peglem

Fixit, I'm curious, too, about your anti-neuronal antibody results from both Cunningham tests?

I was the one who found the taurine/CamK study. Thank you for sending it to Kathy Alvarez. (Truthfully, it never occurred to me to do so.) After I found that study it took me a week or 2 to get some taurine, but I've been giving it to my daughter for about 2 weeks. I have not seen an appreciable difference. I may try raising the dose...haven't decided yet. In the mean time...I think your child's test results off/on taurine are very interesting (sorry its so frustrating).

Okay, I see what you're saying. And I agree that nobody is sure what things other than strep cause an increase in CamK activity. However, if the cross reactive antibodies to strep are found as well, the evidence for PANDAS seems a bit stronger. But, it does beg the question of whether the antigens that stimulate the production of those antibodies are also components of other pathogens. This is why I want to see the Cunningham study funded- we need the answers. In our case, getting physicians to help, even though there was a clear temporal relationship to positive strep cultures and my daughter's psychotic behavior, did not happen until I had evidence from the Cunningham study indicating that there might be a connection. The pediatrician was already a believer, but this gave him something to share with specialists, other than just his speculation. I hope it has and will be just as useful for others.

Skewed in what way? I'm not understanding what your point is with that statement.

I do very poorly on those tests as well, and I'm lousy at face recognition as well.

I don't know if you're refering to my daughter, here, but reading nonverbal cues is something that has never been there for her. One of those key things in early childhood development that didn't happen for her. So, I would not expect her to suddenly exhibit this during PANDAS abatement. But, during the 1st 3 months of this year, when she was doing so well- I do believe it was starting to develop. We are working with an RDI consultant on social/emotional development and this is one of the things we are tracking. I'm eager to bring the PANDAS under control again so we can get that development back underway for her.

First thing that comes to mind is meningitis! Does he have a neck tic that is making those muscles sore? I sometimes wonder if being sore triggers tics and tics make muscles sore and it becomes a vicious cycle.

Well, antihistamine send my child into a wild rage, so it could be something relevant to her condition. She also has almost no IgE- which activates mast cells to release histamine. I'll be revisiting these studies when I have more time. Thanks!

Sensory processing goes through BG. Personally, I think its related.

bump

Just strep exposure w/o infection can cause PANDAS symptoms. The immune system is designed to make antibodies against pathogens before they can cause infections. Its the antibodies, not the bacteria that produce PANDAS symptoms.

Okay, now its back to 43...what a scare!

What happened????? We've suddenly slipped to 539th?????!!!!

http://webpediatrics.com/pandas.html I've read it elsewhere, or heard it elsewhere... I'm on information overload right now so I can't find it. Oh, yeah, I had forgotten that Dr.K says that. I wonder if he's talking about structural damage or functional damage?

How is klebsiella treated?

Where are you getting this info? Here's the conclusion I'm drawing: Pandas is an autoimmune condition that erroneously activates neural receptors but does not cause tissue damage. What it can do is disrupt learning and development and possibly lay down some neural pathways that will be difficult to change. I also don't think it magically disappears with puberty.

If he's a carrier, its likely intracellular, so I'd go for zith.

Is he getting enough water? It also sounds like he could be getting dehydrated.

My daughter gets even more hyper- literally running from one end of the house to the other, and very, very silly. She giggles all the time. Then, too, unique to girls, there's the vag. itch.

Probably not, if he gets a daily dose. Zith has a long half life-over 60 hours.

So, just to clarify, this doc put your child on allergy meds (isn't that what clariton is?) w/o checking if the red, raw throat was strep? Anyway, so glad you found this sight! Do you ever wonder if your own OCD may have an infectious etiology?

I'll bet he was!

Thank you Pathways, where do you practice?

My experience is that w/o the proper medical intervention, behavioral interventions do not help and may make things worse. By setting unattainable expectations, anxiety is increased. For my daughter, the rages are like seizures-they just happen and no matter how hard she tries to stop them, they just take over. We had 3 months at the beginning of this year w/ a PANDAS remission- almost no rages during that time.

Before my daughter was on prophylactic abx, I would bring her in for a rapid based on ragey behavior. That got us a + @ 95% of the time.