007-12-29T16:41:00.000-08:00

Little Dude continued to have problems with the augmentin. We ended up giving him Benadryl 4x daily just to get him through the 10-day course of antibiotics. He was still cranky and irritable the whole time. Of course, by the time we got him off the antibiotics, it was Christmas with all that excitement, so we are just now seeing our little boy again.

I have researched several tiers of antibiotics, and still haven't found anything that he can take beyond the rocephin shots. Three days of shots sounds like a great way to make your kid scared to death of the doctor's office. I hate that we have to choose either ten days of misery or three days of trauma.

Antibiotic Struggles

2007-12-14T11:52:00.000-08:00

Little Dude has an ear infection, so the doctor has prescribed antibiotics. Simple, right? Not with food allergies! I asked the doctor to check the inactive ingredients with the pharmacist before we filled the prescription, and was assured that there was no corn in it. (Corn has been the biggest problem with medications; if we give Little Dude children's Advil, Tylenol, or Benadryl he actually gets small amounts of corn. If we have to give them continually, it builds up in his system and makes him sick.)

I went to pick up the prescription and gave him his first dose Tuesday afternoon. That night he actually slept less than he had slept before the medication, and it just continued to get worse over the next few days. He began scratching his elbows incessantly, and crying out not just in his sleep, but during the day, too. He would be watching his favorite TV show and just start to cry. Finally I looked at the brand name of the amoxicillin and got on the company's website -- sure enough, cornstarch was the second ingredient. (Kudos, by the way, to NovaPharm at www.novapharm.com for listing the inactive ingredients on every drug they manufacture on their website -- what a boon for folks dealing with food allergies.)

So, after checking with the doctor, I called the pharmacy and found out the brand name of their generic augmentin (which is amoxicillin with another antibiotic mixed in). This company (Ranpaxy) was not nearly as helpful. I had to call the 1-800 number and leave a message. They said they would call back in 24 hours. I was surprised when they actually did call me back in less than 8 hours, but they wouldn't give me a list of inactive ingredients. I had to give them a list of things to check for, and then the representative told me if the drug had that ingredient in it. The problem here is that corn can masquerade as literally hundreds of different ingredient names -- see the corn allergy list at http://www.cornallergens.com/list/corn-allergen-list.php if you're curious. The rep did tell me that their augmentin contains gelatin, to which Little Dude is also allergic. But, his gelatin allergy is pretty mild, so we went ahead and filled the prescription and are hoping for the best.

We got the first dose in him last night, and he still did not sleep well. He has also continued to be very cranky and whiny today. We're hoping that's just the cornstarch still in his system. This morning I called around to the compounding pharmacies in town to see if we could get pure amoxicillin mixed only with sugar water or if we could just buy it straight and mix it with something ourselves so that Little Dude could tolerate it. We also discussed asking for rocephin shots, but you have to do them three days in a row and since it's Thursday already that's probably not an option. I don't really want my little guy to have shots three days in a row, but I'm getting desperate! Clearly he is miserable.

Giving Thanks -- No, really!

2007-11-25T12:24:00.000-08:00

I have been dreading Thanksgiving for several weeks. Every other year my husband and I (and now Little Dude, too!) travel to Dallas to spend Thanksgiving with my dad's extended family. This is the first year since Little Dude's diagnosis that we have gone, and I was very concerned about the food conditions at my cousin's house, not to mention the whole horde of small children running around with food on their hands and on the toys.

I was so pleased to find that my cousin and her husband totally "get" food allergies. (Evidently he has had some experience with peanut-allergic kids at some point.) They had cleaned their house and all the toys, explained to the kids that they could not have food in the playroom, and kept the kids' hands washed after meals. What a huge blessing! We kept Little Dude in the clean playroom away from all the food, took turns watching him, and had a great time visiting with family.

