Food Allergies 101

I alluded to this in the last post---beliefs about food allergies vary greatly, even in the medical world. The following information is based on the views of the doctors at National Jewish, and, importantly the top allergists in the world, and, also by many of those who have had lots of personal experience with food allergies.

I will use Samuel's body to explain. We came here solely in hopes of discovering if there was a food we were missing. I was suspicious of beef, tomato, white potato and sesame. Not all of them, but wondered if one was causing his flares. In his nearly four years, allergists have tested him to the first two on the list, and, each time the tests came back positive. However, we thought they were false positives and left them in his diets. But recently, I started to wonder.

According to Dr. Fleischer at NJ you are not allergic to a food unless it causes hives or symptoms of anaphylaxis. Also interestingly, you will not gain any new allergies. Except, there are times that one can become allergic later on to shellfish. So there would be no reason to test for new allergies.

Those are big statements for mamas like me to wrap our heads around. One, we are so desperate to find any answer that can help severe eczema flares. And, this view is not commonly held. In fact, our dermatologist (whose son has severe FA) and our beloved allergist would not draw that line. They would both say that flared eczema could be a symptom.

But Fleischer (who is one of the two top dogs here) says no. I feel that it is possible to have a "milder" allergy to a certain food...and where one might not stop breathing upon ingestion, one could certainly get flares. Not according to Fleischer. There is not such thing as a mild food allergy.

So, as in the case with Samuel---we are not missing any food. It is a waste of time and money (and certainly heart) looking for THE food that is reaking havoc. Since Samuel is no longer contact reactive to milk, we have not seen hives in a while. And (except one small incident this summer) we haven't had anaphylaxis symptoms either in a long time.

I am so thankful to Dr. Fleischer because he very respectfully wants me/us to leave Denver believing deeply in our hearts that this is the case. He doesn't want us getting back to Memphis and still wondering about a food. Love him for this. Because truthfully, there have been many times when I was given false info from medical doctors in the past re: Samuel. Each time I did not believe them, and each time, I was right.

I could say much more about this, but trying to say it briefly.

Friday Samuel had a scratch test to environmental allergies in TN (horrible!! so allergic!!) and a blood draw (very difficult, even Daddy cried as they had trouble getting blood) to test for IgE in blood.

They should have the results back on Monday. At that point we will do a few more skin tests (called puddle tests) and start eating the suspicious foods looking for reactions. Which is the only way to really know. I don't know how long all that will take. We are supposed to be here for 10 more days. I hope we can finish our work by then.

NOW for the FUN NEWS! Daddy and Eli flew in on Friday! We have loved being with them. Today (Saturday) S had to go in for a bath and wrap, so we used the last bit of our morning to go to the aquarium which was fun. Tomorrow we are headed toward Golden for hiking and "seeing mountains" as Samuel keeps mentioning.

this was S's favorite part of the aquarium---seeing swimmers in the tank

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 work...so 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.

we are here, day 1

first of all, my shift key doesn't work---so nothing capatalized here.

we had a good day. pretty long. checked in at 8am and they couldn't get to samuel's bath until 7:30pm, which meant bedtime was about 10 pm according to his body that is making the time switch.

we saw lots of doctors.

and honestly, i keep trying to decide what to write and i just can't.

i will load a few pics of sam.

the main thing on my mind as i am going to bed, strangely enough, is not even about my child who is asleep in the bed next to me (we spend the first night in the hospital). i cannot stop thinking about the teenagers i have seen here. i don't know how to put it in words...it seems too sensitive/sacred to mention. i just feel intensely for them as i know their allergies, eczema, and maybe asthma has really affected them mentally over the years...which is quite the norm for such kids as they grow older. adorable kids that...are having quite a hard time.

please, if you know a teen with health issues that have seriously affected their daily lives, please be kind and sensitive. i've overhead a few stories today and looked into some sad eyes and want to help.

but for now, here is samuel.


on the plane. loving it.


in his bath. starting tomorrow he will have three a day, tapering off over time.


mummified (this is to help his skin absorb as much moisture as possible post bath. under blankets is sweatsuit. under that are wet pjs. under that are wet tube socks on arms and legs. we call them jedi wraps, coined by daddy.


headed for sleep. in bed watching monsters inc.