Monday, January 9, 2012

second opinions

After our first appointment with an allergist, Dr. B, we were not happy with the entire experience. His tests showed that Moose was allergic to everything under the sun: molds, grasses, foods, animals. He's never had a rash or any sort of reaction (although this doctor said he had neurological reactions); and the only allergy tie-in I've ever seen to autism is to gluten and casein (proteins found in wheat and dairy). I had read/heard about many testimonials from parents of other ASD kids who have seen improvements (usually on a large scale) when their child was placed on a GFCF (gluten-free, casein-free) diet. I believe that most of these kids had GI (gastrointestinal) problems and/or allergies to gluten/casein - Moose does not have any GI problems.

skin tests at Dr. B's 10/11

Now, I'm level-headed enough to realize that scientists and medical professionals do not always recommend this diet because there is not enough proof about it. I also know that sometimes doctors don't know their patients as well as their parents. I also know that parents sometimes hope for a cure so badly that they see things that aren't there, see improvements where there are none. I also realize that sometimes kids improve by maturing, by other therapies, etc. I didn't want to hope for something so badly that I saw something where there was nothing.

So we were trying the GFCF diet, very loosely. It's kind of a hard transition if you ask me (if you are making this transition and would like to attend a seminar online about the transition please email me ASAP - this starts this Wednesday. I won a free registration awhile back and it could be yours!). Anyway, Moose was basically drinking almond milk instead of cow's milk. The other stuff was so sporadic that it hardly counted. We have noticed improvements in his speech. Again, though, who is to say that it's not from him maturing and figuring things out? I don't know. He's not in any therapy otherwise (although we're starting a study on Tuesday that is going to teach me some ABA strategies!).

Back to the allergist. We had so many red flags form our visit with Dr. B. Not answering questions, not board certified (which I didn't find out until after our visit), giving our son an allergy shot that day for environmental allergens (remember when I said there's no links between autism and anything other than gluten/casein?), and other things that just were off. Big A is adamant that he felt our son was treated as a lab rat. I was upset that the nurse told Moose the allergy shot wasn't going to hurt (no matter how small the needle, it will still hurt to some degree; I don't lie to my kid). The office was kind of unprofessional-looking; I didn't feel the waiting area felt sanitary; and they didn't shut the doors, even when giving shots or taking blood. Those are just strange things but it was the not answering questions (like why don't doctors want to give your allergy shots? and what are the side effects of this shot?) that really were on our red flag list.

We got the blood results back and they looked like the skin results: the kid could eat nothing and was allergic to everything - except Sycamore trees. 48 allergens in all according to his skin tests (someone has mentioned that it was ridiculous to them that they would test for that many at one time). That just felt odd to us that there had not been ONE rash, one reaction to anything. Ever. In his life. So we wanted a second opinion.

Our regular family practitioner referred us to Dr. K. Dr. K sometimes comes to our town but we wanted the skin tests done that same day so we drove to his regular practice. Aesthetically, this was a medical building, like it should be. The nurse was really nice and the doctor was very pleasant. He watched Moose play, commented - seemed to genuinely take interest in him. He commented on how well-behaved he was.

Then he spoke with us about Dr. B. He's had several patients come to him after seeing Dr. B (a few are suing him!!) and not being happy with their results/his practices. Dr. K said that allergy shots, in order to be tweaked for each patient (since every patient has different needs) takes his office 3-6 weeks to get back from a lab (remember Moose got a shot the same day at Dr. B's office).

After the skin tests (only to test for foods since that was our concern - only 21 or 28 of them), I was shocked. Moose's back had NOT ONE welt, red mark. Well, one, the control. Otherwise, his back was perfectly clear. Contrast this to his back after skin tests at Dr. B's office: all red, all welty (not largely so but definitely welts). I asked Dr. K how this could be. He said (now, he doesn't know this for certain but this is his speculation) that you can twist or push hard enough with the things (can't think of the name) to make welts on anyone's back. I have also speculated myself that perhaps there was something in the solution. No matter how it was done, the difference in these test results shows that SOMETHING happened to make my son's back welt up.

skin tests Dr. K's 1/3/12

close up of skin tests 1/3/12 - the P is the control

So no allergies. Not even to gluten or casein. I cannot tell you how relieved and angry I was. Relieved that my son doesn't have to have such a major change to his diet. Angry that we were scammed. And that other families, well-intentioned families, are being scammed by this same man. I know that people have seen results with Dr. B (I've spoken with a few families that have seen him), but this is concerning to me. Not that they've seen results but that our experience shows that something is up.

Needless to say, we will not be pursuing a GFCF diet for Moose. I feel such a peace about this decision and these results. It's hard to wrap my head around the contrast in appointments we had. It's hard for me to not be angry I had to put my son through another set of skin testing. Later when we got back from Dr. K's office, I pulled his shirt up to look to make sure the control welt was gone. Moose said, "no more hurt back." I about cried. No baby, no more hurt back.

EDIT TO ADD: I had an anonymous commenter say this: "your first "allergist may have given your son a shot of steriods , sometimes called an allergy shot, to calm down the reaction from the "allergy shots"...this may explain the lack of reaction on test #2...esp. if these were done fairly close together. yes, i do believe that some doctors are not what they seem,... and the #2 results are correct...just something to think about..."  The allergy shot given by the first allergist was an allergy shot meant to help with environmental allergens, not a steroid shot. They did explain that to us. These tests weren't given that close together (October and January) so even if they had given a steroid shot (which I want to be clear, they didn't), steroids would have worn off by over 2 months later. They never even offered us anything like that, even with that awful reaction. So while this may explain it, in our time frame and situation where I clearly know it was an allergy shot not a steroid shot, this doesn't explain it.


In Light of the Truth... said...

That is just so crazy! I'm sorry you had such a bad experience that first time and glad you got some real answers from another Dr! Whew!

Anonymous said...

randi... your first "allergist may have given your son a shot of steriods , sometimes called an allergy shot, to calm down the reaction from the "allergy shots"...this may explain the lack of reaction on test #2...esp. if these were done fairly close together. yes, i do believe that some doctors are not what they seem,... and the #2 results are correct...just something to think about...

Stacey said...

Wow. I'd be mad too! I had allergy blood tests done as well, a couple years ago, and I believe that they were total fraud too. I was also allergic (severely, apparently) to every kind of grain, beef, all dairy, etc. I have never had trouble with any of these foods!

Bec said...

Oh. My. Stars.

How awful for Moose!! I can't even believe that first picture. I showed it to Aaron and we were both just slack-jawed.

I'm so glad that this little guy has such good, responsible, and well-read parents as you and A. My...lanta.

And shame on that first doctor. Shammmme on him. :(


Kara said...

YOU are so smart Randi. You just are. Smart in the head and smart in the heart- can't get much better than that!

Amanda said...

Hi Randi! I hope things are going well. It's been such a long time since Nate and I have seen you, Anthony, and the boys. I'm thinking about trying out a gfcf diet for a couple of days (to see if I'm allergic). Where did you find your resources/what resources did you use? Maybe one day we can meet up again. it'd be great to see y'all.

happy followers