Our family is growing in many ways... Growing in numbers, knowledge, parenting skills, growing in love, in our faith, growing our culinary skills (if you can call it that), growing without gluten (some of us), growing green...........

Saturday, October 24, 2009

Allergy Confirmation and Update

We took Aiden to the allergist on Tuesday and got some definite answers. We already knew what we would find out, but confirmation is a great thing.

First of all, we were very impressed with the doctor. We went to Duke Allergy, Asthma, and Airway Center (which is beautiful with a huge pond that goes right up to the walkway around part of the building...almost level with it...and a fountain that Aiden would watch from the huge window in our exam room), and when the doctor came in to see us, he had clearly read through Aiden's entire history very thoroughly. He knew all about his IP diagnosis and discussed that with us some - usually we have to tell doctors about this, and they often have not heard about it. He really impressed us with that and then with his knowledge of up-to-date things concerning allergies and research. This guy was really on top of his game. And he was great at what he did and answered all of our questions thoroughly and patiently. (In case you didn't expect this, I am one of those that goes into appointments with a list of questions and things to discuss... Surprised?! Probably not.)

Anyway, moving on... First we did the skin test. We had some concerns because while we've heard stories from people with NO problems at all, we've also heard from people that have had all sorts of issues on the other extreme. But the doctor reassured us, and he was right. Aiden never even flinched while the test was being administered. I actually had to ask the nurse if she even pricked his skin! They tested only for egg this time, for various reasons, and did a control for histamine reaction and a control with saline. These tested for possible false positives or false negatives - and Aiden reacted just as you would want, so we were confident with the results from the egg test. He walked all around the hallways shirtless during the test. He obviously was not irritated in the slightest. BUT he also immediately showed a reaction to the eggs.

We talked with the doctor about what all this means, and we also did a blood test and should get those results back next week. He explained to us that with an allergy like this, you go all out with restriction. It's an all-or-nothing approach. That means that even if a food is labeled as being free of eggs but "processed in a factory that also uses eggs"...that food is a big no-no and should be treated as if it has egg in it. Why? Well, you never know if they really do keep things separate. Even if they make a good effort, you never know when you will get a product that just happened to be exposed to the allergen. OR you don't know if Aiden has some tolerance level and will slowly build up to that and then have a bad reaction. This all makes sense. It also cuts out a LOT of foods we thought were ok. (Even if he's had them in the past and has not reacted...keep in mind the reasons I just listed to understand why he can no longer have them.)

Another issue is the flu shot. Now, we've been on the fence about the flu shot(s) for a while now. I won't go into all of that right now b/c that's not what this post is about. BUT the flu shot is cultured in eggs. That doesn't mean he couldn't get the shot. It does mean there is a lot more to deal with to get it. He would have to go to Duke Hospital and get a skin test with part of the vaccine. If that shows that he is ok to get the shot, he then gets 10% of the shot. Wait another half an hour or so...and then he gets the rest. Keep in mind this would be his first time getting the shot, which means two doses. We would have to go through that again. And if we were to give him the seasonal and the H1N1 vaccines...that means 4 visits to do this. And at least two skin tests and 6-8 shots. At the hospital, which is about 40 minutes away. With lots of time waiting while there. That's easy with a toddler, right? And he's not in a high-risk category, especially being at home with me and still being breastfed on demand. You can probably see why we're debating whether to go through all of this with him. Besides, they're out of the vaccine at this moment anyway. Guess we have time to think. Honestly, we're leaning more towards not doing it, though.

As I said, we also did a blood test. After being at the office for over an hour, Aiden was starting to meltdown...getting tired, wanting out of there, wanting to nurse...and then he gets to have blood drawn on top of that. He was PERFECT for the visit for the first two hours, but you can see why he would have a problem with that last part. Why the blood test when we already did the skin test and know the results? They might be able to find out if he is also allergic to cooked egg (which we kind of already know after the test with the cooked muffin on his cheek, but still...). Also, they test his blood level. If a certain result is found, we could do a food challenge (also at the hospital) in 6 months or so. If it does not come out below a certain level, that means we need to wait another year and do the testing over - no food challenge before then.

