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Posted (edited)

I started NAC with my son and after a few days we saw marked improvement. Not only did his OCD improve but he had started repeating his words and that stopped too. His emotional mess of a disposition since this all began went back to his normal. He was/is taking 600 mg. twice a day. He's 8 and 40 pounds.

 

That lasted a bit over a week. Then he got a cold and we went back to the severe OCD/repeating words/extreme lack of emotional control. That's been a little under two weeks. Never mind: it's still here..I got excited because we finally had a night of sleep and a decent morning OCD-wise. I still see the OCD now.

 

Would a person normally see such variability with viruses in PITANDS/PANDAS or would that be more consistent with regular OCD perhaps?

 

His labs weren't at all a slam dunk for PITANDS/PANDAS. We're going to start an antibiotic in case my son is a "low strep responder" per Dr.T because of some lowish IgG numbers. If that doesn't help in 10 days we'll do an anti-viral because his labs were positive for hand/foot/mouth...I can't remember the name of the virus. But this might not be PANDAS/PITANDS for him.

 

I just can't understand the huge swing in symptoms. That's how it all began too. Normal kid, OCD kid for a week or so, extremely severe OCD/repeating his words/emotional mess suddenly. I do believe that initial onset may have been with a viral infection...I know he had a virus when the worsening initially happened. But it wasn't hand/foot/mouth blisters and he had the flu this winter with no OCD or problems at all. I don't know what to think.

Edited by Rachelle
Posted

"episondic course" is a hallmark of pandas/Pitand. Usually lasts longer than a week though - for many of us we would see a quick ramp up starting with a cold (sometimes you will see a couple of the symptoms before the cold - this happens because their immune system is trying to fight the cold, and may be holding it off - but is sending out the "bad antibodies" along with the appropriate ones) then for 1-2 weeks things get worse, then 1-2 weeks really bad - and then 1-2 weeks back to "baseline" (or a new "baseline that isn't as good as the last baseline) in which case the "baseline" is creeping up. When we saw baseline creeping up, and realized that not only was he eacerbating for 3-6 weeks with each illness, but he was not going back to normal - that's when we decided to get IVIG.

 

For us - when DS would have insomnia or wet his bed - it meant that within a day or two he would get a cold, and head down hill from there (even if cold lasted only a few days). This happened about 90% of the time. Dental "flairs" also occur - when there are teeth falling out or molars coming in. There is alot of bacteria in your mouth, and the immune system seens to go on alert when this happens. For us a dental flair was usually less than a couple weeks - usually less than a week even.

 

Antibitoics may shorten the course of exacerbation and maybe the severity, but for most of us is not a "cure" This pattern went on for us even though DS was on high does Azithromycin. The Azith shortened and lessened the exacerbations, but didn't stop them.

 

Which labs were positive for hand foot mouth (cosackies) Was his IgM positive?? or only the IgG number? I'm curious...we just had my son tested. 80% or more of population has had it and shouldhave a posstiive IgG. (wondering if Dr T sees a really high possive IgG as possible active infection, or only if IgM is positive?) do you mind sharing your son's test results?

Posted (edited)

Well, we're seeing a lot of OCD now. I guess it was just a happy morning blip. Ugh.

 

I am happy to share the results. Thank you for replying.

 

Right before my son came down with these OCD symptoms I believe he had a virus. He had a rash that came at the time things got really bad OCD wise but after the initial OCD onset. The pediatrician said it was a viral rash. His twin had a low grade fever, fatigue, and joint pain at the same time OCD kid presented with the rash. About three weeks after those symptoms the twin came down with the same rash. So I'm assuming those initial symptoms were the virus and then the rash follows a few weeks later. That would mean my son possibly coincided the OCD onset with that virus. He definitely got worse during the virus. In that case it did ramp up over a period of weeks. It did not go completely away though.

 

Dr. T did not order an IgM of coxsackie--only the IgG. All the IgG's were high (A7, A9,A16, A24) and Dr. T specifically said past infection. So I didn't know enough to ask but it seems, given he only tested IgG and he mentioned trying anti-virals, that he believes past infection could trigger? I think you probably know more than I do on that! I didn't see any things about that virus particularly in searching here or elsewhere.

Edited by Rachelle

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