Desensitization program now in Des Moines, Iowa

[IowaMom]

http://www.desmoinesregister.com/article/20111129/NEWS/311290066/Desensitization-program-helps-Urbandale-girl-sneak-peanuts-past-her-allergy

I'm not sure how to quote articles, but there are a few things about this article that bother me and make me question this program.  First, I thought it odd that they talk about the family's vacation out of state and that where they were visiting ice cream sandwiches were the safest thing for them to eat..really??  That would probably be the LAST thing I would feel comfortable giving my DD even if it was the only thing with a label.  But that's me

But what really bothered me is "....had a stomachache toward the end of the rapid desensitization, but since the medical team was looking for a skin reaction they discounted the stomachache." 

Not only that, but they continued to give her PN doses despite her getting dizzy/nauseated/extremely fatigued until they "realized" the stomachache was an allergic reaction and reduced the PN dose.  The article goes on  to say that the Dr now watches patients for stomach reaction as well as skin reactions.  

UNREAL.  Don't think I will be enrolling my DD anytime soon.  This is exactly why we DON'T take DD to any of the allergists here in town.

I also wonder why this is going on somewhere like DM, instead of at the University of Iowa in Ia City which is more well- known for thing such as this...there must be a reason.

[GingerPye]

I don't recognize this doctor's name.  Must be new.  Previously there had been no food-allergy allergists in DSM.
I wonder, too, why Iowa City is not doing this.  We had our baked milk challenge in Ia. City.

[IowaMom]

GP she's not really new; she is in the same office as Dr Coleman (across the hall from Dr Wille).  She's also not really a "food allergist"- she is a pediatric allergist.  That is why we decided to go to Ia City because there still are no "food allergists" here- and in my opinion (as the article shows) the ones that do treat food allergies here are uneducated.

[GingerPye]

well, let's just say I'm not impressed.  Sounds like this allergist is doing these desensitizations with many kids, even those with higher RAST results?  Sounds scary to me. 

[CMdeux]

That's what I was thinking, too, Ginger.

This sounds, in fact, EXACTLY like what our allergist has cautioned (and further; "worried") about with oral desensitization efforts being gradually rolled out clinically.

He really feels that NOBODY but the big league food allergy researchers have any business touching this one right now-- and that even then, it's potentially pretty risky.  In his opinion, the people doing it have been pretty fortunate thus far.

I'm guessing that the underlying reasons for that seeming "luck" have a lot to do with the fact that there's probably a minority of people with anaphylactic PA to begin with (this one is backed up by research even from 10yr back-- it's about 30% of people with a peanut allergy, apparently, but there's no way to know who is in that group clinically), coupled with the HIGH liklihood that many people currently labeled as "peanut allergic" may not be-- or may have such high threshold doses that they are effectively only "intolerant" in clinical terms...

So assume for the sake of argument that about half of contemporary diagnoses are "testing" based... that means that probably (at least) half of THOSE people aren't really allergic to start with...  and that the other half contains only about 10% who are fairly sensitive AND likely to anaphylax.

Then there's my hypothesis, which is that people with very low (or worse-- moving/unpredictable) thresholds are rarer still--


it's not really much of a surprise that desensitization programs haven't run into one of those people just yet.  There have probably only been a couple hundred people through PN desensitization programs anywhere in north America at this point.  Our allergist's fear (and my fear, as well) is that eventually, someone who doesn't know what they are playing with is going to be the unlucky practitioner who does.   

[Kelley2522]

I was just coming here to post this. Both of my boys have seen this allergist. I decided to try her because Iowa City is so far away and she was new. She has "an interest" in food allergies and attends regular seminars. Those are her words. I have had two lengthly conversations with her and I would NEVER allow her to do anything like this to my child. She has no clue what she is doing. I took my FA son there just to try her out and we went running back to Iowa City. I was shocked when I read this article and found out who had done it. This is so scary to me.

[hedgehog]

Quote from article:
Most of the patients in Dallas experienced skin reactions at that level. Kirsten had a stomachache toward the end of the rapid desensitization, but since the medical team was looking for a skin reaction, they discounted the stomachache.   
 Anyone who does not know this before starting to treat people has no business treating them.

Where DS is going for desensitization, they said all along that stomach ache is the most reaction (of course, they also watch for other things, and I'm supposed to record anything going on with him physically at home, just in case it is a reaction. 

I'll tell you, I do like where I take DS. After meeting with them, and doing my own research on what others have done already, I feel comfortable.  BUt it is sickening that allergists who don't really know what they are doing are trying this.

[CMdeux]

   Exactly.

It's really scary.

The other thing that I worry about is that there is probably a small percentage of people that are NOT good candidates for oral desensitization-- and maybe never will be-- but if more and more allergists bring this into wide-spread clinical practice with the other 80/90/95/99/99.9% of patients, it is going to make it that much harder for those who truly CANNOT do it to argue for accommodations from others:


Why should everyone else have to _____________??  Why don't you just go get that fixed?   



Of course, sad to say it, but I suspect that there will probably be a fatality at the hands of a physician/practice that doesn't know what they are doing well before things get to that point.     I think this is what haunts our allergist, too.  (He was once with the practice that you're seeing, Hedgie, so he knows a lot about that protocol and thinks that the physicians running the program are really good ones that know FA and anaphylaxis very well-- I think his concern is that not everyone does.)

[jsaari]

Bummer. I've had a severe milk allergy for all 32 years of my life. I was hoping this would be an answer. Does anybody think highly of this allergist? Or other allergists doing this type of thing? Has anyone had such a thing work well for them?

[GingerPye]

.

[Macabre]

Jsaari---yes, but a different doctor and state.

[YouKnowWho]

Kelley - I think I saw her twin sister in GA 

Wow, I am an allergist, I eat food, therefore I am a food allergist specialist.  Oh your son is allergic to corn, so am I - he should drink Gatorade because it makes me feel better.  You mean the one with high fructose corn syrup in it?

Wow, I know some kids, I am an allergist, therefore I am a pediatric allergist specialist.  I am so good with kids I hold toddlers heads down on the table forcefully while speaking to the nurse about another patient (HIPPA much) and ignoring the fact that I want to check his ears. So what if he is traumatized, she is a specialist.

May contains labels are CYA, that is why you carry an epi pen. 

Blech.

[CMdeux]

Jsaari---yes, but a different doctor and state.

   And some of the preeminent physician/researchers in this field regard this type of desensitization as firmly being in the category of "experimental treatment" at this point in time.  The long term risks and benefits are not known.

Could be that it doesn't work for everyone.  Could be that it works, but not forever.  Could be that it works, but also elevates the risk of {unknown long-term side effect}.  Obviously, there is a risk of reactions during treatment, and there is no doubt that those reactions can be quite serious.