[ncdad]

Meg's Mom... thanks for that great info... I just call and found out the Dr Nelson has moved to Omaha, Nebraska and his last day was 11/30/09. I am looking for a doctor in Charlotte who is experienced with PANDAS and preferably on my insurance. We have been working with Dr K outside Chicago but an IVIG through him would cost us lots of dough. It would also be great if we could have a local resource for future treatments, etc.

Which doctor(s) have you transitioned to for treatment? Thanks a bunch.

Meg, on Sep 6 2009, 09:58 AM, said:

Dr. James Nelson, Neurologist, Presby Pediatric Neurology in Charlotte NC (very helpful, diagnosed her clinically, willing to work with antibiotics and IVIG as necessary. Will also refer to specialists as needed.

Dr. Mauve O'Conner - Carolina Asthma & Allergy - Charlotte NC (also office in Concord) - she is very interested and curious. Willing to review all medical records. We are still new with her, so I'll update this once we have worked with her for a while.

Dr Branner - Pediatric GI specialist - great guy, PANDAS believer, did not blow us off, really did good work for Meg to figure out stomach issues. Did not dismiss immediately as anxiety. Found her Peptic Ulcers - Charlotte NC - Presby Pediatric GI.

Wish I had a good pediatrician, but still searching

Dr. DeeDee Russell - not a PANDAS person, but excellent with ERP therapy for kids and helping with anxiety. Cornelius NC

Dr. Pat Gammons - all the doctors at Duke, in PCAAD. Again, not really PANDAS believer - but not skeptic either. Just wants to help on the therapy side, and did amazingly well working on the OCD with our daughter.

[Laurensmom]

Does anyone know of a Dr. in Minnesota or Wisconsin?

[Fixit]

Any doc's in Atlanta GA? I've been going out of pocket too!

[bewell]

Dr. Bradstreet's group in Melbourne Fl; we see Scott Smith PA.
Receiving IVIG monthly since March '09; extremely helpful!!!!!
bewell

[fuelforall]

Dr. Nira Goldstein at Downstate Medical Center in Brooklyn, NY is an ENT who just told me, while she was seeing my other son (adopted, no genetic issues here) for adenoid/ear tube issues, that she has seen several PANDAS patients in her practice.

She generally refers them to Max April at Weill Cornell Hospital in New York City. Dr. April appears on TV periodically in the area as an expert. Dr. Trifilletti also mention Dr. April as a good doctor in this area.

Michael

[mama2alex]

We're making progress in Northern California. I wouldn't yet say we have "experts" like Dr. Latimer, Dr. Kovacevic, or Dr. Trifiletti, but we now have several doctors who believe in PANDAS and are quickly learning.

We've seen all three of the following doctors. They helped with diagnosis, prescribed antibiotics, did a prednisone trial, and finally last week my son was given IVIG at Lucile Packard.

Dr. Frederick Lloyd, Pediatrician
Palo Alto Medical Foundation, Palo Alto

Dr. Margo Thienemann, Psychiatrist
Private Practice, Palo Alto

Dr. David Lewis, Immunologist
Immunology Clinic at Lucile Packard, Stanford

[Suzan]

ncdad, on Dec 10 2009, 12:10 PM, said:

Meg's Mom... thanks for that great info... I just call and found out the Dr Nelson has moved to Omaha, Nebraska and his last day was 11/30/09. I am looking for a doctor in Charlotte who is experienced with PANDAS and preferably on my insurance. We have been working with Dr K outside Chicago but an IVIG through him would cost us lots of dough. It would also be great if we could have a local resource for future treatments, etc.

Which doctor(s) have you transitioned to for treatment? Thanks a bunch.

Hi ncdad, barging in to say I am seeing Dr. O'Connor. I recommend her as someone who believes in PANDAS and is quickly learning and increasing her PANDAS patient base. She's especially good I think if you have one of the top docs that she can conference with to ensure you are on the right track since she is new to it all.

