juls

He once grabbed a white board and drew me a picture of a "normal brain"- his version had patterned, orderly lines. Then he drew his brain going through an explosion- he scribbled hard all over it so it looked like chaos. It usually happens when he is overwhelmed and trying to think of something or do school work. When it happens he can not think straight and needs to chill out.

Yes, thanks so very much! I found it too and just finished reading it. The link between tics, nontraditional ocd (or tourettic ocd), ADHD and sensory processing disorder fits very closely for my son. For us the ADHD and the sensory processing difficulties have almost disappeared. The tics and the tourettic ocd wax and wane. My son also describes "brain explosions" from time to time. These really overwhelm him. I wish I knew what these were and how to stop them...

Thanks! I'll look him up.

My son has had tics for four years (usually verbal tics) but with supplements they are usually pretty controlled. But certain things trigger him to do an odd arm movement. For instance, when someone points at something it causes this arm movement. (It also causes my son to yell at the person to stop pointing.) Yesterday he told me that seeing the leftover glue from a sticker that is hard to remove also causes the same movement. He furiously picks to get the sticky stuff off so that the "tic" stops. Once the problem is solved the "tic" is solved. Is this an obsession? A compulsion? My son calls it a tic but I don't think it fits the definition. I never see classic OCD but I sometimes see this stuff. Comments? Juls

Well I am trying to get him in with a pediatric endocrinologist. Interesting about the BPA in plastics, I was just reading about that in a different context. It seems that precocious puberty is much more common in girls. Thanks for the replies- I'll take more if anyone has ideas. Juls

Hi Folks, I took my 9 yr old son to the doctor today and clearly their are signs of puberty. He has hit a huge growth spurt (97% now) and towers over his classmates at school. He also is growing pubic hair and has had body odor (this has been going on for a while). His older brother (age 11) has none of these things. He has also lost more teeth than his older brother. I am very concerned that he is hitting puberty so early. He is immature for his age. The doctor told me he may also end up being short and unfortunately this kid is already obese and has a huge body frame- he needs all the height he can get! We have been pretty successful at controlling his TS with supplements but now I'm wondering if its something that I am giving him that is causing high testosterone. Here's what we use: SAM-e 200 mg L Tryptophan- 500 mg Mag Taurinate- 166 mg L Taurine- 850 mg Acetyl L Carnitine 500 mg Gaba- 200 mg Zinc- 50 mg Vit C- 1000 mg Fish oil- 1000 mg of omegas Theanine- 200 mg IP 6- 1000 mg Inositol- 2000 mg Melatonin- 2 mg I have been googling for a bit and see that precocious puberty does seem to happen more frequently with autistic kids and he is mildly on the spectrum. Why do these kids have to have all the troubles???? Thanks for any insights, Juls

Hi folks, my son has benefited tremendously from your insight over the years, and I'm looking for guidance again. He is nine and has had mild Tourettes for the last five years. After experimenting with supplements, we have eliminated his tics except for the summer months (I think chlorine or sun screen is the issue in the summer). His tics start mid-June and usually end around November. Nonetheless, even his "bad" months are very tolerable with just a mild verbal tic and occasionally some arm movements. Today ,however, he told me that he has a new problem and it's been going on for three weeks (I had no idea). He says he must say "Thank you Jesus" in his mind over and over, eight million times a day. Poor kid told me that he knows prayer is good but he thinks this is bad and he wants it to stop. Up until now he has never has classic OCD, just some "stuckness"- where he gets locked on something he has to get or has to do and thinks about it until he gets its. But these are not repeated things like this prayer and they are not unwanted thoughts. Right before this new manifestation, I ran out of Magnesium Taurinate and had to buy a new brand before our vacation. That has been the only supplement change. I will be buying the old brand tonight and I hope that that makes the difference for him. But I wanted to know if anyone has suggestions for supplements that might stop a repeated thought like this prayer. The only other change in his life that I can think of was that he had bronchitis and ended a course of antibiotics about two weeks prior to this new problem. I have been giving him probiotics though. Thanks in advance! Juls

I give 2 capsules a day, one in the AM and one in the PM. My son is also 9 but weighs 99lbs. Actually, I'm glad you made me reevaluate this right now. My guy is tic free because of his supplements from October through mid-June. The tics come back in June and last through the summer even with his supplements though. We've had this pattern for several years. I'm pretty sure that swimming in our chlorinated community pool is the culprit, but he loves to swim and his summer tics are not too bad (mostly a verbal squeak). The OT and the exercise from swimming outweigh the negative of the tics in his case, so we let him swim. Nonetheless, I think I will up his Magnesium Taurinate to three capsules for the summer. I had been on a mission to decrease the number of supplements he takes, because he gets sick of swallowing so much. I had him dropped from 20 pills down to 13 but in the summer he clearly needs more support. As for other Magnesium, he also takes espom salt baths after swimming and sometimes drinks Calm. Juls

