anyone had success with medication?

[lynnie1264]

Hello...

 

I'm sort of at my wits end right now. Dr appt tomorrow... just wondering who has had success with meds. I'm more in favour of the natural way, but my sons behaviour is all over the place right now. His ticcing has increased also. They go back to school on the 27th January and I'd love to have him alot calmer by then.

 

I think the behaviour seems a bit out of his control at the moment, and I don't think it's fair on him to let it continue. He's been like this before, yet seems to be able to control his actions at school. I feel like crying. It's as if he's trying to push me over the edge.

 

As I mentioned in another post, I will be asking the Dr to do some tests, but is there anything wrong with a small dose of meds if it's really going to help? As I said, it doesn't seem fair to let him continue like this, I feel I'd be letting him down if I ignore it.

 

He's also had a huge disappointment the last few days with his father not showing up, it hurt him. I know this could have something to do with it, but still...

 

Any advice would help, either for or against the meds.

 

Thanks,

Lyn.

[Chemar]

Hi Lyn

I am not against meds per se and know they have a very important and sometimes life saving role

 

my son had very very severe tics, OCD, and other behavior / mood issues when younger and finally we did decide to try rx medications out of desperation and also because we were being pushed into them by his neurologist and school etc

 

sadly for him, it was a case of from bad to worse as he had dreadful side effects that were more negatively impacting than the issues we were medicating for. I am not exagerating when I say that we nearly lost our son during that awful year on meds

 

the various meds he tried for the tics and OCD/anxiety etc were haldol, zyprexa, luvox, methotrexate and naltrexone (my husband tried clonidine with very very bad side effects resulting)

 

I know that different people react very differently to the same substance, whether a med or supplement etc and so I am not suggesting that what my son (and husband) experienced will be the result for everyone.

I know of many people who feel the benefits of the meds have outweighed the side effects

 

but that was our experience and is the reason we sought more natural ways to help, thankfully with very positive results.

 

I hope you find the best way for your son

[CSP]

HI,

 

Before I found this place Dr. put our son on the Clonidine patch. He was knocked out the first day, slept a lot the next day. Each day he was less sleepy, but his eyes looked bad and he was not himself. It did calm his body down but did nothing for his vocal tics. We took him off a month later and his body never did go back to jumping around all over the place.

 

The vocals were still the big prob. and we later put him on risperdal. That worked a bit better then 50%, he was tired but his eyes looked normal. He was able to play baseball and still did very well on the field. We did take him off that 6 months after we put him on, because he seemed to have results with the vit. He still waxes and wanes on or off meds. I did feel putting him on the risperdal helped to clear my head and start over with the vits and go slower. I was in such a hurry for some vit. to be the magic bullet it was too hard to see what was working and what was making things worse.

 

Good luck, I'll be praying that the Lord helps you with this, and anyone else who feels it is time to make this choice.

 

cp

[faith]

Lyn,

could I ask what type behaviors your son is displaying? does he have any other issues besides tics? I have some insight as to behaviors and want to say more, but if you wouldn't mind answering this first so I can give you a better response. does he have any ocd or attention issues?

 

Thanks

Faith

[rysmom58]

Hi,

I started my son on clonidine 7 days ago. He's been ticcing since he was 3 and until now I tried the all natural route. My line in the sand (so to say) was that if his ticcing started affecting his schooling (academically) then I would explore medication. Well, his teacher and I have kept in constant contact throughout the school year and is eye rubbing tic is really affecting his reading and writing. So, after speaking with the neuro I decided to put him on medication. 7 days in his tics are nearly gone and he hasn't experienced any side effects. He only take .05 mg at night, about a 1/2 before bed and he's been fine during the day.

[lynnie1264]

Hi Faith...

 

Brendan behaviour can be good to extreme. I know boys can be boys so to speak but he can go right off. He'll scream and yell and seem to have no control over it. There's like a weird look in his eyes like he's possesed. {ofcourse that's not true, but you know what I mean?}

 

Sometimes it's pretty bad anger, other times it's being REALLY annoying and seeming to enjoy it. He at times will say things that he's well aware will set someone else off. {usually me or his sisters... not the step dad lol } He talks so much, and even when you're giving him a hint to stop or he'll be in trouble it seems like he HAS to finish it.

