Big sucess with L Carnitine and Vitamin C and a question about STUCKNE

[juls]

First let me introduce myself, call me Juls. I'm a homeschooling mom of three. My middle child began with verbal tics when he was 5 years old. He is now 8 and suffers from verbal tics, motor tics, ADHD, mild SID and what I call "stuckness" (probably some form of OCD but it is awful!). I've been lurking on this forum for a few months and I wanted to thank everyone, especially Chemar, for such fabulous information.

 

I learned of L-Carnitine from a post here and tried it with my son back in January. Overnight we saw a huge reduction in his verbal tics and in a few days all of his tics had disappeared. It was unbelievable!

 

In mid-March my dear son decided to ditch all his suppliments down the heating vents for a few days and low and behold the tics came back and I discovered the problem. He's learned that lesson fortunately.

 

I had hoped that starting his supplements back up would stop the tics and when it didn't I began thinking about what had changed between the first time he took L-carnitine and the second. All I could pinpoint was that in Jan I also began giving him 1000mg of vitamin C and I had run out of the vitamin C around the time he hid his supplements. I hadn't bothered to buy more. After two weeks of increased tics I added vitamin C back to his daily regiment and the tics have just about disappeared again.

 

My son is currently taking:

 

a multi-vitamin (I look for one with no copper)

fish oil (2 capsuls)

Calcium/Magnesium/Zinc (all in one but 3 caplets for the full dose)

Chewable Vitamin C 500 mg (1-3 a day, he takes this like candy)

Taurine 1000mg (1 capsule)

Acetyl-L Carnitine 500mg (1 capsule)

Gaba-plus (4 capsules)

Super B-complex (1 capsule)

Sam-e (1 tablet)

Melatonin 1mg (1 tablet before bed for sleeping- it's made a big difference for him to sleep well)

 

Now that the tics are almost gone again, I am back to focusing on his "stuckness." This really rules him at times. He is often stuck wanting a toy that is impossible to obtain or something that I can't change. Nothing can get his mind off of the thing he wants or doesn't want.

 

Today he could not do his Vision therapy because he didn't like a woman that was in the room (he hadn't even met her he just decided he didn't want her to be there). He was so stuck he wouldn't comply with anything and we had to reschedule. But then he got stuck about leaving. He wouldn't leave the office and he wouldn't do the therapy! I can't carry a 90lb 8 yr old so I'm stuck trying to persuade him to do something. He cried all the way home because he hates being a "bad boy" and hates being stuck on things all the time. It breaks my heart and frustrates us both and tremendously! Is this OCD? Any ideas on how to combat it?

 

Thank you all so much,

Juls

[faith]

Hello Juls and welcome,

I'm so glad things are going well with what you are using for your son. just curious, did you start those supplements all at once just to try on your own? And you feel your son's tics subsided after a few days on those supplements or just when you added the carnitine? I've wanted to try the carnitine, but haven't yet. My son has had a vocal too, but right now it seems to be somewhat diminished so I don't want to do anything different now.

 

May I ask if your son's tics were mild or if you ever used any meds? Have you consulted any alternative docs or done any testing? I'm so glad you popped in to share that info with us.

 

P.S. Why do you homeschool? (nosey me!)

 

Thanks

Faith

[kim]

Juls,

 

Welcome and thank you so much for sharing your son's experience.

 

I just ran across this last nite, and thought of it, when I read your post.

 

The first link is the forum where I found the article. It's the last post in the thread

 

http://brain.hastypastry.net/forums/archiv...php/t-5563.html

 

http://www.homestead.com/westsuffolkpsych/...ol_and_OCD.html

[patty]

Juls,

 

Welcome and thanks for sharing the info. It is so encouraging to know that supplements make a tremendous difference on tics.

 

Anyways, i am curious as to how fast the vitamin work. You said your sons' tics reduced overnite when you gave your son L-Carnitine, did it apply to motor tics as well? Also, when you said "overnite", did you mean the next day?

 

Thx!