When we got home, I went through our pantry, separating the foods with eggs (or labeled as being processed by a place that also uses eggs) and foods without. We have a few places to call b/c they don't label well and are in question. But I had a visual showing me that this actually does cut out a lot of foods...a lot we thought would be ok for him. We'll deal. The hardest part will be traveling (maybe more people should just come to us...make it a heck of a lot easier on us!), parties, going out to eat... I've seen what a challenge this can be with my mom and all her food allergies, BUT because of that, I've also seen it is quite possible! So, I know we can do this. We've already tried some egg replacements. Some have worked just great, some ok but not as great...that's how it goes. Some foods just won't be the same but might just have to work! Luckily, Aiden is starting with these restrictions so young that he won't know any better. ;) And odds are good that he will outgrow the allergy by the time he is five years old.

I think I covered it all... If there is more to share after the blood results come back, I'll share then.

I have a few pictures from the visit, but something's up with blogger, so it's taking forever. And it's late - too late already. So, I'll try to post them tomorrow night or Monday. We're off to the zoo tomorrow, so we'll see. If you want to see them now, along with a cute video taken with the camera, click HERE and view the last pictures in the album. The video is of Aiden finding a way to keep entertained while waiting in the exam room. He was so well-behaved! (Up until that last half-hour, of course, but who could blame him at that point?!)

3 comments:

Mother Goose said...

Wow, I really admire your dedication to finding safe foods. I might give up and only cook whole foods I'd grown myself. You do have a very high motivation though! Good luck getting into a good routine.

Daisy and Ryan said...

Thanks! :) We actually do make most of our meals from scratch, so hopefully it won't be too big of a deal. But even things like most of the pasta we buy say "processed in a factory that also uses eggs"...that was one thing I was not expecting (and not egg noodles...but regular noodles!) the full-on whole wheat noodles don't say - so i'll have to call and ask about those. And snacks are a bit trickier. Things like the biter biscuits (that he loves!) and Annie's bunny crackers (same thing as goldfish..)- the child just started eating those and adores them! they also say the same thing. then we have to worry about eating out... and when we travel to visit family. blah. blah. my mom has so many allergies (people think i'm over the top when i say she's just about allergic to everything until i start listing...), so i know what to expect and know it's doable and just means doing stuff on my own - which i am SO fine with. we try to use more whole foods and rely on processed foods as little as possible. but there are still challenges. esp with baking! and i love to bake! we'll see. the way i see it - we really don't have a choice. we simply have to find a way for him to eat like us. i was just surprised at how many things either had eggs or are made somewhere the uses eggs - and was not expecting to take some of the things out of his diet. esp that pasta. he loves pasta, and it's so easy to fix for a quick lunch!

Jeff said...

Hi, I read your earlier blog and did a test by putting some raw egg white on to 15-month old son's face. Within minutes, the spot became red. We had earlier fed him Egg Yolk and egg white but did not notice any reaction.

Yesterday I brought my son to do a Skin Prick Test, and he was diagnosed as Allergic to both Egg Yolk & Egg White. It is really puzzling that why there were reactions on the Skin Prick Test & Swiping the allergens on the face BUT no noticeable reaction when he was fed with food containning the allergens ????

Assuming your theory that someone could have a tolerance level to certain allergen but would not show reactions when fed until the level is breached is true, I believe many parents in the world had got it wrong by testing if his/her child is allergic to certain food by feeding a little bit of the food to the infant one at a time to watch out for reaction. Also, if there indeed is a tolerance level, it should not have shown reaction at the skin Prick Test since the allergen quantity used, as I understand, is so minute.

All this is so puzzling. Could it be a case of the skin can react to the allergen but not the guts ??? What then is the use of Skin Prick Test to test for food allergy ???