Yes, this is what we have been using for a while. It seems to work well for us. Juls

Thanks for catching my mistake, you are all correct, I shouldn't be giving the IP-6 with food or with the other supplements! As far as why I am using it, I believe I chose IP-6 after initially using Inositol and reading that IP-6 was the better choice. I made the switch a while ago and I have been looking tonight to find my source, I believe it may have been recommended in one of Dr. Amy Yasko's publications. I was using it primarily for anxiety/OCD but by giving it incorrectly it may be doing unintended harm. Thanks for catching this mistake. Juls

I've been following this board for about three years and have learned a ton but I don't post much. My son started with tics four years ago when he was five. He also has some mild OCD and the tendency to get "stuck" or obsess on the things he loves (currently Webkinz for instance). He can also be a difficult kid to manage at times. Supplements have done wonders for his tics but less for his OCD and mood and sometimes he would get really tired of swallowing so many pills each day. After tweaking and experimenting over time I have him down to this regiment and it has been working extremely well for a period of months now, so I though I would share: AM Before Food (2 pills) Sam-E 200 mg L-Tryptophan w/B-6 500 mg - this has been fabulous for his mood AM With Food (8 pills) IP-6 500 mg Efa Gold Mood Aid w/vit E -500mg EPA Omega 3 Magnesium Taurinate -83mg of Mag and 891 mg of L-Taurine L Taurine- 850 mg Acetyl L carnitine- 500 mg zinc- 50 mg Vit C -500mg Vit B complex - various amounts Vit C 500 mg PM With Food (3 pills) IP-6 500 mg Efa Gold Mood Aid w/vit E -500mg EPA Omega 3 Magnesium Taurinate -83mg of Mag and 891 mg of L-Taurine PM Bedtime (1 pill) Melatonin 1 mg As for diet, we have moved to mostly organic foods and we limit artificial stuff as much as we can, but at this point we are not vigilant. I have played around with GFCF but not had results. I have noticed that his tics are often made worse by chlorine water and swim season is a about to start so we may have a regression (we did last year). Currently however, we have been tic free for months with minimal OCD, and a mild level of fixations. Best of all is the cheerful mood. He is down to 14 pills a day and at one point he was over 20. When I first began researching I looked at Bonnie's program and was put off at how many pills would need o be swallowed. Instead, I moved slowly adding things a bit at a time until one day I made a direct comparison between what we were doing and Bonnie's plan. I was shocked to see that I was almost replicating her program and my son was now swallowing 20+ pills. We were having a lot of success with tics but needed to focus on mood. My son was also very weary of all the pills. That's when I added the L-Tryptophan and began reducing his load to what I felt were probably the most essential I may next eliminate the 850 L Taurine and see if that is tolerated and then possibly do the Sam-E and the zinc every other day. Clearly every child is different, but I wanted to encourage folks to keep plugging away and tweaking to find what works best. I am so grateful that we are where we are right now and I am deeply thankful for the resources of this board. Juls

I'm a regular reader of this site but I rarely post. My son (age 8) has TS and some of the issues that accompany it. When I first found this site a few years back I learned of Bonnie's vitamins but felt I could never get my son to take all those pills. I also wasn't ready for the expense. But slowly I began to add supplements to my sons life based on what I was reading. I was fueled by the results I was getting. At this point my son swallows 20 supplements a day and his tics are extremely mild, nonexistent on most days in fact. He is very compliant with taking these supplements because he has seem the results. Just recently I looked at Bonnie's vitamins again and did an excel spreadsheet to compare what I was using to her program. I was shocked to see how close the lists were! The amount of supplements to swallow was almost identical too. Over time, I had come up with a very similar program for my son. Based on this I'd have to say that starting with Bonnie's supplements might be a great place to begin. As for doctors I can't help. We've seen many doctors but none that I feel have the knowledge I am looking for. I keep pursuing this though. We have cleaned up our diet as well, but we still have a long way to go. My son LOVES food and strongly resists diet changes. After the new year I am going to remove dairy for a few weeks and see what happens. I think extreme diet changes will be a huge challenge for us as this kid is prone to sneaking food. I have no doubt it is what he needs- not for the tics but for his other issues- but I'm not sure I'm ready for the huge battle that this is likely to bring about. So keep up your research and take baby steps if you have too. You can make a difference in your son's life (and maybe you husband's too). I know the info is quite overwhelming but I'm sure glad it's available! Juls

