Thursday, September 29, 2011

Day 3 at NJ, AKA too much info

yesterday was pretty uneventful. lots of baths and wraps.

lots today too. and, if you are wondering about our wraps, here is the deal, briefly.
the whole thing about people with atopic dermatitis (eczema) is that their skin has a problem holding moisture. here is more info if you are interested.
so, one of the ways to get more moisture into the skin is by applying wet wraps, which are used after one has bathed for 20 minutes, just to the point where the skin is thoroughly wet/soaked/slightly saturated but not too much. within three minutes steroids or thick ointments are slathered on, followed by wet tube socks on legs and arms, followed by a pair of wet pajamas, and lastly, a pair of dry clothes.
we have been doing this most of the summer with no signs of improvement. however we kept doing them at night because we found samuel would sleep better with them on. seems the wet suppresses the itch that kicks in at night when cortisol levels are low, etc. and of course it's impossible to scratch with layers of tube socks on your hands.
it seems we are like 1 in a million who do not see signs of improvement...and the docs here keep saying that it will we keep going. he has certainly been less itchy, hardly itchy at all, so that is progress.

the big thing today is that they did a scratch test for food allergens. we've had them done annually in the past. they are helpful in trying to figure out allergens, but not always accurate. lots of false positives. there are (mainly) three other ways to determine what you are allergic to. 1--RAST test, which is a blood test. these render lots of false positives and therefore can be very misleading. lots of people have these done, and concur they are allergic to all the positives, wasting lots of time, energy, money, and let's face it, joy, avoiding those foods, when really they were simply false positives. 2--a puddle test...which is a type of skin test were fresh food is mixed with saline and used. 3--and finally, the only way to really know what one is allergic to is by eating the food. we have done most of the above before (even if by accidental ingestion).

so today we did step one of the equation. after looking at samuel's history, the doc wanted to test 28 foods. i didn't know what foods were being tested until it was happening. they tested many i did not understand and left out several that i really want them to test, so, it is my hope those will be tested in the next few days.

by the way, my goal in making this trip is to see if there are any (eczema) triggers that we are missing. particularly, i felt there might be a food i was missing that though he might not be highly allergic to, perhaps enough to cause his skin to keep flaring severely. so, these tests are big.

i don't know the exact results, but i know that peanut, milk, and egg were high positives (no surprise here). also soy (also no surprise since we have had anaphylaxis with), yet the wheal on his skin was much smaller than PN, M and E. beef---which i really knew in my gut (okay, and he has tested positive to it several times). other positives---green pea (which we have a history of problems with so if true no surprise)...and mostly a bunch of tree nuts.

there is one main allergen i left out...that was a very small positive. but, small enough that if the blood and puddle tests are also low, we might challenge it towards the end of our time here. i will not mention what it is, i will only say that this would be amazing news. and, i will keep you posted.

but again, adding foods isn't our goal. but would be nice if we discovered he'd outgrown something, of course.

we left today just before 5, the earliest yet. were able to get "home", play with friends and just be normal. it was fabulous. btw---i haven't yet even mentioned how very fortunate we have been to stay with sara and jess bartley, who live in the most adorable bungalow on a very charming street, just 8 very short blocks away. MUCH more on this later.

in closing, i will say that, Lord willing, david and eli will fly out in the morning to be with us! we are excited. david will be able to go with me to some important meetings with the team of doctors that have been working with us, and, be here for his skin testing of environmental allergies. they will be here until tuesday! we hope to have a mini-vacation this weekend, enjoying all this mountainous beauty.

and, here are two other pics from the day.


The Morrisons said...

Glad you guys are making it. How is Samuel taking all the poking and prodding? He looks so sweet all "mummified" I am praying Ash, that you will find at least one thing that will help with his itching. I remember when we discovered beef and banana with Owen. His skin was so much better, and he was only mildly allergic. I hate to have to restrict foods, but it was worth a good nights sleep. I always remind Owen about how healthy he eats (mostly plants and whole foods not processed) and consequently how much healthier we eat. I won't swing through a fast food place since I know O can't eat it. I also recently read an article about how people with atopic dermatitis have lower instances of cancer. It seems the overactive immune response might also kill off any cancer cells. There's a positive :) Thanks for posting-have a wonderful weekend.

Taylor said...

Hey! I brought those dudes to the airport=)! Ashley, I am very happy to hear things are looking even the slightest bit better, but it sounds like it could be a ton better. I pray he isn't allergic to what you say could be huge! I think I may know! I'm praying for you all and love you all so much. I can't wait to see you all again back home.

David, Ashley, and Samuel said...

thanks so much for your kind comments,ginny and taylor.
love the cancer info. and yes, that helps me, too, knowing that s eats so well due to not processed stuff.
taylor, it is wheat. they will get do a few more tests and then have him eat it and watch. not counting on it, but we would love to leave eating wheat. thanks for taking them to the airport!