my last visit to Mt Sinai

[hopechap]

Last year, because of scheduling, I ended up seeing Sicherer. He is not usually who I see. He seemed a little displeased that we had food challenged and failed. I think my allergist felt bad about that too. I on the other hand, did not think it was such a bad thing. He passed the morning round - 5 grams - but reacted and failed the afternoon. It gave my son good nformation -- because he cannot remember his first reaction -- and in a controlled setting he experienced the effect peanut has on him and he came out of it a more cautious child who is not innocent as to what the fuss is all about. So Dr. S told us to wait a year before re-challenging. I asked him about de-sensitization and he said - I quote - well, he is probably going to outgrow. Okay. We also took the peanut component test.

and bummer. DS IS allergic to arah2 (?) and 8 - the one associated with bad reactions. So we learned that it not all birch pollen - he really IS allergic to peanuts (which, scratch head, I thought was the assumption all along). 

So this year we go back to our regular Doc there -- I am all excited -- having fed my beautiful boy gallons of camel milk since the summer. (I truly like camels milk -- it makes me feel good -but pricey and a little risky -- but excited to have my hot hands on the liquid gold of the dessert.)  So ya know i am hoping -- and damn -- spt to peanut is still there. I swear it is smaller -- but they draw around it in a big scraggly way. Dr. does not seem to be holding out the idea of a challenge at all - even before SPT. Challenge? well some people who have never had a reaction, and some people who are really allergic to birch. Hold on I say -- Do you mean that no one with a peanut allergy proper outgrows it ?? She says no -- but at first she seems to say that the component test has sealed it. I say - do you mean that the peanut component antibodies never go down? She says - we don't know - you were among the first to take the test -- we'll see. She offers me a walnut challenge - kind of a consolation challenge. And it is our last tree-nut. and we did fail that too last year.  But walnut HAS faded away on SPT.

We got the peanut component test and the RAST back and ole peanut did go down. But not to zero. We are at .45 now. And I geuss we have contributed to science that ARAh2 and 8 go down as well. But still not zero.

So I suggest Immunotherapy again. She tells me they do not offer it and it is not approved yet by the FDA. I forget to ask her if she believes there is any advantages to "outgrowing" naturally as opposed to going ahead with immunotherapy.  And IF we do Immunotherapy -- do the children carry EPIS for the rest of time anyway, in case it reverts?

The truth is -- it is the social awkwardness of the Epipen that I think I have always wanted to be done with. I would be different if I had watched my child almost die. His reactions scared me -- but never seemed life threatening. And I am a very shy person. And I hate all the times I have explained Epi while my son circled at a distance. I hate it as a social calling card. And it has hurt my son's social life.  So forgive me if I am a bit shallow in all this. I find the whole thing awkward and embarrassing. And I am sure these feelings do not help my son any.  So, if we are stuck with Epi for life -- do I still want to drink camels milk and pursue out-of-pocket OIT ? I think hell yeah -- because the teen he will soon be scares me too and yes, safety. But on the other hand -- will it give a false sense of security? I mean it would be almost impossible to convince a shoulder shrugging eyerolling teenager who eats Reeses Cups to carry an Epi for safety. Does it then become a real ghost - the peanut allergy that might rear up afterall?


8nd I am grateful that it went down and we are at an all-time low. But grateful was not exactly how I felt when we walked out -- more like comfort food please ! now.

[twinturbo]

What would be the most helpful to you first? This might sound dumb but think on it for a few before dismissing--check out the Auvi-Q because he form factor might alleviate some of the awkwardness. It's more discrete in a way that's amenable to males.

Sicherer seems to have become more conservative on peanut testing and challenges since we first saw him. I know the last blood test we opted for their newest type and that was off the charts. It might be possible that immunology itself is in the midst redefining tolerance which would include treatment options as well as outgrowing.

How are you all holding up in all this?

[CMdeux]

My sense-- and I could be wrong-- is that there are an increasing number of allergists who are growing concerned that there is an emerging, but as yet anecdotal, set of narratives involving... well, weird things.  With peanut allergy in particular. 

