Speaking of PANDAS in second child....

[VickyLH]

We're fairly certain DS11 has PANDAS and we're finally seeing an Immunologist next Monday (he has ALL the major symptoms, severe anxiety, OCD, tics, sudden onset of bed wetting, difficulty with bedtime, etc). Our entire family (myself, husband and all 3 boys) were recently diagnosed with strep throat and now I'm beginning to wonder if my second oldest son is/was showing signs of PANDAS (although they are different from my oldest). Our troubles started in November/December with both kids. My oldest had severe difficulties with the above mentioned symptoms and at the time the difficulties my second son were exhibiting were somewhat overlooked, but in retrospect I'm wondering if they too were signs of PANDAS. Starting last November DS9 started having rage issues which were very out of character. He would be set off at the littlest thing and started having a difficult time interacting with his friends (or anyone for that matter). When I spoke with him after a rage episode he told me that he felt like something that had just burst uncontrollably into flames when he raged. He said that in the moment of the rage, he didn't think about anyone or anything other than his extreme anger. To settle down, he would have to sit alone in his room for up to an hour or more. Around this same time he began biting his nails, sucking on his shirts and at times was literally bouncing off the walls and just couldn't settle down. The strange thing is that once he started abx for his confirmed Strep infection, he turned back into his old self. However, today is the first full day he has been off abx (had last dose yesterday at noon) and his anger issues and his excitability seem to be rearing their heads again. Do you think I should be taking him to the doctor too or is this perhaps a coincidence? He isn't showing signs of OCD and the shirt sucking has stopped - although I did notice yesterday he was biting his nails again. Should I wait a couple of weeks to see what transpires? I feel so incredibly paranoid these days and that our family is under attack! I'm hoping others will chime in to share whether any of their PANDAS kids presented in a similar way or not.

 

One more thing, I've also noticed others mention carb/sugar cravings. This son in particular craved a ton of sugar and carbs November/December, however I figured it was mainly because we had a new batch of Halloween candy in stock. Strangely enough, since starting abx, he hasn't asked for candy at all and he even chose to eat some veggies for a change! I'm not sure if that means anything, just putting it out there.

 

Thanks again for all of your help and support as we begin our PANDAS battle - and I'm hoping it's not x2!!

 

-Vicky

 

ugh - sorry - I hate typos but couldn't fix the typo in the "title" - I do know how to spell concerned

Edited January 13, 2011 by VickyLH

[LNN]

My two kids, since the day they were born, have refused to do anything in similar ways, lest someone realize they might be related. One had very "in your face" changes and one has had low-level, things that make you go "hmmm, but maybe I'm just being paranoid" kinds of things.

 

But it's now pretty certain they both have the same cause. We're more heading down the lyme trail, but yes, siblings do seem to have a higher risk of contracting illness-triggered neuropsych disorders and it's not uncommon for the kids to force you to learn a whole new set of coping tools for each one of them.

 

You're probably not being paranoid. But if you were - so what? What's worse - looking into an illness that causes craziness or dismissing it for fear of looking crazy? Follow your instincts.

[matis_mom]

I would say the fact that he got back to normal on abxs is your biggest clue. I think EVERYONE's temper gets altered when they are sick (to a certain extent), but PANDAS is different... I saw it right away on my second one after an ear infection, she seemed to regress and was doing strange stuff. My husband did not want to believe it, so I waited a couple of months, and now we all see it clearly and she is being treated for PANDAS/Lyme/Bartonella. Just recently they both got worse because of a stomach virus, and we were able to stop the downward spiral with a Bicillin shot. Amazing.

 

I would wait "a bit" and see how he does. Keep a journal. Also, make sure you and your husband and anyone else in the family gets checked, change toothbrushes, etc, etc.

 

The good thing is that the sooner you get on top of it, the better chance of recovery. And I think it helps somewhat that you already know what you are dealing with and there is less of a shock factor. I would say if your child is telling you something inside changed (it seems like he cannot help himself), then it's better to be proactive.