peglem

He has been seen by Dr. L and treated with abx. She didn't feel IVIG was necessary as he had full remission from Mar-July on abx. The boys also had their camk run by Dr. Cunningham both were in the high range and indicated PANDAS. Dr. L is not seeing him right now as we moved to Colorado in July so we have been referred to Children's hospital here. Now about zith and hearing loss...is this temporary? He was on zithro since March of last year, however, we pulled him off of the zithro on Dec. 16th b/c his symptoms were getting worse and our doc here wanted to get a baseline and refer him to a new neuro. Yesterday he was not on the zithro and has been off for a month now. His symptoms got progressively worse in Nov. and were not rebounding on any meds which is why we removed the meds. Subsequently, his initial hearing screen was in Nov. at school at the same time the teacher saw a marked change. He failed the second screen on Jan 5th at school. Yesterday was a full battery of tests and he has significant loss in the right ear and his auditory nerve is not reacting to sound either based on the tests yesterday. Does this sound like a reaction to zithro? Thanks! Jen I think it can be permanent- I know there was a parent on here a long time ago, whose child developed hearing problems from zith. I tried to find the thread, but was unable. Google zithromax ototoxicity to find info. From what I've briefly read, its more common w/ IV zith.

This is how my daughter was treated after her autism dx. Could not even get decent medical treatment for non-autism related stuff. And mom was treated like she was some poor sap that just couldn't accept that her child was autistic (translates to hopelessly debilitated and not worth the time and trouble to help). And what really shocked me is that this attitude was most prevalent at the local children's hospital.

Anybody have a link?

Jen, was your son on zith? A rare side effect is hearing loss. Just saying that's something you might want to check/consider.

It just seems to me that anytime you are looking for evidence of disease through IgG testing- there would be no way to tell if the results are measuring donor antibodies or self made antibodies shortly after IVIG.

I have nothing to offer in the way of treatment suggestions, but please don't feel bad about venting here. We really understand how frustrating and isolating these things can be and I, for one, am more than happy to just be able to be an understanding shoulder to cry on.

We do 1.5g/kg every 3-4 weeks for immune deficiency.

Be aware that elevated IgE can also be a sign of parasitic infection.

How far do you live from Leroy, NY?

I love this site....made me look up Sydenham's Chorea, which had me refer to Wikipedia, which got me looking for PANDAS on Wikipedia, where I couldn't find a reference, in our context anyway. Would it make sense for some of our brighter minds to get a Wikipedia reference created? http://en.wikipedia.org/wiki/Pediatric_Autoimmune_Neuropsychiatric_Disorder_Associated_with_Streptococci

If the steroid works, even temporarily, its a good bet that what you're dealing with is auto-immune. So, you'll get a little respite (or maybe even a lot) and some very good information!

Here's what I think: ASD is a problem with development. Anything that interferes with brain processing during critical developmental periods (especially early childhood) can cause developmental problems. PANDAS disrupts normal neural processing, so may be the cause.

I'd also test for thyroid antibodies-PANDAS kids, I think, are prone to other autoimmune issues as well. I think we need a thread on differentials- there can be other things causing a PANDAS presentation.

Sorry, I have no specific info, except that docs have always told me that my children could return to school after 48 hrs on abx because they were no longer contagious.

I think you can't deduct insurance premiums that were taken out of your payroll pre-tax, which a lot of businesses do.

I've not seen this before....Nice!

That is wonderful news!

yep, joint pain here, too.

I think the anger comes from the fact that the authors are advocating not doing the things that have helped our children. Personally, I don't have a , problem with a doc that won't or can't help my child. We saw a local pediatric rheumatologist who, even with lots of evidence, dismissed us and sent us to psychiatry. He suggested to our pediatrician that I was making things up. Okay, I know this doc has helped a lot of other children. I know he's a "play it safe and by the book" kind of guy- if its not standard medical protocol, he won't touch it. I can live with that- he's not the right choice for us. The problem is, he's affiliated with a large children's hospital and many of the specialists we see call him to consult when they 1st see my daughter. He tells them that its a behavioral problem and recommends psychiatry, and we get no help. I think that's kind of what's going on here with Kurlan and Singer. Its okay with most of us that they disagree/disapprove the PANDAS stuff- we all know docs like that. Its that they put such extensive effort into trying to convince others in the medical community that the things that have helped many of our children should not be done (at least until the science behind it has reached very definite conclusions). When we've all fought so hard to help our children get well, K&S feel like the enemy-making the fight harder.

I vote for shitontoast( it has to be one word), because if you googled that you wouldn't have to deal with fuzzy critters or kitchenware.

The only thing high Dnase can tell you is that your child had a past strep infection. If subsequent tests show it is rising, then you may get abx treatment because if the infection has cleared the titer should start to fall. Honestly, there is no standard protocol. Each practitioner uses his/her own judgement. Some docs will figure it is pretty safe to at least try abx for awhile to see if it helps. Some will follow up with prednisone...there just isn't a standard protocol. AntiDnase is not the antibody suspected to cause PANDAS symptoms. Its just a marker for an immune response to strep and it is a normal immune response to strep.

Is he on a gluten free diet? That could explain the neg. celiac panel. Doc is right that labs cannot deny or confirm PANDAS. PANDAS is a clinical dx and the labs are just part of the picture- symptoms and response to treatment are other indicators to take into account.

I don't think its possible to have a false positive RST. That's just my opinion-the RST checks for antigen(s) specific for strepA. If it signals positive, that antigen is present in the sample. BUT, I think its possible, that the strep maybe disabled by abx and so will not grow out in a lab culture. Also possible that while the strepA antigen(s) are present, actual infection may not have occurred. I think the NDMA test is done through a spinal tap and is a different deal than the methalation thing. But, others here know tons more about both of those tests than I do, so you should probably wait for one of them to come along.

In young children, OCD can be difficult to recognize as the behaviors are rationalized as a phase or quirky behavior. Here is a link to a list OCD in young children http://www.latitudes.org/forums/index.php?showtopic=6153 peglem, thank you, my son has some of these behaviors!!!! i just thought it was his quirky way............I feel sick to my stomach now. On the other hand...if the tics/OCD are caused by an immune reaction, you may qualify for free treatment through the study and knowing this, could save valuable years of fruitless psychiatric and behavioral interventions. Really, knowing is a good thing!

In young children, OCD can be difficult to recognize as the behaviors are rationalized as a phase or quirky behavior. Here is a link to a list OCD in young children http://www.latitudes.org/forums/index.php?showtopic=6153