Anyone been diagnosed by Infectious Disease Doc?

[WorriedDADNMOM]

I have a question----anyone have kiddos diagnosed with Pandas by an Infectious Disease doc?? We have appt at ID and wanted to pick any brains with experience with ID and their experiences. Please respond.

[MomWithOCDSon]

Not mine. In fact, the local pediatric infectious disease "expert" is an extremely vocal PANDAS naysayer and, as head of his department with the area's major children's hospital, has established a "no such thing as PANDAS" response protocol throughout the hospital system. He ought to be ashamed of himself, but he refuses to so much as consider the possibility.

 

Afraid that has colored my perception of such "experts," especially those affiliated with the larger medical institutions. It's as though they've built their careers around referring hard-to-identify behavioral responses to known infections to their psychiatric departments and cannot fathom taking any responsibility for such cases themselves.

 

Sincerely hoping your experience up-ends my jaded impression! Please let us know how it goes.

[WorriedDADNMOM]

This is why I asked. I am somewhat concerned about this. I don't really care how my dds get fixed, just trying to head off the run around that I may get.

[Iowadawn]

Yes. We were sent to one by a psychiatrist who wanted confirmation. Unfortunately, we dumped him when we could see that he wasn't up on tx. BUT, that was before we found the TBI component. BUT, I'm sure we would have been laughed out the door with IGenex testing. Dawn

[momcap]

My son was not diagnosed by an ID, but we did see one. Since you were asking about other's experiences I'll share ours.

 

Our pedi was open to the idea of PANDAS, but not comfortable with prescribing long-term antibiotics without a diagnosis from a specialist. So we found an ID with a reputation of having an open mind. We had to wait a few months for the appointment, and our pedi agreed to prescribe prophylactic amoxicillin until the appointment. When we saw the ID he was fascinated by the idea of PANDAS, but had not made up his mind yet. He got downright excited to see the anti-neuronals from Dr. Cunningham and told me this is proof that there is an autoimmune condition affecting DS's brain. While we were there DS growled and banged his head repeatedly against the wall. He's always perfectly normal at appointments, so I thought "great, we will finally get somewhere". Wrong. ID doc had recently been investigated by the college of physicians for prescribing long-term abx for lyme disease. So he was interested in PANDAS, but afraid to do anything about it, without clear-cut guidelines to fall back on. He told us to stop giving DS antibiotics and basically to have a nice life. Unfortunately it was a waste of time! Even worse, we had no antibiotics left. So 24 hours after stopping the antibiotics DS was in full-blown exacerbation. His principal wrote me a letter that basically stated my son was not even the same child she saw at school 2 days earlier. No kidding. It took months to get him back to the level of improvement he had been at.

 

I'm sure ID docs come in all shapes and sizes, and with all manners of opinions. Perhaps yours will be more helpful to you. If PANDAS kids keep showing up in their offices, eventually they are going to have to figure out what to do with us!

 

Edit to add - he was clearly frustrated by his inability to help us. He told me about writing a paper on the discovery of h. pylori while he was in med school and presenting it at an ID conference and basically being laughed off the stage. Now 20 years later the 2 docs who discovered h. pylori have nobel prizes for that discovery. He ranted about the medical establishment being so difficult to change and his hands being tied. I felt badly for the man. He was so frustrated. Sometimes it's not just us parents who are cynical.

Edited November 1, 2011 by momcap