[Lisa1971]

We had Dr. Nelson prior to his moving...and he suggested Northeast Pediatric Neurology in Concord...I spoke with them and they said both neurologists treat PANDAS...it has taken 7 weeks after being referred and they finally sent us new patient paperwork...still waiting to schedule an appointment...so unfortunately, I don't have any personal feedback on the doctors, other than their administrative process is rediculously slow...

[Suzan]

Lisa1971, on Dec 14 2009, 05:58 PM, said:

We had Dr. Nelson prior to his moving...and he suggested Northeast Pediatric Neurology in Concord...I spoke with them and they said both neurologists treat PANDAS...it has taken 7 weeks after being referred and they finally sent us new patient paperwork...still waiting to schedule an appointment...so unfortunately, I don't have any personal feedback on the doctors, other than their administrative process is rediculously slow...

We see Dr. Corbier there. We started seeing him for my dd's seizures and then kept going for our behavior and other issues. He is very good and very busy. It takes forever to get an appt and our appts always run late. I feel that he really knows what he is doing and he gets that light bulb look and has ideas of what to look for. He was the one who first suggested PANDAS for us. But, he was not big on treatment and with our low titers he dismissed the idea at first. It's not that I don't recommend him, but if seeing him for PANDAS, I would be very vocal about what you want and whether he would treat with antibiotics, etc. (whatever it is that you are hoping for). He was the one that tested for the hhv6 virus and high titer for it but he was not big on trying the treatment for it. Our Ped went ahead and ordered valtrex to give treatment a try.

Lisa, who are you going to see there, do you know?

Susan

[Lisa1971]

Suzan, on Dec 14 2009, 06:14 PM, said:

Lisa1971, on Dec 14 2009, 05:58 PM, said:

We had Dr. Nelson prior to his moving...and he suggested Northeast Pediatric Neurology in Concord...I spoke with them and they said both neurologists treat PANDAS...it has taken 7 weeks after being referred and they finally sent us new patient paperwork...still waiting to schedule an appointment...so unfortunately, I don't have any personal feedback on the doctors, other than their administrative process is rediculously slow...

We see Dr. Corbier there. We started seeing him for my dd's seizures and then kept going for our behavior and other issues. He is very good and very busy. It takes forever to get an appt and our appts always run late. I feel that he really knows what he is doing and he gets that light bulb look and has ideas of what to look for. He was the one who first suggested PANDAS for us. But, he was not big on treatment and with our low titers he dismissed the idea at first. It's not that I don't recommend him, but if seeing him for PANDAS, I would be very vocal about what you want and whether he would treat with antibiotics, etc. (whatever it is that you are hoping for). He was the one that tested for the hhv6 virus and high titer for it but he was not big on trying the treatment for it. Our Ped went ahead and ordered valtrex to give treatment a try.

Lisa, who are you going to see there, do you know?

Susan

Susan,

I was hedging toward Dr. Corbier...only because he is the only one I have received some feedback on...but I guess in the end it will depend on whomever can see my son before June when the current course of azith runs out...and we need our next course of action...if it took 7 weeks for them to send me the paperwork to fill out...I am not hopeful on getting an appointment anytime soon...

--Lisa

[kcdc3]

ncdad, on Dec 10 2009, 12:05 PM, said:

mom md, on Jul 18 2009, 10:52 AM, said:

Charlotte, NC
James, Lee, MD Piedmont Neuropsychiatry, (he is the one who diagnosed it)
James Nelson, MD Neurologist

Chapel Hill
Eliana Perrin, MD Professor of Pediatricis Chapell Hill (did some of the origional work with Swedo)

mom md...

I just found out that Dr Nelson has moved to NE. Who are you working with now to continue treatment locally? I am still looking for a provider that would write script and administer IVIG.

thanks.

We are currently seeing Dr. Lee (per mom md) -he seems to be knowledgable and told me that if IVIG was necessary, he would "refer that out". Not sure what he means by that. He is willing to give antibiotics, but he seems to be very hard to get in touch with. After our appointment, I have tried to contact him several times and he takes a very long time to respond. For me, though, I just need the abx treatment for now so he is working out fine for the time being.

