peglem

Way, way back when my daughter was only about 4 years old....She began some very serious behavioral episodes...teacher and I cold not figure out what was going on. (she was already in a special needs school). After about 2 weeks, she woke up with a swollen cheek. Boy, did I feel like i deserved the crappiest mom of the year award! Turned out she had 10 cavities, 2 abcesses!!! I have often wondered if/how that contributed to the PANDAS. Since those teeth were taken care of, she has not had a single dental problem until just recently (10 years later), just had a root canal- and that was in a baby tooth. She has 2 baby teeth that have no permanent replacement backing them up.

Okay, guess I'm not understanding what an immune complex is, or well, what are the implications. I gather they are not supposed to be there. Does the presence of immune complexes indicate an immune problem? An autoimmune problem? I tried reading some things about it- couldn't comprehend.

So, a positive test means.....?

Just an FYI...you cannot take olive leaf extract and antibiotics at the same time....I really hope you get some relief soon! ~Karen Why is that, Karen?

I've never heard of this test. Can you tell me more about it?

The IgG subclasses are all w/in normal ranges- I doubt you'll get any help there as far as immune deficiency goes. Antideoxyribonuclease-B antibodies is, I think, anti-Dnase. I do not know much about the strep pneumonia titers...when we saw the immunologist @ 2 yrs ago, he vaxed her twice to get those to rise. That seemed to satisfy him that everything was working okay. We've seen him again just recently and he's retested those titers again, 5 of them are low again....he wants to vax and look for a response AGAIN! He's going to have to convince me of the value of that this time. I'm no expert, but I don't see any aha!s here. You should supplement vitamin D!

I hope you can take some measure of comfort in the fact that if it does come back you do know what to do about it now. And, I think you're right about PANDAS & psychiatric disorders...I think it will open the door for research into causation. In fact, they've got Susan Swedo looking into autism now- teasing out subgroups and looking for commonalities w/in those groups. Personally, I think she'll find a group that has PANDAS, and I think she already suspects some kids with autism have PANDAS.

I do that too! You're gonna get through this, lady! Things are going to get better! You may even retrieve your sanity!

But, doesn't Sammy still have problems when he gets ill? I thought that he would go back on the abx when he felt symptoms coming back. I guess I look at the whole mental illness thing differently. It seems to me that mental illness is erroneously believed to be a diagnosis, when all it really is is a label given to a collection of symptoms. Like if somebody has a stroke- the stroke is the actual problem, or diagnosis- not the neurological manifestations of the stroke. I see my daughter's "autism" the same way- its not really a dx, just the name that has been given to her collection of symptoms. Its very frustrating to me when doctors do not try to find the source of symptomology, and just accept the symptoms themselves as the "diagnosis". When Allie's pediatrician talked with Dr. Cunningham and Dr. Latimer and looked at the research- it suddenly dawned on him that my daughter probably doesn't have autism- its been PANDAS all along. I corrected him- she does have autism, but autism is just her symptoms. PANDAS is most likely the cause. Also, if you look at page 11 of the Mouse Model paper- the researcher explains that the PANDAS mice exhibited behaviors that were autistic-like. Now, if PANDAS treatment is successful for my daughter, she will still be developmentally delayed because the actual developmental process was perverted by the PANDAS. But, I do see a chance for her to make strides in development, once the cause is dealt with. Does that make sense? And I think its appropriate to link to this Turkish paper on 4 adults with untreated pediatric onset and a bunch of psychiatric "diagnosis" (what's the plural of that?), who had some measure of recovery with plasmapheresis: http://www.turkpsikiyatri.com/en/default.a...icle&id=592

The lithium did not help- I meant we went back to the pre-lithium normal, which was still desperate. Just wanted you to know that it didn't cause any permanent "worse".

dabel, We were desperate enough to try lithium- it made things worse, but back to our "normal" afterwards. She was only on it for a week.

I think there just isn't enough info out there yet to get a good answer to that question. I hope its a "grow out of it" thing- but I haven't got any evidence that that is the case. I think if it goes untreated in childhood, it will continue into adulthood....just my thoughts though. Just mentioned the schizophrenia thing from a very personal, completely anecdotal observation that has no science whatsoever backing it up. My hub's sister has a schizophrenia dx...and I was around for 3 episodes of complete batpoop crazy breakdowns. I didn't know her when she was a child...so don't know anything about that. But, every one of her really crazy (I'm talking about very scary psychotic episodes here) "breakdowns" occurred during, or shortly after upper respiratory illnesses. I've often wondered what would have happened if they'd just given her high dose abx, though it would have been very dangerous to leave her w/o psych meds. Anyway, she has been stable on psych meds for the last 5 or so years. When she's not nuts, she's a terrific person! Even on meds, though, when she gets ill she still gets a little crazy. Not stark, raving, call the white coats crazy, but you can tell she's a little "off" - kinda fuzzy headed, out of touch, can't concentrate sort of thing. She says she hears voices when she's ill, but now that she's on the right meds, she knows they're not real. I don't know if it has anything to do with PANDAS...

