Interesing paper

[EAMom]

She's doing great! Anxiety is down, school work is getting easier/better (no more homework stress meltdowns!), cheerful, no OCD, we still hear a few tics (occasionally) which aren't a problem, just something to notice.

 

btw Have you checked the rest of your family to see if anyone is a strep carrier?

[thereishope]

Every round has been different with us too. OCD took a very long time for my son to overcome. Has Dr K ever mentioned to anyone if there can residual OCD, even post IVIG, from it being ingrained in them for so long? Even though it surfaced due to PANDAS, it is no longer consider PANDAS behavior? Months after everything else got better, OCD stuck around with my son. Luckily, we have finally overcome it. What has the psychologists said to you? Have you tried CBT or other therapies?

 

 

 

 

 

Our son had an echo done because he was originally diagnosed with rheumatic fever with Sydenham's chorea. It was normal... thank goodness. From what I've heard anecdotally, seems like the kids who tend more toward the SC / PANDAS symptoms generally don't exhibit heart damage.

 

 

How is your son doing??

 

Don't want to hijack the thread, so I'll (try to) keep it brief. Haven't been posting much lately: my wife and I are emotionally drained (which I know everyone here can appreciate).

 

It's been 3 months since our 2nd round of IVIG in Chicago with Dr. K, 2 months since the 3rd round. Dr. K really expected those 2 rounds, 28 days apart, to do the trick. Just haven't "seen the magic" this time vs. 1st round last October, when we saw about 70% improvement in the first month after IVIG. Slow, subtle improvement this time - maybe 30%.

 

Fearing that his age (13) and the severity of that last exacerbation (on 3/29/09 - worst yet by far) are making recovery pretty tough. And we're scared. Even after that 1st round of IVIG - and even on prophylactic augmentin - he still had a major relapse from what appeared to be an upper respiratory infection. With 2 younger boys in school / daycare, don't know how we'll keep infection away from him this winter.

 

Things would be much less stressful if we had a local doc to help. Our DAN doc who originally diagnosed our son passed away last October. Been searching (fruitlessly) for a replacement for almost a year. Three pediatricians who said they were accepting new patients declined to take him because "they weren't equipped to deal with something like that." Endless series of ped neuros, infectious disease docs, and child psychs who don't even bother to order any tests: after months of waiting to see them, they just tell us it's not PANDAS (although none of them agree on what it is) and we need to see somebody else. Finally have a line on another DAN doc in our area whom we hope will be willing to help... guess we'll see.

 

Have been waiting to post until I had better news. This past week has been better, so maybe we're getting there. We just have a long, LONG way to go to approach anything like normality!

 

I love the positive updates and success stories I read on here. Gives us hope. I pray to be able to share good news someday soon!!!