Desensitization therapy for adults?

[jschwab]

Yeah, I am starting to pick up on how rare these docs are. Desensitization therapy is kind of far out on the horizon right now - my question was more to clarify what my doctor told me (ie. there are "food allergy shots"), not so much to indicate that I am burning to do a course of the therapy. I find it a little stressful to think about. My quality of life is not terrible and I have serious family obligations that preclude going down to Baltimore on a regular basis.

At this point, I just need to talk to someone who can tell me if I'm likely to keep reacting to new things, what the latest research shows, what could help minimize reactions, stuff like that. I'm getting nowhere online trying to find a doc who is publishing or treating in this area where I am, though, which is kind of crazy because I live in a center of medical research with a high concentration of research hospitals. I finally decided to ask in my moms' group for recommendations for pediatric allergists that specialize in food allergies. The doctor I was sent to has an "interest" in food allergies but I looked at her published papers and it's all on asthma, so I think I will give her a pass and keep looking. Hopefully, I will be able to get a new referral for someone else.

[twinturbo]

Understood. It's hard to factor it in a way that makes sense because unless you see an allergist on a regular basis you don't realize how infrequently you usually see your allergist on a regular basis. The most that would happen is an establishment appt you get your blood and scratch done, get your script, then get a call back to discuss your results. Unless you're seeking active treatment you see them intermittently to about once a year. Initially you might do a food challenge through a local allergist who shares you with a guru as a 'mutual patient'. It's a nice happy medium because you get the big facility protocols at your local office--when all parties agree.

Being seen at a food allergy research facility makes it lickety-split, no bull(  ) instead of speed dating the pool of unknowns in your more immediate area. Two hours each way once per year is nothing and I say that with an utterly ridiculous full plate. I would never recommended it unless, in its own way, it's less a hassle than working your way through dead ends. And you got some dangerously bad info based on what you said.

For sure you'll want to weigh all your options but if you need a sure bet to move on and the ones in your more immediate area are floundering, it'll get the job done. Don't worry about getting a cure there isn't one. The game becomes getting someone who can correctly triangulate what your true allergens are, how much you need to avoid and what your emergency plan is.

It's all up to you but explaining the method to the madness hopefully puts a better perspective on it.

[jschwab]

That makes sense and I appreciate you taking the time to type it out. Can I ask you again who the doc is, because when I went to the Hopkins site, I could not find a Woods? I think looking at their website, it's indistinguishable from the services offered up here at Penn and Jefferson, but you are saying it's much better clinically because they actually do food allergy research there? I think I am just still trying to wrap my brain around the fact that there is no serious research being done in Philly, given how much medical research goes on here within ten minute's walking distance from my house. But I think you are right, it's really bad. I just messaged with a mom in my group whose kid was in the hospital for two days when he was three for a milk allergy diagnosed at 6 months of age and she has never seen an allergist since he was 6 mos. old because she can't find someone she trusts to do an oral food challenge. The are just winging it and he almost died. That is just crazy to me!

Just to be sure I am looking in the right place, is this the clinic you mean http://www.hopkinsmedicine.org/allergy?

[twinturbo]

I'm gonna jet for the day in a sec but didn't want to leave you with a dead end.

Wait to see if some of the others can come up with someone in Philly and/or others that go to Johns Hopkins. I think lakeswimr goes to that facility so first hand insider data is good. Maybe she knows something about adults in that clinic or specific doctors. It's Saturday anyhow.

[jschwab]

Thanks, your tip led me to finding that there is a food allergy consortium for research (no Philly institutions involved). Johns Hopkins and Mt. Sinai's Food Allergy Institute were the closest. My uncle is traveling down to Hopkins for treatment of a rare disorder he just developed. I think i am just the kind of person who feels dumb making a fuss over something that cannot be helped, KWIM?

[rebekahc]

The doctor mentioned earlier is Robert Wood, but he's pediatric @ Hopkins Children's Center.  It's usually quiet here on the weekends, so you may have more Philly area people chime in Monday.

[twinturbo]

Let's play guess a Philly allergist with five minutes of Google. http://www.philadelphia-allergy.com

AAAAI.org lists him board certified sees both pediatric and adults participating in continuing education with other allergists through AAAAI.org's education feature which I guess shouldn't be visible to the public but someone there messed up permissions on individual file retrievals.

He's got at least one paper (I think he was lead author hard to read on phone screen) on anti-IgE, and no matter where I look I can't find a bad review on the man. I don't know if this is the guy you saw but on paper he's very promising.

And if you want to email him first I grabbed his address from the AAAAI.org education file. Not always the best way but it was there.

[lakeswimr]

Have you had anything with peach since?  Some people have such bad oral allergy syndrome that it can produce some throat swelling.  I wonder if that might have been the cause?  Oral Allergy Syndrome rarely requires the epi pen but sometimes it does in people who get throat swelling.

[jschwab]

Let's play guess a Philly allergist with five minutes of Google. http://www.philadelphia-allergy.com

AAAAI.org lists him board certified sees both pediatric and adults participating in continuing education with other allergists through AAAAI.org's education feature which I guess shouldn't be visible to the public but someone there messed up permissions on individual file retrievals.

