peglem

I keep hearing stuff like this. I wonder if it really IS common to see transient tics in childhood (even in relation to strep), but that MOST kids DO get over it, but for some reason in PANDAS kids it doesn't resolve on its own. All these pediatricians being lackadaisical about it...just doesn't seem like THAT many could just be callous jerks. And if it was uncommon- wouldn't you have more pediatricians saying, "whoa, what's up with that?"

While the boy improved on her protoccol, he still had loads reamaining issues. This was obviously a complicated case, but just the fact that he had chronic sinusitis (that didn't seem to respond to her protocol), never mind the presumed PANDAS, warranted Azith. Peglem (maybe she'll read it more closely than I did!) might be interested in this article. I do see that the author mentions biofilms. I also thought this was very interesting point: I took a very quick look...should probably look more closely when I get a chance and feel like it. Articles that spend a lot of time defining autism at the outset lose me quickly. When it started getting into the biomedical stuff...I let go. We tried everything under the sun when my daughter was younger...came out frustrated and somewhat jaded. Ugh, all those years of despairation (spelling error intentional) and trying sooo many things that worked for others...really, it sapped my ability to hope. I don't want to diss the DAN! doctors and that whole approach. I think there are kids who are finding help and solutions there...but, nothing worked for my kid. It was expensive and I just couldn't take the dissapointment anymore. I don't trust those "special labs" they run and interpret. But, my biggest problem is they have these protocols that they seem to automatically apply, without any evidence that they will be effective in my child's case and any new things that somebody finds success with they seem to start recommending it across the board for everyone. Want to make it clear, though, that this was just my experience...I think my child has an extreme case, even in the autism world they seldom see anything as severe as my daughter...I do not want to discourage anyone from seeking help from DAN!, as I know a lot of people who feel very strongly that it was THE ANSWER for their child.

I'll try. There isn't actually too much CamK. The CamK is too active. The antibodies to strep are stimulating extra neuronal signaling in the basal ganglia. It might help to understand that the basal ganglia is a "monitor and adjust" center for sensory motor signals going into the brain from the body and return signals from the brain back to the body. So the moment new sensory info comes in, the signal is upgraded or downgraded to reflect even minor changes in what the senses perceive in the environment. Abnormally high CamK activity, causes the signaling to be erroneously modified so that the body response is exaggeratedly intense or deficient. But, also the signal going into the brain is being incorrectly modified so the brain is receiving altered signals to respond to in the first place. In short, the part of your brain that is supposed to organize incoming/outgoing sensory/motor signals is in chaos.

(raising my hand.) I think my daughter's very severe autism is caused by PANDAS. She doesn't get fevers very often, but I wouldn't say it makes her mind "clear as a bell." What it does do (and she had a fever last week, so its fresh in my mind) is physically slow her down...almost lethargic. She does not show typical symptoms when she has strep- chronically, so they say she's a carrier. Her non-fever, non-exacerbation self is very, very hyperactive, so a little lethargy once in a while is a pretty nice break! (for me) Her non-fever, exacerbated self is bouncing (literally) off the walls hyperactive with very unregulated movement (don't know whether to call it chorea or tics- either way she has little control over movements) and extreme OCD so that EVERYTHING becomes obsessive or compulsive or both. I used to go to Dana's site a lot, but haven't in several years...nice to know its still there. I hope she and her kids are doing well. For what its worth, a lot of people do not know the difference between a virus and bacteria....how nice if you don't have to know!

When we got the CamK results, I wasn't sure how to get that info to my daughter's pediatrician. Those studies are long and I didn't think he'd really have time to study them during an appointment. On the other hand, I felt he should be compensated for the time spent on what was really my daughter's case...So when I called his office for something else, I mentioned that I had some study results- they said to go ahead and mail them, or drop them off. I decided to mail them, thinking he's be more likely to get them in a timely matter. I included a copy of email discussions that I'd had with the lab- some were K Alvarez, some were Cunningham. I let him know that Dr. Cunningham would be happy to talk to him about it and gave her contact information. He was soooo excited about the info, especially after talking to Dr. Cunningham!

