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Hi,

 

My DS (24) still not getting better after 5+ years. Too long of a story to go into it but have tried everything.

 

LLMD and Pandas doc think its time to look into IVIG. Went to Neuro and he agreed to do it.

 

I made appt. with Dr. B in CT just for another opinion. They said will have to test whole family with test, not covered by insurance. Could be up to 1400 per person in household.

 

Is this normal? Can hardly afford test and appt. for DS no less rest of family.

 

Is this a deal breaker if we won't do it?

 

Has anyone else had to do this with this doc?

Should I even bother to go see him? Just thought I should see an immunologist.

 

Any info would be greatly appreciated.

 

frikfrak

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I called to see Dr. B also just recently and was told the same thing.

 

I can see Dr. B's reasoning, as it sounds like he has had patients with a family member who is a strep carrier, and that is why those patients were not getting better, so it sounds like that is his policy: to rule it out. If there is a trigger in the home, IVIG can work but the patient may become exposed again.

 

We elected not to schedule an appointment because we had already done that testing in our family, and they still want to do their own. Our reasoning to see Dr. B was large number of + allergies on testing and a chronic sinus issue plus low IgG. I have a local immunologist we see but he does not treat PANS, but our rheumatologist will. We cannot travel from OH to CT repeatedly either and we would need to go back again for test results.

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Is the IVIG covered? Is there a reason you are hesitant to try it? I would think, if you have truly tried everything and not had success in 5 years, why not try IVIG?

 

This is the new site created by the top PANS/PANDAS doctors. It may prove helpful to you and your current docs:

 

https://www.pandasppn.org/

 

Maybe you can find a dr. who will give a 2nd opinion, and takes your insurance. List of providers in Ohio from PANDAS network:

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/#OHIO

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