He's got at least one paper (I think he was lead author hard to read on phone screen) on anti-IgE, and no matter where I look I can't find a bad review on the man. I don't know if this is the guy you saw but on paper he's very promising.

And if you want to email him first I grabbed his address from the AAAAI.org education file. Not always the best way but it was there.

Oh yeah, he looks much better. I would not have noticed him in the long list of indistinguishable practices. He is not the person I saw. It sounds like it would be easier to call and get a read on a single-person practice than one of the big practices.

[jschwab]

Have you had anything with peach since?  Some people have such bad oral allergy syndrome that it can produce some throat swelling.  I wonder if that might have been the cause?  Oral Allergy Syndrome rarely requires the epi pen but sometimes it does in people who get throat swelling.

I don't know much about OAS. I have a few friends who have it who cannot eat uncooked fruit without their mouth swelling. This did come on at the height of fruiting for tree nuts in my area. There are walnuts laying all over the ground where I bike and my backyard is littered with gingkoes (which I'd be roasting if it weren't for this - I hate seeing them go to waste!). I have not had peaches since the attack, but I have eaten apricots, apples, pears and tons of bananas with no problem. Does OAS usually lead to other symptoms of anaphylaxis like drop in blood pressure and hives?

[LinksEtc]

Just to be sure I am looking in the right place, is this the clinic you mean http://www.hopkinsmedicine.org/allergy?

Hi Jschwab,

I think you were looking at the adult site:
http://www.hopkinsmedicine.org/allergy/interests/

Here are the allergists at Hopkins' pediatric allergy.
http://www.hopkinschildrens.org/allergy-faculty.aspx

-----------------------------------

I don't have a PPO now so I have to rely on the referral from the doctor and I'm not sure if I can just pick and choose who I go to like I used to be able to. As it was, this was a two month wait for this appointment, but maybe it doesn't matter since I have my Epi's in order and it's not clear that just any allergist will be able to help very much? I'm half a mind to just cancel so I don't get stuck in a rabbit hole again. I really, really, really hate going to doctors and would prefer to avoid it if possible.

For difficult cases, I would agree that Hopkins (at least pediatric) is worth the drive, but I'm not sure you're at that point yet.  Am I correct that you haven't seen this Phili allergist yet?  Do you have any reason to doubt that this particular allergist would not be able to help you sufficiently?  Is this a board certified allergist having significant experience with FA?

You sound like you could really benefit from an allergist's help ASAP so I'd hate for you to cancel an appointment unless you have good reason to doubt that this local allergist will be able to help you.  It doesn't sound like you are interested at this time in participating in research such as desensitization, so cutting edge research doesn't need to figure in to your decision making so much right now.

---------------

Do you have a food allergy action plan that is signed by your doctor?

For example:
http://www.foodallergy.org/document.doc?id=234

Do you now always carry epi & are you prepared to recognize symptoms of an allergic reaction and treat accordingly?

Start with the basics ... don't get ahead of yourself worrying about stuff like OIT or SLIT.

[LinksEtc]

My primary doctor handed me a prescription for epinephrine and told me to find a youtube video at home to figure out how to use it and that I did not need to see an allergist since they "can't do anything".

Is this your primary doc now?  This would make me consider getting a different primary doc.

A good primary doc will know the value of referring to appropriate specialists.

[LinksEtc]

Hi, I might have a few questions for awhile. So, I just had a major new allergic reaction to a new food. When I did my followup appointment (with a doc in the practice but not my regular doctor), she said that she sends her allergic patients to an allergist who gives shots for food allergies when I asked her if an allergist could help besides testing.

As I think the others mentioned - this was bad info ... reputable allergists are not currently doing shots for food allergy.

[Macabre]

For shrimp: I never ever eat grilled or fried food in a restaurant unless the chef can guarantee that it is a dedicated surfaces. They will say, "we clean the grill well," and I will ask of they cleaned it with bleach or soap and water, knowing they didn't (I wouldn't either).  Also, many places fry shrimp in the same place they use for frying other things--like chips. 

I'm guessing fryers also pose problem for milk.

Even though shellfish and nuts Te more common adult onset allergies, you can develop an allergy to any food.

Honestly, right now--and I am saying this as a person who developed allergies in 2005 as an adult And who has a 15 year old son with a peanut allergy, i would recommend living with it a bit before you worry about desensitization. Learn what's safe and what isn't--and how do be a sleuth at avoiding.

Everyone wants to get rid of this. But early on its good to do us on living with it.

[LinksEtc]

I did go back and read your story more.

I'm sorry to hear about your experiences with the first allergist & the paramedics.  You are your best advocate. 

I agree with Twinturbo about frogs ... We here can help you recognize when you might be dealing with one  . 

Finding a good allergist is extremely important - don't give up hope- there are lots of them out there.  With a good allergist, tests like office food challenges can be extremely helpful in confirming true allergies.  We have been through several.

Please be aware that just because some reactions may have resolved without epi, that doesn't mean future reactions will.  If epi is not used in time, it has less of a chance to be effective.  It sounds like those paramedics telling you it was anxiety were out of line.  Get a good allergist, get a good allergy plan, and don't let others make you doubt yourself.