Help With Suppliments!

[lovmyboyz]

I am new to this forum but not new to dealing with tics. I have 16 year old and 8 year old both have tics. My 16 year old has had them on an off since age 6 but in the last year they have become increasingly worse and more continuous. I took him to a nutritionist about 6 onth ago and he is on numerous supplements. They seemed to be helping but for the last few weeks they have come back intensely. I read thru Shelia Rodgers book and viewed Bonnie Grimaldi's products but not sure how to figure out the correct amounts and types of supplements to go with. How do you get started with knowing what to start with? I see several supplements that are suggested but how to know the amounts and what to start with and increase, how does a parent figure this all out?? He currently takes:Prim Poyal 1500 mg, Gaba 1000 MG, Vit E 400 IU, Magnesim 200 MG, Aminoplex 740mg. ANy suggestions or links that can help me figure out what to add or change would be so helpful! THanks so much.

[Chemar]

Hi and welcome

 

working with a good doctor who can guide you is a real plus in all this

 

Bonnie's supplements are formulated to take the guesswork out of what and how much, but even just reading her product ingredient list can give you guidelines on what to try and how much. That is how I formulated my son's supplement program years ago, before Bonnie's supps were on the market, and she had freely posted about what she was giving her son. It worked so well for mine, with some stuff added and some removed based on his individual needs) that we have never looked back! (see my signature link below for details)

 

just a comment on what you are giving so far.....200mg magnesium is low for a 16yo with tics....my son was already getting more than double that daily when only 12yo. Also, do consider trying the epsom salts baths...they really do seem to help a lot! We also now use the Natural Calm inonic magnesium drink mix and my son finds rapid relief from that when tics waxing

 

you mention and aminoplex product....do be aware that some amino acids can INCREASE tics because they are dopaminergic (eg tyrosine and phenylalanine, amongst others) so it is often suggested that people with TS not take a comprehansive amino acid supp but rather focus on the amino acids known to help with tics (eg taurine, l-carnitine etc) but even there, proceed with caution and add only one at a time till you are sure of positive effect.

 

also, the Royal Prim is an excellent supplement, but people with tics tend to need more omega 3 while the primrose oil is omega 6. Some people add fishoil to increase omega 3, but be aware that some TS patients seem to tic more with fishoil supps and do better on flaxseed oil

 

well, I hope this helps a bit and do just keep asking questions and reading thru the posts here, especially the helpful threads compilation pinned to the top of the board

http://www.latitudes.org/forums/index.php?showtopic=2459

[lovmyboyz]

Hi and welcome

 

working with a good doctor who can guide you is a real plus in all this

 

Bonnie's supplements are formulated to take the guesswork out of what and how much, but even just reading her product ingredient list can give you guidelines on what to try and how much. That is how I formulated my son's supplement program years ago, before Bonnie's supps were on the market, and she had freely posted about what she was giving her son. It worked so well for mine, with some stuff added and some removed based on his individual needs) that we have never looked back! (see my signature link below for details)

 

just a comment on what you are giving so far.....200mg magnesium is low for a 16yo with tics....my son was already getting more than double that daily when only 12yo. Also, do consider trying the epsom salts baths...they really do seem to help a lot! We also now use the Natural Calm inonic magnesium drink mix and my son finds rapid relief from that when tics waxing

 

you mention and aminoplex product....do be aware that some amino acids can INCREASE tics because they are dopaminergic (eg tyrosine and phenylalanine, amongst others) so it is often suggested that people with TS not take a comprehansive amino acid supp but rather focus on the amino acids known to help with tics (eg taurine, l-carnitine etc) but even there, proceed with caution and add only one at a time till you are sure of positive effect.

 

also, the Royal Prim is an excellent supplement, but people with tics tend to need more omega 3 while the primrose oil is omega 6. Some people add fishoil to increase omega 3, but be aware that some TS patients seem to tic more with fishoil supps and do better on flaxseed oil

 

well, I hope this helps a bit and do just keep asking questions and reading thru the posts here, especially the helpful threads compilation pinned to the top of the board

http://www.latitudes.org/forums/index.php?showtopic=2459

[Chemar]

hi

 

best to just use the add reply button to get a new message posted here...I see my post quoted but no message from you?

[lovmyboyz]

Ah ha! Thanks! I could not figure this out... I wanted to say Thanks for all the info. I am going to go thru all the info and see what to add to his current routine. He only has tics not any other issues with ocd or other things I have read about here. My younger son however does have OCD and sensory issues. He has started with tics as well. So I am taking in all the info I can to be better prepared for him as well. My problem is that my 8 year old will is so sensitive to texture and smell that it is nearly impossible to get any suppliments down. Liquid is all he can tolerate. I have used the Natural Calm that was mentioned, my 16 year old takes his suppliments with it. He had soda over a weekend camping trip and on the tics came! The worst I have seen in years! I just did not expect it to be going on 3 weeks later. Is it common for a trigger like soda to last for weeks after? So many ?'s . I at least feel hopeful now that I have a resource for information.

