PANDAS doctor Upstate NY

[nysteve]

Can anyone recommend a PANDAS doctor in/near upstate NY?

[fuelforall]

Can anyone recommend a PANDAS doctor in/near upstate NY?

 

Define Upstate. Where are you?

[faith]

up·state (pstt)

n.

The northerly section of a state in the United States.

adv. & adj.

To, from, or in the northerly section of a state: drove upstate on vacation; went fishing in upstate New York.[/b]

 

 

how's that Micheal?.................................. ...........sorry, couldn't resist.

 

how's your boy doing?

 

Faith

[Suzan]

Can you get to Ramsey NJ? Dr. Trifiletti is there. I have not been to see him yet but will be there next week although I hear good things about him.

 

http://www.site.neurokidsr.us/Contact.html

[ajcire]

Susan, I almost posted Dr. T but figured that was not upstate... I'm 40 miles North of NYC and live really close to Dr. T...

Susan, where are you travelling in from?

 

 

 

Can you get to Ramsey NJ? Dr. Trifiletti is there. I have not been to see him yet but will be there next week although I hear good things about him.

 

http://www.site.neurokidsr.us/Contact.html

[Suzan]

Susan, I almost posted Dr. T but figured that was not upstate... I'm 40 miles North of NYC and live really close to Dr. T...

Susan, where are you travelling in from?

 

I'm coming from North Carolina!!

[ajcire]

Wow! I guess I really have no excuse not to make good use of local resources.

 

 

 

Susan, I almost posted Dr. T but figured that was not upstate... I'm 40 miles North of NYC and live really close to Dr. T...

Susan, where are you travelling in from?

 

I'm coming from North Carolina!!

[Suzan]

Wow! I guess I really have no excuse not to make good use of local resources.

 

I fought as long as I could to try to find local docs and I think I've done a pretty good job but we need a specialist involved in my daughter's cases to help. You are lucky to have someone like him so close by! I am looking forward to the trip. We are taking the train.

 

nysteve, sorry to get off on a tangent in your quest for a local doc!

 

Susan

[nysteve]

Can anyone recommend a PANDAS doctor in/near upstate NY?

 

Define Upstate. Where are you?

Albany area...but could travel to most anywhere in the northeast if there is a good recommendation.

[ajcire]

Steve, I would guess you are probably around 3 hours or so from Dr. Trilifetti.

 

 

Can anyone recommend a PANDAS doctor in/near upstate NY?

 

Define Upstate. Where are you?

Albany area...but could travel to most anywhere in the northeast if there is a good recommendation.

[fuelforall]

up·state (pstt)

n.

The northerly section of a state in the United States.

adv. & adj.

To, from, or in the northerly section of a state: drove upstate on vacation; went fishing in upstate New York.[/b]

 

 

how's that Micheal?.................................. ...........sorry, couldn't resist.

 

how's your boy doing?

 

Faith

Hey, Faith!

FYI, I regard Buffalo as upstate New York too! And he sez Albany.

My boy is struggling, just increased the abx for a week so we'll see.

NY Dad, you can talk to Rhinebeck Health Center 845 876 7082 and ask to see Mike Compain or Steve Bock. Ken Bock takes six months before seeing patients, the others are a little easier to get to. They have an Albany branch as well.

[EAMom]

Can anyone recommend a PANDAS doctor in/near upstate NY?

 

I agree that Dr. Trifiletti. is the way to go. In addition, you might consider seeing an immunologist. Many on this forum have been happy with Dr. Bouboulis (1 hour from NYC in CT) http://www.latitudes.org/forums/index.php?...art=#entry42357 . Many PANDAS kids turn out to have underlying immune issues. Moreover, if you do find an immune issue, you are more likely to be able to get IVIG covered by insurance.

[nysteve]

Can anyone recommend a PANDAS doctor in/near upstate NY?

 

I agree that Dr. Trifiletti. is the way to go. In addition, you might consider seeing an immunologist. Many on this forum have been happy with Dr. Bouboulis (1 hour from NYC in CT) http://www.latitudes.org/forums/index.php?...art=#entry42357 . Many PANDAS kids turn out to have underlying immune issues. Moreover, if you do find an immune issue, you are more likely to be able to get IVIG covered by insurance.

Thanks all for the comments. We had a follow-up with our ENT as E had his tonsils and adnoids removed in early November. The ENT was suprised his symptoms did not improve. Our next scheduled step is a follow-up with our neurologist tomorrow and the PED next week. A blood test is due back to check titer levels so based upon the results of all those factors our next step may be Dr Trifiletti. I will keep everyone posted.

[EAMom]

Can anyone recommend a PANDAS doctor in/near upstate NY?

 

I agree that Dr. Trifiletti. is the way to go. In addition, you might consider seeing an immunologist. Many on this forum have been happy with Dr. Bouboulis (1 hour from NYC in CT) http://www.latitudes.org/forums/index.php?...art=#entry42357 . Many PANDAS kids turn out to have underlying immune issues. Moreover, if you do find an immune issue, you are more likely to be able to get IVIG covered by insurance.

Thanks all for the comments. We had a follow-up with our ENT as E had his tonsils and adnoids removed in early November. The ENT was suprised his symptoms did not improve. Our next scheduled step is a follow-up with our neurologist tomorrow and the PED next week. A blood test is due back to check titer levels so based upon the results of all those factors our next step may be Dr Trifiletti. I will keep everyone posted.

 

BTW....Dr. Trifiletti is a pediatric neurologist.

 

Also, be very careful about strep titers (ASO, anti-dnase b )...as they can be low in PANDAS kids (they were low for us depsite positive cultures and high Cunnigham CaM kinase ll levels). Many docs don't understand that and will use low titers as a reaon to rule out PANDAS. Read Busters Jan 11 and Aug. 24 posts on titers...lots of good info http://www.latitudes.org/forums/index.php?...art=#entry29305

[laure]

Can anyone recommend a PANDAS doctor in/near upstate NY?

 

I agree that Dr. Trifiletti. is the way to go. In addition, you might consider seeing an immunologist. Many on this forum have been happy with Dr. Bouboulis (1 hour from NYC in CT) http://www.latitudes.org/forums/index.php?...art=#entry42357 . Many PANDAS kids turn out to have underlying immune issues. Moreover, if you do find an immune issue, you are more likely to be able to get IVIG covered by insurance.

Thanks all for the comments. We had a follow-up with our ENT as E had his tonsils and adnoids removed in early November. The ENT was suprised his symptoms did not improve. Our next scheduled step is a follow-up with our neurologist tomorrow and the PED next week. A blood test is due back to check titer levels so based upon the results of all those factors our next step may be Dr Trifiletti. I will keep everyone posted.

 

NYsteve,

We live in Hamilton NY and see Dr. Bouboulis in Stamford, CT for PANDAS. It takes about a month to get in, but you can get a phone consult prior. It takes 4 hours from Hamilton, so perhaps 2-2.5 from Albany. Google him, there is tons of info on him.

BTW we are coming to Albany to see Dr. Bovenzi for lyme...any familiarity with her?