Visit to Dr. Schulman

[bws]

Hi all,

 

So I finally got to see Dr. Schulman. I was very impressed with her. She gave me one hour of her time and really listened to me. She says there is no doubt in her mind that this is Pandas, and is treating appropriately.

 

Two very interesting things she told me:

 

1) There is a genetic component to Pandas; the majority of Pandas patients are of Jewish or Irish descent.

Do you find this to be true? I am Jewish.

 

2) She gets IVIG paid for by insurance, without a fight, by doing it in a Cancer Outpatient Center, and billing it as "Post Infection Encephalitis" Works every time. If any of you don't have the 15 grand, this might be the route to go.

 

Thanks for all your support!!

[EAMom]

 

1) There is a genetic component to Pandas; the majority of Pandas patients are of Jewish or Irish descent.

Do you find this to be true? I am Jewish.

 

 

I'm glad your visit was a sucess! Keep us updated on how things go.

 

We had a thread on "what ethnicity are you" a while back. Mostly white if I remember. However, I suspect that Dr. Schulman's observation reflects her patient population in general. Maybe someone will be able to find the thread? I do suspect there is a genetic component...but with regards to enthicity I think it is really hard to say just b/c so many PANDAS kids are undiagnosed.

 

I know Dr. K. has a phenotype as well (intelligent mom, etc)...and I don't personally believe this actually represents the true population of PANDAS kids...just the type of folks that are determined and educated, the type of parent who questions docs, does there own research on the internet, and has the resources to travel hundreds or thousands of miles for appropriate treatment with Dr. K.

 

Here's an article about strep/ocd in polynesians http://archpedi.ama-assn.org/cgi/content/full/157/7/665

 

I'm convinced that the if you have PANDAS and have parents that are either poor, uneducated, or don't know to question the medical community...you will likely end up misdiagnosed (bipolar, ocd, tourettes, odd, adhd, --unless they are very lucky with a clearcut case of PANDAS and an astute doc) and inappropriately treated, more likely to wind up in a mental institution, in jail, on illegal drugs,or a bunch of psych. meds, than receiving Azith. and IVIG. If you are a kid in the foster care system (or medicaid) with behavior issues, nobody is going to delve into "why"...you will simply be put on a battery of psych. drugs no questions asked. http://tmap.wordpress.com/2008/08/31/anti-psychotic-drugs-for-kids-get-state-look/

 

Are you familiar with this case? http://www.mlive.com/news/detroit/index.ssf/2011/04/post_55.html Maryanne Goboldo was arrested for refusing to treat her daughter with Psych. drugs. Her daughter developed severe behavioral problems after receiving immunizations. (I suspect her dd has undiagnosed PANDAS, but we'll never know unless we can get the mom on this forum.)

Edited May 12, 2011 by EAMom

[kimballot]

I am so glad to hear it went well. I agree 100% with EA Mom's comments re: genetics and phenotype. Keep us posted as you move forward with Dr. S!

[butterflymom]

=

Edited October 9, 2015 by tampicc

[MMC]

I am of Irish descent. I have also watched Dr Schulman's videos. They are great. If she was closer to NC, I would have made an appointment with her a long time ago.

[Iowadawn]

 

1) There is a genetic component to Pandas; the majority of Pandas patients are of Jewish or Irish descent.

Do you find this to be true? I am Jewish.

 

 

I'm glad your visit was a sucess! Keep us updated on how things go.

 

We had a thread on "what ethnicity are you" a while back. Mostly white if I remember. However, I suspect that Dr. Schulman's observation reflects her patient population in general. Maybe someone will be able to find the thread? I do suspect there is a genetic component...but with regards to enthicity I think it is really hard to say just b/c so many PANDAS kids are undiagnosed.

 

I know Dr. K. has a phenotype as well (intelligent mom, etc)...and I don't personally believe this actually represents the true population of PANDAS kids...just the type of folks that are determined and educated, the type of parent who questions docs, does there own research on the internet, and has the resources to travel hundreds or thousands of miles for appropriate treatment with Dr. K.

