Thursday, May 01, 2008

VICTORY! defeat. VICTORY! defeat.

thanks to our angel friends and our new floors and our neocate, our little grayson is doing sooooooooooooooo good at night. he wakes up now an average of 1 to 2 times per night, but really its mostly been only once the last couple weeks. this morning he slept til 7:15 waking up only at 11 and 5 but quickly going back down with paci in tow. so that is a total praise. it has really helped kenny and i's mental state in the morning, which needs all the help it can get right now! so again, i say thank you. thank you. thank you.

i had mentioned in a previous ranting post that grayson would soon have more bloodwork done. but it seemed to me that our doctors weren't really sure what to test him for. maybe just some of the stuff he'd already been tested for to see if the allergy increased or decreased and maybe some more stuff he had been eating. i told our dr the foods i was concerned about, and then i wanted to recheck some stuff. it kinda seemed that he maybe thought we would just do it for my peace of mind, he wasn't expecting anything interesting to come back. he called yesterday, in his deep voice, which indicates that something's not right. and he says, "well, i have some results back, but not all of them.." and he begins to dictate as i write.."carrots - class 2. milk- class 4. egg whites- class 5. avocados- class 3. summer squash- class 2. and are you ready for this? wheat- class 5." are you KIDDING. i don't even know what else we had tested him for! but how is it that everything i just guessed at came back positive? all i give him for veggies at this point is green beans and sweet potatoes, which i am now completely fearful of. he tested negative for carrots, avocados and squash at 5 months old, and BARELY allergic to wheat at 5 months old. but class 5 is like a really bad allergy. i think class 6 is the worst. so, to me, that means that there are tons more foods he could be allergic to. there's no way i just randomly picked six that were positive. MAN. and i just made and froze tons of green beans for him. do i stop giving them to him? i asked my dr about doing more bloodwork. i know it sucks for grayson to get stuck all the time. but i think it would suck more to suffer from an allergy i didn't know he had. i don't know. waiting for dr to call back with the rest of the results. hopefully soon, but like i said, i can't even remember what else it was that they were testing him for. OH. celiac's disease came back negative, so that's GOOD good good. ok, i'm done for now. pray that i will have wisdom in feeding him, i'm at a loss. i feel like all i can give him is neocate. everything is an unknown right now.

2 comments:

Anonymous said...

I know I'm always pounding you with info, but something I just found out from my dr. is that she did an "immunocap RAST" for Titus. It's a specific kind of blood test that's supposed to be one of the most reliable and replicable out there. I was freaking out because comparing Titus' bloodwork from him at 9mo. in the hospital and now it looked like his allergy increased like 5-fold. But she said that the tests are so different that they're really not even comparable. Even lab to lab they will look different. Google the immunocap RAST and then request it from the doctor and according to my allergist you should be able to compare the results from test to test over time. Of course we have to wait another year to do that..... Also, don't freak too much about the wheat increasing that much. Babies immune systems until they're 2 are still developing, so you can get lots of false readings on tests and things just change a lot. But seriously consider demanding that test so that you can see what the results tell you over time. Otherwise comparing results from test to test doesn't really mean a whole lot. -- anna

Anonymous said...

and by the way - since Titus hardly eats anything except pretzels, he's basically lived on Elecare since he was 9 months old. He's doing pretty well. So if it takes a while to figure out what you can give him, don't freak out too badly. At least the neocate seems to be doing its job!! It can sustain him for a long time. Titus is testament to that!!! anna