Thursday, October 6, 2011

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.


The Morrisons said...

So sorry the wheat flared him up so bad. I guess at least you know-trying to come up with something encouraging. Love you guys! Give Samuel a high five for us-he's being such a trooper.

Anonymous said...

just read this - can't wait to talk more. so sweet w/ his little friend!
luv, jen

Anonymous said...

Hey Ash...I haven't seen your blog in so long...what a journey you all are on. Love you. Sigh. EKB