Severe Thrashing - episodic

[browneyesmom]

When my daughter was in the midst of her most severe PANDAS exacerbation last winter, she would have episodes of rage lasting up to about 3 hours, followed by severe thrashing of extremities for up to about 30 minutes, followed by limp... just nothing... laid there motionless (one time, with tears running down her face) for up to 30 minutes.

 

Thank the Lord, she no longer has these horrifically intense episodes following months of IVIG and we did finally eradicate the strep after fighting it for 15 months (except she just tested positive again yesterday after being strep free for 3 months), so I'm gearing up for battle to help her again. although we've still not seen anything at this level of intensity this time.

 

What I'm wondering about is that thrashing piece. I do realize that she has a severe case of PANDAS, having all the symptoms I've ever seen reported, so perhaps this is more rare, but has anyone else observed a similar thrashing in their PANDAS child?

 

If so, have any of your docs commented on this?

[Worried_Dad]

What I'm wondering about is that thrashing piece. I do realize that she has a severe case of PANDAS, having all the symptoms I've ever seen reported, so perhaps this is more rare, but has anyone else observed a similar thrashing in their PANDAS child?

 

If so, have any of your docs commented on this?

 

Our ds's original symptoms began with joint pain, muscle weakness, difficulty walking, and (most scary): rapid, jerky, uncontrolled movements of his arms and legs. These were at various times called by different docs "choreiform movements, adventitious movements, seizure-like episodes, tics," and of course (grrrr) "psychogenic movements." The seizure-like episodes put our ds in the ER 5 times in one month, when his violent thrashing literally rattled the exam tables for 60-90 minutes; he would be sweating profusely and begging for relief. Terrified us.

 

At one point, this led to a diagnosis of Sydenham's chorea, eventually changed to PANDAS. We were told by docs that it really wasn't SC because in SC the movements are pretty much continuous, not episodic like our son's.

 

Other parents have reported similar symptoms for their PANDAS kids, so I think that (unfortunately) the basal ganglia inflammation can cause this as it does in SC. For our ds, the movements gradually subsided / became more "classic tic-like" over time, and OCD became far more crippling than the tics in later exacerbations.

 

Hope your dd finds relief very soon!

[browneyesmom]

Thanks for your input, WD... that is what I was wondering.... what did the docs call that?

 

In my dd's case, the link of communication was broken during that time. She was unable to communicate with us and did not seem aware of us talking to her. She does not, fortunately, remember. It was indeed terrifying.

 

She has been improving, but as you know, it is a slow process. Unfortunately, she just tested positive for strep throat again yesterday after being strep free for 3 months after a 15 month fight. We live in an area where docs are having trouble eradicating it. Let's hope this time we can stop it faster.

 

I haven't been keeping up here but remember you from her first severe exacerbation three winters ago. I hope your son is doing well now.

[PhillyPA]

Has your daughter had IV steroids yet? Ask your doctor about getting them. In my opinion, at least in severe cases, iv steroids are key. Within one day of getting iv steroids - your daughter should be happy, relaxed and a new person! I do not understand why these are not used more. They should be the first line of attack - even before ivig or at the very least in conjuction to ivig.

[PowPow]

My older daughter had similar thrashing, that also led to a chorea diagnosis- though it was not EXACTLY like SC. It has decreased dramatically- as her rages have calmed. She is post IVIG, post pex and post IV steroids. Who knows what worked and when it stopped- it just kind of stopped. It had been a major, major issue for months. She would cry and ask when it would stop most of the time- but some times, she would see almost "out of it". I shudder to think of those days. I think I had protectively put them far back in my memory.

I agree with PhillyPA-- I think IV steroids are wonderful!

[browneyesmom]

Did any docs ever call it ballism for your kids who have had this?

 

I think either I wasn't clear or some of you missed it... she has not had these in months. They subsided as the rages did with IVIG and time last winter. I'm just reflecting back on what that was in case I ever see it again.

[Worried_Dad]

Did any docs ever call it ballism for your kids who have had this?

 

Yep, that was another of the terms applied to our son's movements.

[PowPow]

I actually looked up hemiballism & videos last night (ironically, before reading your question about it). I would day it exactly described my daughter's movements. Hers also subsided as the rages did. I will ask the doctor today about it and get her take on it.

[browneyesmom]

I just looked for some videos on ballism, ballismus, ballism chorea, etc... there were only one or two that looked a little like what she had last winter. Hers was much more extreme, intense and lasted for 20-30 minutes following rages that were up to three hours long. Then, she'd just go limp. Scary, just to remember it.

 

Even though these were observed in two emergency rooms and an inpatient Children's hospital room more than once, no one ever mentioned this term to me, nor have I seen it in her notes. During that hospitalization, a Pediatric Neuro was her attending... not a PANDAS specialist, but I'm just really surprised as severe as hers was, that I only recently heard the term in my own searching.

 

Thanks for the responses & input. I am so thankful for how much progress she has made since that time. I honestly did not know if we'd be able to get her back from that point. She does not remember these episodes; I hope she never does.