Meds

[Jen Padgett]

My son is 9 years old and has ts, 7 months now. Mostly eye rolls, twitching. On a bad day he has legs swing, arms swing, falls over and off chairs. I swear his head is going to fall off with all the head jerking. I know by reading many of you are doing a natural path. My son is on 50mg. Topamax and started 0.1 mg Clonidine two days ago. Maybe it's just me but he's doing better already. As with TS the symthoms change every moment of everyday. I'm praying this will give him some relief. I have decided to home school him for the first time ( he's going in the 4th grade). He doesnt have ADD or ADHD, he did have OCD for about 2 months buts thats gone for now. I guess what I need to know is, how do I get started in a more natural path? I'am not against tradional meds. I'm just wanting to keep all our options open. Should I start with skin test, acupuncture, biofeedback treatments, homeopathic remedies? There's so much out there I don't even know where to start. Any help would be great. Also we live in Fredericksburg, Virginia and I would love to get my son involved with other kids with TS. If you know anyone around my area or maybe a support group that would be great. Hope to hear from you all.

Thanks,

Jennifer

[Chemar]

Hi Jen

 

As your child is on prescription medications, I would strongly advise that you should attempt to find an Integrative or DAN doctor, or even an osteopath, to guide you re natural/alternative treatments. Because even simple supplements can interact with medications, it really would be wise to have professional guidance on this.

 

Also, as the medications alter so many things in the body, the tests etc that we have used can be "skewed"

 

I would suggest that you can safely start with careful diet control by avoiding all artificial additives, and supplement with a good multivitamin/mineral (no artificial colours,or flavours!!)

 

Then get a physician knowledgable on alternative medicine to guide you re further supplements

I am going to bump up a couple of threads here that can help you get info

 

IMHO acupuncture is ALWAYS beneficial!

[kim]

Jennifer,

 

This is from an article I was just reading this morning.

 

Alternative Medicine Review, Dec, 2002 by Parris M. Kidd

Abstract

Clonidine is a presynaptic alpha-2 adrenergic receptor agonist that

up-regulates adrenergic transmission. (123) It may reduce

hyperactivity, impulsivity, and irritability in the short term; but

tolerance develops over time. Adverse effects include drowsiness,

decreased activity, and hypotension. Its B:W ratio of 2.2:1 is better

than most other autism drugs.

 

What this describes, is what happened with my sons. Clonidine did help my oldest son, with sleep issues, get to sleep, and also appeared to help lessen the frequency or intensity of tics, but it was short term. The neurologist wanted me to up the dose. I knew functioning at school would be impossible, if we upped the dose enough to control tics.

 

I would really encourage you to follow Chemar's advice. Become as educated as possible, find a knowledgable alternative physician, and get to the heart of what maybe going on with your son physically, instead of trying to treat symptoms.

 

 

Kim

[jjj]

My son is 9 years old and has ts, 7 months now. Mostly eye rolls, twitching. On a bad day he has legs swing, arms swing, falls over and off chairs. I swear his head is going to fall off with all the head jerking. I know by reading many of you are doing a natural path. My son is on 50mg. Topamax and started 0.1 mg Clonidine two days ago. Maybe it's just me but he's doing better already. As with TS the symthoms change every moment of everyday. I'm praying this will give him some relief. I have decided to home school him for the first time ( he's going in the 4th grade). He doesnt have ADD or ADHD, he did have OCD for about 2 months buts thats gone for now. I guess what I need to know is, how do I get started in a more natural path? I'am not against tradional meds. I'm just wanting to keep all our options open. Should I start with skin test, acupuncture, biofeedback treatments, homeopathic remedies? There's so much out there I don't even know where to start. Any help would be great. Also we live in Fredericksburg, Virginia and I would love to get my son involved with other kids with TS. If you know anyone around my area or maybe a support group that would be great. Hope to hear from you all.

Thanks,

Jennifer

 

My son has been on Clonodine for almost 2 yrs with incredible results. He was like your son (when my son was 8). He takes 1 .01mg dose at bedtime and that's it (he gets drowsy and then goes to sleep). No side effects at all during the day. It takes a few weeks-months to really see the full effect, but we saw inital progress by the first week. According to the neuro (and the medical info I've read), one does not develop tolerance. You may need to increase the dose as one gets bigger and gains weight, though.

 

I honestly hate giving meds to a child, but this medication worked for us and we've had no issues. Ofcourse it can be different for others, but he's been virtually tic free. I wish you luck in whatever option you choose.

[Guest]

Hi Jen,

 

I was on Clonidine for ten years. When I was first put on Clonidine it made me really drowsy. After a while it didn't make me drowsy. We weren't able to dose just at bedtime as I had to take it three times a day as it lost it's effect if not done that way for me. Not that it had much effect, but only a little. It didn't help tics much, but helped the mood. Watch your child's blood pressure. I have a friend with TS that was on clonidine and she ended up passing out and had to be taken by ambulance because her blood pressure had become too low with the clonidine.

 

I've been off of Clonidine for over a year now (actually free of all meds). I don't believe that would be possible for me if I wouldn't have started natural treatments. I've been doing supplements for eight years, but didn't check out allergies, acupuncture, etc. until about two years ago. At that point I was able to get off all medications.

 

I also encourage you to follow Chemar's advice.

 

Carolyn