peglem

Ooooh! I want a picture of that! Sending prayers!

I wonder if he would have cultured positive for strep before abx. Because, except for the flu mist, that describes my daughter to a T. She was never tested for strep until she was ten...and didn't have symptoms then, but tested positive every time she was off abx for 3-5 days.

I know you're already kinda overwhelmed with meds and supplements right now, but taurine is supposed to help with concentration, and has been found to lower CamKII activity as well, let me see if I can find that study...

Valerian root in combo w/ the melatonin helps my daughter- not sure if its a problem to give with seroquel though.

My daughter has taken both for several years, neither has affected sleep, good or bad.

Dr. Latimer is in Bethesda, MD. Is that too far?

I've been told that the psychologist they brought in as a consultant (since he was not school staff, he could tell me to medicate )was very smart....but he didn't have a beard! Honestly, this vid was too much like many meetings I've had!

I didn't know it had liver health properties. We used it for a couple of months, years ago, for mood. I don't think it did anything for mood and its kinda pricy so we discontinued. But that was way back before we knew about PANDAS, so Allie was still dealing with a lot of fluctuating behaviors and was likely on risperdal at the time. Wish I'd kept better (or some) records. On the other hand, Allie has been on zith for a long time, with frequent diflucan use (not to mention 3 courses of rifampin) and we have not seen any problems with liver function. We do test periodically to be on the safe side.

Seems low to me. I'd be more comfortable w/ 250 mg/day for that weight...maybe cut back later, after a month or so.

i'm not as advanced as you.... but isn't that why some get relief for tics with mag or b vits...it works on the peripheral nervous system..somewhere down the chain... those supplements would not be doing anything in the basal ganglia or over the bb... or am i still not connecting the dots??? I don't know...I can't even find all the dang dots!

We use diflucan for yeast. But, I'd continue abx as well.

Lots of experience with restraint here! I have come to the conclusion that restraint only works with the consent of the child. Once my daughter got to where she could understand that she was hurting herself involuntarily during these episodes (head banging, biting) she has been willing to allow some restraint- though too much accelerates the rage/panic and makes things worse. We actually got insurance to pay for a helmet, but the one they provided is hard shelled and hurts like crazy when she head butts- however she cannot remove it herself. The one we use is just a karate helmet from karatedepot.com. It is soft, she can remove it herself, but will leave it on when she needs it. Now, as far as getting beat up by my child, I've kind of just accepted that as inevitable and work on minimizing damages. Honestly, she's not really angry when this happens to her- she is terrified and comes "at us" in an attempt to get help- but her body is automatically responding as though she is in grave danger and she can't control the striking out very well even though I can tell she's trying to pull her punches...So, I hold her as gently as I can (which is not very), and assure her very calmly that I'll help her get through this and we can deal with it. When things are beginning to calm, I congratulate her on finding ways to deal with it... We can't stop it from happening, but we can learn to deal with it. The helmet is the only device we use-

So with all this talk about the BBB and closing it, and how to get the auto-antibodies to go away- and do the receptors themselves act like antigen to trigger antibody production.... My understanding is that the same receptors found in the basal ganglia are also found in the peripheral nervous system...so, I'm wondering (this probably isn't great for my sanity) if you have motor/autonomic dysfunction caused by PANDAS that is not related to the basal ganglia malfunctioning? What got me thinking about this is that my daughter was on bethanechol to treat problems with her sympathetic/parasympathetic nervous system. It worked great! But, in November, she started having episodes of profuse, shirt soaking sweats. I looked up SEs to her various meds and found that it was a possible side effect of bethanechol. She's been on it for a couple of years, at least and we never had this problem before, but it resolved when we removed the bethanechol. My thinking is that as we continue PANDAS treatment, the issue that was causing the original symptoms that the bethanechol was treating is being resolved and now the med is causing SEs, instead of treating the symptoms which are no longer there. To my knowledge bethanechol does not cross the BBB and so it was not treating anything in the basal ganglia. Although, I suppose the sympathetic problems could have been the result of basal ganglia dysfunction-downstream in the chain.

