PANDAS doctors in Boston area, NH, MA, ME or RI

[worriedmommy]

I'm looking to hear from anyone who has had success with PANDAS doctors in the New England area. I'm from NH and have Harvard Pilgrim HMO, and really need to find someone (preferably an Immunologist) that supports IVIG for PANDAS. My daughter is immune deficient, so we could likely make a case for IVIG without using the word PANDAS.

 

Dd has low titers (likely b/c she is immune deficient...low IgG), but sudden onset of PANDAS following strep & H1N1, as well as a two separate major exacerbations from strep exposure. CamK II of 150 and elevated anti-lysoganglioside on the Cunningham test. Dr. T & Dr. B agree she has PANDAS...so we're past the diagnosis part. She had a fantastic reaction to a steroid burst in April, and is currently backsliding while on high-dose Azith.

 

We've seen Dr. Torres at Boston Children's Hospital, but as some others have posted he does not treat with abx or IVIG. Therapy and ignoring was his main advice for dd's tics.

 

We've also seen a pediatric neurologist with the Dartmouth Hitchcock Medical Center (DHMC) in Manchester, NH...and struck out there too.

 

The Allergy Immunology doctors with DHMC Manchester told us point blank that dd's "case" was beyond their expertise. (I appreciate their honesty.)

 

This has left us feeling a bit helpless. Dr. T is awesome. He got us started on the PANDAS path, but when dd showed immune deficiencies, he suggested we see an immunologist. This led us to Dr. B, who is also fantastic. We've seen him twice, and have begun to discuss IVIG. I would love to stick with him, but my insurance has declined any coverage for services by Dr. B as he is "out of network" for my HMO.

 

I tried getting into see Dr. Elizabeth TePas, but was told that it's a 4-6 month wait as she only works part time. I debated Dr. Fuhlbrigge in Boston, but had heard that he's not very aggressive with treatment and that without high titers he may not be any help to us.

 

Other names I've heard mentioned are Dr. Catherine Lockwood in ME, Dr. Louise Kiessling in RI, Dr. Raif Geha in MA, and Dr. Francisco Bonilla in MA. If anyone has seen them, can you please share your experience?

 

I will go to anyone, but am tired of wasting time and energy with doctors that know less about PANDAS than me.

 

Suggestions??

[NancyD]

I'm looking to hear from anyone who has had success with PANDAS doctors in the New England area. I'm from NH and have Harvard Pilgrim HMO, and really need to find someone (preferably an Immunologist) that supports IVIG for PANDAS. My daughter is immune deficient, so we could likely make a case for IVIG without using the word PANDAS.

 

Dd has low titers (likely b/c she is immune deficient...low IgG), but sudden onset of PANDAS following strep & H1N1, as well as a two separate major exacerbations from strep exposure. CamK II of 150 and elevated anti-lysoganglioside on the Cunningham test. Dr. T & Dr. B agree she has PANDAS...so we're past the diagnosis part. She had a fantastic reaction to a steroid burst in April, and is currently backsliding while on high-dose Azith.

 

We've seen Dr. Torres at Boston Children's Hospital, but as some others have posted he does not treat with abx or IVIG. Therapy and ignoring was his main advice for dd's tics.

 

We've also seen a pediatric neurologist with the Dartmouth Hitchcock Medical Center (DHMC) in Manchester, NH...and struck out there too.

 

The Allergy Immunology doctors with DHMC Manchester told us point blank that dd's "case" was beyond their expertise. (I appreciate their honesty.)

 

This has left us feeling a bit helpless. Dr. T is awesome. He got us started on the PANDAS path, but when dd showed immune deficiencies, he suggested we see an immunologist. This led us to Dr. B, who is also fantastic. We've seen him twice, and have begun to discuss IVIG. I would love to stick with him, but my insurance has declined any coverage for services by Dr. B as he is "out of network" for my HMO.

 

I tried getting into see Dr. Elizabeth TePas, but was told that it's a 4-6 month wait as she only works part time. I debated Dr. Fuhlbrigge in Boston, but had heard that he's not very aggressive with treatment and that without high titers he may not be any help to us.

 

Other names I've heard mentioned are Dr. Catherine Lockwood in ME, Dr. Louise Kiessling in RI, Dr. Raif Geha in MA, and Dr. Francisco Bonilla in MA. If anyone has seen them, can you please share your experience?

