pmoreno

He probably doesn't know much about the adult onset because he specializes in kids and its very different for adults. Do you know what triggers your symptoms? Is it strep? It would seem odd if it did because most kids outgrow that around 13. Did you have a recent vaccination? Some young adults react strongly to vaccines and start having PANDA like symptoms. If you can't find someone locally you might have to consult with someone out of town. We're in michigan and until we heard about Dr. K, we were having frequent phone consults with a doctor in Florida. They're called Creation's Own - the P.A. is awesome (and not as expensive per phone conversation as the senior MD's) He is very knowledgeable and might be able to give you some answers - His name is Scott Smith. They now do a blood test (kind of expensive) but it's called D8-17 and it will identify the antigen causing the problem with your immune system (like strep) and it also determines whether (and how much) the neurons are sloughing off myelin protein which would indicate that there is an autoimmune response going on.

I just saw your more recent post where you decided not to give the MaxGXL. I also read some of the other comments about this. It actually has been found that there are better results with using the B-12 to stimulate glutathione than to give glutatione directly. I can't remember all the particulars, but I think it has something to do with the fact that the b-12 will cause the body to more eficiently produce its own glutathione, than if you give it directly. Pat ]

Wow, that was harsh. I guess 4 years later I still haven't gotten used to the autism diagnosis. 4 years isn't gradual enough. In my son's case I had a normal functioning child, then he got his MMR and within a week he was gone. 4 years later, my son who was getting much better and close to functioning like a typical child (is anyone really "normal?" My son is "normal" he just happens to not have developed typically) got slapped in the face with PANDAS too. So I lost my child twice. Please choose your words carefully. There just may be other parents of children with autism, who also have PANDAS, and my not have had that chance to get used to things gradually. It wasn't any easier for us. The way I look at it, you had a typical child and know what it's like, and know what your child could say, think and feel. I never had that, and may never, and I don't think I'll ever "get used to" that We've done 5 IVIG's and will have # 6 in 12 days. Gradual improvements. It's not a magic bullet. I've only heard of one kid that was miraculously cured by IVIG and it took 17 infusions.

Thanks to all who have replied and shared valuable information. To Michelle who had some questions about the steroid burst: We are giving prednisone (it's calculated by body weight and this particular doctor recommends 1 mg. per kg. of body weight) since my daughter weighs about 60 lbs, it's roughly about 30 mg. per day for 5 days. I'm told that if this is effective, we should see a significant change in her behavior sometime between 3 and 10 days after starting the meds. Unfortunately, it does not last long (maybe a couple of weeks I've heard - am I right?) but it's more of a diagnostic tool, not really a solution to the problem. The point is that if the child reacts favorably to the steroids, then it must mean that the inflammation in the basal ganglia is going down and henceforth the improved behavior - which would then mean that PANDA's diagnosis would be confirmed and the next step is IVIG. I'm sorry to hear that things didn't work out for your little 9 year boy (in California) after the IVIG. I had hoped that this would work for everyone across the board who truly had PANDA's. Since IVIG is an immune modulator, it should theoretically restore the immune system and prevent these overactive antibodies from attacking the host brain cells. Can you tell me a little more about what happened with that - was there any improvement at all? I've heard things ranging from improvement in a few hours to after a few weeks. What makes this so hard to accept is that one minute you have a normal functioning child, and then after an illness, it's almost as if you have a stranger with you. At least with most autistic children who have been diagnosed early on, you have a chance to get used to the diagnosis gradually. Of course, I'm not saying this is easy either. I have found out most of what I know over a period of many months by checking info on the internet. We also visited Dr. Jeff Bradstreet's clinic in Melbourne this summer. At that time my daughter had fairly normal behavior, but it was thought that her previous odd behaviors were PANDA related. Now that she is back to these behaviors, I did speak with them about IVIG - they do it there, but its too difficult for us to make many trips back & forth to FL, since we live in Michigan. I did find some info about Dr. K in Chicago (only 4 hrs. away for us), so I have communicated with him and hope to do the IVIG there possibly after we finish the prednisone. I don't think there has been a lot of research about this treatment (first because it hasn't been used that long and also because there probably haven't been that many cases diagnosed (even though they're out there) and besides that I'm sure cost is a big factor for most people. I understand it's roughly $8,000 for 2 days of IVIG and most insurances won't cover since its still considered experimental. Any cost is worth the life and health of your child, but what would be especially sad would be to spend that amount of money and then not have any positive results. I imagine its kind of a gamble. I just don't understand why all these kids (who have very similar stories) react so differently - some seem to have complete recoveries - others get worse, from what I've read here. I don't know about putting my child on long-term antibiotics. I'm concerned about the resistance to antibiotics and other side potential side effects. Besides, in studies that I've read about, even some kids on antibiotics got strep infections. As I had said earlier, my daughter had a strep infection in June for which she was treated with abx, but she has her OCD symptoms back now. She also had a minor upper resp. infect. late July so I'm not sure if she is now reacting to the earlier diagnosed episode of strep or to the milder infect. she just had. They say it does not always have to be strep, that they can react to other infections too or viruses. I remember that with the first infection (which did not yield a positive strep culture) she had a mouth full of cold sores and on her lips too. I must say that this episode is not as severe as the last one (but it has only been a month, so I don't know if she will get worse for a while or if this is as bad as its going to get) The first time she was extremely paranoid about her twin contaminating her food and touching her clothes. She would get angry about nothing and have major temper tantrums & outbursts and yelling (not her normal personality at all - she's very mild mannered) At least that has not happened this time, but maybe its premature for me to say anything yet. We'll see. Anyway, we'll know more in a week or so after the prednisone takes effect. Again, I'd like to hear more from others who have used IVIG and hear pro's & cons. The doctor in Chicago seems to have a good track record of a lot of successes. I have not talked with him yet about the failures. I will do that in the future to be able to see both sides of the coin. Sorry for being so verbose. Pat

