Hrosenkrantz

I don't have a suggestion, but my son, diagnosed with PANDAS and possible lymes, does the whispering a lot. A neurologist told us recently that speech and language is a neurological function, and inflammation can impact the whispering. I do know that a doctor prescribed adhd meds at one point to address the whispering (?), and it led him to talk manically

Melanie -- tried to pm you but your inbox is full

Mayzoo, thanks for posting. My PANDAS son has been dealing with language issues for years (diagnosed with a language disorder 2.5 years before the pandas dx), but his langauge skills really plummeted when pandas hit. As things have improved, we've often gotten comments about his whispering -- ``why does he do that'' sort of thng -- and one of his doctors has even said what he is dealing with looks a lot like selective mutism...

Who is dr z in Virginia? My son tested positive for Lyme; I live in DC and wld be interested in a nearby llmd

MDmom -- i haad a question for you but your in box is full, fyi

<<I can't imagine listing "professional nit-picker" as a skill! But thank goodness they're out there for those in need!>> I'd upload the licelady's brochure to this message if I could -- it has a picture of her with her hair wrapped in a turbon...

This an expensive last resort, but there is a professional in our area called the Lice Lady who rids you and your family of lice in one sitting and then sends you off with a lice fighting conditioner. There may be one in your area i you become desperate and cant get rid of the lice. To be sure, lice is a completely do-it-yourself thing to eradicate, but if it gets really hard to get rid of the nits, thats a solution that I had to use once. It's not like I haven't money on other wasteful things, such as IVIG (dark humor here)....

People want to help but they have no idea how.

Well, the doctor who prescribed the Bactrim told us to get off it. Son was doing ok on augmentin and azith, but since adding Bactrim wed evening its been pretty bad, with a long shrieking jag today and he bit his brother in the eye, which is now swollen, as he tried to comfort him...

Not seeing good stuff about bactrim. My soon is on it now, can't say we've been very happy since he went on it. Is it such a strong and aeffective antibiotic that its worth it?

bigmighty -- how would a lowdose ivig end the remission? Confused..

A mild form of verbal ticcing for my son, one we can live with, is him repeatedly going "huh, huh. huh". At their worst, its tourette's style screaming. We just filled a prescription for anti-tic medicine Tenex; my husband refers to it as the "anti-freakout medicine." We have not used it, and probably won't unless the ticcing/movements make our son unable to attend school...

I have to admit, this conversation is scaring me big time. My son has been in what id say i the worse place ever since he was diagnosed officially with pandas in march, and since this whole thing emerged more than a year ago. This horrific period has emerged starting august 1, and the response of his doctors is to put him on more abx to address the infection, including augmentin and soon to be azith... His developmental ped, who has been treating him for three years, since when all he had was a serious language delay but was a happy and sweet kid, wants to put him on clonidine or tenex to addresssing the ticcing and touretting -- says it wont get in way of abx, but is worried that he wont be able to function in school in the current state. He's already lost a year of his life to this....

I wanted to share a random act of kindness recently experienced. My son is in hte middle of a horrific flair and we were visiting relatives last week. I took him out of the house very early to a local starbucks. We walked in and it was clear we couldnt' stay -- he erupted into a blast of rage, screams and uncontrollable tics. I walked out with him to calm him down and talk to him about keeping him together. The store manager came outside with a cup of coffee for me and told me we were welcome there anytime.

PP -- thank you for that info. We will talk to our doctor obviously who we are seeing this week, but we were looking for something to address this flairup in addition to the motrin/ibuprofin and we found betablocker did disappate the rage episodes. Interesting about the motoric hyperactivity. Before our son was diagnosed with PANDAS, a doctor prescribed adderall. We tried it for a month and it made him more manic. During this week of motoric hyperactivity, i was thinking about trying the adderal again. I will stick with betablocker....

My non-PANDAS child sees an endocrinologist in Chevy Chase, Maryland for growth issues whom we like very much. His name is Dr. Ali Mhamedi, 301-466-1207. I do not know if he hans any experience with PANS/PANDAS but we like him quite a bit.

Why can't you do ibuprofen and abx at same time? Has anyone ever heard of giving kiddos betablockers to deal with the flair?

I have a flair-up question as well, and sorry to piggyback on your thread. My son has PANDAS and had IVIG aboug 5.5 weeks ago. He was doing better, then started doing badly about a week ago, though was mainly able to hold it together and be successful at summer camp. This weekend he fell apart and was the worst we had ever seen him, having to pull him out of two excursions. And today he is being sent home from summer camp. We see our neurologist for an IVIG follow up Friday afternoon so unlikely to get doctor advice before that. Other than frequent dosing of motrin, any advice to make him more functional this week?

Forget about family members, what about professionals and doctors who don't get it? I had a pyschologist tell me this week our son has his rages because " he obviously gets something from it" and we have to implement a four step behaviour management program that involves...i forgot what the four steps were, because when I tried to tell my husband, he said the only thing he wants to implement is a stronger dosage of medicine...

Thanks so much for the recommendation, Mayzoo

I'm interested in the response to your question. My son had an IVIG 3.5 weeks ago. We're seeing an exacerbation in symptoms -- which I believe is normal, but I have the concern that the procedure made things worse...

Does anyone have a good over the counter probiotic they recommened?

I'm interested in the responses to this. Our son is a week and a half post IVIG and he is behaving so naughty -- doing things like grabbing a container of milk and dumping it on the floor and laughing, behaviour that is not acceptable,

I dont know if it helps, but the doctor who first clued us in to PANDAS is in Bethesda, Dr. Karin Belsito. She is a developmental pediatrician with Pediatric Care Center in Bethesda. She suspected our child had pandas and tested and treated him for the condition for a few months, but did not feel comfortable with long term antibiotics when his symptoms waned, so she referred us to Latimer.

POwpow, I think your inbox is full....