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Wondering if we should try medication


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Hi,

 

I've always thought that we should stick to natural methods to tackle my son's tics but now I'm having my doubts. His tics are so severe. I'd love to hear from those who have tried medication. What were the side effects? Were the side effects permanent? Did they help? Did it change your child? Sorry for all of the questions. I just don't know what the right path is right now.

 

Thanks,

Nola

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I am biased as both my son and husband were severely impacted by the side effects of TS&OCD meds

 

The problem is that different people react differently to meds, and so too with side effects. What may be a passing inconvenience for some can be a long lasting serious effect for others

 

If you do decide on any meds, research the individual med very thoroughly and then weigh up the potential risks and benefits....and please know that those reassurances from the docs and pharma that the severe side effects are "rare" ,,,,well.....all I can say in polite company is "phooey!"

 

Proceed with caution, especially with a child's developing brain...............

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Hi Nola,

When my oldest son was 10 years old(now 17), he started ticcing badly and at the time I didn't know about the natural alternative. He also suffered from ADHD. We put him on a low dose of Tenex and I have to say that he didn't have any side effects and it got rid of his tics. He stayed on Tenex for about year and then we took him off for the summer and he never went on it again and he also never got tics again. In his case, the tics may have just been transient, but my brother has TS so there is a genetic background. My youngest(4 years old) has also started some tics, I am trying to stick with the natural way, but really when he gets older and if I need to go to the medication route, I will certainly not rule it out. Remember not everyone reacts badly to medication and in some cases it can be a good thing to get a child through those very tough adolescent years when the tics exacerbate. Oh and my brother who had TS really bad doesn't have much tics now. He is 43 now.

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We tried Intuniv last year and we did not have good results. She did not have improvement on tics and it caused her OCD to become severe.

 

Fortunately, when we stopped it we returned to baseline. I know Intuniv has helped many people though so it really is an individual thing. Just proceed slowly if you decide to try anything and don't be afraid to say no to the doctor if you don't feel good about it.

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Hi, I was diagnosed with Tourettes, OCD, and ADD when i was about 10 years old. I had severe tics. head shaking, neck jerking, grunting, throat clearing, and many more. my parents were hesitant to put me on meds as well. my tics got so bad though, that i would call home each day to ask if i could leave school. my parents realized that if i wanted to live, a healthy, normal life, then I would need the extra help from meds. my grandparents were totally against it, but my parents were desperate. i have been on countless medications over the years: risperidal,clonodine, orap, tenex, and many more. Yes the side effects aren't always the greatest. but to me the weight gain, and tiredness were worth it. I am now a college graduate with a full time job. It might sound really scary, but it's all about finding the right meds. you just have to keep at it. hope i helped ease your mind.

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  • 4 weeks later...

i know I am in the minority on this board, but chose to medicate my son after his tics were interfering with his school work, peers, and other things. It has been one of the best decisions I have made for him and it has been great for us.

Ryan started ticcing when he was 3 and TS runs in my exhusband's family. I tried the natural route, but alone nothing changed. By first grade his tics were affecting his abilitly to get his school work done and he was having a hard time with his peers because honestly his tics were so annoying.

Ryan started on clonidine when he was almost 7. He started on a very small dose and worked his way up as he has grown to what he takes now. At first the side effects were there. He would take his pills and be asleep within 30 minutes. Also, he was much more emotional and would get angry quickly. Through trial and error I adjusted his dosage (slowly) and the time of day he takes it. He has been pretty much tic free for 2 years, has no side effects and is doing very well.

He also has severe adhd and last year we started him on Strattera. Once again, it changed everything for him when it comes to his focusing and hyperactivity. He has made so many marked improvements.

Along with the clonidine and straterra I give him Vitaspectrum mulitvitamins and B12. the vitamins are designed for children on the spectrum.

With the combination of the clonidine, straterra, and vitaspectrum I have happy, healthy, 9 year old boy!

