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progress being stymied in recovery


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Folks, I have just about had it with tics. My son is bending over at the waist in response to a tic. They are spiking and I don't know why. He went on Augmentin a week and a half ago, could this have anything to do with it? Gets 1000 mg a day right now. He is also on .75 daily of Risperidone. I think that's a little high as he is sensitive.

 

So with the tics, more Pandas behavior appears. He was able to sleep in his bunk last night but the night before, he woke up with a nightmare and wouldn't sleep alone.

These are old ds10 issues.

 

Very hard to watch, very sad. I won't contact Dr K until next Monday if things persist, he said to give it a week.

 

I'd get PEX for him if I knew the tics would go away entirely. But I think I heard they do but regressions occur when exposed to infection and the tics come back.

 

Ugh Someone suggested a "healer" in my neighborhood, swears by her. Hey I'll take him anywhere at this point.

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I am with you on this. Feel overwhelmed and exhausted with tics and sleep issues. These are my sons main issues for the last 3 1/2 years. We are heading for IVIG number 2 pretty soon. Hoping to get some relief. Is there a tic medication out there that works for tics for PANDAS? We have a prescription for Tenex but have not tried it as we are waiting for IVIG. What about Topamax? Anyone had success? We have always gone the PANDAS route, but my son is so tired of it all and we are considering working with the meds. Anyone have success?

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I am with you on this. Feel overwhelmed and exhausted with tics and sleep issues. These are my sons main issues for the last 3 1/2 years. We are heading for IVIG number 2 pretty soon. Hoping to get some relief. Is there a tic medication out there that works for tics for PANDAS? We have a prescription for Tenex but have not tried it as we are waiting for IVIG. What about Topamax? Anyone had success? We have always gone the PANDAS route, but my son is so tired of it all and we are considering working with the meds. Anyone have success?

 

My 9 y/o takes clonidine at night, he still has a lot of tics, but they are much worse when he is off of it ( plus it also helps him fall asleep at night). IVIG did not touch his tics yet, we are 90 days post. They have discussed tenex for am but we are just not sure about that either? until we know whether he tics from PANDAS or has an underlying issue of tourettes, getting ready to start a steroid burst so we hope this will make it more clear.

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as per KaraM notes

 

on this thread

 

http://www.latitudes.org/forums/index.php?showtopic=9047

 

As for antibiotics, my notes are a bit different from what I've heard others say. I wrote that he thinks antibioitics can be enough "if diagnosed early enough."

Otherwise he feels IVIG is the only long term solution. PEX works if followed by IVIG (except for significan TIC disorcers with minor OCD, then PEX may be preferable).

 

they tend to be harder to get rid of..and my fear is the tics will be left as "oh well the have ts too" but the reality is they just have more sticking power!!!!

maybe its the location in the brain!?!?!

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Only my opinion but I speak from personal experience.

 

Tenex stinks.

 

Clonidine Stinks.

 

:angry:

 

I would use angrier language if I could.

 

7upMOM, you must have done IVIG a few weeks after we did. They do always say tics are the last to go but.....

 

Why do you not care for the tenex or clonidine? I am absolutely ashamed to admit it but the clonidine we like because it makes him fall asleep within the hour of taking it, and we NEED that. The vocal tics can drive us mad sometimes. Doyou think your son tics from PANDAS or has tourettes also?? Just curious also how many other people are struggling with trying to figure that out? Did steroid burst help your son with tics at all? You must be getting the same result with ivig for tics we got- ppphhhllltttthhhhh but helped with the rages (: and functioning

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Only my opinion but I speak from personal experience.

 

Tenex stinks.

 

Clonidine Stinks.

 

:angry:

 

I would use angrier language if I could.

 

7upMOM, you must have done IVIG a few weeks after we did. They do always say tics are the last to go but.....

 

Why do you not care for the tenex or clonidine? They didn't work and seemed to make matters worse.

 

 

I am absolutely ashamed to admit it but the clonidine we like because it makes him fall asleep within the hour of taking it, and we NEED that.

My son's sleep problems have improved somewhat but nightmares were a big issue on clonidine, as well as rage

 

The vocal tics can drive us mad sometimes.

Tell me about it, they drive his school nuts too and he holds it in a lot there.

Doyou think your son tics from PANDAS or has tourettes also??

Not really easy to diagnose for sure, is it? THe motor tics suggest PANDAS to me.

 

Just curious also how many other people are struggling with trying to figure that out? Did steroid burst help your son with tics at all?

Steroid bursts- he got sick after one and we stopped. He had a rage after a few days on another and my wife wanted to stop it, thought it was roid rage. I would have continued

You must be getting the same result with ivig for tics we got- ppphhhllltttthhhhh but helped with the rages (: and functioning

Yes, generally true.

Edited by fuelforall
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Tenex is a good first line medicine. Not a stimulant - tried ritalin which made he more hyper.

 

My son lost impulse control - he was not angry - just hyper - impulsive - unable to focus - not a big ticcer. For us, Tenex was a wonder drug. The effect was IMMEDIATE. He could do school again - no spitting (tic), standing on chair, touching teacher's desk, playing with water and other quirky behavior. He regained impulse control. The only trouble was that it didn't last all day - we needed an extra hour in the afternoon and evenings. I think they make a time release or patch now.

 

The doctor switched us from Tenex to Risperdal - a much much stronger drug. Risperdal helps with dopamine and seratonin. Risperdal really helps my ds with mental tics - sticky brain thing.

 

Clonidine - no help - except as an aide for sleep - for my son it has a long effect and we would have to give it at 6pm and it turns his brain to mush by 6:30pm. This drug is used by the tourette kids for sleeping problems.

 

Klonapine - no effect - not for tics or seizures.

 

If you need to consider meds for tics the TSA - tourette society - has lots of information and lists of doctors who are familiar with tic meds.

 

VENT: There is no test! It is all trial and error! This drives me nuts! They really don't know much about the brain! More research is needed! When Michael Fox got parkinson disease I was so hopeful - parkinson being the opposite of tourettes. Now is that sad.

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You guys are making me cry!!!!!

seroiously..dont give up!!!

be as certain as you can that all infections are cleared...

and keep a VERY close watch on the gut!!! and this is tricky and complicated...as one goes in balance another goes out..

yeast, bacteria, fungi...

check the hippuric acid.. once we got this under control things were a bit better.

then....Please try the taper!!!!! :wub::wub::wub:

 

Check for LYMES..and if not follow the protocal anyway....it may take longer...but...

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