peglem

If he calls Dr. Cunningham- she is very responsive to Dr. questions!

Mine does that with benedryl!

For my daughter the head banging is almost always a sign of dental and/or sinus problems. Ugh, this is one disorder where misery does not love company. So, sorry to hear about this. Headbanging is the worst!

Also would like to make parents aware of this free IVIG play kit from Baxter: https://webforms.baxterbioscience.com/immune/order.jspa This really helped my daughter w/ her 1st IVIG. With this kit we were able to do IVIGs on all her stuffed toys until she was satisfied that she knew the procedure. We talked to the "patients" about "their" feelings at the same time. Such a great resource!

Well, I've heard those same things from doctors- @ germs becoming immune to abx, but if you corner them on it, the risk of that happening is small. Consider, too, that the majority of livestock in this country is given constant abx in their feed, which I would think would contribute way more to abx resistance than an individual kid here and there.

Aspergers is just a label for neurological symptoms...Many PANDAS kids on this forum have ASD traits that resolve w/ PANDAS remission. Personally, I think your son's ABX dosage is too low. The fact that you say one of the life changes that brought on symptoms was going to preschool, AKA germ-factory, makes me wonder if it was exposure to strep and/or other microbes that caused the problem, more than just dealing with change. Behavioral therapy did not work for my child, and I am so remorseful for all the years we tried to make her responsible for things she truly had no control over. At any rate, behavioral therapy is bound to be much more effective if you treat the underlying medical problem aggressively.

I can't get that link to work! Try this - Not sure why it is not pasting right: http://www.primaryimmune.org/publications/book_pats/patient_and_family_handbook_4th.pdf or this: http://www.primaryimmune.org/publications/book_pats/book_pats.htm, and then click on the chapter that you want. okay, that worked! Thanks.

I doubt you could blame it on one argument. Fever opens the BBB, inflammation...its not just stress and if you didn't have those wonky antibodies in the 1st place, a temporary opening would not produce PANDAS. Let me find Buster's "Things that need to happen" list for you. Here it is From this post on Helpful Threads (pinned at top of forum) http://www.latitudes.org/forums/index.php?showtopic=6265

Aside from the environment, which may contribute to it, PANDAS itself amps anxiety levels. I've yet to hear of a PANDAS family who was not in a high stress environment due to the disorder itself.

I can't get that link to work!

Yes, but as w/ any other specialty- you'll need one that understands or at least is open to understanding PANDAS.

Does ibuprofen help?

Hope we do see you around! This is a great board- lots of support and information! I honestly think PANDAS/PITANDS is not that rare- its just rarely diagnosed. Can we help you find a doctor in your area that is familiar w/ it? Immune testing is a great start- but will this doc know what to do with it?

Based only on my experience: My daughter is a strep carrier who has been on full time abx for 4 years. She has not developed immunity to them. Her immune system probably was not working properly since before she began abx, but abx work with, not in place of the immune system, so I don't see how they would be able to create a malfunctioning immune system. If your child is PANDAS, the strep carriage thing can be a big problem- its the antibodies created by the immune system that cause PANDAS symptoms, not the strep bacteria, so having the constant presence of the bacteria (whether it is causing an actual infection or not), could stimulate the immune system to constantly produce the antibodies that affect neurological functioning.

My daughter had one shot.....OUCHY CHIHUAHUA!!!! I don't know about lyme- but it did not get rid of her strep.

Just my own speculation- Abx works with the immune system- slows the bacteria down so immune system can get rid of them easier. So, I'm thinking if your child had continued exposure before the titers went down, the immune system would continue to produce the antibodies. Additionally, if you had "hidden" strep, as those boogers die, the exotoxins (streptolisin O) would be excreted as a by product of bacterial death. ASO titer test is a measure of antibodies to those toxins that are excreted by the strep.

The abx doesn't kill the germs on the way in and the immune system is proactive (like its supposed to be) and responds with antibodies immediately when germs are detected....prevents infection, but if your kid is making wanky antibodies that act like neurotransmitters- well, their immune system attack themselves simultaneously with defending themselves.

Oh, I have so been there...God and I have been like an old married couple- and I was pretty upset with Him for several years. I really don't know (yet) why this path has been chosen for us, but I have gotten to the point where (most of the time) I accept that if this is what He wants for us, then He must know what's best and trust that there's a great big something wonderful at the end of the journey. When I forget that (usually when things start going well), stuff gets worse. But, I pray for all us PANDAS/PITAND families out there, and the physicians who help (and when I'm feeling REALLY kind, for the ones who don't help). And I thank God for all my cyber support!

I don't know what the treatment would be- not sure it points to a specific treatment. But, it does confirm autoimmunity because you definitely have some antibodies to self tissue that should not be there.

Last January we saw Dr.L. My daughter had a CamK of 242, but Dr.L was more interested in her antiD2, because they're not sure what the elevated CamK means and cannot base treatment decisions on it. However, they know that elevated antineuronal antibodies means antibodies against neuronal tissue and treatment can be based on that.

Well, there is no "PANDAS test" so no such thing as a negative one. I'm presuming that it was an ASO titer test- lots of PANDAS kids have low ASO titers. Also, many PANDAS kids do not have typical strep symptoms that would alert anyone to check for strep. I can't say if your family (you and hub have symptoms, too?) has PANDAS- its a clinical diagnosis, but the mold certainly sounds like it was an issue! I firmly believe that anyone with neurological issues should try to identify the underlying cause, be it PANDAS, Lyme, mold, or whatever. Sometimes you may end up struck just treating symptoms...but, I'd try to rule out infectious agents that can be treated so health can be restored. Here's a basic flowchart that more or less lays out a strategy for investigating: http://www.latitudes.org/forums/index.php?showtopic=6688

I guess I'm wondering why you started the zoloft if things were going well? Is zoloft supposed to help w/ tics?

I was talking about our experience pre- IVIG. We've not tested since we started monthly IVIG.

Yeah. But it still feels good to learn that all the struggles your child and family have gone through resulted in others getting easier help.

I'm not sure what a normal # of strep infections/year is, and given my child's disorder, every occurrence of strep is a major crisis here. Here's the thing, though- many PANDAS kids have asymptomatic strep (I mean not typical symptoms), so it would be hard to say how many times a person has strep when they are only being checked when displaying typical symptoms. I don't think it is unusual though, for most kids to get strep 2 or 3 times a year. I would just be vigilant about watching for behavior changes and dramatic tic increases w/ the strep- that would be a big red flag for PANDAS. Really, I think infectious etiology should be ruled out for all kids who present w/ neurological dysfunction because I would rather see the underlying cause treated, instead of just the symptoms...but maybe I'm a bit extreme because of our experiences.