cara615

Ok I just spoke to my son's doctor and she kind of calmed me down. She said what she saw was not severe and that she sees it often so I guess its not the mito disease that I was reading about on-line? Its more of a deficiency that needs to be corrected and she feels that it can be (especially the methylation issues). i guess we just need to plow ahead and see if we see progress. i am glad i have information to work with and not going into this blindly.

My son's big blood test came back and it showed mitochondrial and methylation dysfunction. i am terrified. What does this mean for his future? Does he actually have mitochondrial disease? Will other systems in his body be eventually affected? He does not have any muscle weakness or fatigue or any of the mito symptoms except for the TS. We will be giving him methyl B12 for the methylation issue and I am hoping this helps him but what to do about the Mito? Should I get genetic testing done? I have no idea how serious this is or if it will affect his quality of life or life expectancy. has anyone had any experience with this?

We are seeing an integrative doctor. She is an MD but practices holistic medicine as well. We are on diets changes and supplements recommended by her.

Its day #12 on the NAC for my son and we are seeing a marked difference. He is going hours without a vocal tic. They come in little spurts now as opposed to a contstant all day long thing. Could be waning but this decrease has coincided perfectly with our starting the NAC. For others that don't know what NAC is, its N Acetyl Cystiene - an amino acid that increases the glutathione in the brain and acts as an antioxidant. Yale is currently doing a study on the effects of NAC on children with TS. Study ends in July. There is reason to believe it can help due to a previous study with NAC and hari pulling. Apparently the NAC significantly improved symptoms in over 50% of the participants. I am hopeful that this will help us too. We get results of our "big" blood test this week. The test will let us know what vitamin/mineral deficiencies my son has as well a heavy metal levels and neurotransmitter levels.

We use Nordic Naturals DHA for kids. Its strawberry flavor and my kids have been taking it since they were 6 months old. This is WAY before any thoughts of TS. There is natural strawberry flavor in it and i guess that has traces of corn but seriously. what can you do. i am hoping the benefit of the oil is outweighing the risks of the minute traces of corn.

Thanks Shelley. Our OT was mentioning a listening program. I will pick up the book

Thanks all and Chemar I hope you didn't take my comments as being "testy" at all. I hope I didn't come across that way. I value all the advice you have been giving me. We did another allergy testing on Cole (it was a blood test) through our integrative doctor. It came back with corn (evere intolerance) and wheat gluten (moderate intolerance) and dairy (mild). The doctor told us to only remove corn and wheat. Should I go to a western allergist and get another test done to confirm? The test that was performed was called and ALCAT. Have you heard of that before?

Chemar - i think the N acetyl Cystiene takes 2 weeks to start showing results. We are on day 4 and things have not gotten worse. Overall things have gotten worse after I started the gluten free/corn free diet. I think its causing my son anxiety to have to eat foods he does not want to eat. I am hoping to calm things down with the NAC. how will I ever know if he has "real" TS? for some reason I think you don't get the feeling he has real TS. You have mentioned this a couple of times in your replies but I am not sure how I can ever find out what is causing his TS. We are doing all the possible testing for allergies and nutritional deficiencies, candida, heavy metals, etc. We know he has an intolerance to Corn and a mild intolerance to gluten. His dairy intolerence was considered mild so our doctor did not recommend for us to remove dairy yet. I don't want to cause more anxiety for my son. Trust me, I don't. But also know that his tics have gotten severe over a fairly short period of time. i would say within 2 months they went from mild to severe and it coincided with all the doctors appts and diet changes. So maybe anxiety driven?

Interesting. Since I started the elimination diet and natural supplements, things have gotten much worse. What does that mean and should I stick with it?

How long did diet changes take effect? We've been gluten free for a month and corn free (as much as we can be) for a week.

So I am thinking of changing out our multi vitamin to Bonnie's vitamins. I just bought the TS+Control. i figured since Mag/Taurine did nothing for my son why get the vitmain with the mag.Taurine in it? Any thoughts? Has anyone seen improvement with these vitamins? My son's tics right now are screaming (so hard to deal with), grunting, repeating me, arm flapping and gagging himself. He tics all day long with maybe a minute or two in between of reprieve. I have him on a gluten free/corn free (as much as I can possibly remove) diet with glutamine/probiotic/borage/cod liver oil supplements. We just started him on N Acetyl Cystiene as well 900mgs a day. Its day three of the NAC supps. Any info anyone can provide will be helpful. My son is 5 by the way. thanks Cara

Gave the NAC last night and vocals calmed down. This morning vocals are less as well. I am giving him 600mgs once a day and will work up to 2x a day (which is what the Yale study is doing). There is strong evidence that NAC reduced hair pulling which is also a tic. i am hoping that the results of the Yale study (July 2013) will show a reduction in tic of TS as well. The hair pulling study said effects took 9 weeks. If i am seeing immediate results then that is a good sign right? So far NOTHING i gave him to date has reduced tics. I have given him tic tamer, mag glycinate, taurine GABA and Epsom Baths. No results but I swear the NAC has eased things up a bit. Coincidence or just hopeful? Thoughts?

Thank you all. (Tears)

I decided to start the NAC instead of the 5-HTP. Been hearing good things about this and Yale is doing a big study on its affects on tics right now. Results into be published in July. I just gave him 600mgs and his vocals have calmed down. Maybe just coincidence.

Just got offical dx of Tourettes + OCD from a neuro that specializes in espilepsy. I wasn't thrilled with him. He thinks my son's tics are very severe (obviously because this is the worst its ever been). Its been pretty mild up until now. He wants to put him on Clonidine. I declined for now because we are on the homeopathic regimen. But as you can imagine, that appointment was very very traumatic for me.

