Immunologist

[JDuffner]

Currently my DD6.5 is seeing her Pediatrician who will treat her and do testing. She is also with a OT and a Homeopath. Just trying to find out, how many of you go to a Immunologist and what do you feel the benefits have been for you?

 

Thanks!

[Suzan]

Hi! We went to an immunologist who was no help at all and not interested in PANDAS, never heard of it. He did our allergy testing where I found out dd was allergic to a bunch of stuff. Then we switched to another immunologist who I heard through this board was interested in it and wanted to help. We see her now and it's great. She took blood looking for underlying immune issues which could contribute to the problems and maybe find a way to pay for IVIG. No luck for us so far but we'll keep hanging in there. We will be getting allergy shots to try to control the allergies.

 

So, I think it depends on the immunologist you find. If you don't like the first one, keep on looking. I think it is very beneficial to get a complete immune workup and allergy testing.

 

Susan

[KeithandElizabeth]

We use an immunologist because this is the one type of doctor who either has their own IVIG facility or easy access to IVIG.

 

I also feel that something has to be askew with the immune system in order for such a young child to have such a horrible mental illness which is physiologically based.

 

The key is finding a good doctor who is willing to work with PANDAS. We also found a great pediatric oncologist/hematologist who is willing to work with us.

 

Elizabeth

[Debbie1]

We also found a great pediatric oncologist/hematologist who is willing to work with us.

 

Elizabeth,

 

I was wondering what the hematologist is able to do for you? The night before last, I was flipping channels and on NJN, there was a program on blood disorders. The hematology team at Cornell/Weill (NYC) was featured and they were discussing how they love their field because they solve medical mysteries and help people recover. They mentioned autoimmune disorders including Lupus and showed someone getting PEX treatment for it. My reaction was - maybe I should contact them about my PANDAS children, but wasn't even sure what to ask. Any guidance?

 

Thanks,

Debbie

[ShaesMom]

We see an Immunologist and he is the one treating my daughter with monthly IVIG. He also treated her with the larger dose for her Pandas. He has been a saving Grace in our lives. IVIG is readily available at his office and he has staff who specalizes in this area.

 

She receives the monthly IVIG for an immune deficiency which we discovered shortly after the Pandas dx.

[matis_mom]

We see an Immunologist and he is the one treating my daughter with monthly IVIG. He also treated her with the larger dose for her Pandas. He has been a saving Grace in our lives. IVIG is readily available at his office and he has staff who specalizes in this area.

 

She receives the monthly IVIG for an immune deficiency which we discovered shortly after the Pandas dx.

Could you all please post the contact information for Immunologist you have found helpful? It would be great if someone could start a thread on that.

Isabel

[melanie]

We see an Immunologist and he is the one treating my daughter with monthly IVIG. He also treated her with the larger dose for her Pandas. He has been a saving Grace in our lives. IVIG is readily available at his office and he has staff who specalizes in this area.

 

She receives the monthly IVIG for an immune deficiency which we discovered shortly after the Pandas dx.

Could you all please post the contact information for Immunologist you have found helpful? It would be great if someone could start a thread on that.

Isabel

What state are you in?

[KeithandElizabeth]

Hi Debbie:

 

Well, the Pediatric oncologist/hematologist was really consulting with Dr. Kovacevic to help us with our son. He was not a PANDAS expert, but completely believed in it and was willing to do anything to help us!! I believe bubbamom also used a pediatric oncologist/hematologist. The other benefit is that they usually have an IVIG facility for the cancer patients.

 

Elizabeth

[ajcire]

Debbie, I think I saw some of that special if it was the same one.. this one was about immune issues and there was a young child who was constantly in need of blood transfusions. I didn't catch the rest of it but it was really fascinating.