Help from those who kids present mainly w/ tics

[lismom]

I am still obsessively looking for info on how others have experienced the slow recovery from tics associated with PANDAS. I have seen remission with my son in the past but it was more sudden. With this exacerbation his tics were off the charts, for us. Since starting the high dose zith and some augmentin I have seen the tics slow down some and maybe some longer time inbetween them. Do this sound like anyone's experience? Only past one week of abx.

 

Posting this to help me be encouraged. For some reason this time, I guess because PANDAS is our contiuous fight, I caved in to feeling defeated. Kathy

[Fixit]

Kathy..i feel your pain..

my ds used to, on a standard 10d course of abx..get relief in 24 hrs...then more than 50% in 2 weeks and the rest gone by end of month.........i was ssssspppppooooooiiiiiillllleeeeeeddddd!!!!!!!

 

4/6/09 will be 2 years...

we have tried different protocals...not on anything too long..and that may have been the problem....

in some of his recovery..its like long rising waves..nothing dramatic...until i go huh..he's not doing this anymore..or oh...that big annoying one is gone..for a lesser softer version...

and you feel like your crazy...in ....is it really different...was the other one more consistant...then the old one peeks in for an hour, or an evening, so you think i must have just missed all the other times he was doing it, but 2 weeks from that you realize it is really gone....

we have not done ivig or pex...we are still in line for pex but i have not update our doc with the new lyme results...

and at this point..ds, its seems....well....i don't even want to say....you know what i mean!!!!

but keep me in your prayers too..as you may know..i thought ds8 was non-p and started a tic 2-3 days before christmas...what a sh(*&&y present...and ds3 had 2 mild tics in aug-sept of 2010....

I HAVE A FRIGGEN LONG ROAD AHEAD OF ME...PRAY I DON' HAVE A HEART ATTACK BEFORE THEY REACH ADULTHOOOD

 

we have apt with lyme doc on tuesday assuming the roads are clear!! 3-4 hours away..i really want to get it started....

[jdude]

I am certainly no expert, but this is what we've been through with my son (age 10). Although the start of this whole PANDAS thing was OCD behavior in May 2010 (rinsing of hands), it morphed into mainly tics over the summer. An initial 20 day course of Augmentin (given for a sinus infection) helped those to subside somewhat. However, a month later they started up again worse than before. It wasn't until we did a 5 day steriod burst that the tics subsided completely. It took about 2 weeks after the steriod burst. He also was taking Clonidine in conjunction with that for the tics. The Clonidine makes him sleepy, so it was given to him an hour before bedtime. Since early November, he has had no tics. Recently he has started up again with the hand rinsing, we're on an extended antibiotic course since there is strep galore around the school.

[Phasmid]

Here is our timeline:

 

(This outlines the initial, acute episode, not the chronic up/down stuff since)

 

April, 2004 - sudden, overnight onset ocd, motor tics starting with face, start of trichotillomania

May - tics moved into trunk, legs

June- vocal tics began, worsening of ocd, housebound due to uncontrollable screams

July- scary full body motor tics (like chorea), and ocd that included lining up chair, plate, utensils, evenly touching his body parts in pattern

Mid July- started Nystatin, extreme diet control to treat supposed yeast infection (NOW WE KNOW HE HAD UNTREATED STREP PER LAB RESULTS)

Late July- vocal tics subside

Early August- motor tics start going away in the order that the last appeared

Late August- very few motor tics, next to no audible vocal tics

Early Sept.- no motor tics, no vocal tics; only ocd was look into sun compulsion

 

So, five months start to finish.

 

Now, during his last MAJOR ACUTE episode, Dec. 2008), things resolved much faster with antibiotic:

 

End of December- sudden overnight onset ocd, vocal tics, motor tics in face only

Early January- dx with Clostridium difficile colitis; put on heavy dose of Flagyl; within 24 hours ocd and tics start to become less severe but couldn't return to school due to ocd

Mid January- ocd symptoms and tics resolve with 14 days Flagyl, and he was "okay" until off the Flagyl for five days

Mid January- symptoms come back after being off Flagyl; placed on high dose Vancocyn (vancomycin oral) for 14 more days

Early February- symptoms gone, nearly 100% on Vancocyn, returned to school, kept on vancomycin additional 14 days followed by two month taper

 

Presently, he is on azithromycin whenever he has recurrent ocd and trichotillomania. We see very fast response to his residual behaviors. He just had first IVIg infusion. He does not have motor tics now. The only time he has vocal tics is when he watches t.v., and I think these may not be vocal tics, but echolalia, a form of ocd.

 

Hope that helped. I don't know why the flagyl/vancomycin worked miraculously on my son. He does have strep history, but no elevated titers. He has a specific immune deficiency.

[eljomom]

I think--possibly---that vancomycin is "the mother of all abx"??? My oldest dd had c-diff when she was 2 and went 3 rounds of flagyl. every time she would go off, within a week, c diff would be back. Vancomycin was the cure, along with major probiotics.

 

Echolalia is something in the Tourette's/tic family.