Neuro Drugs after PANDAS treament ?

[thomasmom]

This time of year always scares me, although I try and keep my chin up and hope for the best. But now I am falling apart. At present my DS9 has such loud vocal tics (not much motor) that he is very distracting at school and other places. (lots of looks at movies etc) We have been fighting PANDAS for 2 years now after spending a 18 months pursuing a Tourettes treatment plan. We have had great periods of relief (3-4 months) only to have our peace shattered at a moments notice by the sudden onset of big tics. This summer Thomas tooth fell out. A seeminly harmless ritual of childhood turned into a nightmare for us. 12 hours latter he was ticcing really badly. He had had a virus a few weeks before but that didn't really affect him much. (or so I think) Dr. K bumped him to 875 Augmentin 2 times a day and got good relief within a few days. We are now back down to the 500 mg once a day. We have done IVIG twice. The second time you could see his multiple types of tics just slow and then finally stop even before the infusion ended ! But we still had the "turning back the pages phenomena" and had to deal with loud tics for a month before they calmed down.

 

I just need some guidance here. He has gotten much better (no ADD types symptoms, he is "needy" but no separation anxiety, handwriting is better etc) but the obnoxious tics remain. Has anyone gone through the PANDAS treament and then had to go back to some tourettes drugs to control the tics. I don't want to go through that again. So many side effects. But I have to do something.

 

 

I keep having this recurring dream that my DS has a port and can just go through drive through PEX. Just pull out the bad antibodies, but the rest back in and away we go ! McPEX services. I know ...in my dreams

[Chemar]

why not first try the more natural tic reduction methods that have helped so many others with TS tics before resorting to the drugs with their potential side effects?

 

teeth issues are recognized as being a TS tic trigger

some people have found that they have misalignment of the trans-mandibular joint and this can also be a tic triggerrelated to the tooth stuff

[NancyD]

If he did well on the higher dose Augmentin, why not go back to that? The current dose may be too low.

[thomasmom]

why not first try the more natural tic reduction methods that have helped so many others with TS tics before resorting to the drugs with their potential side effects?

 

teeth issues are recognized as being a TS tic trigger

some people have found that they have misalignment of the trans-mandibular joint and this can also be a tic triggerrelated to the tooth stuff

 

Thanks for sharing this. I had no idea ! My pediatric dentist hasn't said anything. Can you get his checked and then treated ? What sort of natural remedies would you advise. I did buy some Tic Tamer. I read some mixed reviews but some people said it helped them. At this point I will try anything.

 

Many thanks for you help !

[dcmom]

My two pandas daughters have had symptoms flare due to losing teeth. For one, the flare up was mild and passes in 2 weeks. For the other, the flare was worse, but helped greatly with steroids.

[dut]

Hi - my PANDAS dd also flared when she lost a baby tooth. Her symptoms responded to increased abx within a few days. Now we also give her extra abx when she loses a tooth and she hasn't had a flare related to tooth loss since.

[EAMom]

I agree with those that recommended going back up in the antibiotics...or even increasing to 1000mg Augmentin XR 2x a day (some on this forum find Augmentin XR to be more effective than reg. Augmentin.)

 

After a month of the higher dose of Augmentin, you might want to add on a steroid burst.

 

In the meantime, does advil help?

 

Also, don't forget to culture family members to make sure nobody has strep (carriers).

 

Another antibiotic option would be Azithromycin. I dont' know how big your son is...but either 250mg or possibly 500mg/day.

[Chemar]

why not first try the more natural tic reduction methods that have helped so many others with TS tics before resorting to the drugs with their potential side effects?

 

teeth issues are recognized as being a TS tic trigger

some people have found that they have misalignment of the trans-mandibular joint and this can also be a tic triggerrelated to the tooth stuff

 

Thanks for sharing this. I had no idea ! My pediatric dentist hasn't said anything. Can you get his checked and then treated ? What sort of natural remedies would you advise. I did buy some Tic Tamer. I read some mixed reviews but some people said it helped them. At this point I will try anything.

 

Many thanks for you help !

 

 

are you sure your child has tourette syndrome in addition to the PANDAS? or are these PANDAS related tics?

As the others have mentioned, if PANDAS, then perhaps the antibiotics are what are primarily needed?

 

there is a lot of information on the TS/tics section on the many things that can be helpful to keep TS tics under control.

 

I have a link in my signature on what helped my son, http://www.latitudes...p?showtopic=687

and there is also a book by our admin, Sheila Rogers http://www.latitudes.org/book.html

 

a good article on anecdotal evidence for tic triggers

http://www.latitudes...ng_triggers.htm

 

here too is the helpful threads sticky on the TS board

http://www.latitudes...?showtopic=2459

 

HTH

[thomasmom]

I agree with those that recommended going back up in the antibiotics...or even increasing to 1000mg Augmentin XR 2x a day (some on this forum find Augmentin XR to be more effective than reg. Augmentin.)

 

After a month of the higher dose of Augmentin, you might want to add on a steroid burst.

 

In the meantime, does advil help?

 

Also, don't forget to culture family members to make sure nobody has strep (carriers).

 

Another antibiotic option would be Azithromycin. I dont' know how big your son is...but either 250mg or possibly 500mg/day.

 

Thank you guys for your help. I called Dr. K and upped his Augmentin dose to 875 BID. I don't see too many tics this am (but afternoon is when he really ramps it up) Has anyone been on 875 BID or greater for a long time ? Do you develop a tolerance to Augmentin after a while and you need more.

 

I am fairly sure we have PANDAS because we had a ign Cam II score on Dr. Cunninghams test and had a great response to the intial steroid burst. He went completely tic free for 6 weeks after just a few days of steroids. That period of time was like the eye of a hurricaine passing through our lives.

[EAMom]

"Saving Sammy" was on 1000mg Aug. XR for a year, and then a lower dose for another couple of years. He was about 100 pounds at the time.

 

Worried Dad's son was also on Augmentin XR 2x daily for quite a while...I think he still is?

[thomasmom]

"Saving Sammy" was on 1000mg Aug. XR for a year, and then a lower dose for another couple of years. He was about 100 pounds at the time.

 

Worried Dad's son was also on Augmentin XR 2x daily for quite a while...I think he still is?

 

Thanks ....that makes me feel better

[NancyD]

My DD14 has been on Augmentin XR 1000 bid for 4 mos and I don't expect to change that for a very long time.

[Fixit]

yes..heard the same thing...

will let worride d.speak to clarify..

but had 2-3 ivigs...but left with new vocal as never before..

changed to HD aug..went away and believe still on hd aug..and in remission for some time now...

and then there is saving sammy....i thought that super higd dose was longer than a year maybe 2 then dropped

 

again the ps's...it's also possible the vocals are do to digestive issues...

once these kids get triggered..it seems that anything can hyper sensitize their systemm....

so you or i may have a slight digestion problem..not kknow it..or get some traditional reaction.

for these kids it becomes another type of toxin to them...

more thougths on this later..gtg...my current, last thing is a vocal and i have some qustions too...will ask later

Edited August 29, 2010 by Fixit

[EAMom]

Oops. I meant to say that Sammy was on 1000mg of Augmentin XR TWICE a day for a year...

[Worried_Dad]

Yep, for 10+ months now. No plans to discontinue or lower dosage any time soon (at least until we get the ASO titers down for the rest of our family).

 

"Saving Sammy" was on 1000mg Aug. XR for a year, and then a lower dose for another couple of years. He was about 100 pounds at the time.

 

Worried Dad's son was also on Augmentin XR 2x daily for quite a while...I think he still is?