One huge area that I wish I could resolve with my son is his muscle tone. My son is very large for his age- both tall and big boned. He is also very, very strong. But his body is like dead weight. When he rests his arm on me it's so heavy. He has been dead weight since he was an infant. He also has trouble with his body in space. I used to joke that his head was like a bowling ball and it would inevitably bang into me almost daily when he was small enough to sit on my lap. He's a bit floppy, but not as much as I would expect. He loves to bang into thing or press against things because he is under sensitive. He is like bam-bam on the Flintstones. Do any of your TS kids fit this description? Anyway to help this dead weight issue? We've done OT but this problem hasn't gone away? I think it's a neurological issue. Are there supplements that could help? Juls

My sons tics were at there worst a year ago. He was clearing his throat all the time and loosing his voice from it. His arm tic was also bad at this time. The severity of the tics was becoming very worrisome to me. We played around with supplements adding them bit by bit. In January I added L-Carnitine along with vitamin C to what we already had in place and the tics all disappeared quickly. It was amazing! This was tested in March when he stopped all supplements for three days and all the tics came back strong until he was back on the supplements for two weeks. Then the tics disappeared again until summer time when they came back mildly. I think chlorine is the trigger but he loves to swim so I'm not willing to stop the swimming. Here it is Oct and the tics have still not disappeared, but they are so very, very mild compared to when he is off the supplements. They are not a big concern at this point. I do still tweak his supplements in hopes of lessening some of his OCD tendencies and mood issues.

Thanks, that was exactly what I was wondering. I had just read a book about TS that talked about how the tics change and I was curious why our were so static. Perhaps this is not uncommon when meds are not used. Juls

Faith, I've had my son on a host of supplements after learning so much from these boards. From Jan to July his tics were completely gone with the exception of a two week stretch in March that directly followed three days when my son hide his supplements instead of taking them! That hasn't happened again. When the tics returned this past July, they were the same tics he's always had. They are still much milder then before we started supplements though. I'm not sure why the supplements aren't doing the trick anymore, although I'm sure the tics would be much worse without them. My sons tics always seem much worse in the summer and fall though. I was just thinking it odd that his tics really don't morph into others. They wax and wane but the same group of tic are always the ones he has. Julianne

Just curious, my ds began verbal tics at age 5 and then a few others were added. He is now almost 9 and I was just dwelling on the fact that his set of tics has never changed or morphed in the way that I've read about for people with TS. Is this an odd presentation of TS, or do others just stick with the same tics too? He has a verbal "hmmm" tic, a little hum, an arm above the head tic, a scratching tic and a compulsion (I think this is a compulsion) to scratch something after someone points at it. These are all very mild and with supplements they even went 98% away about for 6 months. They came back mildly this summer, perhaps due to chlorine from swimming, and have stayed around. But it's alway the same set of tics and it's been this way for years. Anyone else with this experience? Just wondering... Juls

Kim, I think you have a point. If they have a study that strongly links thimerosal with tics in boys then parents of those affected boys (born in the late 80s to 1999) may have a case even stronger then the autism folks who have been barking up this tree for quite some time. That said, I think we are a harder group to organize because our kids often function much better then those with full blown autism. I like your idea about contacting David Kirby. Juls

My son is now eight. He began having tics when he was five. They began at the end of June and went away in September of that same year. The following year they returned again at the end of June and never went away. As the tics got worse (they began as verbal tics and then motor tics followed) I started my son on some of the supplements mentioned on this forum. In January of this year I added L Carnitine and vitamin C to his supplement regime and his tics disappeared. It was amazing! The only time he they returned was for a short period in March when he did not take his supplements for three days. When the supplements were taken again all the tics disappeared...until July 5th. They have all returned in spite of his supplements. This is the third year that I have seen tic begin in the last week of June (or early July in this case). I'm pretty sure it has to do with swimming, sun lotion or sun. He does have a sun allergy and gets bumps from sun exposer. I also know that pool water chemicals are often listed as tic triggers. I don't want to stop him from swimming yet I am so sad to see these tics starting up again after 6 months of being tic free. Any thoughts? Any ways to prevent this without stopping pool time? Juls

Thanks Chemar for looking into this further. The info is helpful. Juls

For those who use inositol, how much do you give? Chemar suggested 500mg for children in a recent dialog but I have also read that OCD needs a much higher dosage (one study used 18 g for adults). The following link has been helpful to me, but I was wondering what doses others are using? http://www.homestead.com/westsuffolkpsych/...ol_and_OCD.html I'm currently giving 2400mg a day and was actually thinking of raising that amount, especially based on the link above. My son is 8 and almost 90lbs. Do any of you give high doses to children? Any ill effects? Thanks, 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

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

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