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PANDAS Neurologist/Psychiatrist in MA,CT,RI,NY


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17 replies to this topic

#1 Guest_asaxon_*

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Posted 18 June 2009 - 11:35 PM

My daughter was suddenly stricken with severe OCD about a month ago, and she seems to fit the PANDAS profile quite comfortably (prepubescent, sudden-onset, severe OCD (but no previous history), obsession with urinary hygiene, extreme and debilitating separation anxiety, recent exposure to strep and positive ASO titer (but recent culture was negative and not symptomatic), dilated eyes. Ped & psych proscribed Zoloft, a short-course of Zythromicin, and behavioral cognitive therapy. From where I'm sitting, this treatment response feels being handed a fly swatter to try to kill a rabid bear. (It's not like the doctors can claim ignorance of Susan Swedo's 1999 study, because I handed them copies of it.)

I'm looking for a pediatric neurologist or psychiatrist in Massachusetts, Connecticut, Rhode Island, or New York (in that order) with specific experience in--and willingness to consider--treating PANDAS with immune modification therapy (IVIG or Plasma Exchange) and long-term antibiotics. Does anyone know of any?

Thanks.


#2 NancyD

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Posted 19 June 2009 - 08:00 AM

asaxon,

I recommend seeing a DAN doctor, rheumatolgist, or immunologist over a neurologist or psychiatrist for PANDAS. In NY I highly recommend Ken Bock, MD (Rhinebeck, NY), who does integrated medicine. He is a DAN doctor and author of Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies. He has a lot of experience with PANDAS and he offers IVIG at the Rhinebeck Health Center. He diagnosed my daughter's PANDAS 6 years ago and he is wonderful -- a real medical detective. He does not accept insurance though. In Massachusetts I recommend Robert Fuhlbrigge, MD, a pediatric rheumatologist at Children's Hospital Boston. He has been very supportive and helped to faciliate monthly IVIG infusions for my daughter at Children's where we get full coverage from our insurance company, Harvard Pilgrim Healthcare. He wants her to stay on her antibiotics long-term. I also like Elizabeth TePas, MD, an immunologist at Mass General Hospital for Children at Newton-Wellesley Hospital.

Nancy

#3 Darla

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Posted 22 June 2009 - 03:34 PM

Dr. Alcy Torres
Pediatric Medicine Neurologist, MD
300 Longwood Ave
Children's Hospital Boston
Boston, MA

I had read that he specializes in PANDAS- appts are a few months out to get him. We made an appointment but ended up seeing another neurologist b/c our pedi wanted our son seen sooner. I found the neurologist we eneded up seeing to be some what unhelpful. I think a lot of people in this forum don't get far with the neuro's. not sure if hes into the IVIG or Plasmas exchange. The neuro I ened up taking my son to wanted to put him on Bactrim which isn't the most effective antibiotic for strep I had come to find out- i opted to hold off, i just wasn't confident in her. Anyways, I would start with contacting Dr. Torres if you are looking for a neuro who deals with PANDAS. I couldn't find his number sorry.

_______________________________________________________________________________________________________
I'm looking for a pediatric neurologist or psychiatrist in Massachusetts, Connecticut, Rhode Island, or New York (in that order) with specific experience in--and willingness to consider--treating PANDAS with immune modification therapy (IVIG or Plasma Exchange) and long-term antibiotics. Does anyone know of any?

Thanks.
[/quote]

#4 Guest_asaxon_*

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Posted 15 July 2009 - 11:24 PM

[quote name='Darla' post='34245' date='Jun 22 2009, 04:34 PM']Dr. Alcy Torres
Pediatric Medicine Neurologist, MD
300 Longwood Ave
Children's Hospital Boston
Boston, MA

I had read that he specializes in PANDAS- appts are a few months out to get him. We made an appointment but ended up seeing another neurologist b/c our pedi wanted our son seen sooner. I found the neurologist we eneded up seeing to be some what unhelpful. I think a lot of people in this forum don't get far with the neuro's. not sure if hes into the IVIG or Plasmas exchange. The neuro I ened up taking my son to wanted to put him on Bactrim which isn't the most effective antibiotic for strep I had come to find out- i opted to hold off, i just wasn't confident in her. Anyways, I would start with contacting Dr. Torres if you are looking for a neuro who deals with PANDAS. I couldn't find his number sorry.

