Tell me about the strep/PANDAS test

[guy123]

I'm going to the neuro tomorrow and I'm going to mention PANDAS. I don't really have any of the symptoms, but my tics did begin following a bout with mono and a horrible sore throat. I've never had strep, however. I've been tested (throat culture) a lot, but it's never come back positive.

 

But in hindsight, I've always been a little OCD ever since I was a child... but it got much worse following mono.

[guy123]

I'm going to the neuro tomorrow and I'm going to mention PANDAS. I don't really have any of the symptoms, but my tics did begin following a bout with mono and a horrible sore throat. I've never had strep, however. I've been tested (throat culture) a lot, but it's never come back positive.

 

But in hindsight, I've always been a little OCD ever since I was a child... but it got much worse following mono.

 

50 views and no one knows what the test is? I thought half the people here had had it.

 

Anyway, I met with the neuro today for like an hour and he was the coolest doctor I've ever seen. He went over my big list of drug research with me and said it was very thorough. We basically said I'd stay on Clonidine for a while longer and then maybe try Topamax if I want. He said he had had good results with low doses of some neuroleptic (risperdol?) but I said I didn't want to go there. He was super cool about only giving me drugs that I was comfortable taking. He asked me a few times if I was sure no one in my family had Tourettes, and I said yes. He also said it was extremely weird that my symptoms began at 17.

 

I told him that Lorazepam had no effect on my tics, so he said that Klonipin (also a benzodiazepine) probably wouldn't, either. We talked about GABA and I told him that I had used Phenibut recreationally, and while it was awesome, it had no effect on my tics.

 

I asked him about PANDAS and told him how my tics and an extreme worsening of my OCD happened after I had mono (which was accompanied by a horrible sore throat). He said he had never heard of it but would do some research and get back to me.

 

Alright my questions for you guys:

 

1. How is PANDAS tested for?

 

2. I think I remember reading somewhere that PANDAS has to be treated early on (ie. not 10 years later). Is this the case? Since I've had these symptoms for 10 years, if it was PANDAS would it be untreatable in my case?

 

3. What antibiotics worked for you (or your child)? Pleae give the name, dose, duration, and weight of the child.

 

4. What antibiotics didn't work for you?

 

5. Does anyone have a good article on PANDAS I could email to my doctor?

 

Thanks.

[Chemar]

Guy

50 views can incorporate forum guests (ie not registered members) so not everyone who reads has ability to post

 

also, you posted over a weekend when the forum is usually quieter as most are busy with family stuff etc

 

if you do a forum search (top of page) on PANDAS you will most likely find all the info you need. There have also been a lot of recent threads with the info so just searching the first few pages should bring results. also look at the "essential threads" sticky at the top of the board

 

there is no one definitive "test for PANDAS" but rather a series of diagnostic criteria

 

I am not a PANDAS parent so am not up to date on all the info

 

based on your worsening with Mono, I would suggest also looking at PITANDS, not just PANDAS

[guy123]

Guy

50 views can incorporate forum guests (ie not registered members) so not everyone who reads has ability to post

 

also, you posted over a weekend when the forum is usually quieter as most are busy with family stuff etc

 

if you do a forum search on PANDAS you will find the info you need. There have also been a lot of recent threads with the info. also look at the "essential threads" sticky at the top of the board

 

there is no one definitive "test for PANDAS" but rather a series of diagnostic criteria

 

I am not a PANDAS parent so am not up to date on all the info

 

based on your worsening with Mono, I would suggest also looking at PITANDS, not just PANDAS

 

PITANDS? Never heard of that before. Off to do some research!!

 

Thanks!

[ratlenhum]

Our DAN dr (Defeat Autism Now) had us run the PANDAS profile from neuroscience labs www.neurorelief.com

 

We ran those in November, treated for a few month with Bicillin injections, then tested again. At that time they also ran his ASO and Anti DNase B titers. The PANDAS profile tests for IgG and IgM antibodies to 6 different things, several of them are the anti brain antibodies known to be triggered in cases of PANDAS