What do they eat?

As of today, (and keep in mind that this can and does change), here's what the kids are eating:

Tanner eats everything EXCEPT dairy, soy, wheat, tree nuts, fish and shellfish. We have to be very careful of cross-contamination as well, so if a company does not have good manufacturing practices to keep his allergens out of the food, we dont' eat it.

He scoped clean (no/low eos) in June, 2008 on a top 8 free diet, which meant that he was avoiding all of the above foods, plus peanuts and eggs. Since June of last year though, we have trialled (eating the food until we either see symptoms or have an endoscopy to confirm whether or not it's ok) both the peanuts and eggs and he has done very well on the outside.

He will have another endoscopy on April 20th, 2009. If the biopsies show no/low eos again, that would mean that both of these foods are "safe" for him. This would be HUGE! If he has eos, then it could be one of two things...either one or both of these foods are EE triggers for him OR something in the environment is a trigger and it would've happened regardless if he had the new foods or not. For the majority of people with EE though, food is the trigger and it would have to be removed if eos were found.

Tanner has struggled with gaining weight in the past and our GI had threatened putting a feeding tube in last year if he did not gain enough soon. Since peanut butter is his favorite food and is a great source of fat and calories that we know he would eat, our allergist had us do an IOFC (in office food challenge), where they gradually gave him increasing doses of peanut butter over several hours to make sure that he wasn't going to have an allergic reaction to it. He passed w/o problems and has been eating it in VERY LARGE quantities ever since. He has put on approximately 10 pounds since November. He is still on the small side, but this is a big improvement (pun intended).

Kaleigh is on the same diet as Tanner, with the exception of eggs. She trialed this last year and became very ill within about a week of starting on it. It may have been a coincidence but neither her nor I were willing to retry it any time soon.

She also had a clean scope in June, 2008 on the top 8 free diet and is currently trialling peanuts as well. Speaking of peanuts, Kaleigh had allergy testing done (one little piece of the puzzle when trying to figure out "safe" and "unsafe" foods for kids with EE) and tested positive to all 43 foods that they checked. Peanuts were very high. In fact, the allergist said it was 3x higher than a level where 90% of people would go into anaphylactic shock if they ate it. The strange thing is that Kaleigh had eaten peanut butter almost daily for years and years prior to her EE diagnosis. We did an IOFC for her as well and she passed. She got sick though within a week of trialling them. We stopped and retried another time when she was healthy again. That time, she did great, so she has continued eating it.

She will be scoped the same day as Tanner. So....we are less than two weeks away from finding out if these new introductions are going to be something they can continue or need to stop. Tanner will probably go through at least one Costco size jar of peanut butter between now and then. :) They are both VERY excited to not only possibly gain these new foods, but if their scopes are clean, they will get to trial another new food....WHEAT! Yay...bread! They have been eating a tapioca/rice bread that has to be toasted prior to eating. It also costs almost $6 for a very small loaf. Needless to say, we are ALL excited and hoping it goes well.

Hunter stopped ALL foods in December, 2006, after he was diagnosed with EE. He had so many symptoms and was sick every single day no matter what he ate, so it was better to make him well and then figure out the food situation later. He immediately started on an elemental formula. He still drinks Elecare today, (affectionately called his "lemon milkshake" even though there currently is no lemon in it - long story.) It is an amino acid-based elemental formula that is tolerated by the majority of the most allergic kids. He has done so well with it and most of his old symptoms vanished after just several weeks of being on it. This is still his main source of nutrition. It has everything he needs to grow and thrive. He trialled and "failed" (bad symptoms and/or eos found in biopsies) the first foods we tried introducing.

Then, FINALLY, in June, 2008, he had a clean scope after trialling sweet potatoes, which meant that he had ONE known safe food. This was so HUGE for him and us. He loves sweet potato fries and will eat them almost every day. He has since trialled, and done well symptom-wise, apples, grapes, pears, peaches, spinach, green beans, and white potato. Unfortunately, his eos count went up, but it wasn't terribly high, which is good. As I mentioned in my earlier post, since he's in the study, he will continue eating these foods while testing a new medication. We're not sure what will happen with these foods at the end of the 12 weeks.

Holidays/Birthday and School Parties/Eating Out

One thing we've noticed through all of this is that food is EVERYWHERE. We bring a cooler of their own food everywhere we go. They have their own "safe" candy at school for when there's an unexpected party. They bring their own food and homemade cupcake to birthday parties. They donate their trick-or treat candy that they can't eat (which is most of it.) There are only a small handful of "safe" restaurants that they can eat at. No more Costco samples. Etc, etc.

We have, however, expanded their diets to things they never would've considered before, and some have even become new favorites. Although I never considered myself a good cook/baker before (probably because it's something I never used to enjoy), I have since learned to cook...from scratch too! I have learned to create special treats for them that the OTHER kids wished they had. (The kids LOVE it when this happens.) No more fast food! (Yes, this can have drawbacks, but overall, I know this is a good thing.)