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Docs in NH, ME, MA or VT that Do IVIG?


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Thank you guys. I'll call Monday. I really would like to go and might end up going to Dr. K for it, but he said anyone can do it--it is just a mater of hooking it up and watching. I just need someone to order it. Dr. K felt why not stay closer to home, more comfortable. I agree. I have fam. I can stay with in MA too.

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Unfortunately Elizabeth TePas is booking out to October right now. She only works 1 day a week.

 

Too bad b/c we are desperately looking for an immunologist that knows about & believes in PANDAS for dd. We're in NH with Harvard Pilgrim HMO and would really like it to be covered by insurance.

 

I've debated Dr. Fuhlbrigge, but understand he sees the need for high titers, which dd does not have.

 

In MA: Robert Fuhlbrigge, MD at Children's Hospital Boston and Elizabeth TePas, MD at MGH for Children at Newton-Wellesley Hospital both order IVIg for PANDAS.

 

Nancy

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That's too bad that TePas is only working 1 day/week. Also, I did not know that Fuhlbrigge requires high titers. My daughter has always had very high titers so I haven't had to deal with this issue. Are you positive about this?? He has become much more open minded in the year and a half we have been seeing him. How about Raif Geha, MD, who is chief of Immunology at Children's? He does IVIg for a child I know and the child does not have high titers.

 

By the way, worriedmommy, Harvard Pilgrim Health just changed their policy regarding IVIg as of Feb 1. They will no longer cover IVIg for PANDAS! I am appealing it now as they have been covering my daughter's infusions for well over a year and when I signed on for the insurance policy it was based on the premise that they would cover it. They assured me they did. I now have supplemental disability insurance for my daughter that will cover what HPHC will not pay, but I don't want HPHC to get away with this.

 

Nancy

 

 

Unfortunately Elizabeth TePas is booking out to October right now. She only works 1 day a week.

 

Too bad b/c we are desperately looking for an immunologist that knows about & believes in PANDAS for dd. We're in NH with Harvard Pilgrim HMO and would really like it to be covered by insurance.

 

I've debated Dr. Fuhlbrigge, but understand he sees the need for high titers, which dd does not have.

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Also, I did not know that Fuhlbrigge requires high titers. My daughter has always had very high titers so I haven't had to deal with this issue. Are you positive about this?? He has become much more open minded in the year and a half we have been seeing him.

 

I just want to speak to this since we just recently saw Dr. Fuhlbrigge. I liked him a lot, but yes, he definitely likes to see raised titers. At the time we saw him we only had one ASO titer (negative) from a year ago, but based on clinical history and Cunningham results he does believe ds has PANDAS. However, I feel his treatment approach is too conservative. He prescribed pen vk 500mg/day for a year and said he wants us to do frequent titer tests. If we don't see a measurable rise and fall of titers corresponding to exacerbations, then at the end of a year we would have to think that perhaps it's not PANDAS. He said that the pen vk is the dose used successfully for rheumatic fever patients to prevent strep, and that the ONLY thing the abx are for is to prevent strep.

 

At the time we saw him, ds had been off abx for two weeks and was spiraling downward. We started the pen vk and after four days of getting worse and worse, I finally said, "*&^% this" and put him on 500mg/day of azith that we had from a previous Rx. He started coming back around within 24 hours. After the azith ran out, I put him on the Rx for Augmentin XR 2000mg/day that I had convinced our ped to give me a few months ago. DS had started refusing to take it because of the size of the pills, but after seeing what no/low abx was doing I told him he had absolutely no choice.

 

Like I said, I liked Dr. Fuhlbrigge a lot, but I feel his approach is just too conservative. A low dose of Pen vk just wasn't going to cut it and he doesn't believe that abx should be used for any other reason that basic prophylaxis. I'm sure it works well for some... but not for us. He did talk about IVIG as an option in severe cases, but it wouldn't be a possibility until we had tracked the titer trends, etc for a year.

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At the time we saw him, ds had been off abx for two weeks and was spiraling downward. We started the pen vk and after four days of getting worse and worse, I finally said, "*&^% this" and put him on 500mg/day of azith that we had from a previous Rx. He started coming back around within 24 hours. After the azith ran out, I put him on the Rx for Augmentin XR 2000mg/day that I had convinced our ped to give me a few months ago. DS had started refusing to take it because of the size of the pills, but after seeing what no/low abx was doing I told him he had absolutely no choice.

 

Could you just switch back to 500mg/day Azith if the Augmentins are too big? Our dd is on 500mg/day now...she actually takes 2 x 250mg tablets at once (so not the 500mg size pill)...that's just what the pharmacy gave us, lots of 250's!

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We are having IVIG in mid May with Dr. K. Yah! I hope this works. My son's symptoms have really, really ramped up over the last week or 2. We started 875 mg Augmentin per Dr. K. last Tuesday and Dr. K. feels he will be on this at least a year. My son has been asking me if the IVIG doesn't work, if he will be like this the rest of his life.

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Could you just switch back to 500mg/day Azith if the Augmentins are too big? Our dd is on 500mg/day now...she actually takes 2 x 250mg tablets at once (so not the 500mg size pill)...that's just what the pharmacy gave us, lots of 250's!

 

He was on 250mg of azith for a couple months at first and then it seemed to stop working so I panicked and asked my dr. to switch him to augmentin XR. We are in the northeast and there had been talk of macrolide-resistant strains of strep. It may just have been that he needed a higher dose, though. I have a years Rx of augmentin and I guess I feel like if it works, then it may be a less "heavy hitter" than azith (and we always have that to turn to in the future if we need to). Fortunately, he's been taking the augmentin again for a few weeks and been able to swallow them with no problem.

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