I think the "pediatric" part of it just means pediatric onset. Seems like there have been a few here who have been through it in childhood and don't have many problems with it in adulthood. The studies aren't there. Personally, I think adult onset would most likely be dx'd as schizophrenia. My hub has some relatives.....

I did not know this. Can you elaborate?

My daughter did not learn how to swallow pills until she was 11. We started by chasing liquid meds (given in a syringe) with 2 syringes of water. Then we convinced her that if she took the pill instead, it wouldn't taste as yucky. Once she was willing to try (and she was scared), we started chasing pills with 2 syringes of water. This is still how we give meds. She's a real pro now, even gigantic pills go down pretty easily! I think the squirting the water (slowly) into the mouth helps to move the pill in the right direction. That's what worked for us- your mileage may vary.

I think the dilated pupils is PANDAS. It made me remember.... a month ago when we were waiting for my daughter's dental surgery, the waiting room was running this medical-type stuff programming. It was some famous doctor who was promoting his latest book on near death experiences (or something like that...). So he was telling this story of a woman that nearly froze to dealth, and when he talked about her condition when she arrived at the hospital, he said something like, "Her pupils were very dilated, which is a sign of brain inflammation!" At the time, I was thinking that I better look that up because my daughter's pupils are dilated almost all the time. Then I had to deal with her recovery from surgery- and getting ill almost at the same time. So I forgot about it until just now, when you mentioned it here. Thanks for reminding me!

I'm not sure what I'm seeing here with my kiddo, either. Her OCD is just as bad as ever, with a few new ones going on, but the last few days, I've been seeing obsessions and movements that we haven't seen for at least a year. I don't know if she's "turning back pages" or just bringing it all on at once.

But your son WILL know how good he has it when this is over. Maybe not worth going through this, but at least he will get something.... Exciting news! So good to hear. Thanks for sharing.

Thanks, Buster. I've been looking alot. This really helps.

I've come to accept that my PANDAS daughter is a carrier- didn't want to because all the docs act like that means it doesn't need treatment. It seldom gets to infection state, at least in her throat, where it could be easily detected. There have been some unexplained things over the years, that resolved before they could be fully investigated. When she was 5 (geez, that was 10 years ago) she couldn't walk for 2 days...something going on with her hips. No bruising, no swelling, no outward signs of anything wrong. Just crawling along, dragging her legs behind her. Xrays showed nothing, blood showed nothing. There have been a few episodes of unexplained limping, same mystery profile. Weird under the skin armpit rash, and in the crook of her arm as well. All this before we ever had a strep test done. The rash finally resolved once she was on antibiotic- nothing ever took care of it before then. She was sick ALL the time when she was younger- I can't believe how doctors blew it off as "autism related allergies" (yeah, THERE'S a scientifically proven phenomena It got so we stopped taking her to the doctor, unless she was very bad off- it became such an exercise in futility. She was born in 1994, so those younger years, PANDAS hadn't even been discovered or named. Anyway- how to get doctors to see that for her, carriage is serious business? That even though she's not getting "infections", the strep is NOT harmless and just keeps fueling the PANDAS. The strep is being kept in check-her immune system is not allowing it to get to the infection state, but at a dear cost to her neurology. Overwhelmingly, the medical research mentions carriage mostly as a nuisance- gets in the way of determining whether there is "real" infection. It seems to be nearly universally assumed that carriage is benign, w/o any real evidence that this is so. But so many assumptions seem ultimately to trump the few that show a MAYBE its not as benign as we think. Anyway, yes, this forum and all you fellow sufferers out there...what a Godsend. And wow, we sure have come a long way in just the last year in getting this figured out!

Buster, in that paper, they talk about Psychogenic and Organic movement disorders. What is the difference?

Meg's Mom: But, isn't this what the immune system is supposed to do? Upon exposure, its supposed to mount an immune attack (make antibodies) and get rid of the invaders before they ever have a chance to make you sick. So, to me, it makes sense that just exposure could cause a PANDAS reaction. Worried Dad: I see this in my daughter too- remission is when she's not quite as ragey, self inflicted wounds begin to heal, she sleeps better and enuresis goes away. But the OCD and bizarre movements do not go away ever. We "seesaw" between bad and extremely bad. But after a period of extremely bad, merely bad seems like quite a blessing!

Hey how old is your pandas kid Me? She is 15 yo, just in October.

My guess is....from the support this doctor has provided, he was making that statement in the context of the principal's lack of belief. But, even if not, focus on the help you've gotten and not this ill thought out statement. If I could get that kind of help from a doctor, I wouldn't care what they said about us!

I wish I knew what to say to help you calm down...but I so understand your being angry and upset. Why did the immuno want to wait for the psych eval anyway? My experience is that's where they send you when they feel they have nothing to offer. Did he want a baseline of OCD scores before treatment?