Tuesday, July 15, 2008

Tuesday Worries

My deaf boy is sleeping soundly while men 8 feet above him are tearing off shingles and pounding hard enough to send vibrations throughout the entire apartment. He’s a sleepy boy today due to a long night of restlessness and tummy upset. I should be sleeping too, but I can’t turn down a little time to myself (and time to research online).

I’m looking for a referral from his developmental specialist to see an allergist. Ethan slept so poorly last night because I allowed him to have a grilled cheese sandwich for lunch yesterday. I have not allowed any dairy in his diet for months as he has had numerous digestive reactions to cow’s milk. I don’t know what got into me, other than the desire to see him enjoy food and eating for once. He also has similar reactions to wheat, almonds, and soy. It’s amazing to me that G.I. specialists at Children’s have never seemed interested in this information, but then I’ve been unimpressed with them from the get-go. There was a time when I thought that someone with such a title at one of the most prestigious children’s hospitals in the country has to be good, but that assumption is easily put to the test and dismissed when it’s your child undergoing the testing and treatment.

Two weeks ago Ethan was stung by what we assume must have been a bee. None of us saw it happen, but he was playing in the yard and all of a sudden didn’t want his left foot on the ground. Then he wanted to be picked up, which is never a good sign. Grandma carried him into the house and Rich and I were immediately alarmed; he was slumped over her shoulder with his eyes closed. To most people this would look like a sweet little scene, but to the parents of a toddler who simply NEVER stops moving, much less lay his head down on a shoulder and close his eyes, it was extremely scary.

He was very sweaty and we got him to open his eyes while sitting in front of the fan and putting cold compresses on his forehead and back. It all happened so fast and none of us were quite sure what had actually happened, or I think I would have been on the phone with 911. Luckily he recovered fairly quickly, but he was basically passing out and his respirations seemed to slow temporarily.

We have an EpiPen for him now and I get nauseated just thinking about having to use it. But that’s much better than the alternative.

I guess the time really is here to get serious about the gluten-free casein-free diet. There is nothing preventing it now that we live within minutes of some of the most diverse shopping I’ve ever seen.

If you’ve ever tried this diet and have any experience or advice to share, I’d love to hear it. If you’re not comfortable commenting then just send an email: heather@mediabrite.com


Mom to Toes said...

Oh, Heather! :( Poor Ethan! What a mess.

That is scary about the bee sting. I am glad you have the epi pen in case it happens again.

Good luck with the allergy testing.

Don Mills Diva said...

Poor Ethan!

My MIL is celiac (allergic to glueten) and we are extremely close so we have always accommodated it. There are wonderful products out there. My SIL, a chef, has written and is currently trying to publish a glueten and lactose-free cookbook. August will be glueten free month over at my recipes and review blog and I will be featuring 2 recipes a week if you're interested...

Eileen said...

That sounded so scary! I think having the epipen is an excellent idea. Things happen so quickly, as you learned. You'd be able to use it, if you had to.

I hope there is not huge waiting lists to get into a good allergist. Allergy testing sounds like a great idea. I had Melanie tested when she was 4. I thought for sure she had food issues, but nothing came up.

Isn't the internet and blogging great. So many resources for you to tap into about the various diets. Let me know what you find out.


La La said...

Whew! Glad he's okay. I also know how wonderful it is to live close to great WHOLE FOODS stores and Trader Joe's. I'm happy that shopping for his food and making the adjustments will be a lot easier for you -- still hard, but easier access does help.

I am Trish Marie said...

Hey, at least the Epi-Pen pretty much does all the work for you! Just hold it down, and push the button!

I find that often fancy, titled doctors are not really interested in what you have to say. It happens all to often with us. Above all, you know your child. Find a doctor that is willing to hear that.

Taryn said...

My son is allergic to milk and has been since birth. Eliminating milk and dairy is easy once you get the hang of it. I've been doing it for almost 6 years, Bobby's DOB is 9/25/2002(he outgrew beef and most of his other 46 total food allergies over the course of 4 years) and I can scan labels quickly and it becomes second nature.I find myself scanning labels for things I'm going to eat and know he can't have.
Bobby is luckily not allergic to insect stings but I know the fear of bad reactions, swollen lips after eating a bite of shrimp, projectile barfing all over my couch after less than 1/8 of a tsp of milk.
Once you get the hang of it it gets really easy.

Taryn said...

Forgot to add that right after we moved to IL from TX when Bobby was almost 4 I came very close to getting into a screaming match with an allergist who was a pompous jerk and thought he knew everything, he wouldn't listen to me and was being a total jerk. I hope you find a wonderful allergist, I know Bobby's in TX was wonderful.
I will also say I got very used to carrying Benedryl and an EpiPn Jr in the diaper bag. I'd ask where I could put the diaper bag and be told anywhere and I'd have to remind them, yet again, that there was medication and a syringe with a very very powerful stimulant in it and it needed to be kept out of the reach of little hands.
I also had an incident where I was at a gathering of friends and found Bobby(who was in a child's room playing with the 20 some odd kids there) carrying around a baby bottle(he was 2 almost 3 so it wasn't his) with a white liquid. I was near tears and as I ran around asking whose it was and what was in it. I was in tears once I was told it was just milk, I didn't know if he had drank any and, if so, how much. Luckily I assume he was just carrying it around because if he had I would have known it and I would have got to give all my friends a demo on how to use an EpiPen.
Never had to use it, hope I never do, but I know if I do, at least it's goof-proof. I shouldn't have to since Bobby knows his allergies(I started talking to him about it when he was 3 once he started preschool and we had 2 issues with him stealing a piece of cake off another child's plate and sneaking a chocolate cupcake into a tunnel to eat it(luckily he didn't have any severe reactions) and asks if something is safe for him and if offered something he knows he can't have(goldfish, cheese, etc) he'll tell them he can't have it because he's allergic and he can tell others what he's allergic to.
Good luck with the allergy tests and be prepared to have some possible false positives, he might be allergic to everything he reacts to on the test.

Hetha said...

Wow, Thanks Taryn!

jen said...

oh sister. i don't have any advice but it sounds so scary and i am sorry.

elizabeth said...

I hope you'll consider adding your blog to the aggregator at Deaf Village (www.deafvillage.com) -- we'd love to have you as part of our community. There is another family in DV that is GFCF -- the mom even has a separate blog just for GFCF recipes. Let me know if you'd like her contact information, I'd be happy to connect you two!

Kyla said...

That scene so reminds me of that moment when KayTar slips away into her episodes. I don't think it was that...but the kick to the stomach kind of worry, the way he just kind of checked out and all. Ugh. I hate that you experienced it.

Good luck with the dietary changes!

Beck said...

Well, you know that I'm used to cooking for a celiac child! We try to limit dairy in her diet, too. If you want some good book or website recommendations, let me know.

Aliki2006 said...

How scary! I'm terrified of wasp.bee stings. My FIL is allergic and carries an Epi pen, and I always worry that one of my children have inherited his allergy.

You know I tried the gluten-free diet with L. but just couldn't keep it up. He hated it, and stopped eating pretty much altogether. It was a scary time.

Anonymous said...


Loudest Mom said...

How scary! I'm glad you have the epi pen- we used to carry one as well because the kids were receiving allergy shots and there was a risk of reaction after the shot. The thought of using it was scary, but the risk from not having it is worse.

I have a close friend whose child has had major stomach issues. They are still researching what is going on with him. It's very frustrating as the parent, I know. Hang in there!!