We discussed a baked egg challenge again with our allergist (due to miniscule exposure:2 eggs in 80# of pizza dough baked in a 900 degree coal oven), but since his skin test is still very much positive, she won't do it. She said if we could identify via component testing, exactly which protiens he's allergic to, she may consider it. Right now, Siani is the only place she feels comfortable with. I'm game, but here are my questions:
1) once we're there, would they be more likely to do a baked egg challenge regardless (this is my secret, covert hope) of his skin test without bothering with component testing?
2) has anyone's insurance ever picked up component testing?
3) would all of this be worth the stress of a 2 1/2 drive into a city that I will NOT drive in and dh has only even been to a handful of times? with 2 food allergic toddlers. In a mini van.
The testing I won't comment on because I think it's so individualized. Sicherer gave us a rough 70% odds without component testing. But the drive isn't impossible in NYC. I haven't lived there for decades and I could drive around easily. I would advise a full tank right before going in wherever you're coming from whether from southbound from north or from Pennsylvania, CT, NJ, gas up to full about 20-50 miles before you get in the city.
I also can't comment on the component testing; we plan on DS having it this spring. Dr. Nowak from Mt. Sinai was hopeful that by that time our insurance (Oxford) would pay for it. Even without, As I recall the cost wasn't exhorbitant.
As for driving, I'm not sure where you are coming from, but I really don't find driving there difficult. Then again, I learned how to drive in Brooklyn, so I'm not easily intimidated behind the wheel. Except, perhaps, in China. ;-) All kidding aside, if you're coming via either the GW Bridge or the Triboro, it's not bad at all, and there is a garage about 2 1/2 blocks away from the office.
I drive into the city (or through it) pretty often. Dh won't drive it. That's my job. ;D Maybe you can drive to Hoboken and take the PATH in from there? I don't know how far up Mt Sinai is but it seems like to would at least be worth doing once.
If you want to go to Hopkins instead in Baltimore, I can give you the name of our allergist there- he is at Hopkins 2x a week and 3x a week in his regular office. We go to the regular office now and do food challenges there too. I keep meaning to ask him about the component testing, but it isn't high on my list right now.
There's always White Plains to Grand Central get a yellow cab over to E 98th. That's not a bad train ride although I don't remember if there's a park & ride in White Plains.
Going nuts- I grew up in NE PA in a small town on a dirt road, went to a college in an even smaller town that was surrounded by cemeteries on 3 sides and an nursing home for retired clergy on the 4th. In my area of the state, 2 lanes going in the same direction is a lot!
Upon graduating, I decided that someplace within 2 hours of home could not possible be that different from home. SOOOOOO, I took a job in Passaic, and an apartment in Nutley and spend the next year learning just how wrong I was! Jug handles, circles, Big Ben! Parliament!. Your highways dump you onto other highways with no easy way to turn around. An exit ramp is like 10 feet long, so you have to slow down from 80 to 25 in 4 seconds. On ramps give you 4 seconds to accelerate to mock speed, and NO ONE will let you in! And the aggressiveness.
The first time I drove myself to the Short Hills mall, I came home and hid under the covers for the rest of the night. An attempt to find the emergency vet, left me stuck at a Garden State PKWY toll booth with no money and a cat foaming at the mouth. The attendant let me through bless him, but I ended up in a BAD area of Passiac, alone (except for foaming cat), at night. I ran my first red light when a guy with a bottle in a brown paper bag made for my car door. The cat and I wound up in a Crazy Eddies, and never did find that vet...
I drove to Hoboken once....
Have I mentioned I'm an anxious person, lol. The whole year I lived there, I went into the city 1 time! And I LOVE the city. Negotiating it just terrifies me... :hiding:
Take the NJT in from Dover then!
Test.
No, the Dover, NJ, train station off of rte 80. Or from Hackettstown. Easy to get to that train line from NE PA.
I'm talking about the Montclair Boonton line or the Morristoen line if you are coming in off of 80 from PA to NJ.
http://www.njtransit.com/pdf/RSM11_19_2012.pdf (http://www.njtransit.com/pdf/RSM11_19_2012.pdf)
The train from Dover is a great option - I think the train ride is over an hour but you can catch a cab at Penn Station. I take the train from there when I am at my parents' summer house and meet friends in NYC. If you are brave enough to drive in, it's pretty easy from the GWB. The 2 times we went that's the route we took.