 

He was always a fairly easy going kid. Having said all these seemingly horrible things about him, he is a sensitive kid {not overly} and has a really good heart. He's always on the side of the underdog.

 

I have been in tears at times when he just won't stop. Then he just suddenly calms down like nothing happened. HOWEVER, it seems he can control this at school. Excellent student, a role model is what his report cards say. I find this amazing. His grades are fine too. He excells at all sports too. He seems to be an old soul. Much older than his years.

 

I'd appreciate any help.

 

thank you,

Lyn. ... he's in the lounge room right now stealing his sisters mobile phone... just for the reaction he knows he'll get. ARGH!!!!

[lynnie1264]

Rysmom & CSP...

 

Thanks for your replies. It really is a hard one which our Dr will review in a few weeks. Trying different vitamins now, and a calming pill.

 

If I feel I need to go the med route I will, but only for his sake. I'd much rather not.

 

Rysmom, I'm so glad it's working and no side effects, everyone's dream really.

 

So I'm hoping what vitamins he's on now will help. I don't care if he still tics a bit, I just don't want him to be affected by it. To me mild tics would be fine. It is possible the fish oil increased the tics, so we'll see. Dr said even after only taking it for 9 days it could still take a little while to get rid of it from the system. School starts in 11 days, I'd like to have a handle on it by then.

 

However, I will keep my options open. In the end we all want what's best for our kids, don't we? So thanks again for your help. It's much appreciated believe me.

 

Lyn.

[lynnie1264]

Faith'

Hi again. sorry but there were a couple of other things I forgot to mention.

 

Attention issues? Well, yes, at home if he's aked you a question he cuts you off halfway with his own answers, and he is always butting in to others conversations. Very annoying.

 

OCD; possibly. He says he sometimes has to do a tap with his fingers 9 times. He's never heard anything like that discussed so he can't be copying. Not sure if that's a tic or OCD. Ther line blurs with much of that, doesn't it? He seems to like routine and gets stressed if it changes without notice, or even WITH notice. Like, he leaves for school at 8am every morning, if it's 8.05 he gets very agitated. It's a 2 minute walk to his school, so it's not like he'll be late. He'll throw his bag down in desperation and get all red in the face.

 

Don't quite know how to handle all of this stuff, and I'd focussed more on his tics.

 

If you can offer any suggestions that would be great.

 

Lyn.

[Chemar]

Lyn

have you tried Inositol at all? It is a B vitamin and safe and can really help with some of the intense mood stuff. Best taken with B6 (we use P-5-P) and methylB12

[faith]

Lyn,

Okay, I get all you are describing. I see alot of this. I have come to realize what alot of my son's "poor behavior" is about, and I think it could explain some of the frustrations we are having. I actually want to start a separate thread about this, because I see so many of us having different comorbid issues, but are not understanding exactly what these issues do and how they spiral and sort of create that "tangled web" and believe me, we are weaving it.

 

First, what you said about the ocd. Not to alarm, but tapping something 9 times, especially if HE is the one who said he has to do it, is probably definitely an ocd. How far his behaviors go as to it being an actual "disorder" right now is not the point. But he is probably displaying some other things that could be ocd (we'll use that term for now). And what you describe about him liking his routine, and getting upset if you leave the house 5 minutes later, that is a flag too. People don't get upset over stuff like that unless it is an obsession or compulston. He is not crazy, he is not a bad boy. What you describe about him not getting in trouble in school, that is my guy to a tee. I always think I got the wrong report card when it says he is a polite and well mannered boy. He is displaying these behaviors at home because he can, and it is his comfort zone. He knows what will happen, even if it is punishment. the evil he knows is better than the evil he does not know.

 

So what I am saying right now as a quick answer (cause' I gotta go and get my hair colored!, don't wanna be late)., is that I don't believe that your son's (or mine or anyone else's) is soley because they have bad behavior or rage problems. In other words, it may not be a separate problem, but in some cases, a result of the "other" problems. I don't see my son freaking out for no reason, there is usually something. The trouble they are having is coping with what is probably the ocd. I'm going to tell you more of what I have come to realize, I'll be back in a couple hours. In the meantime, if you see this message, could you tell me more about things that your son does that you would consider "rigid behavior", "quirks", or ocd type things, anything.

 

Thanks

Faith

[Chemar]

OCD, anxiety, explosive behavior, rages, fears/phobias etc are all recognized and well documented to be common comorbid disorders with TS and other neuro conditions and many of our kids have these.