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My son is 17 and uses meds. They have been a lifesaver for him. I did try all the diets , supplements, vitamins, heavy metal testing, metal detoxing, IVIG, you name. And thousands of dollars later here we are again doing the meds. I really think QUALITy of life is also very important. Our kids need some relief. But I needed to know I tried everything "safe" that I could for my son. But I spent LOTS of money on all these other things. I'm not saying dont try it. SOme have had results. But I am just telling you from our experience. ANd my son was diagnosed at the age of 6.

I know its a very hard decision. Good Luck.

Kim

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My son is 17 and uses meds. They have been a lifesaver for him. I did try all the diets , supplements, vitamins, heavy metal testing, metal detoxing, IVIG, you name. And thousands of dollars later here we are again doing the meds. I really think QUALITy of life is also very important. Our kids need some relief. But I needed to know I tried everything "safe" that I could for my son. But I spent LOTS of money on all these other things. I'm not saying dont try it. SOme have had results. But I am just telling you from our experience. ANd my son was diagnosed at the age of 6.

I know its a very hard decision. Good Luck.

Kim

 

Hi Kim

I presume the meds worked? What ones did he take? I have to say meds scare me especially as the doctors seems quite reluctant to put kids on them due to side effects. However, if I need to I will also resort to them. We have to do the best for our children.

Sal

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I have been on 0.025mg of Clonidine nightly for about two years and it has greatly reduced my tic.

 

Please note this is a very small dosage; it is 1/4 of a 0.1mg pill.

 

I started on 0.05mg (1/2 of a 0.1mg pill) but I was having some strong side-effects.

 

I weigh around 160 for reference.

 

Seriously, 1/2 a pill put me to sleep. I have no idea how people can take multiple Clonidine pills per day, although maybe if your blood pressure is high to begin with it might not have such strong side effects (since Clonidine is a high blood pressure medicine).

 

I know this is entirely anecdotal, but I swear that when I eat pomegranates (or rather, their seeds), it also helps reduce my tic. Unfortunately, pomegranates are sometimes expensive and not always in season or available.

 

It is hard to find information about medication to control tics, but I spent a great deal of time reading studies and journals and other sources and have compiled everything I found here into one page for reference. Sorry the website design is kind of ugly. I know I need to clean it up a bit:

 

Tourettes treatments

 

That link will take you to the page. Everything is arranged by drug type. Hopefully it will help you if you're looking for more information (and so you don't just blindly take Haldol if the doctor suggests it as a first line of treatment).

Edited by guy123
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  • 2 weeks later...

I have been on 0.025mg of Clonidine nightly for about two years and it has greatly reduced my tic.

 

Please note this is a very small dosage; it is 1/4 of a 0.1mg pill.

 

I started on 0.05mg (1/2 of a 0.1mg pill) but I was having some strong side-effects.

 

I weigh around 160 for reference.

 

Seriously, 1/2 a pill put me to sleep. I have no idea how people can take multiple Clonidine pills per day, although maybe if your blood pressure is high to begin with it might not have such strong side effects (since Clonidine is a high blood pressure medicine).

 

I know this is entirely anecdotal, but I swear that when I eat pomegranates (or rather, their seeds), it also helps reduce my tic. Unfortunately, pomegranates are sometimes expensive and not always in season or available.

 

It is hard to find information about medication to control tics, but I spent a great deal of time reading studies and journals and other sources and have compiled everything I found here into one page for reference. Sorry the website design is kind of ugly. I know I need to clean it up a bit:

 

Tourettes treatments

 

That link will take you to the page. Everything is arranged by drug type. Hopefully it will help you if you're looking for more information (and so you don't just blindly take Haldol if the doctor suggests it as a first line of treatment).

