Dr. Murphy and Dr. Storch

[sww817]

Well if she agrees to see us I will let you know how she schedules us ongoing. I would prefer to see someone knowledgeable in person but also have her possibly consult with my local doctor for any urgent needs. We will see...

 

airial95- I think you said your child is pretty young. Did she put him on any medications like an ssri? Just curious.

[eljomom]

Burnell---how did you get in to see Dr. Swedo??

 

We have seen Dr L, Dr T, Dr Murphy, did the program with Dr Storch's office, and have seen Dr Swedo at NIH and Dr Smith in NJ. Plus local psychatrists and psycologists. We are still feeling our way now a year later as our dd12 relapsed after her only ivig. We were at Dr Storch's shortly after Dedee. To get the appt w/ Murpy, its a different one than w/ Storch's therapy team. You have to set it up first, then if you are goint to USF, go around that appointment. Dr M was good, but for us it was 2 visits and we are done with her. Dr T is very helpful. Dr Scott Smith in Edison NJ was good too.

Anyway, despite all the PANDAS docs, the NIH recommended simultaneosuly going with psychiatry medications and CBT therapy and PANDAS docs. Turns out, its alot of testing and trials.

[dcmom]

Their daughter was in the NIH trial.

[airial95]

Well if she agrees to see us I will let you know how she schedules us ongoing. I would prefer to see someone knowledgeable in person but also have her possibly consult with my local doctor for any urgent needs. We will see...

 

airial95- I think you said your child is pretty young. Did she put him on any medications like an ssri? Just curious.

 

No, she didn't put him on any psych meds. She did change is abx from Azith (which was working fairly well...but he was still getting strep on full doseage) to Cefdinir. He's been on that since. He was on it with her for almost 5 monhts, then she wanted to pull him off for a bit since he was doing SO well. We did, and within 6 weeks we had strep again. We've now found that 6 weeks is the longest we've gone without a positive throat culture. We've been since reffered to immuno through her office (a WONDERFUL doc by the way), since all of his immune workups have been maddeningly normal. No issues at all. After ANOTHER positive culture 3 weeks ago, our ped sent us to the ENT, (who is also PANDAS knowledgeable) who agrees that the tonsils need to go. We're scheduled to have them removed Nov. 18, after our next appt at Murphy's office on Oct. 19.