peglem

Thanks, but, its okay (and probably to your advantage) for your mom to feel good about it, too. She's paying the bills and helping you get to the appointments, so go ahead and share the credit with her! And honestly, parenting a PANDAS kid isn't the easiest thing in the world, so kuddos to your mom too! A long, long time ago, I was the kind of parent who just relied on doctors to figure things out and tell me what to do... so, cut that woman some slack!

"officially" sick is when the immune response takes off- I don't know how long it takes w/ strep for the immune system kicks in, but I think there's a good chance the friend was contagious on Saturday. Anyway to get some abx and or prednisone? You could try ibuprofen to help with inflammation in the mean time. Sorry this is happening. Praying that this is a blip and not the start of something bigger. Thanks so much. We have a prescription of zithromax available at the pharmacy. Is penicillin better? There is never an ending to PANDAS is there? Does anyone know where I could find documentation on flu mist and encephalitis? My child does much better on zith. It has anti-inflammatory properties, too.

Thanks for celebrating with me, everyone!

Well, I have 4, the oldest is a boy, then 2 girls, then my PANDAS girl. I have to go with not normal. Once or twice a month, maybe, but as often as your son is doing it- not even my girls did that. Watch for eating, or compulsive exercising... It sounds though, like your gut is telling you this is something to be concerned about, and you're trying not to overreact because of your PANDAS worries. I know I've second guessed myself a lot too.

"officially" sick is when the immune response takes off- I don't know how long it takes w/ strep for the immune system kicks in, but I think there's a good chance the friend was contagious on Saturday. Anyway to get some abx and or prednisone? You could try ibuprofen to help with inflammation in the mean time. Sorry this is happening. Praying that this is a blip and not the start of something bigger.

I'm guessing the "negative" tests was for strep titers. It is very common for PANDAS kids to have low ASO and antiDnase titers. The fact that she has responded well to abx and prednisone seems to indicate that something infectious is at the root of your daughter's symptoms.

Yes, anything that provokes an immune response can cause a flare.

Don't know if you're familiar with the Murphy paper on SSRIs in PANDAS, but you might find it helpful: http://mbldownloads.com/0806PP_Murphy.pdf

Its always so great to hear progress! Please keep us updated- I don't have the guts to drop abx (yet), but sure is nice to hear that working for you!

What a nice sign of healing! PANDAS stole the majority of Allie's childhood. Since she has been getting better, I've been determined to let her do some of the things she's missed, even though she is already 16yo. So tonight, she dressed up as "Dr. Frankenstein, pediatric brain surgeon" and we walked around the neighborhood for an hour trick or treating. This is her first time and it was so fun!!!

What can we do to help?

Don't know about normal, but pretty awesome!! Was that w/ or w/o treatment? How long had she been "out of it"?

I know someone posted seniors in rest homes and urinary tract infections causing mental changes . I would think dental infections could cause problems too... Yeah, the UTI one is what I was thinking of... but stands to reason that urti could do the same- its closer to the CNS!

Wasn't there an article posted here not long ago about post infectious encephalitis in the elderly being a fairly common phenomena?

I'm not even sure that info is sent to colleges. When I was teaching in elementary school, SPED files were kept separately from the student's regular files and if a student transferred schools, the SPED file could not legally be sent to the new school unless the parent signed a request for them to do so. But, that is a question I'm sure your counselor can answer.

Thanks for sharing! My daughter just started her 3rd course of rifampin 3 days ago(not consecutive courses). We are once again seeing great improvement. The 1st 2 courses of treatment she had a tough time during the treatment but great improvement afterwards- this time the improvement showed on the second day of treatment and so far, none of the difficulties we saw during treatment in the past. We have not tested for lyme or co-infections. Her doc initially rx'd this treatment thinking it would get rid of intracellular strep and give her a better chance of success w/ IVIG. The results were amazing, but only lasted about 3 months (we'd not gotten IVIG b4 she started going downhill again.) Now, he's using it because it works, and he figures it must be treating some underlying infection.