No, I asked her if she would be willing to discuss the results with him. She said absolutely. He called her after I shared her studies and Allie's test results with him. She also referred him to Dr. Latimer and he called and had a conversation about treatment plans with Dr. Latimer. That's what Dr. Cunningham told my pediatrician...that it's like RF of the brain!

I have sooo, been there with all of that anger, and more. But, I think the "welcome to the club" statements were offered in support and recognition of the feelings we share with Faith...knowing that the CamK results give her affirmation that she is on the right track for her child, especially when she has encountered so many professionals that have disagreed. I know those professionals sometimes made me doubt what I knew was happening to my child, made things less clear and more hopeless. Getting the evidence was bittersweet for me...So good to know that I am not crazy, that I have been right, but a kind of sick feeling that my child has been suffering so much for so long that I just couldn't get people to see. Believe me, nobody on this forum is yucking it up over PANDAS or celebrating the disorder. But, at least we feel a kinship and recognition of each other's feelings that we seldom find elsewhere.

Maybe it would be easier for them to "get it" if you parallel it to Rheumatic Fever... if you'd had it, you will be kept on profilactic antibiotics until 20 or 25! RF is a well known and no one would argue with that, since the risk of getting it again is pretty high. Just explain to them it's the same thing, except the antibodies are going for the brain instead of the joints. With that and a few good articles, they should get it. Good luck! That's what Dr. Cunningham told my pediatrician...that it's like RF of the brain!

I wouldn't argue with them, just be adamant that the purpose of the prophylactic Abx is to prevent strep. You know Abx does not eradicate viruses, but things would get even worse if he got strep as well. I don't know if there is an official PANDAS protocol...it just makes good sense to protect against strep and other bacteria, even if your child has viral related exacerbations...if nothing else, you're reducing the # of triggers.

Maybe I'm overly fearful of what MAY happen because our situation started very early and disrupted early childhood and subsequent development...but, knowing what I know now about this, I think I'd go for the steroids and see if some of those issues resolve. And I'd do the antibiotics, too. I've peeked a bit into research on sleep issues and just lack of proper sleep is pretty bad for development and learning. Your son is at a critical age still in his development...and an age at which it is more difficult to gauge "normal" because there is so much variety. I understand wanting to be careful about medications....its a tough call for sure, ....but that's my take, based on my extreme experience with PANDAS...it scares me more than the medications do.

My 15 year old daughter has probably had this from infancy. Finally, with her Cunningham results this summer,(upper SC range when she was not in an exacerbation) her pediatrician feels he can get a specialist on board to get treatment.(Dr. Latimer talked with the pediatrician and thought she'd do best with PEX because of her CamK #'s and the severity and length of her symptoms). We see specialists at the beginning of next week- I'll be sure to keep you updated!

Faith, you are the queen of great questions!!

I'd do the benedril for a few more nights. Its relatively safe, and you know it works. We never got much mileage from the kids calm.

If your child takes antipsychotics, something that may help with side effects is bethanechol. Antipsychotics (risperdal, seroquel, haliperodal and others) are anticholinergic. Acetylcholine is a neurotansmitter in among other things, the parasympathetic nervous system (the calm down counterpart to the sympathetic, high alert, system). Bethanechol mimics acetylcholine, so helps to ameliorate the anticholinergic effects of antipsychotics. We kept the bethanechol after ditching the antipsychotics because it does seem to help my daughter a little with calming and fine motor function.

Oh, wow! How did it go otherwise?

Good question, Faith! My daughter has all sorts of strange, repetitive movements that seem too complicated to be tics- she has a manic quality about her when she does some of them. Although, I think she has tics as well. I can't get her to hold her hands out to see if she has the piano fingers. She has this weird, quirky "dance" thing that she does, I call it her windmill dance because of her arm movements, but she is quite manic during that and doesn't seem to have control over the movements or a choice about whether or not to do the dance. I've looked up movie clips of chorea online, but there aren't very many and they have a very different quality from what I see my daughter doing. Those are more writhing, and hers are very jerky. I've had doctors tell me its not chorea...but they can't tell me what it is, either.

