Philly Tx

[Ebersolk]

Has anyone ever treated with Dr. Pasquariello or Dr. Magnusson at Chop in Philly, PA? Are they PANDAS friendly? Thanks!

[tpotter]

Only one we found at CHOP who's even slightly open to PANDAS is Elias in Psychiatry. although another mom just found the director of rheumatology to be open to it. But, he suggested that she go to Yale, and indicated that she shouldn't waste her time at CHOP (which is what many of us around her have also found.) To give you an idea, when my son was hospitalized at CHOP for 4 days with 104 fever, postivie rapid strep, nystagmus, chorea, tics, and already diagnosed with PANDAS, the attending neurologist informed me that PANDAS was: "voodoo."

[nevergiveup]

I think the tides are changing, try it but make an appt elsewhere right NOW, with a pandas expert too for a second opinion. Its always smart with any serious illness to see the experts and get a second opinion!!!! Dr T, Dr Leckman, Dr Murphy, Dr L, Dr B. quote name='tpotter' timestamp='1284579357' post='84381']

Only one we found at CHOP who's even slightly open to PANDAS is Elias in Psychiatry. although another mom just found the director of rheumatology to be open to it. But, he suggested that she go to Yale, and indicated that she shouldn't waste her time at CHOP (which is what many of us around her have also found.) To give you an idea, when my son was hospitalized at CHOP for 4 days with 104 fever, postivie rapid strep, nystagmus, chorea, tics, and already diagnosed with PANDAS, the attending neurologist informed me that PANDAS was: "voodoo."

[PhillyPA]

Do not waste your time at CHOP. CHOP sucks. We've been there. Don't bother.

 

Go to Bethesda, Maryland and see Dr. Beth Latimer. Her office phone is 301-530-9200.

[JAG10]

I agree.... if you are looking for comprehensive treatment of PANDAS, at this point, CHOP will be a waste of your time.

 

Dr. K described things changing at CHOP as "trying to turn an ocean liner.... it will happen, but it will take a loooong time."

[kmom]

Agreed! I did get DD's first dx there but Dr. E charged me $850 our of pocket...more than Dr. T and Dr. B and she didn't want to share much info about the disorder. She's very conservative with treatment. In fact, DD ended up going backwards over time b/c penicillin wasn't cutting it.

[tpotter]

Luckily, she was in-network for us, but I made 3 trips to her office (the last with my husband, at her suggestion) for her to tell us how dangerous PEX could be (she was doing a research study using PEX), and wanted to be certain we completely understood the risks. We told her that we completely understood, but that our son was so sick, he virtually had no life left, and we needed to help him in whatever way we could. Then we heard nothing. I kept pushing, and all I got was a report (that I had to correct several pieces of info), and it suggested that I give him SSRI's, behavior modification (the child was physically collapsing, blacking out, having chorea, besides also having tics and OCD and severe anxiety), and then wrote that it "might" benefit from PEX. Then there was no more word from her! I was furious that I had wasted 2 months on her at my son's most critical time (he wasn't even able to attend school, and he was starting to hallucinate!)

 

Luckily, I found Diana P. at that time, and found out about Dr. K and Dr. L, because I hate to think where we would be today (including finding out that my other's son's symptoms were also PANDAS. But, at this point in time, I really would stick with the top docs. There is one more option, but please PM me, and I'll give you that name (not through CHOP, though.)