It is also not unusual for the child to control these in social settings and then release them big time when "safe" with family

We have many threads here stressing how these are things that the kids cant help and should not be considered "bad" behavior

 

many of our kids find those issues even more bothersome than the tics, and many of us have had much success with natural/alternative treatments while others have found meds beneficial for this

 

good info on Leslie Packer's site TS Plus

http://www.tourettesyndrome.net/conditions.htm

[faith]

Okay, I'm back.

 

I am going to continue what I want to explain what I have come to realize from my own experience in MY house on another thread, "comorbid issues" that I started before Christmas. This way you can read a little of what was going on back then, as this kind of is a continued update on that theme. and being that this is not really about the title of this thread (medication), I want to keep it separate, in case others in the future are interested in this type info. But also, it could help those parents who are wondering if they should be looking at medication for thier kids, by helping them to maybe see where this behavior could be coming from. I know I was at my wits end too, and kind of still am, but I am now understanding that what seemed like attention problems and not listening, was just a red herring.

 

I fully understand that these other issues are a part of the ts, and ocd, but I want to explain how some of the "behaviors" and by that I mean ordinary everyday behavior (they way one acts), not behavior problems, relate. I think it may shed some light on those who don't or can't figure out why their kid acts like this or that. So for anyone who wants to read more on this subject, here is the link to my other thread:

 

http://www.latitudes.org/forums/index.php?showtopic=4235

 

p.s. i have started him on a powdered inositol which is about 4 grams per teaspoon, and give one and now two per day a.m. and p.m. for almost two weeks, and so far...nothing. I'll keep it up, as I don't see anything adverse at least. I'll keep you posted.

 

Faith

[guy123]

Yes.

 

0.05mg nightly of Clonidine resulted in significantly decreased ticcing. Side effects: headaches and eye aches (went away after the first week), lethargy, dizziness upon standing, decreased libido (reduced dose to 0.025mg nightly to compensate).

 

The libido side effect was annoying. Keep in mind I'm a 28 year old male, however. Most children probably wouldn't care (or notice) decreased libido. The reduced ticcing was extremely nice as it made me more confident out in public.

 

Keep in mind that of the few dozen or so drugs that are used to treat Tourettes/tics, there are only 4 I would even consider trying in most cases due to the potential side effects of the others. These 4 are:

 

Clonidine

Tenex (similar drug to Clonidine, supposed to make you less sleepy, tho)

Topamax (anti-seizure drug a user on this forum (myrose?) has had fantastic success with)

Marinol (marijuana THC extract in pill form, studies report phenomenal success in trials)

 

Nearly every other tic drug has one or more of the following side effects:

 

- Sudden death from lengthening of the QT interval

- Tardive dyskenesia (potentially permanent movement disorder)

- Increase in tics

- Stiffness and difficulty when trying to move

- SSRI side effects

 

So in other words, I would start with one of the four I listed above, and only if none of those work AND the symptoms were really, really bad, would I move on to the other ones with the more severe side effects.

[myrose]

So sorry you are at this point. I know all too well when it comes time to think about medicine.

We started on topamax (its actually a seizure med) 25mg 1x day (before bed). No one can explain to me in a way I understand anyhow, how it took the tics away. But they are gone and I just do not want to ever see her like that again. In the end she cried everyday and told me that I did not love her because I wasn't helping her. Tore my heart out and that point.

I guess I would say the tics always bothered me more than her but when they started to bother her.....I couldn't take it anymore. It did get severe for her with the head Bobbing and Body jerk.

Goodluck in your decision and I do know its a hard one. Quality of life is what we needed.

One thing when it comes to meds.....Start slow and Stay Low.....

[mommyof2]

We also are using topamax with good results. We are using 50 mg (sprinkle caps) and I give to my son around supper time. Found when i give too late in the eveing he has a hard time getting up at 6:00 for school (yes 5th grade and bus comes at 6:30) It has significently reduced his tics. He has a little body twitch he does once in awhile, notice more when he is excited and a nose noise...hoping that has to do with the seasons. His face is so still I just want to watch him always and no more hand jerking. We have been on this for about a month. We went the natural route but just couldn't get a grasp on it. Hoping he continues to get better and grows out of them

 

Mary