Anyone? Please?

Kaki, I apologize for taking your thread in another direction. I understand your questioning the connection between autism (symptoms) and PANDAS. Obviously, I do believe there is a connection.

I don't think the specific dx (which in any case is none of their business)is important, as long as it is a chronic medical condition. The school has a list of conditions that automatically qualifies for services and accomodations. The rest can be classified as OHI (other health impaired). Accommodations and services are based strictly on student need.

Oh, just call it PANDAS! Or, autistic symptoms works for me too. Heck, its your kid, call it whatever you want! My point was really that all "autism dx's" are just neurological symptoms, and the label is not diagnostic. I tried to avoid my big rant about the implications (medically and educationally) of autism as a "diagnostic" label. I don't want to get into what is politically correct (I don't even begin to know)- I just think it is a bad idea (based on my experience) to refer to autism as a diagnosis. I really think this is true of most psychiatric conditions. It angers me when patients are sent to psychiatrists simply because other physicians are not able to figure out what's really wrong with the patient. I think the only way to turn this practice around is for people to change the way they think about and talk about autism and other labels for neurological symptoms.

Beyond highschool, in college as well, you'll need accommodations to allow for "chronic illness." Ask your counselor @ a 504 plan.

I keep hearing people talk about "overlapping" symptoms. People, autism is all symptoms...it is defined only by symptoms and nothing else. If you have the symptoms to meet the "diagnostic" criteria- you have autism. Maybe those symptoms (the autism) are caused by autoimmunity, maybe by toxins, maybe by brain damage, etc. I feel very strongly that people, especially physicians, need to stop looking at autism as a true dx, and start looking for what is causing the symptoms they call autism.

I just don't know how anybody can know if they "don't have lyme". The tests are notorious for false negatives and the symptoms are so broad and general... I see how people can know if they do have lyme. That being said, we've never tested, so I guess my answer is I don't know. (see? right on topic.

Vicki, Yes, more than one doctor weighed in on the spitting, especially after the scoping (Mar 09) showed the arytenoid swelling. The swelling went down after a month of prednisone and topical steroid. The consensus seemed to point to an allergic reaction, but that was never pinned down and now it is back 2 yrs later. So, unless it is an outdoor allergy that skipped one season (spitting started Fall 08), I don't see it being an allergy. My personal theory (not a doc) since nothing else has panned out, is that it could be spitting (and maybe swelling again) related to his recent exacerbation. In 08/09, we looked at and treated for GERD, allergies, inflammation, and a few other things. Only steroids help get rid of the spitting whech says the swelling went down. So, I am wondering if a PANDAS type exacerbation could trigger an immune response in his throat and cause the spitting symptoms. It is possible that the swelling was not related to the spitting, but it is also possible that the swelling and spitting are related. It makes me wonder if all the spitting reported with PANDAS is simply ocd or if there is more to it. As far as the bicep rash, it is chicken skin looking rash and nothing has helped it. It is not red or swollen, just a light bumpy rash. I will make sure to point it out to Dr L. As far as thew supps and foods for that matter, we scrubbed every ingredient over several months and nothing came up. If it were food though, I would think he would have had constant spitting over the last two years and it was gone from Summer 2009 until just now. That is what makes me think of PANDAS. The spitting in the Fall of 08 was tied to an exacerbation and the spitting just restarted with an exacerbation now. The question that I am really thinking hard about is can PANDAS cause an immune response in one particular are of the body like the throat which can then cause symptoms like spitting. This may seem rare, but I doubt there are very many PANDAS folsk that just happen to have a scoping during an exacerbation to see what may be swollen. The other interesting point is that our son had been on Colazal, anti-inflammatory, for years from his first scoping in 03 (LNH) and the 09 scoping showed much improvement in all areas, but the doctor was very surprised by the arytenoid swelling. It's a real puzzle. John L John L I think it is possible that tics can be triggered by a local irritant, like inflammation.