 

Patty

[Chemar]

Welcome Juls

that is so encouraging to hear how effective the supps are for your son

 

yes, what you describe as "stuck" on things certainly does sound like OCD

The samE and GABA can be very helpful there, but I too would suggest adding INOSITOL at 500mg/day

Inositol (aka VitB8) has a gentle yet effective way of increasing serotonin levels, which are known to be low in OCD

 

There is also 5HTP, but my recommendation would be to try the Inositol first as some people dont react well to 5HTP

 

If the VitB6 in your Bco is under 50mg, maybe consider supplementing that too (or better yet P5P)

[Cum Passus]

Juls,

 

Welcome! I'm so glad you have shared your story. Carnitine is one of the supps. I will get to just have to go slow. His comprehensive profile shows high Adipate, and carnitine & B2 are options to help. I'm thankful you told us how much he is taking. It really helps me out. My son is 90 lb too, although 13 you have given me some options.

 

I homeschooled my kids, and sometimes I wonder if sending my son to public school last year has so much to do with his stress.

 

I do remember my son would (what I use to call) beat a dead horse. We would have to repeat over and over why we did the things we did. I though back then it was because he liked to hear himself talk. He does not do that anymore thankfully. I didn't know anything about ocd then, and now I don't remember enough to say it was some kind of ocd, I just remember it BUGGED me to no end. So hopefully this will pass with your son too.

 

C.P.

[juls]

Let me see if I can address some questions. No we have never used any meds and no we have not done testing. I have used the internet to figure out supplements for my son and have been playing around with them for over a year. We do have a DAN doctor, but he is pretty green at being a DAN and only added B12 shots for us. I tried these for 2 months and saw no results so I stopped.

 

Recently, I have read a book called "The Edge Effect" by Bravermen and according to the self administered tests in that book I have a child deficient in all 4 of the major neurotransmitter. I am using some of the suggestions in that book. Has anyone else read it? I'd love opinions.

 

My son was taking a bunch of supplements (most of what you see in my original list except the Gaba) when I added the L carnitine and vitamin C. The verbal tics, which are his worst tics, decreased significantly overnight, as in the next day. Within a few more days the verbal tics were gone and his motor tics had also vanished. Actually, his "stuckness" issue really got better too. It was unbelievable! When he went back on vitamins after his three day self-imposed break, it took longer to get better again but adding the vitamin C back seemed to do the trick. I haven't seen any tics for about three days now- although his "stuckness" is at a major high right now. I would say that my guy has a relatively mild case of Tourettes but through the fall it was getting worse and worse, especially the verbal through clearing, coughing and little singing that was happening all the time. His motor tics have never been as bad. Now the tics are rare and only occur for super short durations (one or two noises in a row at most then stop)... for now.

 

As for why I homeschool, this was a decision my husband and I made before we had kids, but at this point I think my middle son would not do well in a school environment and he's happy to be at home right now.

 

Chemar, thanks for the specifics. The Gaba Plus that I give him actually has both Inositol and Niacin in it, quite a bit in fact. He's getting: 800mg of niacin, 400mg of Gaba and 2400mg of Inositol from these. But I did go back and look at the B6. I recently switched multivitamins and now realize that I have decreased his B6 to only 6mg- maybe this is accounting for his stuckness levels right now... We have tried 5htp and not seen much differences. I'm going to increase the B6 and I'll take any more ideas.

 

I've taken so much wisdom from this forum and now that I'm seeing some results- at least with tics- I wanted to share them in hopes that someone else might benefit.

 

Juls

[Chemar]

good that he is getting Inositol Juls but wow!! that is a VERY high dose of Inositol.

The usual for kids is around 500mg a day or up to 1000mg under deficient conditions so I am very surprised by that level?

