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Falling down on purpose


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My immunologist definitely agrees that he has an autoimmune encephalitis. We did check his titers with his relapse in Nov and they were up to 500 and 700. We did not repeat the Cunningham number because I thought her lab was closed for the holiday. After the two weeks of steroids his number fell to 335 and 550 and we did repeat the ANA at that time and it was normal. We have not repeated the titers but he is on day 23 of a 30 day steorid trial. I think it would be interesting to see his Cunningham numbers pre-IVIG but I guess her lab is closed. I really feel though it would just re-confirm what I already know which is he has relapsed.

Carter did fail his diptheria vaccine and strep (10 of 14) but his IGg levels were normal. My immunologist felt it would be hard to secure a CVID diagnosis but did agree that his immune system was deficiect. She did not think it would fit the insurance CVID criteria though.

Getting Dr. Bouboulis opinion would be good but I honestly do not think we can travel right now to see him. We are all mentally and physically exhausted and I think we will be doing IVIG in the next week or so. Maybe a phone consult would be OK. I also can't see traveling up there for treatments? Where do you live and are you doing the treatments at home? My immunologist thinks we need IVIG monthly but is just concerned on how to get it covered. Carter had such a severe reaction to FFP and he has very big allergies so we need to do the first few in a controlled setting but after that she wanted us to do them at home. I am hoping I will get our answers next week but I did e-mail her today to update her so maybe I will hear sooner. I am sure she will run some pre-IVIG labs. I will give her Dr. Bouboulis's info to see if she wants to touch base with him.

Thanks,

Claire

Claire,

 

I know after PEX his cam kinase was at 99 if I remember correctly, and before the PEX he had very high strep titers I believe ASO? Has his titers and Cam been retested recently. If this is caused by antibodies, does he have them again? Anyway, what about Bouboulis since your son has a very high ANA (I remember 1:640 ). I know with CVID there is an autoimmune component. He apparently has a different way of looking at these kids. My dd gets monthly IVIG now for CVID. She too has a very high ANA low C4 and finally low IGGs and IGMs. She had chronic infection for years but didn't have the low IGGs until 10 years old. Her Pandas symptoms started when she was 7 years old when her ANA was 1: 2560. Her IGGs were normal at that time. Not anymore. Anyway what about Bouboulis? What has he said. He seems to really get it, he gives monthly doses which are high for the autoimmune component. Also I wanted to mention that Swedo's SC study showed the best improv for SC was seen by the IVIG grp, where with PANDAS it seemed PEX had more benefit. If I remember the studies correctly. You cannot keep having the infusions at GT center too expensive. After an initial dose, a home nurse is much cheaper.

I would rerun the IGGs again, especially after a month of steriods they will be lower.

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See if you can draw a vial when they put the ivig line in for another IGG test. If you son is borderline it may be worth it. Great his ANA was normal. I would see if you can get a consult with immun doc and Dr. B before IVIG , once you get the IVIG you can scratch most testing for about 12 to 15 weeks. We do have IVIG at home now. Not the first two though. I am not sure if it matters where the ivig is ordered from unless insurance makes an issue. My dd gets her ivig ordered from her doc here in Ohio, but her next two infusions will be in Florida. The nursing home care Maxim is national and Caremark will ship product to other home. So I am wondering why this would be an issue? Unless ordering doc can only write scrips to local residents. No one seems to think much about it. Insurance still covering. Anyway, I understand your need to find immediate relief for your son. In October, 5 months after our dd's initial IVIG, insurance was piddling around with her CVID infusions and we could see her deteriorating and we did the same, we were just going to pay and get the long term details worked out later. Its not worth waiting, I understand. However, getting any last effort blood test in before IVIG, is critical. Especially if Dr. B has some insight.

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