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Hi! New here and need help


crazy
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Hi, I am new here and could use some help. My 8 year old son has a tic disorder. He has exhibited hard eye blinks, facial twitches, jaw stretching, neck jerking, and now lip puckering. His pediatrictian prescribed clonodine and that was useless. I refused to try the other medications. We are now using kids Calm and it seemed to calm his eye blinks. I would like to try new things but don't know where to begin. What kind of doctors should we see allergist, neurologist, environmentsl dr. , naturopath. I need help, this is so upsetting for me. My son handles it better than I. Does anyone know who to see in Illinois? Please help if you can. Thank you!

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Hello, I just wanted to welcome you to the boards. My 9 year old started ticcing about 9 months ago and I still haven't found the cause, or the contributing factors. One thing I learned from coming to the boards here is that what works for one child may not work for another. If you do lots of searching you'll see many people refer to Bonnie Grimaldi's vitamin plan for Tourette Syndrome to be very helpful. Basically, B vitamins, Omegas, a good multi vitamin, and magnesium are considered helpful. If you go to www.bonniegr.com you will find the supplements and some helpful tips from her about nutrition, etc.

 

When it comes to doctors, I have found (as have most folks on this board) that conventional medicine is not always going to help you. Many times you'll get a prescription and a ,"It's just a tic disorder and will probably clear up soon". I would say a DAN doctor, naturopath, or environmental dr of some kind would be your best first choice. There is a mom on here who's in the Chicago area(can't remember who, though) who might be able to give you a recommendation. I live in AZ and have found there are a few good alternative doctors who work with neurotransmitters and balancing them with nutrition and supplelements: I just haven't gotten around to seeing them. We have a good naturopath right now but I don't think she understands neurotransmitters as well as the others but she's been very helpful in allergy treatments, etc.

 

The number one thing I know folks will tell you to do here is to cut out the junk: no high fructose corn syrup, food colorings, MSG, food additives, aspartame, etc. Also, checking for environmental allergies like chemical sensitivites, etc. can be helpful. Keep a log of what your child eats, where he's been that day and if the tics increase or decrease depending on what's going on in your lives. This will give you a clue as to what triggers the tics. It could be food, allergens, stress, etc.

 

have a great day!

 

Bonnie

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crazy,

:) (we all are here)

Could I ask you how long your son has had tics? Have you done anything else in the past besides the kids calm? Were the tics constant or were there times when the blinking subsided in the past without trying any interventions? Are you looking at changing the diet in the way of removing obvious artificial junk? Does/did he consume that stuff on any regular basis?

 

 

Faith

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crazy,

:) (we all are here)

Could I ask you how long your son has had tics? Have you done anything else in the past besides the kids calm? Were the tics constant or were there times when the blinking subsided in the past without trying any interventions? Are you looking at changing the diet in the way of removing obvious artificial junk? Does/did he consume that stuff on any regular basis?

 

 

Faith

 

Hi Faith~ thanks for responding. My son had jaw stretching about 1 1/2 years ago and it went away. We just thought it was a goofy habit. In mid march he had neck jerking for about 3 weeks and it went away. I mid May the eye blinking started and it was severe. I wonder how he could see anything. I took him to the doctor right away and was given Clonodine which was useless. He started kids Calm and I took away anything with artificail sweetners and tics started to subside in about 2 days. I don't know if that was just a fluke. The lip puckering just started about 2 weeks ago.

My son unfortunately consumes a lot of artificial junk. That is a tough one to completely eliminate. Every parent in my neighborhood is passing out popsicles, kool aide, etc...

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thanks,

I hear ya re the passing out of junk, its all over the place, and I am the "crazy" mother who tries so hard to regulate it (I tend to keep it a secret why I do it). But some limitation is better than nothing.

 

Now I am always wondering about some of us who have seen the tics wane or go away for a time before interventions of any kind. I tend to think that is the way it is in the beginning with the younger ones. So the more we can do to take the compromises off their systems in the early years, hopefully the tics will not escalate in the later years. Time will only tell how any one thing seems to affect thier tics or other issues either positively or negatively.

 

Wish I could be of further help, but I am still sleuthing around myself, even after several years of this. Things are presently much better for us right now, but I can only speculate what is helping (or not). Do alot of reading here and hone in on the things that interest you.

 

Blessings,

Faith

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Crazy (Love the name!),

 

I didn't even have time to finish reading this thread, but I will PM the Illinois member (Chicago area) to ask her for doctor referrals for you and check back later. I think she will suggest allergy testing first; so do I.

 

Tami

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Hi!!!! Your post is like MANY that I have seen here in the last eight months, and very similar to my first post! I agree with Bonnie that what works for some does not work for all.

 

I have had much success with what I have learned on this board!!! My son started with eye blinks, then face twitches, minor vocal tics, and then hard head jerks......so hard that I could not understand how he could see anything while reading!!

 

I took out most of the junk (but had trouble!), added some supplements, and that is when the head jerks started. People here told me that his diet appeared high in saylicilates (and I was so proud of him for eating bowls of canteloupe and tomatoes!!). I reduced those greatly and the head jerk went away. The eye blink disappeared once I added amino acids. Recently I cut his supplements in 1/2 and his nose twitch came back. So, we added all supplements back and he is tic free again. (FAITH....it took a week of full supplements and we saw the results again! oh, and no hot dogs!)

 

So, my recipe is VERY limited preservatives, artificial colors and flavors, and the following supplements:

 

B Complex

Ester C

Flax Seed Oil

Calcium Citrate

Magnesium Taurate

Gaba

Aceytl L Carntine

NAC

Multi vitamin

 

The nuerologist wanted to put him on blood pressure medicine at age SEVEN, but I have found tic control through this site. I have not had to do the food allergy testing yet because what I found here helped for his case. (His tics came on a few weeks after a chicken pox vaccine last August. )

 

I hope this helps!!!! I spent MANY hours researching the information that I found on this site....I hope it works for you!!!!!

 

Oh, and my junk food solution for a long time was homemade brownies from Nestle cocoa, organic sugar, and unbleached flour. Giardelli Chocolate chips don't appear to have any artificial flavors in them???? So, I make oatmeal choc chip cookies for him. They are both REALLY easy to make!!

 

Tracey

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