Newly Diagnosed Tourettes

[Maryuofs]

My son age 11 was diagnosed a month ago with Tourettes. Initially it was just facial tics... nothing too serious... we were devastated at the time but in hindsight... I would give anything if he could just have those facial tics rather than the violent seizure like, transient (seem to move all over) full body tics that he now as. They are so scary since that seem to involve every muscle in his body. He is extremely intelligent so we refuse to give his the Nortripteline the doctor (neurologist) ordered with the precaution that his heart could stop anytime on it so he must be constantly monitored. He also ordered behavioral modification of reading the Bible... I offered that he read higher order thinking novels, but doctor said it had to be the Bible???? Pediatrician didn't agree...sending him to CHOPS in Philly. Is there a vitamin supplement or food that reduces tic or has worked for others that might help to reduce tics... his tics are severe... they resemble grand mal seizures except that he is very conscious of what is going on. No set pattern...sometimes only a 3-hour window a day of mild tics. He has been out of school about 3 1/2 weeks now and we are basically homebound... can't go anywhere cause he can't function. Mostly rolls on the floor with arms and legs going every which way swinging violently and trunk, neck and face in spasms. Does any one have any suggestions? Other 2 daughters are in med school; he is so smart he could save the world. I want to protect his brain at all cost.

[Chemar]

Hi and welcome

 

I am a Christian and I sure recommend reading the Bible to anyone

 

BUT

 

I am totally astonished that a neurologist would "prescribe" Bible reading for "behavioral modification" in someone with a neurological disorder

 

anyway

 

good for you in turning down that med...it has a horrid list of side effects!

and honestly, from what you have written, you may want to find a different doctor...........

 

If you take a look at the link in my signature below you will find what helped my son, who was diagnosed 10 years ago and had very very severe tics and OCD. He will be 20yo tomorrow and is doing really well

 

there is a specialized range of supplements formulated by Bonnie Grimaldi that many have found very helpful http://www.bonniegr.com

I based my son's supp plan on Bonnie's initial research

 

there is a lot of other valuable info here on other things that can help with tics

 

dont hesitate to ask questions...we are all here to help each other

 

by far the most important supplement is magnesium

[faith]

hello mary, welcome,

gee, I am sorry to hear of this kind of tics. I am guessing he's had a nuero work up to rule out siezures, correct? I kind of went "huh?" about the Bible reading as behavioral modification too. oh well.

 

mary, since you say your boy is 11, could I ask if he had any recent vaccinations, like the Dtap and varicella that is due at this age? flu shots? you say he had a some facial tics before, is that all? hol long and what age did he start tics? any other issues? any vocal sounds? If he never had any vocal sounds, then technically he should not be diagnosed with tourettes yet.

 

I don't know if you've started with any dietary modifications such as keeping away artificial colors/flavors (candies, packaged cakes, etc.) for a time to see if it helps. these kinds of things can be toxic to kids with neuro issues. Also high fructose corn syrup is another one to watch.

 

As far as supplements go, try to start him on some magnesium, some here like a product called "Peter Gilliams Natural Calm". it is a powdered magnesium that disolves in hot water and you can add a little juice. magnesium is calming to the nervous system. Some here swear by some B6 along with it, maybe 50 mgs. or so, as they work well when given together. You can also try some epsom salt baths as this is also magnesium and can be calming for the body tics, soak for at least 30 minutes in about 2 cups of salts to a warm/hot bath.

 

I might also recommend looking at the supplements by Bonnie Grimaldi whose son had tourettes and she researched and formulated these vitamins. the website is 'bontech vitamins", you could read about them there.

 

I don't know what to say about the med as I've never heard of that one. Another poster here called 'myrose' has a daughter whose tics sound as you described and she had great success with an anti-siezure med called 'topomax', altho I am not suggesting you get that, just putting out there that this child had full jerking body tics and they were very difficult on her, and for some reason that seemed to be the only one that helped. you can look up some of her posts by using the search tool at the bottom.

 

regards

Faith

[Maryuofs]

Thank you very much for your kind responses. Dylan has had a work up though he was not checked for strep... doctor hypothesized that it probably wasn't from strep. He had mild tics when he was 8 but they always moved around and we assumed they were environmental...he is immune deficient but not real bad and has a lot of allergies, is asthmatic too.

I have printed both your and Cherri's responses and perhaps it will be a help...we are frantic to get some help for him. In the past year he received 2 commendations from Al Gore, appeared in a feature article in Jacques Cousteau magazine, and has done public presentations. This fall was called to interview to speak before the United Nations. He makes movies, writes poetry, composes and plays 5 instruments… is writing a book… list goes on. He is also heading up a research project on endangered bats. He is very environmentally active… organizes time really well. As I said he is so smart he could save the world.

He shows tremendous creative potential so any of the traditional medicines would probably put an end to that creativity. I believe with out the constant development of his brain, he would not get the creativity back when the medicine is stopped… as when children who are not challenged, loose the opportunity to reach their potential… they tend to stagnate … drift toward mediocrity. I am not willing to take the chance with him. I am going to look into your advice and approach it slowly. At this point I don’t have the option to rule out medicine entirely because we can’t go on this way… but I am going to try other options first.

He is getting vocal tics as well and one that tends to close his throat, which is the most frightening... he gasps for air. Thank goodness that one has seemed to stop for a bit. I noticed things were much worse when he had a drink with red dye and then one with blue dye... so yes I have changed his diet.

 

I will start him on the baths this evening and try to find those supplements.

 

Thank you so much, you seem very intellegent. I appreciate your time and efforts.

 

Mary