Visit to Dr. Schulman

[Debbie1]

A year ago, Dr. S. was not able to offer her patients IVIG so this must a relatively new thing for her. I would be interested in knowing how many patients she has now referred for IVIG, what dose she uses, approximately how many infusions her patients have needed, and what outcome she has seen so far. I would also be interested in finding out how she manages the side effects of IVIG.

 

bws - did she discuss any of this with you? If not, I think they are important questions to ask.

[bws]

A year ago, Dr. S. was not able to offer her patients IVIG so this must a relatively new thing for her. I would be interested in knowing how many patients she has now referred for IVIG, what dose she uses, approximately how many infusions her patients have needed, and what outcome she has seen so far. I would also be interested in finding out how she manages the side effects of IVIG.

 

bws - did she discuss any of this with you? If not, I think they are important questions to ask.

 

We are not yet looking into IVIG. She gave us a clinical trial of abx first. We will take it from there.

[StillHopeful]

Hi --

 

We are considering seeing Dr. Schulman in Brooklyn and wondered how things went. I am pretty new to this forum so if you already posted updates please forgive me. Thank you very much. -- Ngold24

[cynditk]

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!!

 

 

Thanks, great news, where is she located?

[bws]

My daughter finished the six weeks of medication, and refused to take more. I am watching her closely for any relapses. I decided to try to stop due to her extreme fatigue from medication. I think this is getting better. She is generally OK now.

 

Dr. Schulman is located in the Boro Park area of Brooklyn, NY.

[StillHopeful]

My daughter finished the six weeks of medication, and refused to take more. I am watching her closely for any relapses. I decided to try to stop due to her extreme fatigue from medication. I think this is getting better. She is generally OK now.

 

Dr. Schulman is located in the Boro Park area of Brooklyn, NY.

 

Hi --

I hope all goes well with your daughter. I read some of your posts and your daughter has some similar issues as my son (10 years old). He has a lot of anxiety too. He missed 20 days of school and was late 17 times in the last quarter. He symptoms came on abruptly in March 2011 (although something sim happened in Mar 2010 and then diminished) which is why I think it is PANDAS (plus he has had strep & high ASO). The doctors that he sees won't treat PANDAS so I may see if I can get an appt with Shulman. My son stays home, stays in bed, plays e-box, watches tv.. Car rides are full of anxiety, won't go to camp... He has sensory dysfuntion (tactile mostly) and often won't get dressed. He also has tourettes and ocd. The past few months have been hellish and I have to do something soon. Thank you for the information re Dr. Schulman. I am going to at least give her office a call. I don't know if my son will cooperate and go to the appt. We'll see. --NGOLD24