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I think that is right-- so 40mg total a day? I am pretty sure my 6 yo started there. She was on liquid, however. It sure helped! Best Wishes

I know it is early out there on the west coast-- but some of us here on the East Coast have been up for hours!! We want to here lots of details about the PANDAS track talks yesterday! DO TELL!

Thanks, browneyesmom-- No, it is not your blog-- though I read that, too!

IF so, if you could PM me-- I tried to contact you via the blog and the mailbox was unavailable. I hope, certainly, that you have moved FAR FAR away from PANDAS by now. the last post was hopeful and off to a ND last fall. I have some "pex made it worse" questions. Thanks

YAY!! Thanks for posting this-- I always appreciate "more preaching to the choir" !

check out the helpful information thread at the top of the forum posts-- there is a link to doctors by state there, I believe. Best Wishes!

SFMOM- Thank you so much for your comment. I am aware of what you mentioned. that is exactly what her LLMD HAD told me (ages ago, that IF we did IVIG, the timing of restarting antibiotics was critical. Of course, our daughter will not take any meds. So I do not know what to do! Do you think (if this regression is related to a lyme complication) it will subside as the IVIG wears off? We do not see the LLMD anymore (only because my child will not see anyone!) so I do not have that angle on things available to me. It has been over a year since we saw that doctor.

danddd- I pm'd you.. also, how did you find out the schedules & rules? do you remember any specifics? thank you so much for responding.

My daughter lost math skills and had sensory symptoms as some of her first PANDAS symptoms. We did not recognize it as PANDAS- even though she had strep 3 weeeks prior to onset and we already had one child with PANDAS!- we sent her to a tutor and it was difficult. We homeschool and she went to a tutor twice a week for 2 hours. The tutor would point out t tear stains on her math papers to me. Literally. My daughter would cry silently because she COULD NOT do the math. She was 10 1/2, 5th grade, at the time. Her Math skills did improve greatly after plasmapheresis. Within a few months she was back to doing nearly all her school work, and since IVIG- it was really no more of a problem. I have wondered how the math deficit in PANDAS occurs. At the time, not realizing she had developed PANDAS, she was very griouchy and frustrated at everything. I saw it as just a general overstimulation of her brain and she was just too mad and huffy all the time to do math. That is why we sent her to a tutor. I am not sure if I would do it again, knowing that it was PANDAS. We spent a good deal of money and much distress by taking her. The tutor was a good friend and she did learn her times tables, but the emotional toll was trying.

Thanks for your responses. pandas16: my daughter DID take riluzole (for glutamate) for only about a week last winter & I really thought I saw improvement-- but she refuses to take any meds now. We are unable to "hide" it- as she knows and will refuse to eat I do think glutmate might be key here for her (and probably others) As far as other infection-- she did have lyme & babesia that was extensively treated by an excellent LLMD, as last labs that were drawn (over 1 year ago) were cleared as best as the doc could tell at that point. Her medical refusal includes nay docs, labs, meds-- who knows what is going on in her. I really want her tested for anti- NMDA receptor issues, but our neurologist thinks she would be much physically worse. She has chorea, tics and uncontrollable movements, but they seem to be better, not 100% but better over the past few months. Both of my oldest daughters developed PANDAS at 10 & 1/2- so I am wondering if that is more than coincidence - maybe something else is going on here in their developing bodies causing this? I am watching my next daughter, now 10, like a HAWK! philamom- I think I am already in contact with the person you mentioned. Rogers came very well regarded by that family. I am going to call her tomorrow for some more help. WorriedDad- so how did they suggest you get someone who refuses help, help? this is such a problem at many places. If the child, with PANDAS, AGREED to help, I probably would not be in the severe situation we are in now!

in the midst of an "episode"- whether a few hours or even several weeks at a time, my otherwise very expressive, appropriate child would "beome autistic-- kind of an "intermittent autism"-- not an answer to your questions, just an observation. I agree that they are 2 distinct, but possibly, easily co-morbid conditions, certainly--in a little one, it could be very difficult to differentiate! Also, perhaps, the mechanism of action of cause the disorder could be similar. Who knows?-- I hope someone figures it out soon!

We will be persuing this soon at the direction of our PANDAS doc-as our child refuses (vehemently) all medical care & the IVIG 7 weeks ago has seemingly not helped. If you know anything about either of these facilities or any other facility for a 13 yo girl who will be going against OCD's bettter oppositional disorder (literally has to to do the opposite of whatever we say- though reverse psychology does not work- go figure!) and extreme anxiety-- like a PTSD variety. I would prefer east coast- but I just want my kid better! any info?

Regression is a sign that it is working and getting rid of the bad autoantibodies. You should want to see that. I had a HUGE regression with each autoimmune treatment I had. High dose steroids & IVIG It lasted for about 6 weeks each time then slowly got better- up to remission. The regression started almost immediately. Also to add from experience... headaches for me usually was usually the precursor to something awful. pandas16: BOY AM I GLAD TO READ THIS!!! my 13 yo had IVIG 7 weeks ago and it has been TERRIBLE! We restarted prednisone (high dose) 3weeks ago and risperdal one week ago and we are finally seeing some improvement from the regression-- but still not really improvement from before IVIG. Whether it is from hitting week 2 of prednisone- always a magic number for us in the past-- or risperdal-- or all 3 things working together, we will never know-- Our doctor wants us to repeat mulitple IVIGs for a few months, but it has been so horrible with no relief I cannot imagine doing it ever again. thanks for giving me hope. Is this written somewhere scientifically or does some doctor go on record as believing this (regression means the IVIG is doing something?) my doc never really said that-- just that we need more. thanks!