Thanks again...

[faith]

luvmyboyz,

hello and welcome,

what kind of tics increased in the past few weeks with your 16 year old? you feel it was soda, but it is lasting a while? have you added any of those supplements at around that time, maybe a few days or prior to that camping/soda excursion?

 

Faith

[lovmyboyz]

nope, nothing new. He was using the suppliments as usual and then the tics started. I asked what had changed and he told me he had soda and some drink with red food coloring. It has been 3 weeks of not soda and still the tics have not eased up???? Eye twitching, a weird burping type noise and flexing of the abs. The abs flexing is new and he has never done this before. My 8 year old however does the abs thing all the time.

[faith]

well, I'm inclined to think that soda and this evil red drink could certainly be a nice trigger for tics in some kids, altho I'd also like to think it would decline after a week or so. But, I suppose its possible his body may have a hard time processing this sort of toxin and it may just take a few weeks for thngs to settle? have you noticed this before, a definite increase when he has colors/dyes or artificials? so hard to know for sure.

[lovmyboyz]

The eye blinking yes with the soda. The new tics I have no idea! Has anyone noticed an increase of tics or new tics around the age of 16? His hormones are crazy, his face is breaking out and now the tics increased? Can it be the age?

[faith]

Any recent illness maybe? I'm thinking when our kids get sick, it kind of lowers their immunity for a bit and their susceptibility to their triggers are heightened, as well as taking a little longer to recover from the assault? don't know, just brainstorming.

[lovmyboyz]

No recent illness. I have no idea other than the caffine and red drink... I do notice that when he gets upset or stressed the tics increase. It is like putting a puzzle together. I feel like the more time I spend trying to figure it out the more attention I draw to it. He is so sick of me asking what he ate, what time he went to bed, if he is upset about something on and on and on.... Exhausting for us both but not sure what else to do when I am playing detective everyday!

[Fixit]

i know my kid reacts to red dye.

this may not be a popular idea...and i am not having great success with this..maybe because it's like trying to catch a running horse,..and dr g said my boys mouth grew so much in 6 weeks he is making a whole new appliance...my ds is 9 going on10...though there were 2 days with almost no tics before christmas..

but if you look at the the tooth eruption chart your wisdom teeth "typically come in between 17 and 21..but my ds had his first teeth at 2 months and a friend didn't get her wisdoms till 29. teeth seem to be an across the board issue.

and if you see a tmj guy ...they are not all the same......the nerve location in these guys might sit different for them that effects them where for you or i it wouldn't be an issue...

just another option

 

i would love to here from everyong what supplements worked for them...i've tried alot and i can't seem to pinpoint any...maybe i need to try the L's and the baths

[CarolynN]

Hello,

 

I wanted to share that my son is VERY, VERY sensitive to MSG/free glutamate. Most people think MSG is just in Chinese Food but it is hidden under many, many different names. It is actually considered to be something called "free glutamate". For people with nervous system conditions when it enters the body it can be of real problems. Here is a posting I did about it a while back http://www.latitudes.org/forums/index.php?...d&pid=17225 .

 

What I have learned since is to give my son B6 and Glycine to settle his body down after accidently coming in contact with something that has free glutamate in it. I give him an additional 100 mg's, on top of his already 50 mg's he takes a day, for a least 3 days. Then I give him up to 10,000 mg's of glycine for up to 5 or 6 days. Usually I only have to do this for about 2 days and his body snaps back. Daniel standardly takes around 4,500 mg's of Glycine a day. If you decide to do glycine just read up on it because I know there are some people who can have issues with it.

 

My son, a few months back, started having a lot of tics again. It was as if he had come in contact with MSG/Free Glutamate. I did some research and was able to figure out it was the Evaporated Milk. In evaporated milk is something called carrageenan. When I read up on it I found out that people who react to MSG/Free Glutamate will have a similiar reaction to it. Again it is the way the food enters into the nervous system.

 

I would definitely look into various names of free glutamate. I think for people with tics this is a huge part of the puzzle only because I know how difficult it is on the nervous system.

 

As a side note, once I figured out all the products that has MSG/Free Glutamate in it. It took at least a week to get it out of Daniel's system. But once I started doing the B6/Glycine combination it was much faster.

 

 

Carolyn