Blessings

2007-11-06T12:46:00.001-08:00

As you might be able to tell by the header of this blog, Deuteronomy 8:3 is my food allergy slogan. I think God knew those of us dealing with food allergies would need a verse that spoke to our situation, and there it is. Nothing is more humbling than not knowing what you can feed your child and worrying that his very life may be in danger if you make a mistake. And although I've never tasted manna, God has given us several foods we did not know (nor did our fathers know!), including Nutramigen infant formula; egg substitute made from corn-free baking powder, water, and olive oil; oat flour; and even Cheecha Krackles (see allergygrocer.com). But as Deuteronomy says, God is teaching me that food isn't as important as I tend to make it. If I can nurture Little Dude's soul as carefully as I make each of his meals, he will have a feast beyond reckoning.

And here's the really awesome thing. I read the whole of Deuteronomy 8 for a Bible study I'm doing, and found Deuteronomy 8:16: "[God] fed you in the wilderness with manna that your ancestors did not know, to humble you and to test you, and in the end to do you good." What a wonderful promise, straight from God's word, that these struggles will all be worthwhile. He is doing us good!! Praise God.

Allergist Visit & Halloween

2007-11-03T13:51:00.001-07:00

We really didn't get anything new from the allergist visit. They did a lot of skin testing, and poor Little Dude was going crazy trying to scratch the test spots. He didn't at all understand why we wouldn't let him. The allergist did tell us to try feeding him turkey. We did, but he woke up crying twice that night and started scratching his head during the day. It's very weird how the symptoms for each food are a little bit different.

My main struggle for the week, though, has been Halloween. I keep reminding myself God has a plan for this little boy, but I just really want him to be able to enjoy the normal kid stuff. Our church has a big Halloween party for the kids, but we couldn't take Little Dude because of the possibility of cross-contamination with lots of little kids walking around eating and smearing food particles on all the games. I know it's not fair to ask the other kids to forgo Halloween candy, but I don't think it's fair to Little Dude to ask him to forgo Halloween altogether. He's too young to be upset about it yet, so we just took some homemade candy to a neighbor and let him trick-or-treat at that one house. The church thing still bothers me, though. Maybe I could go around with a Clorox wipe and clean everything before he touches it!! How crazy should I go trying to let him experience the normal kid things?

5 Days without Antihistamines

2007-10-26T11:18:00.000-07:00

We're taking Little Dude to a new allergist on Monday (this one's not a 3-hour drive away), so we have to take him off all antihistamines for 5 days prior. He is usually on Zyrtec daily and Benadryl as needed. It's amazing the difference I can already see on Day 2 of no Zyrtec! His face gets rashy at every meal and then clears up afterwards. He's sleeping a LOT less (he's probably losing about 2-3 hours daily). Between the not feeling good and the lack of sleep, he is much more prone to tears, tantrums, and general crankiness. I guess this is my 5 day "Zyrtec Appreciation" period.

Prayers of Healing

2007-10-18T11:44:00.000-07:00

I have this friend who is forever asking me if I've spoken "words of healing" over Little Dude, whether I pray for him, etc. I know this person means well, but the implication seems to be that Little Dude would already be healed if I would just pray more. I've tried to explain that I have prayed for healing, and I certainly will continue to do so, but I honestly feel that God has answered "not yet." I feel it's unfaithful in me not to be satisfied with the answer God has given me. And aren't we supposed to praise God in every circumstance, whether it's enjoyable or no?

I think it's easier for me to patient with the "not yet" answer because it's not the first time I've heard it! Through four years of infertility God kept telling me, "not yet!" I certainly wasn't satisfied with that answer through that time, but now I can see that he already had Little Dude in mind for me, and he used the trials of those four years to shape me into the mom Little Dude needed.

So if Little Dude has food allergies for a long time to come, at least I know God is working in him and in us, molding us in His image. That knowledge helps me to be patient in the meantime and to keep praising God, no matter what the circumstances.