 

Here's an article about strep/ocd in polynesians http://archpedi.ama-assn.org/cgi/content/full/157/7/665

 

I'm convinced that the if you have PANDAS and have parents that are either poor, uneducated, or don't know to question the medical community...you will likely end up misdiagnosed (bipolar, ocd, tourettes, odd, adhd, --unless they are very lucky with a clearcut case of PANDAS and an astute doc) and inappropriately treated, more likely to wind up in a mental institution, in jail, on illegal drugs,or a bunch of psych. meds, than receiving Azith. and IVIG. If you are a kid in the foster care system (or medicaid) with behavior issues, nobody is going to delve into "why"...you will simply be put on a battery of psych. drugs no questions asked. http://tmap.wordpress.com/2008/08/31/anti-psychotic-drugs-for-kids-get-state-look/

 

Are you familiar with this case? http://www.mlive.com/news/detroit/index.ssf/2011/04/post_55.html Maryanne Goboldo was arrested for refusing to treat her daughter with Psych. drugs. Her daughter developed severe behavioral problems after receiving immunizations. (I suspect her dd has undiagnosed PANDAS, but we'll never know unless we can get the mom on this forum.)

 

 

BIG Dittos, EAMom

[Kayanne]

I am of Irish descent. I have also watched Dr Schulman's videos. They are great. If she was closer to NC, I would have made an appointment with her a long time ago.

Just to give everyone a heads up, it is my understanding that Dr. Schulman is a pediatrician who limits her practice to the local community. I am very grateful for her contribution to the video series and treatment protocol that Dr. MDK posted...many doctors won't even go that far.

 

In case any of you missed his page, here it is again:

 

http://www.drmdk.com/html/pandas.html

Edited May 12, 2011 by Kayanne

[thereishope]

I think this is the thread EAMom was referring to

http://www.latitudes.org/forums/index.php?showtopic=6654&st=0&p=52554&hl=mediterranean&fromsearch=1entry52554

[bws]

By the way, she also mentioned that she will be giving an interview about Pandas to Parents Magazine. Keep your eyes open.

[Dedee]

Where is Dr. S located? I watched the videos. They were good.

[Kayanne]

Dr. Schulman is in Brooklyn, NY.

[tpotter]

I have to agree with EA Mom. I totally agree with the genetics, but I really have to question the ethnicity. We are jewish, but I have met a lot of kids who I suspect as having PANDAS, and most are not Jewish or Irish. But, the main thing is that she is treating, and knows what she is doing!

[kimballot]

I am of Irish descent. I have also watched Dr Schulman's videos. They are great. If she was closer to NC, I would have made an appointment with her a long time ago.

Just to give everyone a heads up, it is my understanding that Dr. Schulman is a pediatrician who limits her practice to the local community. I am very grateful for her contribution to the video series and treatment protocol that Dr. MDK posted...many doctors won't even go that far.

 

In case any of you missed his page, here it is again:

 

http://www.drmdk.com/html/pandas.html

 

Dr. MDK is really trying to get the word out about PANDAS and from the looks of things it seems that many people have seen Dr. Schulman's videos. I have written to him and asked him to continue to post videos. For example, I think an interview that highlights PITAND and notes that many children with PANDAS have exacerbations with other infections would be a good video. I encourage everyone to make and account and send a message to Dr. MDK. He really does listen. Let him know that you appreciate Dr. Schulman's videos and also let him know if there is something else you would like to seel.

Edited May 12, 2011 by kimballot

[fsilverpsych]

I also have enjoyed her videos! My child is half Jewish and half Irish... so that was interesting to hear from Dr. Schulman... however, I also agree with EAmom that many go undiagnosed. As soon as we had an early-onset OCD, I started scouring the internet and found out about PANDAS within a day. That's my neurotic, susceptible to Jewish- guilt side (lol)- must learn, must fix... immediately!

 

Francine

[mkur]

I agree with EAMom totally.

 

I have a friend from Brooklyn and she told me that in her neighborhood you were either Irish or Italian. Huge Irish population. They are very lucky to have Dr Schulman.