 

I will go to anyone, but am tired of wasting time and energy with doctors that know less about PANDAS than me.

 

Suggestions??

 

 

PM or email me and I can share with you what I know about those doctors.

 

Nancy

[KaraM]

This was post #56 on the "doctors we have seen" thread. I'm copying it here...

 

I'm a newbie but having looked over the list I didn't see any doctors list for Rhode Island. I have to add my son's

 

Dr. Louise Kiessling- she is a developmental pediatrician out of Brown University and the NeuroDevelopmental Center at Memorial Hospital

 

We were referred by my son's therapist and only after seeing her, being immensely impressed and helped did I discover that if you do some research on her and PANDAS some of her work is cited as a reference.

 

She has been thorough, calls us on weekends and at night if we have issues and has worked so well with our family doctor to be sure that all tests and meds will be covered by insurance by coordinating care with him. This coordination has helped to educate him about PANDAS, which he had been skeptical of but now is a full convert and ally in this fight.

[justinekno]

Can you get a dr (maybe Allergy Immunology doctors with DHMC Manchester) to say that there is no other specialist in your area (network) that treats PANDAS and therefore you need to see Dr. B? Our insurance company told us we could go that route when we were trying to see Dr. T. who was out of network. They said it's usually approved if the request comes with a letter from the dr who can't treat the illness.

 

I'm looking to hear from anyone who has had success with PANDAS doctors in the New England area. I'm from NH and have Harvard Pilgrim HMO, and really need to find someone (preferably an Immunologist) that supports IVIG for PANDAS. My daughter is immune deficient, so we could likely make a case for IVIG without using the word PANDAS.

 

Dd has low titers (likely b/c she is immune deficient...low IgG), but sudden onset of PANDAS following strep & H1N1, as well as a two separate major exacerbations from strep exposure. CamK II of 150 and elevated anti-lysoganglioside on the Cunningham test. Dr. T & Dr. B agree she has PANDAS...so we're past the diagnosis part. She had a fantastic reaction to a steroid burst in April, and is currently backsliding while on high-dose Azith.

 

We've seen Dr. Torres at Boston Children's Hospital, but as some others have posted he does not treat with abx or IVIG. Therapy and ignoring was his main advice for dd's tics.

 

We've also seen a pediatric neurologist with the Dartmouth Hitchcock Medical Center (DHMC) in Manchester, NH...and struck out there too.

 

The Allergy Immunology doctors with DHMC Manchester told us point blank that dd's "case" was beyond their expertise. (I appreciate their honesty.)

 

This has left us feeling a bit helpless. Dr. T is awesome. He got us started on the PANDAS path, but when dd showed immune deficiencies, he suggested we see an immunologist. This led us to Dr. B, who is also fantastic. We've seen him twice, and have begun to discuss IVIG. I would love to stick with him, but my insurance has declined any coverage for services by Dr. B as he is "out of network" for my HMO.

 

I tried getting into see Dr. Elizabeth TePas, but was told that it's a 4-6 month wait as she only works part time. I debated Dr. Fuhlbrigge in Boston, but had heard that he's not very aggressive with treatment and that without high titers he may not be any help to us.

 

Other names I've heard mentioned are Dr. Catherine Lockwood in ME, Dr. Louise Kiessling in RI, Dr. Raif Geha in MA, and Dr. Francisco Bonilla in MA. If anyone has seen them, can you please share your experience?

 

I will go to anyone, but am tired of wasting time and energy with doctors that know less about PANDAS than me.

 

Suggestions??

Edited July 4, 2010 by justinekno

[becjonz]

This was post #56 on the "doctors we have seen" thread. I'm copying it here...

 

I'm a newbie but having looked over the list I didn't see any doctors list for Rhode Island. I have to add my son's

 

Dr. Louise Kiessling- she is a developmental pediatrician out of Brown University and the NeuroDevelopmental Center at Memorial Hospital

 

We were referred by my son's therapist and only after seeing her, being immensely impressed and helped did I discover that if you do some research on her and PANDAS some of her work is cited as a reference.

 

She has been thorough, calls us on weekends and at night if we have issues and has worked so well with our family doctor to be sure that all tests and meds will be covered by insurance by coordinating care with him. This coordination has helped to educate him about PANDAS, which he had been skeptical of but now is a full convert and ally in this fight.