Kimballot said This is what I think. My daughter has had this a very, very long time- since infancy. We do not see a resolution of OCD and fixations w/ treatment because there is very little else that her brain has practiced or learned to do...those are her pathways and it presents as autism...and this is also why I think PANDAS can cause autism. But, the good news is...w/ time and the proper help, I think we can still bring about some normal development...but just CBT/ERP isn't enough-we have to find a way to stimulate the development of normal relational pathways, since they did not develop.

We've never used it, but I looked it up on Wikipedia and holy jiminy! Wonder what his rational is for using Cipro? Looks like a serious SE profile.

Tossing this back over to Buster. Look at this thread (from the pinned "helpful threads" http://www.latitudes.org/forums/index.php?showtopic=6265 Especially look under the headings Research and Other considerations Under research: So, closing the BBB is important to stopping the auto-antibodies from interacting w/ the brain.

That looks like its the ASO. Low ASO and low AntiDnase do not mean anything. Elevated titers can confirm recent strep infection, but low titers do not mean there is or was no infection. Here's a thread w/ titer info: http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305 You can find this and more info in the Helpful Threads for PANDAS thread pinned at the top of the PANDAS/PITANDS page.

Autoimmune diseases fall under rheumatology. But most immunologists are also allergists. On the other hand- all of the specialties are fraught with cluelessness regarding what our kids are going through. Dr.B seems like the obvious choice after reading your post-

If money is an issue and you feel like your child is getting appropriate treatment already, I'd hold off on the Cunningham test. For us, 18 months ago, it got the ball rolling on treatment. But, I don't see how it would help your docs at this point.

I can only tell you our experience. My daughter has been doing 1.5mg/kg every 4 weeks since May 2010. She does have immune deficiency and IgA is very low. We use gammagard because it has low IgA (reduce risk of autoimmune reaction to IgA). She has always done very well with it. In November, because of scheduling difficulties, we did her infusion 3 weeks after the last one, instead of 4, and I saw better improvement than in the past and did december's just a few days more than 3 weeks, same difference in improvement. I'm going to check w/ immuno and see if we can switch to every 3 weeks. My feeling, from our experience, is that it is quite safe.

Dr. L consulted with my pediatrician even before she saw my daughter- we didn't even have an appt. yet. She just talked with him about PANDAS treatment in general. That was over a year ago though, so maybe not the same policy now. We did see her in January 2010, and she did another consult w/ pediatrician in September or October of this year. Just have your pediatrician call her, she may very well call back when she has a chance.

Also, melatonin works with reduced light or darkness. What works best for my daughter is to give 1.5mg of melatonin and if she's not headed for sleep 1/2 hour later then I give another 1.5mg. Giving the 3mg all at once seems to slam her into grouchy tiredness before she's had a chance to ease into sleep mode. I also give her something to eat with it-she's sleepier w/ a full tummy. Can you move the lamictal to the morning? I suspect that it is not the culprit since it is given so far away from bedtime. What's the dose on the lamictal? When my daughter 1st started lamictal, I think it caused sleep problems, but that SE went away after she was on it for a month or so.

She's recently had some symptoms that don't seem to be PANDAS related- some have resolved since taking her off bethanechol (the hot flashes/episodes of profuse sweating). We think maybe some of what is occurring is that medications that were addressing PANDAS symptoms are causing side effects now that immune issues are being addressed. But, also, I think she's having sinus issues causing headaches and photophobia. One of the problems with monthly IVIG is that it makes it difficult to test immune issues and infection issues, since infections are all about checking IgG. Still, we are trending in a positive direction, so we'll deal with the little stuff as it occurs.

"no" is a trigger for Allie and I think a very common trigger. Her triggers are mostly not words, but things she gets stuck on.

Gosh darn! I hate it when PANDAS ruins the special times! Saying a prayer that your son will be blessed with healing during the night and enjoy his day tomorrow!