Desensitization Programs in the US -- OIT SLIT SCIT

[CMdeux]

I'll add to that post that CA is probably no more "crazy" expensive than places near Boston or NYC.   

There are really NICE places to live near San Francisco which are not awfully expensive, and San Francisco is a delightful place in every possible respect, IMO (weather is mild all year long, city has major league sports, world class arts organizations, museums, and fabulous youth opportunities abound in the area).

Further north, Portland is also a very nice place to live.  It lacks just one thing that most similarly-sized cities have, however-- major league sports.  (Well, it does have basketball.)  The arts opportunities there are somewhat reduced relative to some places, as well.  But the quality of life there is excellent.  Outdoor activities (beach, forest, mountain, river, etc) are amazingly affordable and accessible considering that Portland is a major metro area.  There are four distinct seasons, winters are mild, summers are equally mild, and there is NO ragweed.  None.  But you do have to enjoy molds, and grass/tree pollen... and what they say about the rain?  All true, I fear.     Anywhere on the west coast is going to feel shockingly liberal (to the point of leftist, probably) in the cities, and astonishingly conservative (okay, pretty much "red-neck") in the less populous areas. 

From a food allergy standpoint, we have Guittard chocolates going for us, but little else, I have to confess.  WA state has some good school guidelines, but OR and CA both lag significantly, and both states have budget woes that mean that outside of a few bright spots, K-12 education is NOT very good here anymore.  If I were choosing a spot on the west coast, I'd probably pick Vancouver, WA.  It's just over the river from Portland, and is more affordable (and has those better WA regulations) and access to all that Portland offers.

[Ra3chel]

Further north, Portland is also a very nice place to live.  It lacks just one thing that most similarly-sized cities have, however-- major league sports.  (Well, it does have basketball.)  The arts opportunities there are somewhat reduced relative to some places, as well.  But the quality of life there is excellent.  Outdoor activities (beach, forest, mountain, river, etc) are amazingly affordable and accessible considering that Portland is a major metro area.  There are four distinct seasons, winters are mild, summers are equally mild, and there is NO ragweed.  None.  But you do have to enjoy molds, and grass/tree pollen... and what they say about the rain?  All true, I fear.     Anywhere on the west coast is going to feel shockingly liberal (to the point of leftist, probably) in the cities, and astonishingly conservative (okay, pretty much "red-neck") in the less populous areas. 

From a food allergy standpoint, we have Guittard chocolates going for us, but little else, I have to confess.  WA state has some good school guidelines, but OR and CA both lag significantly, and both states have budget woes that mean that outside of a few bright spots, K-12 education is NOT very good here anymore.  If I were choosing a spot on the west coast, I'd probably pick Vancouver, WA.  It's just over the river from Portland, and is more affordable (and has those better WA regulations) and access to all that Portland offers.

If you've got questions about Portland, feel free to PM me. 

[CMdeux]

... 99% of the Hazelnuts grown in the US come from the four county region just to the south of Portland, however... for someone with a TNA to hazelnuts, this makes restaurant dining in the region somewhat nightmarish.  Similarly, crustaceans, fish, and molluscs are also problematic in restaurants. (Some things to be aware of.)

However, peanuts (and, actually-- other treenuts) are not as prevelent as they are in some other places in the country.  Because of widespread vegetarianism and veganism, there are a lot of options for people with allergies to "only" eggs and/or milk.   Seeds (all types) and the following specific treenuts are common regoinally:  hazelnuts/filberts, walnuts, almonds.

  There are some very good allergists in the northern part of OR, and in Western WA.

We also have.... Burrrrrrgervillllllllllle....  Mmmmmmmmmm... pumpkin milkshakes....   

[CMdeux]

Talked to the Doc today about the group in Portland OR doing OIT using Wasserman's protocol.

Doc was quite forthcoming about several of the groups mentioned here.

Summarizing:

Wasserman's group in Dallas has-- by far-- the most EXPERIENCE with the protocol, and therefore, the most long-term data at hand regarding how participants fare down the road...

His <cough-cough> former colleagues  have started doing this in CT...  and they probably have one of the tightest programs currently running in terms of protocol standards-- reason being that they are running under an IRB approval.  (Institutional Review Board) In my experience, he's likely correct about that.  He has a highly collegial and current relationship with that group, incidentally.  They talked about the protocol when he was in Boston just a few weeks ago, apparently.

He knows Dr. Baker here in Portland, also.  He did mention that one of his patients had been through the program up there (without discussing it first, actually, which he said with a fair amount of chagrin-- I've openly stated that I trust his clinical judgement sufficiently that I would NOT do something like that without his knowledge and approval), though he doesn't have a lot of additional details on that person's experience.  (And couldn't share them if I wanted them, so I didn't ask.)  He feels that Dr. Baker is an EXCELLENT asthma and allergy specialist, though-- highly capable.  So for anyone considering it, that is probably very good news.  Our allergist has Sinai in his pedigree and is a desensitization guru himself (albeit not for foods); in our experience, he knows all the food allergy gurus personally and runs with that pack of several dozen that came out of the same training programs in the Northeast during the late 90's...  in other words, we think his judgment is generally pretty accurate.

