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Looking for IVig in N or S Carolina or VA


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Anyone know of any docs that will provide IVig in these states? We are in NC and we are considering it because our son continues to have flares. We can get it from our doc up north, but not until the end of the summer, just before our son enters kindergarten. We had planned on doing it early in the summer so we could isolate him from Strep and other germs afterward.

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Bees- Try PM'ng Mom MD. I don't see her on here very much anymore, but she is a doc as her username suggests and she might be able to point you in the right direction in NC. You can use the search feature for forum members as well as topics.

When are these docs gonna stop treating pandas like it's a religion???? We don't "believe" in it. The medical establishment cannot afford to believe in it. They can't afford to dish out abx or IVIG/PEX so it HAS to be rare if it exists at all!!! Doctors must HATE the Internet!!! This syndrome is about whose family is tenacious enough to find a way to get treatment. Everyone else become the psychiatrists and public school's problem. The practicality of "collateral damage" doesn't even leave a pragmatic distaste in the mouth's of most physicians in this arena. These are CHILDREN! The consequences for our society in every single way you can imagine are significant when you are discussing the brain!

I don't think PANS striking these docs families would make any difference. I think they would get treatment for their own and keep right on trucking like it never happened.

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We had our IVIG's at a local Coram Center- speciality chains that do IV's- look in your area, may be one close by.

 

I was impressed- pharmacy on site, RN's that do IVIG's all day long- our treating Dr. at the time called them, and faxed the prescription for IVIG over, exactly how he wanted it done.

You are assigned a nurse, special chair, DVD player, etc.

They walked me through the whole thing, and answered all my repetitive and double checking them questions.

20 minutes away from us- dd got to sleep in her own bed at home, no travel costs, and I thought there price was very good when I compared.

Key is your treating PANS Dr. writing your script to get it done.

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If you your Dr will Rx it for your child to have locally, you could also try Critical Care Systems/Accredo or MedPro Rx to do the infusion. We're in central VA and I'm pretty sure both infusion providers operate south of here. Actually, MedPro may be based in NC-- or have locations or offices there, anyway. I think it's a NC number that comes up when they call. If you need phone numbers, feel free to pm me.

 

We travel north to see our PANDAS doc, though, so unfortunately don't have a treating physician to recommend.

 

Good luck!

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Dr Corbier in Charlotte did IVIG for us. His office is on a wing connected to Jeff Gordon Hospital (in Concord, NC) and they did it there. DS had a severe reaction when they started the 2nd bag on the 2nd day. We did not see any gains from having IVIG, so we never pursued another one. And BCBS denied further IVIG's also.

 

From what I hear, there is a long wating list to see Dr Corbier as a new patient. He is a pediatric neurologist, treats a lot of Autistic patients, but sees some PANDAS patients too.

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Thanks all. Dr. B will do it in late Aug. but it works against our timeline. I had planned on it earlier, rather than later in the summer. DS5 is starting kindergarten at the end of Aug. and I had hoped to do the 1st IVig and then take some time away from other kiddos and germs/Strep, isolating, so that I could protect his immune system optimally. Wouldn't you know he is on an upswing right now, really close to 100% for several days, so it does not feel as urgent on this day. However, the roller coaster has increased over the past few months and I have to assume that he will continue to have PANDAS responses when he mixes with other kids and the public in general. I see IVig as a possible way to stop this freight train.

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