_______________________________________________________________________________________________________
I'm looking for a pediatric neurologist or psychiatrist in Massachusetts, Connecticut, Rhode Island, or New York (in that order) with specific experience in--and willingness to consider--treating PANDAS with immune modification therapy (IVIG or Plasma Exchange) and long-term antibiotics. Does anyone know of any?

Thanks.[/quote]
[/quote]

Thanks for the info!

#5 Guest_asaxon_*

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Posted 15 July 2009 - 11:31 PM

asaxon,

I recommend seeing a DAN doctor, rheumatolgist, or immunologist over a neurologist or psychiatrist for PANDAS. In NY I highly recommend Ken Bock, MD (Rhinebeck, NY), who does integrated medicine. He is a DAN doctor and author of Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies. He has a lot of experience with PANDAS and he offers IVIG at the Rhinebeck Health Center. He diagnosed my daughter's PANDAS 6 years ago and he is wonderful -- a real medical detective. He does not accept insurance though. In Massachusetts I recommend Robert Fuhlbrigge, MD, a pediatric rheumatologist at Children's Hospital Boston. He has been very supportive and helped to faciliate monthly IVIG infusions for my daughter at Children's where we get full coverage from our insurance company, Harvard Pilgrim Healthcare. He wants her to stay on her antibiotics long-term. I also like Elizabeth TePas, MD, an immunologist at Mass General Hospital for Children at Newton-Wellesley Hospital.

Nancy


Thank you Nancy!

-Asaxon

#6 ShaesMom

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Posted 16 July 2009 - 06:51 AM

Try contacting the Immune Deficiency Foundation at 800-296-4433. Ask them if there are any Immunologists in your area who work with kids who have Pandas. IVIG is regularly used for individuals with Immune deficiencies as is steriods.

If they say no on the Pandas you may want to call an Immuno doc who is close and ask them personally.

This gentlemen is listed as one of the contributors on their publications:

Francisco A. Bonilla, MD, Phd
Boston Children's Hospital

#7 Guest_asaxon_*

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Posted 16 July 2009 - 02:09 PM

Try contacting the Immune Deficiency Foundation at 800-296-4433. Ask them if there are any Immunologists in your area who work with kids who have Pandas. IVIG is regularly used for individuals with Immune deficiencies as is steriods.

If they say no on the Pandas you may want to call an Immuno doc who is close and ask them personally.

This gentlemen is listed as one of the contributors on their publications:

Francisco A. Bonilla, MD, Phd
Boston Children's Hospital


Thank you.

#8 eamom

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Posted 08 September 2009 - 03:16 PM

Hi Asaxon,
how is your dd doing? Did you ever find a helpful doc? How about Dr. Leckman at the Yale Child Study Center?

#9 starwars99

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Posted 09 September 2009 - 02:16 PM

Hi There
My son, 9, is being seen by Dr. Torres (neuro) as well as, Dr. Fuhlbrigge (rheumatologist- PANDAS specialist) at Children's Hospital Boston. Have your Pedi call for an app. will be much faster. but still a little wait. Good luck. Both Docs are great.

#10 L Haven

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Posted 04 October 2009 - 09:17 PM

We met Dr. Bonilla at Childrens in Boston in 2003, when my son was first diagnosed. We liked him very much, and at that time he was definitely on board with IVIG.

Lena

#11 danddd

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Posted 09 March 2010 - 10:26 PM

[quote name='starwars99' date='Sep 9 2009, 02:16 PM' post='37737']
Hi There
My son, 9, is being seen by Dr. Torres (neuro) as well as, Dr. Fuhlbrigge (rheumatologist- PANDAS specialist) at Children's Hospital Boston. Have your Pedi call for an app. will be much faster. but still a little wait. Good luck. Both Docs are great.
[/quote

who did you see first torres or fuhlbrigge? wondering because we just saw torres, and I was going to keep fuhlbrigge as a next option if needed. How do they work together with treatment? my daughter is also 9.

