Jump to content
ACN Latitudes Forums

Any with predominantly tics? Also, supplements while waiting...


Recommended Posts

Fixit--what is a "ta"?

 

 

i have 2 minutes and 2 cents .......

ds is 95% ticcer.....

burst was nice in that we had 4 days of subclinical stuff...and then rebouded back to prior point...

BUT THE TAPER....so nice...we got to 85-95% improved....

loast but 60% of that...

we just had a ta and reclaimed alot of that...we are back to about 75-85%.from worst point

Link to post
Share on other sites

HD IVIg (1.5g/kg) is what cleared my DD's tics completely. We saw 70% improvement after first HD infusion in August 2008 and within a year she only had one tic left. Second HD infusion was in March 2010 and since summer I have not seen a trace of that (or any) tic. Prior to starting IVIg DD had extreme motor and vocal tics, as well as chorea movements.

Link to post
Share on other sites

Sorry for the silly question, but what is HD??

 

HD IVIg (1.5g/kg) is what cleared my DD's tics completely. We saw 70% improvement after first HD infusion in August 2008 and within a year she only had one tic left. Second HD infusion was in March 2010 and since summer I have not seen a trace of that (or any) tic. Prior to starting IVIg DD had extreme motor and vocal tics, as well as chorea movements.

Link to post
Share on other sites

Kind of like you I was initially worried about Tourettes because I have 2 cousins diagnosed with OCD and tourettes (1 has grown out of it ????) But my dd 8 had on and off tics for years, that is actually what she named them, not really motor like, and maybe could be confused with OCD. Then when she had a sudden severe decline in April 2010, she had panic attacks, severe ocd, and by the end of the week pretty severe motor tics of all extremities. I actually thought tourettes, but came across PANDAS and had to rule it out. I am sure many Dr's would have been happy to give us a tourettes diagnosis. But strep antibodies were high and tics resolved with abx. I thought they were gone, I havent' seen them for a while,and we have done IVIGx 3. I did try Olive leaf extract for a few days last week and she now has an increase in tics, ocd holding, not gone, but manageable. I am certain it is PANDAS/PITAND and not tourettes now. I also think it is suspicious my cousin grew out of pretty severe tourettes, I think he may have had PANDAS as well, but he was diagnosed early 90's. May be worth looking into about your brother as well.

 

Priscilla,

Did you think the increase in tics was from the olive leaf?

 

how old is the cousin who grew out of toruettes and what age did he start to remit?

 

 

 

Did you

Link to post
Share on other sites

HD stands for high dose -- and by that we mean 1.5 to 2 g/kg.

 

Sorry for the silly question, but what is HD??

 

HD IVIg (1.5g/kg) is what cleared my DD's tics completely. We saw 70% improvement after first HD infusion in August 2008 and within a year she only had one tic left. Second HD infusion was in March 2010 and since summer I have not seen a trace of that (or any) tic. Prior to starting IVIg DD had extreme motor and vocal tics, as well as chorea movements.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...