I know Tenex has been talked about...

[SSS]

Sorry- never mind.

Edited March 16, 2011 by S & S

[Guest pandas16]

Sorry- never mind.

 

 

omg, I'm not sure what you were going to ask, but I'm currently in a PANDAS flare at the moment. (really bad tics) nothing else. Not sure what is causing it. I started Tenex yesterday and went from having over 200 tics to 5. AMAZING DRUG at least for me- just wanted to share.

[SSS]

Sorry- never mind.

 

 

omg, I'm not sure what you were going to ask, but I'm currently in a PANDAS flare at the moment. (really bad tics) nothing else. Not sure what is causing it. I started Tenex yesterday and went from having over 200 tics to 5. AMAZING DRUG at least for me- just wanted to share.

 

 

Thank you pandas16--we are in some dark days here with tourette/violent breakdowns- I have a phone appt. w/our Dr. in an hour. I have no idea what to do anymore. Tenex had crossed my mind this morning...

So glad it is working out so well for you-----

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[butterflymom]

=

Edited February 2, 2016 by tampicc

[SSS]

I guess we are, yes...she is going to 1/2 day Kindergarten, where she ALWAYS holds it together, gets good 'grades.'

 

But, the violent/tourette rages- are incredibly scary. I am attacked, my little 4 year old is attacked/abused- she can cause self injury. I can't do it anymore. We had 3 days without, but then a horrid one last night, my DH is out of town, I tried to call for help from IL's, they didn't come, and had another this morning.

She can no longer shower/bath, nor get her hair touched/combed in any way-

But it is these rages. Last night I had to force feed 2 melotonin (1 mg. each) and a shot of ibuprofen.

It is heartbreaking. I feel like I'm in an abusive relationship, with the horrid name calling and getting hit, bit, spit.

I'm scared where this is leading.

Sorry to vent.

[SSS]

P.S., i thought our rages were gone (don't think they are quite as bad as yours. . . but I hate them) but anyway in week 3 they seemed to go away, but then at the end of the week, we had some real anger and he tried to bite me again and successfully scratched me. Now we are nearly ending week four and had two really great days.

 

Do you have any sense that the symptoms are saw tooth, roller coaster, or is it bad all the time? I've heard it described like a pendulum swinging back and forth between bad and good, and swinging less and less and less. I think that's what we see here so far, but I'm optimistic today. . . not every day.

 

*I am on a complete roller coaster. I thought maybe very bad gut issues were our problem- ordered a test, and yes, we have some yeast overgrowth (not insane) and NO bacteria/clostrida- have a new anti-fungal, so it's not that.

I do have optimistic days, but these loss of control, violence--I don't know-----*

[Ozimum]

I thought maybe very bad gut issues were our problem- ordered a test, and yes, we have some yeast overgrowth (not insane) and NO bacteria/clostrida- have a new anti-fungal, so it's not that.

I do have optimistic days, but these loss of control, violence--I don't know-----*

 

When you say there's 'NO bacteria' in the gut, I'm assuming that means there's no strep and staph. What about E.coli? (Which is good to have in the gut.)

[EmersonAilidh]

I always have problems recommending/advising against meds since I was on so many at once but Tenex is one of the few that I'm okay with supporting. My time on it was brief but it saw a noticeable improvement in symptoms. Can't remember the dose though :/

[SSS]

I always have problems recommending/advising against meds since I was on so many at once but Tenex is one of the few that I'm okay with supporting. My time on it was brief but it saw a noticeable improvement in symptoms. Can't remember the dose though :/

 

 

Thank you---

I had to call over my 77 yr. old FIL yesterday, things started to get so crazy. It helped, I was able to have a good conversation with our Dr. (DAN!/PANDAS) and first he referred me to his 'friend' the head of Stanford child psych., which we can't afford, thank you, (lol) but we talked, and he said he actually 'loved' Tenex, which surprised me, and sent in a script for us. I gave her some before bed last night (first time I have ever put this child on any type of drug, EVER)

and today she has had incredible control over her body, much, much better. She is tired, though, which I know is a side effect.

I'm going to try it for a week, see how it goes (very low dose)

Thanks again----

[SSS]

Cancel Tenex:

She fell asleep on the couch, woke up to go to 1/2 day afternoon K, and weeped because she wanted to go, and felt unable to (too tired)

I guess I just need to wait out this IVIG.

[mkur]

Cancel Tenex:

She fell asleep on the couch, woke up to go to 1/2 day afternoon K, and weeped because she wanted to go, and felt unable to (too tired)

I guess I just need to wait out this IVIG.

 

With all the problems you are having, I would not give up on this med so fast if sleepiness is the only side effect.

 

Tenex was a wonderdrug for my son. I would cut the dose in half and/or change the time you give the dose(s). My son was/is very sensitive to the timing of his meds - with food vs no food - with orange juice vs no orange juice (very acidic). Administering meds can be tricky. This is only my opinion and you need to call the doctor for some advice.

 

Good luck

[butterflymom]

=

Edited February 2, 2016 by tampicc

[SSS]

Thank you so much for taking the time to reply and help.

She is still a bit weepy (about missing school)

I DO see some positives, especially all morning, before she fell asleep this afternoon.

I am thinking skip a dose tonight, she has a little morning school tomorrow, and then give it to her again around 12 pm tomorrow when she comes home...they are tiny white round pills, time released, 1 gram, can't cut in half...

THANKS.

[dcmom]

S&S-

 

I would agree with trying the tenex a little bit longer.

 

I am not familiar with tenex, but I have a few thoughts:

 

first, many meds do have side effects, but sometimes after a little time the body adjusts, and the side effects lessen. I would probably start by consulting the pharmacist, and then maybe the doc about the sleepyness, and some ideas to minimize this.

 

Second- it sounds like your daughter has been having a really rough time from your posts. I think (esp easy when they are young) there is a time when there mental health, confidence and self esteem need to be put way ahead of school. I am assuming that the tenex is a band aid, for riding out this tough post IVIG period. I think this rough period can last for around six weeks. I would really consider remaining on the tenex if it keeps her calm and happier, and if needed adjust the demands on her. This could be done just for six weeks, at which point you can re evaluate. At that point- maybe you will be able to wean her off, and if not, you will probably be continuing to address the underlying cause.

 

We have never done IVIG, but I often wonder why docs don't consider a steroid taper post IVIG, if so many kids have such a hard time. It is really not acceptable for treatment to make them worse, initially. This is such a cruel disorder! I don't know if steroids are contra indicated with IVIG, or if you have had success with them, but it might be another route to consider if the tenex is unbearable.

 

Good luck. Truly, it doesn't feel like it at the time, but most of us on the board have been where you are. It sucks, and it is very hard to see a way out when you are in the thick of it. BUT most kids do see some improvement from IVIG, you will get her better, and believe it or not, she will forget 90% of the pandas stuff when she is better.