 

I wrote the above. I was going to respond about Dr. Kiessling, whom we are still impressed with but appreciate that someone pasted this here. I will say that my son has only been treated with abx and there has been no discussion of IVIG. This is even with a possible allergy to penicillin and zythromax which has prevented him being treated with abx for the past several months. Instead he has had increased psych meds (which I'm weaning him off of now that school is out) and we are seeing an allergist to resolve the allergy question. Thankfully my ds' PANDAS is at a manageable level, not as intense as some I've seen on here so I have not pushed the IVIG question. Sorry I can't answer exactly, although if I had to guess I'd say she probably doesn't lean that way.

[EAMom]

Great suggestion! I think Peglem also got approval for an out-of network dr (Dr. Latimer)... and we got our psychiatrist covered at in-network prices for the same reason....b/c no in-network docs were qualified to treat.

[worriedmommy]

Thanks everyone for your replies. I am currently working with a Health Advocate to see if they can help with this issue with my insurance. I really like and trust Dr. B and would love to stay with him.

 

I already sent my HMO office visit notes from my daughter's pediatrician and the Allergist/Immunologist saying that her case is not something they can handle, but my they replied saying that "services can be found in network". I'm not surprised at this response. There are hundreds of doctors in network...but unfortunately as you all know, not many who know about PANDAS. I think the insurance companies view is that ANY immunologist can help, and we should be able to find at least one. (If only it were that simple.)

 

I'm going to see what the Health Advocate can do. It would be nice if she could win this battle for me

 

In the mean time I will follow up with the names you all suggested. Thanks!

 

Can you get a dr (maybe Allergy Immunology doctors with DHMC Manchester) to say that there is no other specialist in your area (network) that treats PANDAS and therefore you need to see Dr. B? Our insurance company told us we could go that route when we were trying to see Dr. T. who was out of network. They said it's usually approved if the request comes with a letter from the dr who can't treat the illness.

 

I'm looking to hear from anyone who has had success with PANDAS doctors in the New England area. I'm from NH and have Harvard Pilgrim HMO, and really need to find someone (preferably an Immunologist) that supports IVIG for PANDAS. My daughter is immune deficient, so we could likely make a case for IVIG without using the word PANDAS.

 

Dd has low titers (likely b/c she is immune deficient...low IgG), but sudden onset of PANDAS following strep & H1N1, as well as a two separate major exacerbations from strep exposure. CamK II of 150 and elevated anti-lysoganglioside on the Cunningham test. Dr. T & Dr. B agree she has PANDAS...so we're past the diagnosis part. She had a fantastic reaction to a steroid burst in April, and is currently backsliding while on high-dose Azith.

 

We've seen Dr. Torres at Boston Children's Hospital, but as some others have posted he does not treat with abx or IVIG. Therapy and ignoring was his main advice for dd's tics.

 

We've also seen a pediatric neurologist with the Dartmouth Hitchcock Medical Center (DHMC) in Manchester, NH...and struck out there too.

 

The Allergy Immunology doctors with DHMC Manchester told us point blank that dd's "case" was beyond their expertise. (I appreciate their honesty.)

 

This has left us feeling a bit helpless. Dr. T is awesome. He got us started on the PANDAS path, but when dd showed immune deficiencies, he suggested we see an immunologist. This led us to Dr. B, who is also fantastic. We've seen him twice, and have begun to discuss IVIG. I would love to stick with him, but my insurance has declined any coverage for services by Dr. B as he is "out of network" for my HMO.

 

I tried getting into see Dr. Elizabeth TePas, but was told that it's a 4-6 month wait as she only works part time. I debated Dr. Fuhlbrigge in Boston, but had heard that he's not very aggressive with treatment and that without high titers he may not be any help to us.

 

Other names I've heard mentioned are Dr. Catherine Lockwood in ME, Dr. Louise Kiessling in RI, Dr. Raif Geha in MA, and Dr. Francisco Bonilla in MA. If anyone has seen them, can you please share your experience?

 

I will go to anyone, but am tired of wasting time and energy with doctors that know less about PANDAS than me.

 

Suggestions??

[so_hopeful]

I'm looking to hear from anyone who has had success with PANDAS doctors in the New England area. I'm from NH and have Harvard Pilgrim HMO, and really need to find someone (preferably an Immunologist) that supports IVIG for PANDAS. My daughter is immune deficient, so we could likely make a case for IVIG without using the word PANDAS.