I'm new to forums and so I'm not real clear on using this system, but I was trying to reply to a post from March of this year by Pandas_chicago. I tried to enter the name in search, but nothing came up. Leslee is the name of the person who had posted im March about her son who was diagnosed with PANDAS in 2005, he had a steroid burst, then 4 months later IVIG - apparently has been symptom free since then. She mentioned her son was being followed as a case study by someone at Yale and she also said that even though her doctor thought he was cured, she thought that PANDAs is for life. I would like to communicate with her to find out more about the last few years. We are hoping to do IVIG with the same doctor for our 8 year old daughter. - am interested to hear about long term successes and what this study at Yale is yielding. There was also a posting by Caryn in May 2006 where she wrote that this same doctor had been discussed in another forum and that his ideas about IVIG for PANDAs should be scrapped. I'd like to know more about what exactly was written that would bring her to that conclusion. She cited something like http://p069.ezboard.com/Miroslav-Kovacevic...opicID=33.topic but when I type this in it brings me to a search screen and I don't know how to proceed. I am always interested in hearing both sides to any argument - with pros and cons you can make a more informed decision. Until I stumbled onto this website, I didn't realize that there were that many other people out there dealing with these issues. My pediatric group and a neurologist we've seen make me feel like I'm a raving lunatic and I keep hearing that it's still controversial whether PANDAs really exists. I will share a little about our situation: My daughter was normal (except for a speech delay shared with her twin sister) until last November (she was 7) when she had a week long fever and strep like symptoms. We did get a strep test which was negative (I was told that the strep could have been on her tonsils & they swabbed the back of the throat, that the speciman was not collected correctly or that possibly the test was done prematurely) In any case, thereafter she stopped sleeping through the night, developed odd hand movements, started squinting or blinking, imagined odd tastes or smells, couldn't write or draw, was emotionally inappropriate. This peaked in December and January (I even had her admitted to inpatient child psych because I was desperate)They didn't know what to make of it - gave her ativan, trazadone, prozac. Nothing worked - it just made things worse. She was seen outpatient by a psychiatrist & psychologist. I took her off the meds within a few weeks and she very gradually got better (over months). By end of April she was back to concentrating in school - writing & reading amost back to normal - although she had lost most of the school year. She was drawing beautifully again - no more odd tics or movements, slept well, etc. May, June and July were great - completely normal. However, she did have a strep infection in June and received antibiotics. The beginning of August she started the odd behaviors again and until now they seem to be getting more frequent - eyes blinking & squinting - hands drawn up into claw like position - stares at her hands, can't get dressed, can't write, cant draw, can't read, doesn't hear what your saying (have to repeat directions 3 or 4 times) I had her ASO titer drawn and it was 330 (normal ref range 0-249). Her Antidnase B is 50 which is normal (I don't really understand how that can happen. But today we started the steroid burst (which is prednisone given over 5 days). I'll let everyone know how that goes. If it turns her behavior around, I'm sure we will go for the IVIG. We have to do something because she's completely non-functional right now - no point in even going to school.