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we paid another pandas doc , not dr k, $1k per 10lbs, approx. so $13k for 140lbs. I think $10k per 30lbs is high, that would have been over $40k for my kid, but again we did not use DrK.

we saw that oral steroids and pex helped. ALOT. If IVIG helped- it was a long time for us to see any change and it coincided with pex. We talked to our neuro and they agreed to try it. It did help, physically, my child got much, much better. as far as OCD- I cannot say enough about residential / intensive CBT. you can PM me for more info, if you want

same steroid response seen here

won't be at the conference wish I could, though. but will you have any more yellow sun pandasnetwork magnets? mine cracked.

if the high limit of MCHC was 38- why was 34.5 flagged? maybe it was a typo on the posting-- but I do not think that is very high- high enough to stress over or cause any PANDAS problems. I am sure Dr M would let you know if it was a concern- and if it was- it generally is due to a "clumping" problem- cold agglutinin - blood clumps at cold temps or an unusual shape to the RBCS (sickle cell, sphereocytosis, I am sure there are others!). Was his H&H normal? MCHC is the amount of Hgb in a certain volume of RBCs.

One of my PANDAS children did have this problem for a few months, but it gradually got better- we did not do a tilt table test or anything to confirm POTS- we were dealing with so much PANDAS-wise at the time. I believe it is autoimmune related , or at least can be! there is a cardiologist near us who treats it , but it is not easy to treat. Best of luck to you and your daughter. How old is she?

This is great for those patients& awesome news! I guess we all need to remember Dr Devi if ourselves or a loved one develops Alzheimer's! a doc who is willing to give a long shot a try

WOW!!! I wonder why she said IVIG will help, too-- I mean if it did not once- maybe she thinks repeat or just time after the IVIG will help? I always think the IVIG did not help my child- pex was done 2 months later and big improvements were seen 3-4 weeks post pex-- maybe both helped the inflammation. who knows? I wonder if some other doctors can get pex (in the "georgetown" technique) going?

We stayed at the Ronald McDonald house right by Rothman Center (two houses are actually really close!) We had a vehicle, but when my husband joined us- he flew into Tampa and then took the super shuttle to the RMH. That was cheap ($50 or less) but might be difficult with a PANDAS kid- depending on the specific issues he has. it is close, though I would try to time it not in the evening for rush-hour. There is a big bridge from Tampa to St Pete's that I bet gets nasty in the evenings.

I believe my child was diagnosed (honestly and correctly) with post-infectious encephalitis and strep infection. Maybe not everyone fits that diagnosis, though. We see a neurologist. Our ins did pay. I understand how you feel, watching everyone else's child get tx and you are sitting by the wayside. I felt that way on here for a long time. Have you considering paying out of pocket? We did that once (as the first IVIG was done in a doc's office who did not take insurance.) It was expensive- as my child is older and was quite heavy for her age at the time. I did and do not "have the money" for it- but we had to find a way. That has been the whole deal with PANDAS anyway- always trying to find a way. This journey has pretty much financially ruined us- or at least set us back 10 years- but my daughters are better and we are hopeful for their future now. I hope you do not take offense- just trying to let you know you are not alone. Maybe a different doctor would be able to see if your son has a different diagnosis- in addition to CVID? I mean Dr B looks from an immunology point of view, LLMD from lyme and Neuro from the brain/CNS.

Every plan with Cigna is different. Mine did pay for pex and for IVIG= depending on your child's diagnosis. That code would have to be up the ordering physician. Also, of course, you must be receiving the IVIG at a place that participates with CIGNA or any insurance. I know someone (different employer/state) all with CIGNA and it would not pay. So, maybe I missed something- but Dr Swedo is saying PEX should be first line tx?

I would so strongly recommend going. dr m or her fellows are great. theor abx recommendations have been so helpful. we see a.different pandas doc, but dr m's advice was so helpful.

PM'd you!

I know very little about hyperbaric oxygen from an integrative medicine standpoint- but I wanted to mention that there is a place in Tampa or St Petersburg FL that does this for brain-injured and (i believe) autistic kids. When we were at CBT at USF and staying at the RMH , there was info about it- as some familes come to FL for the hyperbaric oxygen and stay the RMH. I do not know if you are aware of this facility-- i think this is it: HBOT facility Also- Jonos Mom-- I am in your area and my child has seen a great integrative physician (of course, no insurance either)maybe it is the same one? Dr Z?

great news! Thanks for posting:)

Honestly, at first, I completely discounted the advil dosing "thing". That was until I tried it and I have seen it help, actually quite noticeably for my almost 5 yo and my 7 yo. I have not had the same experience with my older two affected (13 &14) but that could be due to keeping the dosing up. I do it 3 times a day (if I remember!) for a few days. Sorry, do not know anything about Dr Frej. Hope it works out!

I think you made a wise choice at this point. It is hard to know but after 8 (right) attempts at this- I think you need to find a new avenue. It does not work for every kid! Does not mean NOTHING will work- but this may not be the course for your son. I know that was a hard choice. Good job, lmkmip67!!

well it was 2 g/kg over 2 days-- so it was 1 g/kg a day- 55 kg = 55 g Gammunex on Tuesday and 55 g Gammunes on Tuesday- one daughter with tics and anorexia/OCD the other with chorea and ocd

2g/kg

Glad to share, please feel free to PM me for any thing you or she would like to know!

she actually could not /would not disclose any specific fear, though we got as far as she was afraid if being wrong, working hard, that kind of thing. we stayed at the ronald mcdonald house, just her and I, my husband joined us the last few days. We made a donation when we left, they ask for at least $10a night, I think, but it was worth way more to us! RMH IS AN AWESOME CHARITY! many dinners were provided, even. if you end up considering the USF program , ask the scheduler at USF about it. they have fill out a specific form for the rmh to allow you to stay there.

I have not read this whole thread, but after pex, ivig and steroids, school refusal was the only ocd that my 12yo child had remaining. 3weeks at the usf clinic made that history. she still does not like schoolwork, but can do it now. their program changed our family dynamic for the better!

ditto on the above post. USF did not take my insurance, but they only collected what they would not get with out-of-network benefits. even if I paid the whole thing up front, it was about 3k. I would pay that again in a heartbeat. she sites need to be willing, but maybe a few days there and she will. my daughter was pretty uncooperative until the end of the first week, but got so much out of it by the time we left.

were these drawn AFTER IVIG?

I have 3 with it and probably a fourth. I know two other families (one with 3 and one with 4) affected. I can think of three I know personally off the top of my head with 2. We had one sudden (overnight) onset, another sudden onset 18 months later and the third developed vocal tics a few months after that. OCD and fears came a few months after the tic-only onset. These three are all treated by Dr L, ivig, steroids, abx and pex & two are in ERP therapy and doing much better these days! The fourth is a little less clearcut, though much better post steroids. She is only 4, so we are watching closely. When I first heard of a family with 2 kids with this "rare" disease, i will admit I was skeptical. When my second PANDAS child developed sudden onset symptoms- I truly did not believe lightening could strike twice. You are in good hands with Dr L.