 

I've been doing the alternative route since Oct 2nd. I know the day, because it was the day I had such severe tics that I decided I'd do whatever it takes to solve it. Prior to the alternatives, I was on tenex, clonondine, then finally went to tetrabenazine which is an orphan drug approved by the FDA only for Huntington's disease, but known to help with TS and NOT lead to the possibility of tardive diskinesia (probably misspelled). Note, that I had dropped all meds around June of 2010 as I somehow went from what was mild OCD to somewhat rough OCD and I finally had to start taking OCD meds as well - and for some reason the combo of tetrabenazine with the OCD meds (standard SSRI's) was next to impossible to handle. Taking one or the other -- no problem -- combining them -- horrible!!

 

today I am at my absolute wits end - I told my wife today that I'm done with the diet - it does not work for me. I don't understand why, but I just can't get it to work. I was pretty upset, and told my wife that everyone on here that is having success with the diet are children who don't have it as severe as I do - so for them it works, for me it does next to nothing. I'm also on the bontech supplements - again, expensive, but worth it if I actually saw results.

 

I'm 43 years old, and still do not understand why I was unable to shake this TS as it appears most children do when they become adults. It's so baffling to me, and extremely frustrating. I tried finding a support group in my town, but finding one that has any adult member with TS seems to be near impossible - probably because it's just so rare for adults vs. children....

 

Anyway, long story, but I'm this close to going back to my regular meds. I'm trying to be strong and not do it, but to be honest, I am just not seeing results from the diet and it makes it hard to stick to a diet that is difficult to begin with (especially when on vacation where it's so hard to even find a place to eat) if it appears to do nothing for you.

 

If nothing else about the diet, I have weened myself off of caffeine, diet soda, high-fructose corn syrup, alcohol, and foods with artificial colors/flavors - things I shouldn't have been consuming anyway.

 

I have asked for a list of recommended doctors (hopefully for adults) from my local TS support group, and do intend to talk to one of those doctors.

 

Rick

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Rick, I'm sorry to hear you've put so much into the diet and even the BonTech, without the results. Even though age may be a factor, six months would seem to be enough time to at least start to notice things coming into balance. I can imagine your frustration.

 

Have you consulted with an environmental (or other less traditional) dr.? It ended up being a coincidence that that's the kind of dr. we consulted, but some of the things we've done, following his advice, have been very helpful and informative. We had urine analyses run to evaluate neurological transmitters and other systems that can adversely effect neurology. If you were to find a dr. able to recognize the usefulness of tests similar to these, maybe you'd find some helpful direction. Maybe you would learn something about the BonTech supplements; maybe they contain something that antagonizes your particular neurology, or lack something you could use. I'm not sure a traditional medical consultant, if that's the kind you're thinking of consulting, would be able to even look in directions like these. The three from whom I received feedback prior to exploring other avenues certainly were unable to do so.

 

I'm sorry for yor frustration. From even my short time on this board, I know that all the answers aren't always out there. And that it's hard to keep trying. I wish you good luck as you work forward.

 

Chris

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Hi Rick, I too am sorry to hear you are feeling so much frustration, so much work and no reward!!!! Just curious...have you tried anything other than the BonTech? I have seen that some have great results and others not so much or even increases. If I'm not mistaken they have soy in them, could soy be a trigger for you? Maybe trying just a good clean multi and continuing diet may be helpful as a last ditch attempt. I don't know if it's harder the longer you have had this but stands to reason that getting at our kids young allows more healing and quicker results?! Did you see any results at all from removing any foods? Seems to me the key is getting just the right balance between what the body shouldn't be having and what it isn't getting. So maybe trying a different way of getting vitamins and minerals may be helpful. I think that the multi that Chris uses also has adult version and I know the one my son is on does as well. Could there be an environmental factor that hasn't been found? We can't use anything but all natural cleaners, body washes etc for our son. Our town water was a factor because of the chlorine, no candles or scented products etc. I give you credit for staying with it this long without much result, and I really do hope that you can find SOMETHING to minimalize the tics. My husband's tics decreased into adulthood so they are very minimal but I know that even the one's he still has are frustrating for him and tiring in every sense of the word! Good luck and I hope you can find what you are looking for.

