rhyanen

Hi, I'm in NM and trying to find a doctor familiar and willing to treat PANDAS. Still in the diagnostic phase for my son. Did you have any luck finding someone here? Please pm me. Thanks! Amy

I think I'm going to try motrin and see if there is any improvement. What is the recommended dosage? Btw, we're in NM, so not much here in the way of other DAN doctors or integrative medicine. Seems NM is a little delayed in the way of medicine.

So it looks like we're at a dead end. No hope or diagnosis in sight. Son is still having tics, sexually inappropriate behavior, and ocd. DAN! doctor won't treat because it doesn't jump off the page as pandas. Anti-dnase positive, ASO negative. Don't know what to do or where to go from here :-( Cannot get into a neurologist soon enough...the waiting list is really long.

He was diagnosed with celiac disease at 22 months, so we put him on the gf diet for 6-7 years. He did well, but we couldn't afford it anymore so we slowly allowed him to eat gluten again. Surprisingly, he didn't have any symptoms. Vomiting, diarrhea, lethargy gone. He's been eating it regularly for 3 years now. But this is the first time his celiac panel has been normal despite eating gluten. I'm thoroughly confused! Since his DNAse B titers were high, what is the common protocol? Antibiotics, IVIG? Would symptoms plus positive titer be enough to confirm a diagnosis of Pandas and start treatment?

UPDATE: We had labs done by our DAN! doctor, and after waiting a month, they are finally in. He tested positive for anti-dNase B but negative for ASO. We didn't have a throat culture done. He also has low Vitamin D. And for the first time ever, his celiac panel(anti-gliadin IgG were negative...weird). The doctor says that the labs don't confirm PANDAS nor does it exclude PANDAS. Any comments would be greatly appreciated. Waiting to hear from his doctor on how to proceed. Thanks! Amy

Hi, I'm fairly new here and I posted about a month ago about my autistic 11 yo son who is displaying symptoms of PANDAS. His ocd and tic symptoms are of a sexual nature. We had labs done by our DAN! doctor, and after waiting a month, they are finally in. He tested positive for anti-dNase B but negative for ASO. We didn't have a throat culture done. He also has low Vitamin D. And for the first time ever, his celiac panel(anti-gliadin IgG were negative...weird). The doctor says that the labs don't confirm PANDAS nor does it exclude PANDAS. Any comments would be greatly appreciated. Waiting to hear from his doctor on how to proceed. Thanks! Amy

Update: still waiting on the labs. It has been over 3 weeks now. Jeez, does it usually take that long?

I was wondering if anyone has noticed headaches with their child? My son always seems to get headaches in the back of the head. Is that common with PANDAS? He's been mentioning some vision changes as well. Said that when he closed his left eye, his vision in his right eye seemed like everything was tinted orange. This was a couple days ago and the symptom is gone now. My husband has a family history of migraines, so we've just assumed it was something along those lines.

Thank you everyone. It's nice to feel validated and not feel like my son is the only one on the planet having these issues. His obsessions are getting worse. He's been very graphic lately with violent, bloody thoughts. I know he's not violent in action, but he says things like he loves the cat so much that he'll squeeze him till his head pops off and blood spurts out, among other things lewd and disgusting. Still haven't received the labs yet. Our DAN! dr. is gone for the holidays, so I am assuming the labs have been interpreted and are waiting for him. In the meantime I am desperate to try anything that may help until I can talk to his doc. Any suggestions?

Thank you both for the replies. I am hoping the bloodwork will steer us in the right direction. Even if it comes back negative, I have confidence that our DAN dr. can help us out. I will keep you posted. Happy holidays!.

Hi, I am new here. I have an 11 year old son who was diagnosed with autism at age 3. He is considered high functioning and has been doing well academically and socially up until the past 6-8 months. We started noticing a regression and tic like behaviors. Many are vocal tics which have become increasingly more frequent and of a very lewd, sexual nature. He will blurt out things that are absolutely disgusting all the while making sexual gestures. Along with it is alot of hyperactivity. He also has minor tics like throat clearing, grunting, blinking the eyes. We are seeing a DAN doctor who is testing him for anti strep antibodies and also for a mitochondrial disorder and pyroluria. We are still awaiting the labs. So my questions are, how common is PANDAS in autistic children, and secomd, how common is PANDAS with sexual type tics of coprolalia and copropraxia? It is getting very disruptive and difficult to be around my son anymore. We love him like crazy, but it's taking a toll on our family. Amy