#12 t_mom

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Posted 09 March 2010 - 10:39 PM

[quote name='danddd' post='59210' date='Mar 9 2010, 10:26 PM'][quote name='starwars99' post='37737' date='Sep 9 2009, 02:16 PM']
Hi There
My son, 9, is being seen by Dr. Torres (neuro) as well as, Dr. Fuhlbrigge (rheumatologist- PANDAS specialist) at Children's Hospital Boston. Have your Pedi call for an app. will be much faster. but still a little wait. Good luck. Both Docs are great.
[/quote

who did you see first torres or fuhlbrigge? wondering because we just saw torres, and I was going to keep fuhlbrigge as a next option if needed. How do they work together with treatment? my daughter is also 9.[/quote]


Great to hear more doctors are being identified who are helpful with Pandas--
If these doctors are not already on the list would you be willing to add them to the list of doctors we have found to be helpful (LOCATED at the top of the forum page, as a helpful page--) Thank you!

#13 Amy B

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Posted 10 March 2010 - 07:38 AM

[quote name='danddd' date='Mar 9 2010, 10:26 PM' post='59210']
[quote name='starwars99' date='Sep 9 2009, 02:16 PM' post='37737']
Hi There
My son, 9, is being seen by Dr. Torres (neuro) as well as, Dr. Fuhlbrigge (rheumatologist- PANDAS specialist) at Children's Hospital Boston. Have your Pedi call for an app. will be much faster. but still a little wait. Good luck. Both Docs are great.
[/quote

who did you see first torres or fuhlbrigge? wondering because we just saw torres, and I was going to keep fuhlbrigge as a next option if needed. How do they work together with treatment? my daughter is also 9.
[/quote


We see Dr.Torres as well. My son is 7. I'm curious as to what he has mentioned to you about antibiotics. He has clearly mentioned that he does not believe in propolactic (spelling) antibiotics . Will only prescribe with a positive strep test. Please let me know how he has helped you. Thanks.

#14 LLM

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Posted 10 March 2010 - 09:25 AM

I'm looking for a pediatric neurologist or psychiatrist in Massachusetts, Connecticut, Rhode Island, or New York (in that order) with specific experience in--and willingness to consider--treating PANDAS with immune modification therapy (IVIG or Plasma Exchange) and long-term antibiotics. Does anyone know of any?

Thanks.


Dr Bouboulis is in southern CT (Darien & Stamford) near NYC. He does IVIG in his office. Yale refers their Pandas patients to him for IVIG. 203-655-9904
Dr T is in northern NJ (Ramsey) 201-236-3876

#15 danddd

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Posted 10 March 2010 - 11:18 AM

B)-->
QUOTE(Amy B @ Mar 10 2010, 07:38 AM) View Post
[quote name='danddd' post='59210' date='Mar 9 2010, 10:26 PM']
[quote name='starwars99' post='37737' date='Sep 9 2009, 02:16 PM']
Hi There
My son, 9, is being seen by Dr. Torres (neuro) as well as, Dr. Fuhlbrigge (rheumatologist- PANDAS specialist) at Children's Hospital Boston. Have your Pedi call for an app. will be much faster. but still a little wait. Good luck. Both Docs are great.
[/quote

who did you see first torres or fuhlbrigge? wondering because we just saw torres, and I was going to keep fuhlbrigge as a next option if needed. How do they work together with treatment? my daughter is also 9.
[/quote


We see Dr.Torres as well. My son is 7. I'm curious as to what he has mentioned to you about antibiotics. He has clearly mentioned that he does not believe in propolactic (spelling) antibiotics . Will only prescribe with a positive strep test. Please let me know how he has helped you. Thanks.[/quote]

yes he did mention that he does not reccomend long term antibiotics. i am still processing all the info from our appointment. i think he is incredibly thourough. my daughter is almost finished with a 2 month trial of high dose augmentin. that was not from torres, it is from geller (mass general). i dont know what the next step will be. she has not had strep since may 09, but symptoms are still strong. i havent noticed a huge change with the augmentin, as i hoped. thanks for responding




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