IVIG and strange arm movements

[PhillyPA]

My son, age 8 is having strange arm movements after ivig. Anyone experience this and know the reason?

[Worried_Dad]

Our son (12 at the time) also developed some new tics (motor and vocal) after his 1st IVIG. Dr. K considered this part of the "turning back the pages" healing process and told us that post-IVIG PANDAS kids will sometimes display brand-new symptoms or behaviors, but that these generally don't last long. Hope that's the case for your son!

[Johnsmom]

YES!!!!!! How about walking into a room sideways??? Arms and legs flailing about with thumping around the house!

 

 

My son, age 8 is having strange arm movements after ivig. Anyone experience this and know the reason?

[norcalmom]

ds is getting ivig in two weeks and this is scaring the bejessus out of me. How long did the new tics last? How can I convincingly tell my son that this treatment will help him when I know that he could have worse symtoms for weeks afterward...I'm preparing for him ot rage at me when this all happens. Hopefully it won't but preparing for the worst.

[sptcmom]

ds is getting ivig in two weeks and this is scaring the bejessus out of me. How long did the new tics last? How can I convincingly tell my son that this treatment will help him when I know that he could have worse symtoms for weeks afterward...I'm preparing for him ot rage at me when this all happens. Hopefully it won't but preparing for the worst.

Its different for each child but most seem to go thru the process with old symptoms coming back, passing thru the body kind of. Some last hours, or some go on for days.Dr K says its a good sign that IVIG is doing its job. We had old old symptoms from 5 years ago come back and blow my mind. We had thought those to be a respiratory issue at that time esp since it went away.

Don't be scared, just be prepared.

Things do get better after the first couple weeks. Dr K says most seen are not new but we may not have seen them at home. He said many children are able to control mild urges for OCD at home but let go at school, sight unseen. I think we've seen a couple new to us but most of his tics, and ocd that are flipping are old stuff.

DS was recently exposed to strep at camp and thats thrown us for a curve but Dr K asked us to double up his abx and we're struggling with the ramp up right now. 10 weeks post IVIG.

Jodie

[PhillyPA]

My son received his first ivig 8 weeks ago and his second one yesterday and the day before. (2gr/kg). I don't want to discourage anyone from ivig. The improvements over these past 8 weeks have been truly amazing. I would do it again (and did!) in a heartbeat. He has had pandas for three years and his doctor feels aggressive treatment is necessary. So for anyone in doubt about the ivig - I would highly recommend it. It is our only hope at this point. We are seeing amazing gains. I was not worried about his arm movements, I only found them curious. It doesn't really feel like a tic to me. (when I say feel, I mean my gut instinct). I think it has something to do with his brain healing. I could be totally wrong - but I know it has to do with healing.

 

Go for the ivig! It is a miracle drug.

Edited July 24, 2010 by PhillyPA