peglem

I'll bet it feels marvelous to be vindicated! Sorry about the strep!

And the flip side of that is frustrating, too- having multiple + strep tests and no rise in titers, or falling titers. I can see titers rising due to exposure, w/o there actually being an infection, since those titers are to strep exotoxins, so an effective immune response would kill the strep when exposed and then of course, the toxins would be excreted. But, I thought the normal ranges for those titers were adjusted to allow for normal exposure response vs. infection response. I would think there is just something wrong w/ an immune system that doesn't produce antibodies to a known infectious agent.

Okay, I'm just going to give you my opinion- just keep in mind that I am completely cynical about autism. ("diagnosis," & "treatment,") I think "stims" are what you call tics or compulsions of a sensory nature if the person doing them has been labeled autistic. I've been asking this question for years, and nobody, including professionals has been able to give me an answer that makes sense. When my daughter was younger, there was (maybe still is) a treatment philosophy that recommended not allowing autistic kids to engage in stims. Interfering with "stims" creates a lot of anxiety- just like not allowing compulsions or tics.

are you talking alopecia(falling out) or trichatela...(pulling hair out) ds pulled/s his hair..he said it felt like something was under there, crawling or biting... then then next go round of it...he said if he didn't pull it out..it felt like it was just going to fall out??? Well, alopecia articles said that there was frequently a feeling of pain or tingling in the affected areas, which made me wonder if those feelings could cause the pulling (or in our case, banging). That does sound like what happened w/ your son. It just struck me yesterday, that what we thought was the cause(banging) of hair loss may have really been an effect of the same thing that caused the hair loss. Did I say that right? I mean the banging and the hair loss have the same cause (possibly)- the autoimmune reaction.

Hmm, usually the "normal" value is a range. But if those () values are the lowest # in the normal range- you are just a little low, but not low enough to constitute something that would demand treatment.

My daughter has patches of hair loss- right now on the back of her head, but has also had them in front. I'd always considered it to be as a result of banging her head, but tonight, for some reason, I was inspired to look it up. One thing I found out is that frequently, in alopecia areata (autoimmune-type) there is pain or tingling in the area of hair loss. I wonder if that could be what triggers the banging episodes...chicken or egg scenario, I guess. Anyway, I was stunned to discover that alopecia areata is more prevalent in those who are strep carriers. http://www.elsevier.es/watermark/ctl_servlet?_f=10&pident_articulo=13151283&pident_usuario=0&pcontactid=&pident_revista=103&ty=15&accion=L&origen=elsevier&web=www.elsevier.es&lan=en&fichero=103v101n05a13151283pdf001_2.pdf

The chronic strep, without typical symptoms, without elevated titers, only behavioral manifestations, is exactly how my daughter was for years. Several specialists said it was only "carriage". And you know what? Maybe it was carriage- but definitely not benign. I am blessed w/ a pediatrician who respected the input of those specialists, but acted on the fact that the behavioral symptoms responded to abx. If you let us know what area you live in, somebody can probably help you find a doctor nearby who will help, and if you can get to one of the PANDAS specialists. And it might be a good idea to get the Cunningham test done and share that with your physician.

I go with the dosage recommendation on the bottle.

Congratulations! You have an inspirational story...thanks for including the need for the whole family to heal.

Have you tried valerian root or ibuprofen? It just seems like you need something to tide you over... Hang in there!

Well, yeah, I should add that the Cunningham test is what finally got the pediatrician to go to bat for us. He already thought PANDAS, but only had the NIMH info to go on as far as treatment. He was willing to do proph. abx for us- but didn't know what else to do. He read the studies, contacted Dr.s C & L, then took up our case to the immunologist. That rheumy was (and still is) a lost cause. Before you spend the $$, you might want to test the water w/ the neuro- bring him the Cunningham literature and the mouse model papers- maybe with some "real scientific literature" on the condition, he'd be familiar enough to at least not dismiss PANDAS out of hand.

I wonder if it would help if you give the neurologist a copy of the study that the test is based on? If he gives that paper no credence, he probably won't care what the results are. My local pediatric rheumatologist had the study, my daughters results, called Dr.s Cunningham and Latimer...and decided he couldn't treat experimentally. He sent us to Dr.L who said she could not base treatment on the CamKII activity (very high at 242%) because they weren't certain yet what that means, but the fact that she had elevated antiD2 was something she could use. So, I think it really depends on how willing the neuro is to use and interpret those test results. Even if he is intrigued by the study results- the study has no recommended treatments.

I do think apraxia can be related to PANDAS, just like the fine motor skills are for handwriting. Apraxia is a motor problem and PANDAS symptoms include movement dysregulation.

It was from 2005. I looked up the article on Newsweek's website. None of these people are making the connection between infections and anorexia. Wonder if that's changed?

My daughter does not have reactions to dyes or foodstuff, but benedril causes raging. I think that's because its anticholinergic, so it ramps up the fight or flight.

I've been accused of MBP by doctors- well not formally accused- but its been talked about between specialists and our pediatrician. But, for IEP's it doesn't really matter what the dx's are- they should be based completely on the needs of the student, regardless of the dx. I'd go to mediation. Its completely unprofessional of any school personelle to "go off on you." Get documentation of your child's needs and get services/accommodations to meet those needs. You might procure the services of an advocate, who knows the ins and outs of SPED and the IEP process to help you get what you need.

It sounds to me like there is some underlying infection that is not being eradicated. I don't think the cunningham test can tell you what that infection might be. Lyme kids seen to be testing w/ high CamKII levels as well. It would be interesting to see the antineuronal antibody results- that might at least indicate if it is autoimmune or not. In your shoes, I think I'd do the testing for lyme and co-infections, simply because I think lyme treatment would clear up any other infections that could be present... My child has been getting PANDAS treatment for about 10 months now. She's shown improvement, but the one treatment that seems to really turn things around is not routinely used for PANDAS. So her response to that treatment indicates that we are probably dealing with some kind of intracellular microbe as well.

Body trauma often does cause inflammation...which can increase symptoms.

We went through many abx before experiencing zithromagic. Augmentin does seen to work for us, but makes her yeast really flare. Hope Augmentin is your magic bullet.

Yes, my 16yo still has apraxia of speech. When she was younger we saw some good progress w/ speech therapy- but it all went away w/ untreated PANDAS flares.

Does he grind his teeth at night? Don't remember your son's age, but could there be teeth growing in?

Well, my search wasn't completely fruitless, I found this tidbit on drugs.com http://www.drugs.com/prednisone.html So, I guess those of us w/ yeasty kids need to be careful. It didn't say what could happen if you take it w/ a fungal infection. Anybody know?

There is quite a bit of info on cortisol (=prednisone) increasing dopamine. Here are 2 of my bookmarked links http://www.ehow.com/facts_5798168_cortisol_-dopamine-learning.html http://www.jneurosci.org/cgi/content/short/24/11/2825 Thank you! I've been searching around for prednisone and dopamine...found nothing.

Oh, yes. This is a symptom that shows up when we are in the worst of flares.

sorry but not all neurologist's are "TS specialists" Steroids are dopaminergic Dopamine increases tics in TS I don't consider our family's personal experience with steroids (prednisone) and that of others who have noted the same with it spiking tics to be "no evidence" I have not heard that steroids are dopaminergic, and I can't locate any info on this. Do you know where I can find info? Thanks.