Mar - how is your son doing now? How are his tics? From what I read holistically and western medicine wise, nothing will really get rid of the tics. This is something I am have a very hard time coming to grips with. I keep having panic attacks and if you have ever had one, you know how it feels. Like you are going to die. I am in a very bad place right now. I know I need to be strong and I am trying to. We see a neurologist today just to get an offical dx and see what our options are. I plan to stick with the holistic route as well. But I need hope that we can live a normal life with the occasional tic. I think I can deal with that. Today his tics are lessening. Still screaming and yelping but its more intermittant. It was so bad this weekend, that he didn't even talk to us. He just kep ticcing all day long. About one a second. For a 5 year old to act this way is beyond alarming. Makes me scared for when he is 10. If its this bad now then at 10 he could be incapacitated by them.

You are so kind and your posts make me feel better We are the same. I am now 98lbs and wake at 3am every morning. Its not good. I know I need to take care of myself. I went to Whole Foods today and got many things that I "think" are corn free. Some contain xanthan gum or ascrobic acid. But I have to start somewhere right? By greatly reducing corn will I see results or does it have to be COMPLETELY eliminated 100%?

We had company over yesterday (a friend and her nephew). I am wondering if all that excitement combined with school ending and kindergarten starting and allergies are causing this severe behavior. He is still screaming today but is using more of his grunting vocal instead of the full on screaming. We are seeing a neurologist tomorrow at 2pm just to get a dx and see what he has to say. I believe in the holistic method, its just that we have been working on things for over a month and everything is worse. Maybe I have increased his anxiety with all the diet changes/supps and HANDLE therapy. Maybe he is feeding off all my anxiety. There are so many things to consider. Out of all the mothers in the world, I am the WORST one to have been dealt this hand. I do not respond to these things well and am in a deep depression right now. i may need some of that 5-HTP as well.

Thanks for the replies. I do believe that he displays OCD like behaviors as well. He picks his cuticles, has to touch certain things 7 times, bits the inside of his mouth, has to have blue plate, blue whatever, has to be first or he gets upset. Etc. etc. anxiety is his big trigger and if seratonin can relieve the anxiety then maybe we can get some relief??

So for about a week now my son has developed a screaming tic which happens about every 5 -10 seconds. Its unnerving and hard to live with. He also has about 5 other vocal tics which he alternates with the screaming one. So we went back to the holistic doctor because everything we started on a month ago has made things WORSE. The results of our ALCAT came back and my son is allergic to corn. Obviously its a sensitivity because he has no reactions to it other than eczema and possible inflammation in his gut which we can not see. So now we need to eliminate corn which is impossible as you may well know because its in everything. We are stopping the magnesium and taurine cause those are not working either and we are starting on 5-HTP. My question is, since his tics are so severe right now, should i expect it to remain like this or will it go back to being very mild as it once was. I am so scared for him and myself right now. I just need some hope.

My holistic doctor believes this is leaky gut as well and says she sees this A LOT. She also believes we can get rid of the tics. Too hopeful? She says she has done it already in other children. i would like to talk to the parents of those children. We are also doing HANDLE therapy. Check out www.handle.org. That is also supposed to help with the tics. Right now I just don't know what is going on because i feel like his tics are the worst they have ever been and I am not sure why. It could be allergies or it could be all the things I am doing or my anxiety that he is picking up on. Not sure. I do know that we have to do more testing. We need all the information we can get in order to decide which way our path will go. Do you want to pm with eachother?

I want to mention also that my son's tics started as vocals and remain mostly vocal. Grunts, screams, yelps, mostly. His motor tics do not last for very long but were head jerking, blinking, sniffiling, biting the sides of his mouth, knocking knees. He does pick his cuticles but I don't think that is a tic as much as its anxiety related because I have picked my cuticles my entire life. he starts kindergarten in August and I am terrified. He also has a twin brother (fraternal) that does not have any of these issues (praying he never does). i am splitting them up into different classes next year as it may be better for the both of them. Not sure but my gut tells me its the right thing to do. i have had to put myself on anti depressants just to deal with this

are you also supplementing with magnesium? We are on mag, taurine, glutamine, probiotic, and fish oil. I guess it takes more time than I thought to see real results? I thought since I saw very quick results on the behavoir/anxiety side that the tic would reduce as quickly too. We are seeing a holistic MD and will be doing tons of testing to see deficiencies, heavy metals, candida, etc. I hope we find something so i can hope to fix it. We don't have any TS in the family so I have a hunch this is more environmental for my son than genetic. But who knows....

Thank you for your encouragement! I am not going to wait for the ALCAT test results and start weaning him off dairy now. Pizza will be an issue for us but I figure once in a while can't hurt. Well just have to see. My guy is little too. Always has been a bad eater. But I have noticed that he is taking pretty well to the gluten free. He just hates all the supplements that i have to give him. Not sure if they are even helping. This is week three for us and although I have seen BIG changes in his behavoir and so does his teacher, those tics are still there and are actually worse. how are your sons tics after 5 months of this? Are they noticable to others? How are his peers handling it? most of the time no one notices my son's tics but the screaming one is hard not to notice. He is only 5 so the kids don't care but I worry if we don't get this under control, kids will start to notice. i really would like to avoid meds at all costs. I have to believe that if others were successful at dimishing their child's tice then we can be too. right?

I will have to try dairy free. I knew it was inevitable. We are waiting for results of an ALCAT test which will tell us what he is sensitive to in his diet. i was just getting used to gluten free so I need to wrap my head around dairy free. my son is a TERRIBLE eater so this is going to be very tricky.