Mamafour

How are you all doing now?

Richmond, VA — Dr. Wei Zhao at VCU. Takes insurance. Communication sometimes slow but orders ivig and plasmapheresis depending on case. Changed our lives.

We treat flares with azithromycin regardless of trigger. I will say, we don’t often know the trigger. We think sometimes it’s as simple as seasonal allergies. Apparently azithromycin has an anti inflammatory effect as well. We don’t try to see if the flare will pass on its own (ie if not bacterial and don’t choose abx) because in our experience, we do better to treat it quickly. So much easier to solve when the inflammation is just starting. I will say I think I understand your train of thought with the question— is it’s not bacterial, why would abx work? I struggle with that idea, but also have seen what happens to my child when we try to wait and see if it will get better on its own, and it’s not worth the risk.

We saw immunologist Zhao at VCU Richmond when we were in the worst flare. I noticed you seem to be in that general area so thought I would mention. Good luck.

Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. .. The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.) We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up. Hope I helped or at least gave hope. Good luck.

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It is Dr. Wei Zhao at VCU/MCV Children's. Our daughter is about 3 months out from plasmapheresis and doing so well.

Hi there, I've never posted here before but for over a year have read and reread posts here. My daughter is 9 and has PANDAS. I suppose it may be Diagnosed as PANS this year as her flare up was caused by mycoplasma. The reason I am posting is that I struggled to find a doctor or hospital willing to try ivig for us when abx failed. We are close to D.C. but didn't have the funds to pay out of pocket at Dr. latimer. I finally found an immunologist at VCU and we just completed plasmapheresis. We are finally getting our daughter back. It's amazing. I am posting only because I know how desperate and hard the search is to find a doctor, especially one who takes insurance. I wanted to spread the word if there is anyone in VIrginia needing treatment for PANDAS.