Eating Out

2007-10-09T11:54:00.000-07:00

My husband's birthday was today, so we took Little Dude to his work for their birthday potluck. We took his booster seat so we could keep him strapped in one place, and I brought his food from home, including our Miss Roben's chocolate cake (made with tapioca flour). My husband and I sat on either side of him so he couldn't reach out and grab anyone's food. I thought we had every angle covered, and then this very nice lady came up to Little Dude with her plate full of food and grabbed his hand to shake it. I know she meant well, and she was just admiring him, but I was sitting there gauging the distance between his hands and her plate while simultaneously wondering what food she had on her hands from going through the buffet line. I tried to smile and be nice about it but I think she could tell I wasn't pleased. After she left, I wondered if I needed to wash his hands where she touched him or whether it was safe to let him eat. I ended up letting him eat, and he was fine. The woman will never know the stress she caused with such an innocent gesture. And I will never know if I'm overreacting or actually protecting my son.

This changes everything!

2007-10-04T12:45:00.001-07:00

We have been eating oats for three days now, and as far as I can tell, Little Dude can tolerate them! Praise God!! This is a picture of him licking the beater of his oatmeal cookies. Maybe we can actually make bread (which LD has been asking for pretty frequently lately), pancakes, biscuits -- my head is whirling with possibilities!

2007-10-02T12:08:00.001-07:00

We are trying oats again after more than a year. The RAST was only 2.3 last February, so I'm hoping by now it's even lower. We made oatmeal cookies together yesterday, and LD just loved it. I let him lick the beater (no eggs, so no worries!) and he thought that was the best thing ever. He ate probably 4 cookies yesterday with no rash and no scratching, so the IgE-mediated allergy seems to be gone. The question now is, will he have an IgG reaction? He actually slept through the night last night (usually his IgG allergies cause him to wake up screaming) so we are hopeful, if not totally convinced. Unfortunately, today he didn't want to eat the cookie I gave him after lunch, so that is not a good sign. A kid who hasn't had a cookie in well over a year should be gobbling it down with both fists!! Wait and see . . . .

2007-09-29T11:01:00.000-07:00

This blog is basically my place to complain and strategize about all the issues related to food allergies. I am hoping there's someone else out there dealing with allergies on the same scale that we are who is looking, like me, for someone to compare notes with.

Last night we delivered food to a family in our church. I was guessing it would take about an hour to get there and back, and we would be home in plenty of time to feed our little dude dinner. Instead, because of totally unexpected traffic backups, the trip took two hours. Poor little dude was starving by the time we got home. (He ate three bowls of meat and even a few green beans -- you know he's hungry if he's eating green beans!) I felt so bad for him; the one time I leave the house without even a box of raisins. Just one more instance of how food allergies control our lives. I feel like I have to plan for every contingency every time I leave the house.

This morning Little Dude picked a book off my bookshelf and wanted to read it. Of all things, he chose a book called Kids Baking that I had bought long before his diagnosis. It's got simple recipes and wonderful color pictures of kids baking cookies, cakes, bread, basically all the things LD can't have. He looked at every picture in awe and then wanted cookies, bread, etc. So I tried to talk to him about how some of those things would make him sick, but that we could try and make cookies with safe ingredients. Then I remembered I had to throw out the potato flour and tapioca flour because I figured out they were cross-contaminated. We no longer have any safe ingredients. I guess I shouldn't have let him even look at the book. Things like this just make me so sad.

2007-09-28T12:13:00.000-07:00

Because of our son's very limited diet, my husband and I will often eat different foods than him. At almost every meal when we are eating different foods, LD (Little Dude) will look longingly at our plates and start fussing or whining. He’ll point to himself to indicate that he wants some of our food. My heart absolutely aches for him at these times. We always tell him gently, “You can’t have that, son. It will hurt you.”
Thanks to an insight from the Beth Moore study Believing God, I’ve realized this is how God feels when we ask for things that wouldn’t be good for us. I have this very vivid picture of God, His heart aching as I pour out all my childish requests to him. And He says, “No, daughter, you can’t have that. It will hurt you.”