My daughter had something similar, thought not exactly. She would be utterly convinced that we had moved our hands in a certain way when we had not moved a muscle. Alto fo her OCD involved making sure our hands do not touch anything, esp fabric. She has to rub our hands and fingers if they touch anything (nightmarish, huh?) We have to hold our hands in certain positions and be statue-like. She will watch as be as still as possible and then start screaming that we moved, or touched something- when we obviously did not. I never thought of it a phantom feelings, however she also was convinced we had touched her back (which we never, ever would- as that was a mortal OCD/PANDAS sin!) and it would set off hours of agony for her. This led some docs to say she was paranoid or hallucinating-- she would say that we HAD touched her back-- she knew it, she had the feeling thet we did, when no one did. In my mind, I likened it to when a kid swears things are contaminated when they are just out of the dishwasher-- not reality, but REAL to them.

My 12 yo daughter had pex in Jan 2011 & IVIG May 2011. Doing beautifully. On 250 mg Zithromax QD.

My 13 yo (who also had lyme at onset of PANDAS/PITANDS) just had her first IVIG about a month ago. She was given IV steroids each day-- about 60 mg, I think-- she weighs about 60kgs. It was ana IV push after the IVIG was completed. Here we are almost a month post and we restarted them (orally) as her situation has declined. She was ill with the typical vomiting/severe HA post IVIG, despite the steroids. Best wishes to you, Tico421!

I am not in IL-- but searching for some other info and I stumbled upon SIU--- dept of child neurology Dr Prantazelli? Dr Sunder? They offer IVIG, pex & other treatments They list tourettes/ sydenhams & PANDAS as things they treat. just thought I would toss another few names out there & see if anyone might know or give them a try? Hope it helps somebody.

Thanks for posting this-- more than the corruption, I have personally been aggravated by not having the freedom to choose what medical treatments for my child. I am not talking insurance coverage (I am a free-market believer;)-- I am talking about the governmental regulations and requirements. If I want to try something and I am willing to pay for it-- than DARN it-- It is my business. interesting, mama2alex. I signed up for their email list and will be interested to hear what this group has to say. Thanks again

One of my daughters with PANDAS did vision therapy. It was after the PANDAS began, but before we realized it. She did not have tics at the time , thoguh she did develop them . She was 10 when she did vision therapy. I noticed that her anxiety and grouchiness (which were absent pre-PANDAS) went through the roof during & after therapy visits. She REFUSED to do any of the "homework". She really enjoyed the therapists & the exercises when she was there, but anything beyond it-- no way!

Wonderful news! Please keep us updated on how their journey continues!

I also have these, what LLM describes, sometimes they are even auditory, as well. Just as I fall asleep, I hear a very loud clashing sound and have muscle jerking. They are also called sleep starts. I do not know if that is what you are describing, though. I would also suggest you look up benign fasciculation syndrome-- I think it could be an increase in frequency of tics, though. They can occur at night,I believe. However, I think they are normally markedly decreased during sleep.

Dedee, I am so sorry. I too have lived through this with my daughter. Risperdal helped her rages greatly. The lowest dose was not helpful, but we slowly went up and it helped her at a little higher dose. I understand your concerns about paying for IVIg. We just had it done for my daughter last week. We have already had some positive results, which was not expected (though I hoped!). we also paid out of pocket & are crossing our fingers. It is scary to wait, but the finances are scary, too. Can you find out the diagnosis code the doctor will use and then call the insurance and see if it will be accepted? I know that our doctor's office cautioned me not to call too much, as that might make things worse. Who knows what the answer is? Our insurance did not require pre-authorization, but says they will not pay for it for PANDAS. Since her diagnosis is post-infectious encephalitis, we are hopeul. I know your fear of CPS or DHS coming. I frequently wondered if the sheriff would be called. If you need to wait- no one faults you. ASk your neuro about Risperdal, maybe? best wishes and prayers today.

It is very possible that the Bartonella is incidental and not causal to your child's problems. So, she may have had PANDAS/PITANDS or whatever for longer than the Bartonella. However, if it is definitely positive, you really need to treat it. A good LLMD is a great place to start. As far as IVIg being dangerous with lyme, I am not sure. I have read and been told different things by people who are in the know! I do know that our LLMD said that the timing of restarting antibiotics for Lyme after IVIg for PANDAS/PITANDS was critical. We never were able to get our child for IVIg at that point. She clearly had lyme and was treated, but never got the all-clear from the LLMD. She refused care for a year, so we never did labs to the point of it being completely resolved. She just had IVIg a week ago and so far, we are very pleased at the results. It is very hard to coordinate between doctors, esp LLMDs and other doctors. Some traditional doctors find some LLMD's a bit too off center for their tastes! I really feel like I had to pick one doctor as my fearless leader (hehe) and then carry on. Good luck!

I think it is considered significant if it is 2 standard deviations below the mean. Obviously, different doctors may have differing opinions- but I think I read this on the website for PID or and IVIg website. So-- break out your high school math? YIKES!!

Our LLMD treated my Lyme & Babesia positive PITANDS child with pulsed dosed antibiotics. I am so grateful that you posted this explanation. I was never able to quite understand why we were pulse-dosing. I do not remember the specifics, but it was like ceftin or zithro or something m, w, f; among may other treatments. It would have been very helpful for me to understand the purpose behind this when she was being treated. The number of times I got bizarre looks from other doctors about the interval dosing extrememly frustrating. Thanks for posting this article.