Just my opinion... I think SC is the high side of a spectrum and PANDAS is just a variant of SC. Information I've seen on SC seems to indicate that it is self limiting- PANDAS seems to be more prone to relapse?

Yes, schools base modifications on individual student needs, not on the diagnosis, so whether they agree on that dx or not is immaterial.

From that study: AAAAAaaaaaaHHHhhhhhhhh!

My child has severe autism and I think it was CAUSED by the PANDAS! I think he needs to take a closer look at that!

My daughter has been on risperdal...glad that's over. At 1st it seemed to help, because she was finally able to sleep and it increased her appetite...but that was short lived. As soon as another PANDAS (we didn't know it was PANDAS when we started, so-hindsight) exacerbation hit, it didn't matter what she was on- then we'd try an increase...another exacerbation and it didn't seem to have any effect anymore. Then, something happened with insurance and while in the process of switching psychiatrists, we ran out...once she got over withdrawal symptoms (when I saw we were going to run short, I began tapering, but quitting completely still sucked), I swear she had the best 2 weeks of her life! Then we got another PANDAS episode....and its a testament to my desperation that I actually tried it again! When she was still having problems on it...I tapered it myself and took her off it (school was really ticked off, but they were the ones who reported extreme rages while she was on it! And they didn't even know she was off it til 6 weeks after!). So it was a failure for us...but sure was a lot of pressure to keep her on it from both psychiatrists and the schools. She has changed schools and psychiatrist (we were actually shown the door the last time we went to that psychiatrist) now! The previous school, since they are not allowed to suggest meds, hired an outside consultant to discuss it with us! (ABA was not working). Its not that I'm adverse to trying meds (very cautious though), just that we have never found one that helped! Her current psychiatrist respects our experiences and didn't bat an eye when I told her anti-psychotics are off the table. What I noticed in all that- and we found out about the PANDAS in the midst of it all- is that the best mood stabilizer for her seemed to be azithromycin, which is anyway, safer than psych meds. The problem, once you do find the PANDAS, is that the NIMH still recommends treating the PANDAS behaviors (OCD in particular) like you would garden variety OCD..ie-psychiatrically. Right now my daughter is on Lamictal (she was having seizure activity a few years ago) and we have valium, which I use sparingly for bad anxiety attacks. That's it for psych meds. We've tried many psych meds. with either bad results or none at all. So, that's our experience...

Sorry for not responding earlier. I'm not much of an expert when it comes to interpreting blood work. What I usually do is search the internet for anything that comes up out of range for my daughter....BUT, I don't think any of these things have much to do w/ whether or not your child has PANDAS. The immune stuff (so far) does not seem to indicate an immune deficiency, but I'd want to get the IgG subclasses tested because even if the total IgG is in range (wait a minute, did they even check IgG?) the subclass levels could be skewed- very high in one, deficient in another. A tiny bit of info because I don't know much) on the Ig's you did have tested- IgA is the antibody most prevalent on mucosal surfaces- respiratory tract, stomach/intestinal lining, eyes, etc. IgE is the one associated with allergy. I don't know about IgM because my daughter always tested normal range in that. The ASO and AntiDnase titers can only confirm a past strep infection, NOT rule it out. The Cunningham test, although it is in the study only phase, is the only one I know that can give you an indication of whether it is truly PANDAS or not. Other than that, it is a purely clinical diagnosis- behaviors temporally associated with strep, improvement with abx and steroids- this is one of the reasons we have been so excited about the mouse model and Cunningham's work...getting a clear, biological marker will make it sooo much easier to get diagnosed and treated.

We had about 2 years here that my daughter would not wear any clothes- but only at home. We tried to fight it at first, and once in awhile we'd decide to try to fight it again...but we were never really successful until shhe got on prophylactic zith. We still get relapses of nudity once in a while. The bathing has been an issue as well- we can either sponge her off during those times (hey. she's naked anyway) or can sometimes coax her into a bath by bringing things she obsesses over in with her. Poor kids, it must be terrible to be so scared of ordinary things in life.

Well, that explains a lot!

Maybe the strep is somewhere else in the body?