Hands twitching

[bronxmom2]

I know this is not good, but for the last few days my son's hands have been twitching. He can't stop clenching and unclenching his fingers. He says the fingertips hurt and doing this alleviates it. If I hold his hand I can feel it twitching.

 

He has never been very ticcy... more the OCD/behavior issue side of PANDAS. At his very worst, he did this big arm swooping thing all the time which, like this, looked like muscular aches that needed alleviating.

 

He is about 2.5 weeks post IVIg (his third) and until this twitching started, he was doing amazing-- I mean this last IVIG had really really seemed to help him. He is also getting more emotional now, etc.

 

So frustrating. When will it all end?

[T_Mom]

Bronxmom--

I am so sorry--Do you think it could possibly be turning-back-of-the-pages phenomena? Did you have any of the replaying of previous symptoms (as referenced by Dr K. for after IVIG reactions) with the prior IVIG treatments?

 

I so hope this is the start-of-the-end for you all--

[Suzan]

Sounds sort of like what happens to my dd right before she gets sick recently. Do you think he could be coming down with something?

 

I hope he is doing better today.

 

Susan

[MomWithOCDSon]

My DS does this also when he is agitated, though his behaviors are also 99% OCD rather than tics. Until I started reading this board, I never would've known it had any neurological basis, but I do think it is a sign of the chorea-type movements associated with strep auto-immune respose, not entirely unlike Syndeham's Chorea movement issues.

 

I would contact the doctor right away.

[sf_mom]

This is a very similar TIC that someone I speak with off forum regularly.... her daughter is also post IVIG. Currently, she witnesses it in flair's and is now cracking knuckles. I believe they are about 12 weeks post IVIG. I'll be happy to suggest she PM you to give you her perspectively more accurately.

 

I highly recommend waiting out another treatment of IVIG. We are almost 15 weeks post our 3 treatment and have seen continued improvement weeks 9.5 to present. It takes time for some of this stuff to settle out and the CaM Kinase to resolve. Chorea or TICS take time. Hang in there. Our son is currently 98% that last 2% of recovery is killing me.

[bronxmom2]

This is a very similar TIC that someone I speak with off forum regularly.... her daughter is also post IVIG. Currently, she witnesses it in flair's and is now cracking knuckles. I believe they are about 12 weeks post IVIG. I'll be happy to suggest she PM you to give you her perspectively more accurately.

 

I highly recommend waiting out another treatment of IVIG. We are almost 15 weeks post our 3 treatment and have seen continued improvement weeks 9.5 to present. It takes time for some of this stuff to settle out and the CaM Kinase to resolve. Chorea or TICS take time. Hang in there. Our son is currently 98% that last 2% of recovery is killing me.

 

 

Thanks, a PM would be great.

[bronxmom2]

I do hope it's a "turning back of the pages" but it's just different from what I've seen before. The first two IVIGs made him definitely just... worse. Stirred stuff up.

This one seemed to make him so much better-- he looked and felt great for 2 weeks-- then this. It's just so weird.

 

I woke up today with miserable allergies, so maybe that's causing something?

I don't think he's coming down with anything bacterial or viral...

[sf_mom]

After our third IVIG we saw true healing too. Its hard to explain what is exactly different. I like to say we are truly thankful for every treatment we have had because of the things that have resolved with each treatment.

 

Honestly, so many of us post IVIG treatment are seeing these blips they come out of no where... Some symptoms resolve quickly and some hang around improving in amount and intensity but the longer you wait the better everything gets or just resolves. Our son's current symptoms are 1 to 5 times a day he rubs/blows on the back of his hand, infrequent coughing jag or occasional mild clearing of throat, chapped lips that have for the most part resolved.

 

I honestly think its more of a blip.... herxing reaction than anything else.

Edited April 26, 2010 by SF Mom

[worriedmommy]

I know this is not good, but for the last few days my son's hands have been twitching. He can't stop clenching and unclenching his fingers. He says the fingertips hurt and doing this alleviates it. If I hold his hand I can feel it twitching.

 

Strange, but this is a new tic that my daughter just started today. She literally looks like she's milking a cow with her right hand. Like your son, she also said she was doing it because her finger tips are hurting. I casually told her it might be better to not do it if it made her fingers hurt, but she said she had to keep doing it to "check" that they still hurt.

 

My daughter's main issue is tics, but I've never seen this before. She just ended a 5 day steroid burst yesterday (during which she had extreme mood swings). Her other tics seem to have subsided a bit today.

[sf_mom]

Worried Mommy: The TIC you describe actually sounds like chorea. Dr. Swedo specifically talks about the 'milk maid' grip in one of her on-line video discussions. The video was posted to this forum at one time. She demonstrates on the video.... Another common chorea is holding hands out perpendicular from body and fingers will look like they are playing piano.

[marilina]

SF mom could you please post the video link?

I don't understand if dr.Swedo simply describes the movement, or if is possible to see movement. finger tips and a repetitive motion with the fingers find we too.....

[worriedmommy]

Worried Mommy: The TIC you describe actually sounds like chorea. Dr. Swedo specifically talks about the 'milk maid' grip in one of her on-line video discussions. The video was posted to this forum at one time. She demonstrates on the video.... Another common chorea is holding hands out perpendicular from body and fingers will look like they are playing piano.

 

I have heard of the milk maid grip, and was floored when I say my daughter doing this with her hand yesterday. This is why I asked her why she was doing it (normally I try to just observe her tics and not comment on them to her, as I feel that makes her anxious). I found her answer to be odd, as she's never talked about "checking" things before. Yesterday was an odd day all around. Soon after the start of her hand TIC, she had an absolute crisis at dinner after she rolled a burrito wrong. She was furious that it wasn't "perfect" and then started bawling saying that "her brain was telling her to do bad things. It wanted her to throw her whole plate on the ground, but she didn't want to because burritos are her favorite dinner." It took a long time to calm her down, but when she did calm, her mood was fantastic, and tics were almost non-existent. --I'm so confused...and worried.

 

If you have a video of the milk maid grip, I'd love to see it so I can look for similarities.

[kim]

worriedmommy,

 

When your daughter said "checking" things, are you sure she didn't mean that she was checking for joint pain, stiffness or tingling feelings? Recently, I have come to the conclusion that some things that I always thought of as tics, really aren't. Some eye movements for instance are because of dry eye feelings, like widening and probably what many would consider to be an eye roll.

 

If your daughter's hands looked somewhat clawlike with rigid movements toward her palms, I would ask her if her fingers hurt or feel stiff. Just thought this might be a possibility.

 

 

bronxmom,

 

I hope your son's sensation passes quickly!

Edited April 27, 2010 by kim