 

It does sound like he is getting a very good combination of supps

 

Just to mention, for my son MSG (monosodium glutamate) is possibly the biggest trigger for his OCD, followed by the dreaded food colourings and the artificial sweeteners(nutrasweet/aspartame and splenda/sucralose etc)

 

Illness, lunar cycle and now it seems, environmental allergies also seem to cause OCD waxing for him

[juls]

Yes, I'm well aware that dietary changes might help but I'm really scared to attempt this. My son LOVES food, especially sweets. I have moved to a much more healthy diet and I am current reading a Feingold diet book but I don't know if I can make this change without lots of difficulties from my kids. MSG is everywhere too. They already steel treats when we have them in the house. My middle son (the one with Tourettes) raids the sugar bowl so I now keep sugar stored away in the pantry. How would I keep him from bad food when he is in Sunday School? He would hate being denied candy or treats. I know he can have alternatives but food is something he already gets "suck" about. I think radical diet changes are our next step, I'm just scared to take the plunge.

 

Juls

[patty]

Juls,

 

Yes, i agree dietary change is difficult to make esp when your kids love food and have accustomed to certain things they enjoy. Since candies are loaded with corn syrup, artificial flavors and food colorings, i would definitely try to find candies that are without those ingredients.

 

Whole Foods has an organic lollipop that is made by Yummy Earth that is all natural or you can order it online, www.yummyearth.com. Also, organic chocolate are also another good option. If you need more info. i would be glad to recommend a couple more candy options.

 

Dietary change is not an overnite process, because it would be too overwhelming. I would start gradually and slowly changing your shopping habbit. Perhaps getting your kids involve while grocery shopping may be a good idea because it teaches them making good food choices.

 

Good luck.

 

Patty

[Cum Passus]

Juls,

 

How you decribe your son's TS as mild is very much how I would say my son was when he was around your son's age. It was so mild his tics were like a day, then they would be gone for a long time. I think this is why I never knew he had TS. I think the homeschool is great for your little guy. I really believe my son was so calm at home with me that he never had stress induced tics.

 

Keep up with what your doing, hopfully when your son gets to the preteen/teen years all your hard work will pay off (and some prayer) your son's TS will never be as bad as what mine when through.

 

C.P.

[juls]

CP (and Patty),

 

Before the L carnitine addition, tics were everyday, hundreds of times a day- but they were 80% verbal (throat clearing, humming and coughing) and 20% motor (arm over the head and lip licking). I guess they seem mild to me because we have a neighbor (9 yr old boy) who has them much worse. His whole body is involved and his sounds are much louder.

 

Now my son does still clear his throat more than someone might normally do, but it only occurs once every hour or so, never over and over in a row like before. It doesn't sound odd.

 

I do pray that my son will be spared anything worse then he has already endured. He is immature for his age and his "stuckness" can rule his life (actually our whole family's). I wish God would just heal him instantaneously, but I know that His grace is sufficient and His power is made perfect in our weakness. I know that He loves my son even more than I do. It gives me great hope.

 

I am also thankful to have others with so much experience to learn from.

 

And Patty, how I wish we had a Whole Foods nearby! I will check out the site you listed. You are right about the baby steps and I have been taking them. My pantry looks so much different then it did last year. We have cut out almost all fast food- occasionally stopping at Arby's on a road trip. I buy much more organic food, but I not yet the food Nazi that I may need to become...

 

Thanks so much everyone,

Juls

[kkver]

Juls

 

I got L carnitine today but not sure If it right. I was able to get the liquid form which is 1000mg in 1 tablespoon so i will give only 1/2 tablespoon only if required. His Tics got much better then last few weeks with the help kids calm and calcium combo . I bought the higher Vitamin C today so will use that before I try l carnitine. I wanted to ask if this is the right thing i bought.

http://www.bodybuilding.com/store/mrm/lcarnitine.html

[juls]

kkver,

 

Yes, that looks right. I've never tried the liquid but I have used two different brands of L-carnitine and both have worked fine. Please let us know if you notice any improvements.

 

Juls

[kkver]

juls

 

I guess L-Carnitine is behind the stucking behaviour. I gave him a little around 200 mg last night ..man what a music i faced today in the Mall . His mood was swinging and was getting stuck on evry second thing. One time he did't want to walk . though it did't had much affect on his vocal tics.