 

Dd has low titers (likely b/c she is immune deficient...low IgG), but sudden onset of PANDAS following strep & H1N1, as well as a two separate major exacerbations from strep exposure. CamK II of 150 and elevated anti-lysoganglioside on the Cunningham test. Dr. T & Dr. B agree she has PANDAS...so we're past the diagnosis part. She had a fantastic reaction to a steroid burst in April, and is currently backsliding while on high-dose Azith.

 

We've seen Dr. Torres at Boston Children's Hospital, but as some others have posted he does not treat with abx or IVIG. Therapy and ignoring was his main advice for dd's tics.

 

We've also seen a pediatric neurologist with the Dartmouth Hitchcock Medical Center (DHMC) in Manchester, NH...and struck out there too.

 

The Allergy Immunology doctors with DHMC Manchester told us point blank that dd's "case" was beyond their expertise. (I appreciate their honesty.)

 

This has left us feeling a bit helpless. Dr. T is awesome. He got us started on the PANDAS path, but when dd showed immune deficiencies, he suggested we see an immunologist. This led us to Dr. B, who is also fantastic. We've seen him twice, and have begun to discuss IVIG. I would love to stick with him, but my insurance has declined any coverage for services by Dr. B as he is "out of network" for my HMO.

 

I tried getting into see Dr. Elizabeth TePas, but was told that it's a 4-6 month wait as she only works part time. I debated Dr. Fuhlbrigge in Boston, but had heard that he's not very aggressive with treatment and that without high titers he may not be any help to us.

 

Other names I've heard mentioned are Dr. Catherine Lockwood in ME, Dr. Louise Kiessling in RI, Dr. Raif Geha in MA, and Dr. Francisco Bonilla in MA. If anyone has seen them, can you please share your experience?

 

I will go to anyone, but am tired of wasting time and energy with doctors that know less about PANDAS than me.

 

Suggestions??

[so_hopeful]

This has left us feeling a bit helpless. Dr. T is awesome. He got us started on the PANDAS path, but when dd showed immune deficiencies, he suggested we see an immunologist. This led us to Dr. B, who is also fantastic. We've seen him twice, and have begun to discuss IVIG. I would love to stick with him, but my insurance has declined any coverage for services by Dr. B as he is "out of network" for my HMO.

 

 

 

 

Who are Dr. T and Dr. B?

[mkur]

Who are Dr. T and Dr. B? At the top of the forum there is a thread on abbreviations. Check it out it makes things a whole lot easier. Lots of luck with your insurance - keep at it.

[Kayanne]

Dr. T = Dr. Trifiletti, Pediatric Neurologist in private practice in Northern NJ

 

Dr. B = Dr. Bouboulis, Allergist and Immunologist in Darien, CT

 

Dr. K = Dr. Kovacevic. A pediatrician and professor of pediatrics at Loyola. He is in Chicago, IL

 

Dr. L = Dr. Latimer. She is a pediatric neurologist in Bethesda MD

 

These doctors are considered to be the top PANDAS docs (on this forum)

 

Here is a thread which lists doctors who have been helpful:

 

http://www.latitudes.org/forums/index.php?showtopic=5023

[kimballot]

Hi Worried Mom - I tried to send you a PM but your box must be full. PM me and I will reply -

[NancyD]

My advice would be to contact a nurse care manager at HPHC and let them know the situation. Dr. B is easier to get in to see than either Fuhlbrigge or TePas. TePas is not taking on any more PANDAS patients because she is part-time and getting IVIg is tricky because it has to be done at MGH and she is not there to oversee it, which means you would have to find another doctor there who is willing to oversee it. She will prescribe home infusions if the child has had IVIg before and has not had any problems with it. Dr. B is part of the HPHC PPO network so I would think they would agree to letting you see him (and have them cover it) as long as you can prove that there is no one else you can get in to see locally in a timely fashion. I would push for Dr. B or, if you can, go see Dr. L. HPHC covered Dr. L 100%! When you have a very sick child, waiting 4-6 months is unacceptable!

 

Nancy

[momaine]

I'm the one who wrote Dr Catherine Lockwood as helpful to us on our pandas journey, but she is just a family doctor who was open to treating with antibiotics when I brought her information on pandas. She has no ivig experience.