Where should I start for help?

[browndog]

Hello! I'm new here, and I'll try to be brief, but I have a lot to cover!

 

My husband has had slight tics (head nodding and wrist "flicking") since he was young. His parents were the "just don't do it anymore" type when he mentioned it to them, so he never got any help for them. Later, as an adult, he saw a psychologist who had severe TS. She told him his only help would come from Rx drugs with bad side effects. This was about 20 years ago and his attitude has been "oh, well. I'll just live with it". It doesn't really bother him.

 

When our oldest son was in 5th grade (he's now in 11th), he started getting an eye blinking tic. We live in the Atlanta, GA area, but I kept hearing about Dr. Robbins in FL. I had a phone consultation with Dr. Robbins and was planning on taking my son to him. My husband sort of poo-pooed the idea that TS could be caused by allergies or environmental sources and since my son's tic waxed and wained, I never took him to Dr. R.

 

In February of this year, I spoke to Dr. Robbins again. He sent us a Rx for some Metametrix tests. After he got the results, Dr. R. was going to tell us what to do next. Well, I'm ashamed to admit that I never got the test done on my son. The eye blinking was still coming and going and he wasn't that bothered by it.

 

Now I have something more serious going on with my youngest son (13). He never had bad tics, but he had some anxiety. But for the last 2 months or so he's had a "tickle" on his tongue that can only be relieved by scrapping it with his teeth. He does this scrapping throughout the day if he is bored. He gets upset that he does it and wants to stop. I asked him if he felt any relief by doing it and he said "not really". I know a lot of people feel relief by doing their tics. He also has to kick out his legs several times until they "feel right" when he's in bed. He does the same with his arms and he cracks his knuckles a lot.

 

I had allergies as a child and eating apples or peaches made my mouth "itch", but it I out grew that allergy. My tongue never itched.

 

I have been reading a lot here and I'm really interested in some of the vitamins y'all have talked about. I've learned a lot about magnesium on my own.

 

So, I guess my question(s) are:

 

1. Have any of you seen a Dr. somewhere in the South (Georgia, Alabama, Tennessee, NC, SC)? A lot of cities in these states are a closer drive for me than South Florida, where Dr. Robbins is.

 

2. Are the allergy tests a "must do"?

 

3. What vitamins should I start with?

 

4. What do y'all think about "Calm"? I gave it to only twice, so I haven't given it a chance. Is it the best source of magnesium to give my sons?

 

I'm sure I have more questions, but I can't think of them right now!

 

Any help I can get is greatly appreciated! Thank you!

[Chemar]

Hi and welcome

 

it does sound like there is a family history of TS so at least that gives you a foundation to work from

 

how interesting re the psychologist who told your husband that...sadly we believed the one here who told us that about our son and both she and a neuro kinda bullied us into putting him on meds...with rather horrid side effects.

 

you can read my son's background in the signature link in my signature below

 

the tongue scraping that you refer to is a form of tic...many people with TS have OCD as well and the two can morph where tics become OCD and vv. It is referred to as tourettic OCD

 

we have found magnesium by far the most beneficial supp for helping to calm tics. The Calm products are good because they work quickly, as does epsom salts (magnesium sulfate) used as a soak (2 cups epsom salts in a tub of warm water, soak for about 20 min)

 

although TS doesnt yet have a "cure" as such, many of us have seen great improvement in the tics from supplements and also careful diet and environmental clean up....once you find if there are any food or environmental allergies/sensitivities, you will see improvement by removing the offenders. Most kids (and adults) benefit from avoidance of all artificial additives (color, sweetener, MSG, high fructose corn syrup etc)

 

do also look at info on PANDAS which is related to strep...altho you have family history of TS, yet strep (even without manifesting as the classic strep throat) can be at the root of the escalation in tics etc

 

 

there is much more info but that should give you a start

 

[browndog]

Thank you, Cheri.

 

I have peeked over at the PANDAS page (after I did some research on what PANDAS was!). I actually had strep throat in October and my son wasn't feeling well, either. His strep culture was negative, though. But does that mean anything?

 

I haven't read your son's history yet, but I will. Do you have him on any of Bonnie's vitamins or supplements? If so, which ones?

 

Thanks!

[Chemar]

Hi

 

we havent used Bonnie's BonTech supps but I did base his supplement program on her initial research/supplement list which she published on the internet. He's been on supplements for 10years now and his tics are very mild, compared with really severe back then

 

Magnesium is definitely THE key supplement for my son with regards to his tics

 

PANDAS can often be missed if they are just looking at strep throat cultures, but if you had strep, it is worth looking at as kids with PANDAS can show elevated tics, OCD etc when exposed to strep, even tho they may not show symptoms of strep

[browndog]

PANDAS can often be missed if they are just looking at strep throat cultures, but if you had strep, it is worth looking at as kids with PANDAS can show elevated tics, OCD etc when exposed to strep, even tho they may not show symptoms of strep

 

So where do I go from here (in regards to strep)?

 

Thanks!

[Chemar]

best to start a thread on our PANDAS forum as well as the parents there are most clued up

 

I believe many use what is called the Cunningham test to determine whether PANDAS is also a factor.

[laurena82]

Browndog,

 

Just reading the family history with mild tics and allergies(itchy mouth)....there are definite correlations between allergies and tics.

 

Dr. Robbins or other environmental MD's would most likely be your best/most comprehensive bet.....but if you feel too isolated from that, etc, you could start by doing what I did with my son 15 (plus) years ago.....

 

I first took him to a good chiropractor who practiced "applied kineosology"......this is muscle testing....where you bring sample foods that the child eats regularly, and he tests muscle strength to the foods. You can then identify ones that negatively impact (similar to electrodermal testing of energy fields), and then you do an elimination diet of actually removing those foods from his diet, and looking to see if the tic situation improves. Put the foods back to see if tics return.

 

Others here have good advice re: other avenues to explore.....(supplements, etc)

 

It seems like so much is trial and error.....

 

((((((((((Hugs!))))))) and BEST WISHES!