[Amy B]

Lisa1971, on Dec 15 2009, 11:43 AM, said:

Suzan, on Dec 14 2009, 06:14 PM, said:

Lisa1971, on Dec 14 2009, 05:58 PM, said:

We had Dr. Nelson prior to his moving...and he suggested Northeast Pediatric Neurology in Concord...I spoke with them and they said both neurologists treat PANDAS...it has taken 7 weeks after being referred and they finally sent us new patient paperwork...still waiting to schedule an appointment...so unfortunately, I don't have any personal feedback on the doctors, other than their administrative process is rediculously slow...

We see Dr. Corbier there. We started seeing him for my dd's seizures and then kept going for our behavior and other issues. He is very good and very busy. It takes forever to get an appt and our appts always run late. I feel that he really knows what he is doing and he gets that light bulb look and has ideas of what to look for. He was the one who first suggested PANDAS for us. But, he was not big on treatment and with our low titers he dismissed the idea at first. It's not that I don't recommend him, but if seeing him for PANDAS, I would be very vocal about what you want and whether he would treat with antibiotics, etc. (whatever it is that you are hoping for). He was the one that tested for the hhv6 virus and high titer for it but he was not big on trying the treatment for it. Our Ped went ahead and ordered valtrex to give treatment a try.

Lisa, who are you going to see there, do you know?

Susan

Susan,

I was hedging toward Dr. Corbier...only because he is the only one I have received some feedback on...but I guess in the end it will depend on whomever can see my son before June when the current course of azith runs out...and we need our next course of action...if it took 7 weeks for them to send me the paperwork to fill out...I am not hopeful on getting an appointment anytime soon...

--Lisa

Thank you for the name and place of someone. I live near Concord. The thought of the reluctancy to give the abx is kind of a turn off as I know my son will need them. I have found with another neurologist from Childrens that they will lable and or diagnose him yet do not want to treat him, my Ds. They push that off to the ped. The neurlogist has told us in the past to go and ask your ped for the abx. What's up with that. Yet they would prescribe him whatever psych meds. I feel there is a abx taboo. Anyone else feel that way here in MA. I didn't like that and I didn't like him either.

[peglem]

Quote

Thank you for the name and place of someone. I live near Concord. The thought of the reluctancy to give the abx is kind of a turn off as I know my son will need them. I have found with another neurologist from Childrens that they will lable and or diagnose him yet do not want to treat him, my Ds. They push that off to the ped. The neurlogist has told us in the past to go and ask your ped for the abx. What's up with that. Yet they would prescribe him whatever psych meds. I feel there is a abx taboo. Anyone else feel that way here in MA. I didn't like that and I didn't like him either.

Actually, a pediatrician is likely to have more expertise in antibiotics than a neurologist would, and you can get in to the ped more often, so I think that makes a certain amount of sense. By the same token, a pediatrician is probably not the right person to decide which AED your child may or may not need.

[Amy B]

peglem, on Dec 18 2009, 02:47 AM, said:

Quote

Thank you for the name and place of someone. I live near Concord. The thought of the reluctancy to give the abx is kind of a turn off as I know my son will need them. I have found with another neurologist from Childrens that they will lable and or diagnose him yet do not want to treat him, my Ds. They push that off to the ped. The neurlogist has told us in the past to go and ask your ped for the abx. What's up with that. Yet they would prescribe him whatever psych meds. I feel there is a abx taboo. Anyone else feel that way here in MA. I didn't like that and I didn't like him either.

Actually, a pediatrician is likely to have more expertise in antibiotics than a neurologist would, and you can get in to the ped more often, so I think that makes a certain amount of sense. By the same token, a pediatrician is probably not the right person to decide which AED your child may or may not need.

Ok. Dum question what is AED ?

[peglem]

Oh, sorry, not a dumb question- I had to go look it up because I've been using the acronym so long, I couldn't remember what it stands for. AED- Anti-Epilectic Drug.