Bottom line, he still thinks that for someone like my DD, it's probably better to wait another 2-4 years to see what happens when these studies (and treatment programs) have enough participants with more severe reaction history.  His opinion is based in part on discussions with one of the PI's in Little Rock.  Even the OIT clinical trials have not been entirely smooth sailing...

and unfortunately, there is still not a lot of understanding of what happens LONG-TERM as a result of this kind of desensitization therapy.  In other words, the concern is 'yeah, but what am I trading it for?' in the long term.

[SouptoNuts]

Hmmmm...trading it for an easier high school and college life? 



But thanks--that's really helpful.  I'll eventually add things to the table above with links--just can't do it yet.  I think it's good to get a list of all these in one place.  :yes;

[CMdeux]

No, his concerns were more along the lines of "other autoimmune dysfunction."

He mentioned Eosinophilic disorders in particular as having been VERY problematic for a certain subset (as yet not predictable via previous clinical history) of patients in this particular type of OIT with liquid doses... and that there just haven't been ENOUGH of the peanut patients to know if it is a problem for them, too...

and also, whether or not when the dosing is stopped, does the eosinophilia subside?  Evidence so far suggests that it may not be that easily reversible.

So yeah, that's not the kind of trade that anyone would (knowingly) make lightly, for sure.  EE is... <shudders>  NOT something I'd want to trade for a PA.  I think, anyway.     <sigh>

[mommabridget]

Very interesting thread, especially considering DS has been doing SLIT for over a year in a clinical trial.

BTW, he is on max dose - has been for months and still getting mouth tingling/itching and feeling of "impending doom" with most doses.

Good luck with your search. 

[Arkadia]

yeah, I'm in the same ballpark thought process as cm. If they *did* have anything obtainable, that would pass muster, it would be on the market now, raking in the dollars. It's going to be so "in your face", *IF* it ever happens. In the meantime, which could be a while, don't lose any sleep over it.

Seriously, I don't have a clue, but how did Xolair and it's cousin (I forget the name) do?

[hk]

Definitely let me know if you are interested in the Stanford study.  DD is starting it in February and I have most of the information you would need.  They are doing single and multi OIT and are also starting a peanut patch study at the beginning of the year.  They have already had some pretty good success with OIT for peanut only.

[Carefulmom]

yeah, I'm in the same ballpark thought process as cm. If they *did* have anything obtainable, that would pass muster, it would be on the market now, raking in the dollars. It's going to be so "in your face", *IF* it ever happens. In the meantime, which could be a while, don't lose any sleep over it.

Seriously, I don't have a clue, but how did Xolair and it's cousin (I forget the name) do?

Xolair had a small incidence of anaphylaxis to the Xolair itself.  As far as the cousin, do you mean Tanox?  That was before Xolair and looked promising, but two different companies were fighting over who had rights to it, so the studies were halted.   This was sometime when dd (age 16) was in elementary school.  When dd went to the FAAN Walk last month, another couple and I were speaking with the allergist who was there.  He feels that the densitization studies are very far off from ever becoming more than a study---numbers too small, long term results totally unknown.  He thinks that monoclonal antibodies are most likely to become the treatment, which is similar to Tanox.  He explained what the differences were, but I can`t recall right now.

[aggiedog]

Dd's been on her maitenance dose for over a year now.  No problems.  I have no idea if she'll ever truly outgrow, but even if she has to take 8 peanuts a day for the rest of her life, it is still a better trade-off than worrying about her contact ana PA.

[Arkadia]

do that brings me to inquire are they even taking kids with severe/anaphylactic reaction histories and high rasts? My son's is greater than 7000 (if I remember 5900 was a class 5. 6?) and he has an Asthma diagnosis. At least they used to refuse. Seemed to me the kids who needed such a "cure" were excluded from the studies, so I can't see an approval to use it in mass clinical trials, if the day ever comes.

[Carefulmom]

What I meant by no long term results was that some patients who have undergone desensitization have continued their maintanance dose, and then had unexpected anaphylactic reactions.  He said that desensitization could not become approved treatment until they have a way to predict which patients are candidates and which patients are at risk for anaphylaxis while on maintanance.

[CMdeux]

Yes, that has been our allergist's assertion since 2009, as well-- that until there are ways of differentiating who is a good candidate and who isn't, this is risky.

The news that some percentage of those treated are also developing eosinophilic disorders at more-than-expected rates is new, however-- and needless to say, disturbing. 

After all, in the case of "unexpected anaphylaxis," one could simply carry epinephrine and be aware of the possibility, YK?  It's not as if quality of life and medical status have been made "worse," really.

In the latter, though, that is DEFINITELY a risk that I want to know more about.

[Macabre]

My son has been accepted into the UVA program.  He's a class 3.  And his score recently went up.  When we tried to get into a Duke study a few years ago his score was too low (still a class 3--but we know that has nothing to do with risks for anaphylaxis, don't we?  His threshold for contact was pretty low). 

DS has no allergies to tree nuts.  He's never had eczema.  I'm just guessing he's at a lower risk for developing EE if that's a concern. 

I think the nature of the study protocol limits the number of participants. DS is in a small group. 

But enough places are doing them now that it's not that horribly isolated.

I do think the monoclonal antibodies  tack is probably the long-term solution.  But we'll be happy to go through a short-term one.  As long as he doesn't devleop EE, his quality of life will be improved immensely by desensitization.