we tried!

sam had a bite of wheat noodles at 10:15, then another bite at 10:35, a few bites at 10:55, then a good bit at 11:25. nurse checking his skin and lungs/breathing before each new bite. he seemed fine. he loved them. about an hour later i saw a small hive on his face. a bit longer there were three...and within an hour he was covered from the trunk up.
doc gave him 1.5 tsp of benadryl and they were gone after a couple of hours.

the doctors were surprised that the reaction took so long to present itself. he had a similar reaction the only other time he had wheat, and come to think of it, it was similar to when he had green pea as a baby.

we didn't loose anything from trying. except, of course, that everything this afternoon had to be canceled. and, i don't know if we will be able to challenge another food tomorrow or not (we had planned on trying shrimp and oat). it does kind of mess up things because you have to be off antihistimines to test for allergies via skin test, which we were thinking of doing for a couple of things tomorrow.

but, still it's okay. we actually had decided to cut out a day early and fly home on saturday. we figured that one more day wasn't worth spending three more days here. we have loved denver but also would like to get home to real life. we are so thankful that we have been able to be at national jewish, but also...a little tired of being there.

i'm still really torn. and, it is hard to explain the reasons.

basically, samuel had so many positives on his tests. i had decided to just overlook them and carry on assuming they were false positives, but i keep hearing that terrible voice in my head, "what if X is the one food that is keeping him up at night scratching." which is probably not true. and, i might can do the detective work at home. we know that he isn't eating anything he is highly allergic to, but certainly perhaps an eczema trigger.

if that last statement seems to contradict one of my earlier posts, it is because that is what i have concluded this week via my own intuition, talking with some nurses, and a couple of other doctors. just because he doesn't break out in hives, vomit and stop breathing doesn't mean he doesn't have a food that is flaring his skin, causing problems. just hard to pinpoint it at home where dust mites and humidity abound.

lastly, we were told that we need to take sesame and green pea out of his diet, that they look like solid positives. sounds easy since he doesn't even like green peas and since we aren't passionate about sesame. but, sadly his favorite chips and pretzels (which he eats everyday) have sesame in them. and, his butter and vegan cheese
(our only cheese option realistically) both have pea protein. this will take a few days to sink in. i am so glad (it seems that) we gained soy lecithin and soy oil, but wow---we are loosing four of our main staples. mainly butter and dayia cheese. sigh. i can honestly say, however, i am glad to know. perhaps THEY were what was flaring his skin??!! i say that partially kidding, but who knows.

praying i will have wisdom to know if i should just wrap things up tomorrow and get home on samuel's birthday, or stay over the weekend to finish on monday (which was the original plan since program is really 10 week-days). not a huge deal either way.

a few more pics. samuel has made some friends, which has been very dear. below are sawyer and his sister hazel. sawyer came with severe eczema and had been told to avoid 30 plus foods; his family was spending close to $3K each month on his prescription formula...he was discharged today with beautiful skin and a has added the majority of those foods back in. it was great to get to talk with his mom and dad throughout our stay.

sam passed soy lecithin and soy oil!!!!!!!

this is huge. it opens up many store bought foods for us.

we are so glad. hate that i am still a little bit skeptical.

for four years we have avoided anything that says soy like the plague as samuel is anaphylaxic to soy. and even this week his skin test was highly positive; RAST (blood test) score was literally off the charts high (along with peanut). so, it will take some time to get used to seeing the word soy and then buying it and then preparing it/feeding it to him.

clarification if you missed it from another post: the protein in soy lecithin and oil is removed in the process of creating the substances, so the body doesn't recognize it as soy, so therefore safe. sort of like how most peanut allergic folks can safely eat at chic-fil-a, which uses peanut oil.

my question is: if soy lecithin and soy oil are safe for soy allergics 99% of the time, why do we not know more about this and thus consume it!!??

he tested positive to almost all of the 35 things that were tested on the blood test, yet we will assume most are false positives since we eat them okay now. if the numbers are high and they correlate with strong positive on skin test we might think about testing those to see if his eczema flares.

tomorrow we will try wheat. the only big one we will do as his results to egg, milk, peanut and soy are extremely high and not even able to consider considering.
i really doubt we will pass wheat, but will be glad we tried.

thanks for reading and following all this confusing verbage.

quick update

david and eli left today. i didn't realize how much we loved having them here until we came "home" today and they were gone. they were able to spend a few days at the hospital with us. and---we went to the aquarium, hiking, the zoo, the natural science museum, visited red rock amphitheater...etc. david and samuel got to do what they like best---run around 100 mph together.

couple updates:
-tomorrow samuel gets to skip the wet wraps. in fact right now he is sleeping without them for the first night in a long, long time. we'll see how he does. (major detail is that colorado has NO dust mites as it is too dry for them to live! which, are probably one of s's big triggers, especially at night.)

--his skin looks and feels amazing. so soft. never felt like this. we contribute this to the number of baths/wraps and elecon.

--today they did a food challenge to beef, which was not scary in the least. we did it to see if he would have an eczema flare. he didn't. was fine.

--tomorrow is actually our first big day---in terms of really seeing if he can add things to his diet. docs say that 99% of people with soy allergy can eat things with soy lecithin and/or soy oil. so tonight i bought vegan chocolate chips with s.l. and we will just take some oil and mix it into applesauce or something. despite the stats i am skeptical. but, being able to eat that would really open up tons of things as most all processed stuff have one of those two things. not that we want processed stuff...but certainly on occasion.

--the other food challenge we will most likely do is wheat. his skin test was positive, but just barely. if the blood test comes back low too we will try it. we will probably try it even if it doesn't. he's only had wheat once and it was over two years ago. i cannot even begin to say how adding wheat would change our lives. we will see. i expect to gain no foods, but certainly would love that surprise.

--like i said, we have not yet gotten the blood tests back; hopefully tomorrow so we can see if we want to challenge any more foods. the only thing that might even be a possibility would be baked egg---which i feel is very unlikely.
and if there are some foods that have high positives which correlate with positives on skin test we might eat those to watch for an eczema flare (which we would be able to see since his skin is so clear.)

eli often insists on walking on his own. which is...fine...except when on a long hike...

samuel had to have a go at the back pack action