Neurologist or immunologist?

[jadeelora]

I'm wondering which would be better suited as our first "specialist" step in the fight against PANDA'S?

 

[pr40]

there is only one q. if she belives in PANDAS and is willing to treat. It doesn't seem to matter if it is neuro or immunologist.

But, the answer may also depend on the issues your child has. If you think they are neurological such as uncontrolled movement or RLS, then neurolosits may be better. If your kid has weak immune system, alergies, etc, then immunologist would be more suitable.

[beeskneesmommy]

I feel that having both a neuro and imunologist on board has contributed greatly to my son's recovery. They each bring diff. ideas and understanding to the table. That being said, if I had to choose just one, it would be the imunologist that we see. That also being said, not all are alike - Dr. B has been exceptional in his testing, digging deeper into triggers and abx treatment, whereas other imunos have not. I think it depends upon the doc. It is important not to become complacent with any specialist - stay on top of them, bring ideas and research to them, and add in another if there is no siginificant improvement over a reasonable course of treatement. Warm wishes and good luck! -Kath

[LNN]

Depending on where you live, an integrative doctor/osteopath may be more helpful than a doctor affiliated with a children's hospital. So it's not only a matter of their specialty, but also a matter of the political environment in which they practice. As Pr40 says, their beliefs about Pandas matter far more than anything else.

[tu4four]

For us, the PANDAS immunologists revealed things that I didn't know and needed to know about viruses, level of igg, etc. our last recommendation from the most recent immuno was for IvIG. Insurance will not cover.

 

We just had a lumbar puncture, MRI with a very mainstream neuro who thinks PANDAS is over diagnosed. I would never have gone that way early on--felt like it was too invasive--but after all the other testing, I felt like it was time.

 

Haven't gotten the results yet except that her spinal fluid pressure was 38 (normal is 7-15 ...possibly up to 20). If she has encephilitis or autoimmune bands or some other thing show up in her spinal fluid--even this mainstream neuro can't argue with that. I may have to see someone else to have her treated correctly, but I'll have the test results in my hand.

 

Just my thoughts.....

[Mommy2MCL]

When choosing make sure you know that they are on board with PANDAS DR. We made the mistake of going to a mainstream neurologist who said I googled too much and diagnosed my DD with Tourrettes. Since then we have found a PANDAS specialist and are getting correct treatment.