 

Megan

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Hi Rick, I too am sorry to hear you are feeling so much frustration, so much work and no reward!!!! Just curious...have you tried anything other than the BonTech? I have seen that some have great results and others not so much or even increases. If I'm not mistaken they have soy in them, could soy be a trigger for you? Maybe trying just a good clean multi and continuing diet may be helpful as a last ditch attempt. I don't know if it's harder the longer you have had this but stands to reason that getting at our kids young allows more healing and quicker results?! Did you see any results at all from removing any foods? Seems to me the key is getting just the right balance between what the body shouldn't be having and what it isn't getting. So maybe trying a different way of getting vitamins and minerals may be helpful. I think that the multi that Chris uses also has adult version and I know the one my son is on does as well. Could there be an environmental factor that hasn't been found? We can't use anything but all natural cleaners, body washes etc for our son. Our town water was a factor because of the chlorine, no candles or scented products etc. I give you credit for staying with it this long without much result, and I really do hope that you can find SOMETHING to minimalize the tics. My husband's tics decreased into adulthood so they are very minimal but I know that even the one's he still has are frustrating for him and tiring in every sense of the word! Good luck and I hope you can find what you are looking for.

 

Megan

 

Megan & Chris,

 

Thanks for the great tips. I did decide to NOT go down the path of standard drugs just yet. I know that tetrabenazine works, so it's tempting, but I recall that in the long term it seems to make OCD flare up (or at least that's my theory) - so I am trying to avoid that. I also know that tenex just knocks me out, as my blood pressure is on the low side to begin with. However, I MAY consider adding tenex or clonidine at a low dose just to see what happens - however I seem to recall that it knocks me on my butt. (been 10 years, so hard for me to remember right now)

 

What I decided to do for now is try to find some other options over bontech. I know others use multi-vitamins, etc that seem to work for them, I just need to contact them and get their lists. (I think Kevin in MA) who has the blogging our journey thread going has a pretty comprehensive list

 

I did check the bontech and saw no signs of Soy - but did see soy in some cal/mag/zinc multi's that I was taking - so stopped that immediately

 

I also look at my soap I use (Irish spring) and saw coconut oil along with other things I don't recognize, so asked my wife to pick up some natural soap today. I'm already using natural shampoo.

 

 

Do either of you (or anyone reading this) know of a good clean multi that would be a good replacement for the bontech program? I'm happy to ditch bontech if it just doesn't work for me. I know the bontech, beyond just being a multi, includes the grapeseed extract as a separate pill as well as fish oil (which I stopped taking just to see what happens)

 

Thanks again

Rick

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Hi Rick, we have had great results with Progressive Multi vit/mineral for our son. They do have an adult version although I can only speak for the children's first hand. Chris and Lisa both use Kirkman Spectrum Complete for their kids and have also had good reports as far as I've seen.

Good move on the soap to rule out scents etc for triggers. Our son and to a lesser degree my husband definately do better when ALL things are as natural as possible. Dishwasher det., laundry soap, cleaners, even toothpast for our son! It doesn't hurt to go that route regardless so at least your possible triggers are diminished some.

Watch for pesticides on food too, if you don't already go organic. The diet changes alone were good but saw much bigger results when we got off town water and went as local and organic as possible for our son. I'll compare the adult Progressive to the kids one just for curiousity when I get a chance. Chris can probably give you more on the Kirkman multi.

Best wishes,

 

Megan

 

Just noticed I was repeating myself on the natural cleaners...sorry to be redundant...

Edited by mommyfor4
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We started using Kirkmans Spectrum Complete powder several months ago after I compared between it, which Lisa uses, and Progressive, which Megan uses. I opted for the Kirkmans soley due to some hunches I had regarding things that were affecting my son. While I was initially drawn to the Kirmans for the ingredients supporting sulfation, it also contains a couple of ingredients supporting neurotransmitter inhibitors, something which, through testing, I knew would be beneficial for my son.

 

While others have made great strides without all the testing, and my hat's way high off to them, if your insurance will cover it, it might be worth your effort to get some tests run. You never know what you might find out : )

 

Chris

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