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Author Topic: so what now?  (Read 1947 times)

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Offline MandCmama

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so what now?
« on: August 04, 2013, 05:18:12 PM »
Given our baked egg fail this week and given the heart wrenching FA death last week, I'm kind of in a funk. We've talked about taking the boys to Mt. Sinai, which isn't far, but a logistical stressor...if only it were CHOP, which is literally a straight shot down the turnpike with safe havens all scoped out. My parents are really pushing for this. Especially when I had to ask for a peanut SPT for C before pre K.  We go back in a few weeks. They were very much shaken by the circumstances of last weeks' death.

But when? We just failed. Do we wait a year. Go now?
 I've said it before.  Our doctor has been good to us. But. It's a small office, she's close to retirement, she's gone to part time, and this is not a teaching establishment.

 :hiding: just want to crawl under a rock and forget stupid allergies.
Pennsylvania, USA
DS#1 (Born 11/2006)- allergic to peanuts and tree nuts
DS#2 (Born 3/2009)- allergic to egg, peanuts, and tree nuts

twinturbo

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Re: so what now?
« Reply #1 on: August 04, 2013, 05:47:26 PM »
Your kids sound old enough to minimally handle the travel so under the circumstances with the allergist nearing retirement it's reasonable to consider getting established, here's my advice having been there. They like to get things done at Sinai so there aren't going to be much in the way of consulting appointments. Getting paperwork for schools or camps processed now costs money which I think is reasonable but that is another telltale sign it's a research as well as patient driven facility.

Access to the doctors seems to be dictated by which insurance the doctor accepts. Initially with our old plan only Sicherer was available, the "only" there being one of the top names but still it was a matter of matching doctor accepting new patients to insurance plan. An establishment appointment may also be quite a ways off therefore the earlier you dig into establishment procedures the better.

I'm not sure what they may write up for EAPs since we're no longer there but what they gave to us wasn't really in line with the FARE EAP with respect for epinephrine upon known ingestion.

ETA: I have no keyboard so my syntax and grammar will be more off than usual.
« Last Edit: August 04, 2013, 05:49:14 PM by twinturbo »

Online my3guys

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Re: so what now?
« Reply #2 on: August 05, 2013, 08:51:14 AM »
My experience has been the same as twinturbo's at Mt. Sinai. 

We were there last two years ago.  They completed the forms noting to give epipen upon signs of anaphylaxis.

I've found them to be very helpful, providing more expertise than our local allergist.  For example, my older guy was very fearful of sitting at the regular table at lunch instead of the peanut free table, and they addressed that very well with him.

At our last visit for the milk clinical trial, they mentioned a baked egg trial would be starting.  So you may want to get in the pipeline for that.  I know he just failed a challenge...but...they may start on a different dose then he was just challenged.  You never know.

I know milk seems to be different than egg with baked tolerance, but ds started out anaphylactic to milk, would have small reactions to shared equipment with milk, and four years later, he consumes milk without any problems.

Overall Mt. Sinai has been a very positive experience for us.

twinturbo

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Re: so what now?
« Reply #3 on: August 05, 2013, 09:24:31 AM »
I also think you'll like their record keeping protocols and promptness. As I said they process a lot all of the time so IMO, and remember I'm a native New Yorker, it was the most polite, responsive and effective support staff of any medical place I've ever been in.

They do this cool thing with scratch tests with pen and a piece of tape to take a film of the boundaries of the actual wheal. Sicherer, and Dr. Li were the two main doctors we interacted with and busy as they are they always replied timely to questions via email. The nurses were always great with the kids. The one con for me was the effectiveness of Sicherer's researches studying under his wing--didn't care for them saw too much of them initially. Sicherer himself is an incredible person and was a pediatrician first before researcher with DS1. But if I had to do it over again Dr. Nowak would have been an equally great choice. She's been a primary author on many papers herself.

Every time DS1 went in for an appointment he also got to go to a museum
and Times Square Toys R Us. Remember to keep your receipts for travel costs it should be tax deductible.

The Northeast being what it is geographically Boston would be an equally viable option IMO. I don't know what that does to your drive. While we didn't bring the kids to Harvard/Brigham/CH, I was a patient at B&Y/Harvard. The discovery coming out of allergy there seems... accelerated. In relation to a response post I owe ajas, I idly wonder if the internal review board fast tracks Boston because they seem to get more 'experimental'. They also seem to have more clinics for kids in how to deal with aspects of life with allergies. You get the added bonus of NEAQ, MOS, art, MIT natural history, and all the FA restaurant laws. We couldn't because too many top 8 allergens but with fewer allergens it's probably enjoyable.

Offline MaryM

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Re: so what now?
« Reply #4 on: December 16, 2013, 07:55:49 AM »
I really love Mt. Sinai.  Dr. Nowack is wonderful.  We just started seeing her this past August  after our other equally wonderful doctor there moved to CA.  I live very close to CHOP but have never been able to get a real person to answer the phone or even call me back. I gave up on them years ago.

Offline MandCmama

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Re: so what now?
« Reply #5 on: January 08, 2014, 07:59:46 PM »
That's interesting Mary M. I've never really heard of anything coming out of CHOP, but DH just told me a coworker's son, who sees a different allergist than our boys, was being sent to CHOP for a baked milk challenge. I definitely need to get more info. If I find anything helpful, I'll be sure to post!
Pennsylvania, USA
DS#1 (Born 11/2006)- allergic to peanuts and tree nuts
DS#2 (Born 3/2009)- allergic to egg, peanuts, and tree nuts