We are so glad we took th plung and went to Mt. Sinai. Kids are doing baked dairy now and it is great! Best of luck.
ohhh...the boys would LOVE to take a train! Thanks for the tips! Just waiting to hear back from our allergist. She was going to call Siani and get some info for us (will the y just do component testing or do we need to be seen first. Really hoping we need to be seen :crossed:)
The hard thing I found about driving there was not the getting there part, but finding a parking spot. My dh literally drove around for 50 minutes looking for one. Had he not been with me, we would have missed our appt. because I would have been driving around looking for one.
MandCmama, ROFL on the foaming cat! BTDT, just not in Passaic. ;)
Though I did end up in one of those not so great parts of Passaic on a job once, and almost ended up in the ER myself. Long story there, and not worth it - just saying I understand your feeling about it, LOL.
I'd rather drive Manhattan any day. NJ roads confuse me. ???
Forgive me for hijacking your thread, MandCmama! but for parents that have a longer term experience with Sinai doctors how are they generally on support for accommodations at school? Anyone get the FAS gold standard letter (that I have to go off and find) signed off successfully?
We've only been going there for a few years and have never sought accommodations in that time. I have heard of other folks locally here who have used them and have been successful. I think they're good at churning out paperwork.
MandCMomma - I grew up the next town over from Nutley and lived there until I got married & moved 'down the shore.' Your description of Nj driving is true. It stinks. I just had to teach my 2nd daughter, and it wasn't easy. Jughandle? Left turn lane? Circle? Turnoff? You don't know until you're on top of it.
I like the advice of taking a train into the city. I hadn't been into the city in well over 20 years but used to drive in often when I was younger. A few months back I went in with my daughter taking the train from Red Bank and took a cab to the Metropolitan Museum. Coming back, we easily found our train at Penn Station. I was very nervous about the whole thing, but it was quite simple. We bought the tickets, round trip, right at the train station kiosk. No worries about parking and stress over driving in the city.
I wish you luck. My daughter's allergiest suggested going to Mt. Sinai, but she absolutely refuses. Frustrating!
When we saw dr. sicherer a few years ago, he asked how our school situation was etc. we had just gotten our 504 and he seemed happy about that.
I would think they would be helpful with schools. i think there is a section in sicherer book about schools.
SR, my son refused for years too. Stubborn children. :disappointed:
We just made our appointment with Dr. Nowak for March (she does have openings sooner, but that's when he'll be home from college).
DS1 saw Sicherer for yearly tests yesterday nothing new or earth shattering on an individual front, BUT two interesting studies we chose to take part in.
Egg - Sicherer says they no longer use ovomucoid as a tolerance factor for baked after their findings showed it unreliable. They are studying a new test and asked us if we wished to participate we said yes. We were told we are allowed to get the results and an explanation of the test when completed.
Peanut - An investigation of genetic markers and mechanisms so finally some real discovery not crappy correlated garbage. We participated for the sake of benefit to all also because they said it was possible they could potentially investigate treatments or mediating medications depending on results.
The whole staff was terrific and Sicherer has the parent-kid coding down perfect! When they were talking about blood draws and scratch tests Sicherer said "We'll do this (point to skin) first then we'll do the other one." Nudge-nudge.
Jet Blue was pretty good on nutty stuff and some of the younger flight attendants checked in often on Bieberific DS1 which he in turn liked.
I love Dr. Sicherer. I wish he took our insurance. He really related well to older DS when we were teasing out whether or not he was truly TNA or just having outrageous reactions to birch. Plus, he has an awesome sense of humor, which my son really appreciated.
I do like Dr. Nowak very much as well, but particularly for older boys, I think a male MD just gets through to them better.
We got our numbers back today. While we're going to need Sicherer to run through some of the nut numbers because the tests are a little different than we're used to I think this is what is shaping up:
Peanut unchanged, egg white still possible for baked challenge, but now we have to add suspected almond, cashew and pistachio. Which is weird because I know he's had almond in the past but that was then this is now. Hazelnut and walnut still come back negative so those may be possible. The rest of the tree nuts were iffy. All crustaceans were negative.
At this point I think I'm pulling shared line gross contamination with almond. There were a few suspected almond contaminated soy incidents to warrant concern now that I've seen the number come back. That's a bummer I was hoping to get almond but if hazelnut is go we would gain Nutella.
Oh, that is a bummer, TT. Sounds almost exactly like DD's current set of allergens.
We've talked some about challenging almond, but I hardly see the point since we have rxn Hx that supports (by process of elimination) the notion of reactivity to traces.
Hazelnut is a nice addition, though-- and you CAN get uncontaminated (single-source) hazelnuts grower-direct. They are lovely in salads and on hot cereal.
I know! I was thinking what are the odds of that happening? Crazy.
Yes--hazelnut is nice to have. :) DS loves the Ferrer Roche chocolates. I don't know if they're labeled for anything else you deal with, though.