Given the rise in study participation and the level of oversight offered in those studies, the things that patients and members of communities like this one have known for some time-- that is, that there seems to be a subset of people who cannot be desensitized, there seem to be people for whom increasing tolerance is difficult, and that there ARE instances in which the allergy recurs in spite of patient compliance with ongoing consumption.

SO.  There isn't certainty to start with regarding what it means to be "not allergic" versus "tolerant" versus "allergic" to start with.  All of those categories may well be artificial constructs.

Also emerging is that OIT may not work the way it is supposed to... and that reactions during challenges don't always, EITHER.  Delayed/biphasic reactions are becoming a BIG worry with many challenges. 

It's also becoming clear (which is something that I wondered about when it first appeared) that the parameters and meaning associated with component testing isn't as clear cut as it was first assumed, either. 

The bottom line is that the entire field has tried to take what is "mostly" true for patients with food allergy and apply it to EVERYONE with food allergy-- and it doesn't work.  It's just now becoming evident, because up until recently most of the outliers weren't eligible for studies to begin with, so researchers never had a chance to come face to face with this stuff in a way that they couldn't rationalize some other way.

KWIM?

The mechanistic stuff still isn't well understood.  Until it is, there are going to be patients that fall through the cracks because they don't 'fit' the general rules.

But those who closely follow the research seem to be distressed because they are worried that applying "one size fits all" and "it'll be FINE, really" to everyone is eventually going to result in one or more fatalities as more regular clinicians become more aggressive with OIT and challenges. 

I know that is what our allergist is thinking.  He has implied that it is also what some folks like Burks and Sampson are thinking.


I'm sorry that this has been so emotionally hard, Hopechapel.     I don't find your concerns about the social aspects of the allergy petty AT ALL.  It is a real set of concerns, and it's your primary one because of your son's apparently high threshold.  That doesn't make it less real or important.   

[hopechap]

Thank you TwinT. We are holding up fine. Just a bad day and a need to re-calibrate. I have tried Dr. Li herbs and camels milk -- and now have no new alternative pursuits other than OIT.  Yes, I just want to be done with this, but don't we all?  And life is easier now than ever before with PA.  In the past, some of the very nasty rejections and scenes I had with programs, schools and camps -- seem in the past. And I have to say - perhaps i was a bit short-sighted. I wish I had kept my child out of pre-school rather than take on a new peanut-free policy that became controversial. And that is not to say there were not plenty of lovely, kind people. But the attention itself - positive and negative was hard (and couple that with other god awful things we went through).  And it shocked me how ungenerous people could be about nut-free for special events - like a class picnic. Once again -- the parent association -- all debating-- and one woman telling me off. I just did not have a very thick skin. I would duck a lot more and crusade less. Which is sad to say. But I wish I'd known that at age nine/ten -- it would be easier. That has been my experience of age nine/ten.  l wish also I'd known that there are many sleepaway camps that do not serve PB. And I know I am lucky to even be able to consider sleepaway. It was an important part of my childhood.  So forgive me if this is a whine of sorts. And my news WAS good. Just looking forward still to that happy day when he gets that outgrow diploma -- which has dangled before us now for many years but still eludes. So back to life.

[hopechap]

thank you CMDEUX. This makes great sense of the different messages we have gotten over the years.  I wonder if in some ways it is not so wonderful that the NYT made a cover story about OIT -- fascinating as it is.  The general perception is that we allergic kids are now out of the woods. And, like everything allergy -- they just don't know. 

It has crossed my mind that I need to reign in my enthusiasm for outgrowing --- the spectre of a sudden surprise allergic reaction will probably haunt us all our days.  Good grief -- I personally know of two cases of adult onset of shrimp and peanut allergy.

Perhaps I just need to surrender to the peanut allergy.  And quit wishing after normal. 

Thank you for the validation of my FA social issues.   Excruciating, really.

[PurpleCat]

And there lies my current frustration.  I have had too many phone calls from family, comments from friends, and questions from teachers.

No, DD can not be "cured" with the new "cure".  Really?  Must it be called a "cure".  My DD is so reactive that the allergist says she isn't even a candidate for allergy shots.  She at this time would not qualify for our local desensitization programs.

Sigh...............CMdeux....you get the science, you explain things well, wish you were an app I could pull out my phone and play your message for all these well meaning but annoying folk.   


Hey, a new career for you?  LOL!