Do transient tics ever go away/ L-Carnitine questions

[partyof5]

Hi. I am new to all of this but I have read through this forum for several weeks. My 7 year old son suddenly started snapping his head to the side about two months ago. At first it was only a few times a day but then it became fairly regular. This is now accompanied, at times, by a little vocal that sounds like a quiet hum. The tics are worse when tired or excited. The doctor diagnosed him with transient tic disorder and told us to ignore it and wait a year to see what happens. After reading through the forums I have taken him off most dairy and limit gluten as well. When I tried to reintroduce milk, his tics went crazy. So he is back off of it for now. His teacher says he is not a problem at school and that she barely notices his tics (I feel like I notice every movement when he is with me). He is a good student to this point. The pedi did ask if he had had a sore throat recently and she looked at his throat but that was it. I have looked all over the internet but I do not see anecdotal reports where these tics actually do go away. Does anyone know if there are cases where they really do resolve? Also, I would like to know more about L-Carnitine as I have seen some good results posted here. He is 7 years old. Is he too young for it? What dose would you recommend? What do I need to get: Acetyl l-carnitine or L-carnitine? Thanks for any advice you can offer.

[blakes_mom]

I dont have any information about l-carnitine but the pediatrician asked about a recent sorethroat because I suspect they were considering a diagnosis of pandas. This is when an infection such a strep throat can cause tics. Pandasnetwork.org can give you some information about this if you are not familiar. My son who is 11 now had a sudden onset of tics and was disgnosed with PANDAS.

[Chemar]

Hi

yes I have heard of a number of children whose transient tics have resolved without any intervention.

 

Tics are considered transient if they are present for less than a year before being resolved, and do not recur.

 

http://www.nlm.nih.gov/medlineplus/ency/article/000747.htm

[Chemar]

In reply to your question about carnitine...some people prefer the l-carnitine and others the acetyl-l-carnitine.

 

However, we were told not to use it long term and also there has been some recent research related to adverse cardiac effects from carnitine but it seems the research done there is getting a lot of scrutiny and may not be relevant to what we used it for. Still, always good to discuss with your health care provider first

[partyof5]

Thank you for your responses. I am afraid to try the l-carnitine just yet. I did speak to an integrative pediatrician on Friday and she has put him on a variety of supplements as well as a clean diet with no milk or gluten. She wants to see him for a full day assessment but I will have to wait a bit because it is very expensive. He was doing quite well and then today when he came home from school he was having a lot of vocal tics as well as the little head twitches. When I asked him what he had for lunch in the cafeteria (he was supposed to have the chicken) he told me that he had a cheese sandwich. I am not sure if that is what made the difference or if it is just the normal waxing and waning I have read about. I can see that I have a big learning curve ahead of me.

[Chemar]

If dairy or gluten are tic triggers for him then the cheese sandwich may have triggered the tics, especially if he has been on an elimination period for those.

[jlhaas1978]

I have been looking for a place to deliver information about vocal/motor tics. My nine year old son developed tics at 7 years old. It began with an intense head whip and eye blinking motor tic. On top of that, he was clearing his throat every few minutes. Never seeing this behavior before, I was frantic! I took him to a doctor and he said that Christopher had Tourette's syndrome and was going to put him on several antipsychotic medications and anti anxiety medications. Being a nurse and knowing the side effects of these medications I decided to do research myself on this disorder. I found out that one, he has transient motor/vocal tics. And I also found out that it can be controlled with diet and supplements. The tricky part is finding out what allergies he had, and what supplements he would need to take. I began with eliminating ALL artificial food. Preservatives, pesticides and artificial flavor/color. This eliminated the head whipping and eye blinking. It took a year and a half to figure out that eliminating these things would eliminate his tics. His motor tics were gone, but the vocal tics remained. I found out through research that children with asthma will often clear their throat or cough when bronchioles are constricted. I started Christopher on a supplement with quercetin in it and his coughing has almost disappeared. He has viral induced asthma and is also sensitive to chlorine in the pool, which irritates his lungs and makes his symptoms appear. So I make sure his immune system is healthy by giving him a probiotic daily and have him swim in lakes rather than in pools in the summer. Last December my son began sniffing and blowing out of his nose every few seconds. This was loud, constant, and irritating to the people around him. I was giving him all kinds of supplements: L-caratine, Inositol, Grapeseed extract...just to name a few. Nothing was working. I have had him on 1000mg of fish oil, allergiclear for his asthma, and a probiotic for the last two years...but was not sure about all of these extra supplements and how they were affecting his kidneys and liver. By chance, my husband and I noticed that his sniffing was increased at nighttime. I thought maybe he had mold in his room, or maybe he was allergic to feathers, maybe his mattress was full of chemicals, maybe this and maybe that. I was racking my brain trying to get this straight. Then it dawned on me that Christopher ate bananas often before bed. Come to find out, he had DEVELOPED an allergy to bananas! He did not have this allergy before. We eliminated bananas from his diet and the sniffing disappeared. I gave him a capri sun called summer rush or something like that and 30 minutes later he was sniffing/blowing out of his nose again. I find out later that capri sun has banana in most of their drinks. Anyway, there is a way to eliminate tics for good through diet modification and supplements. I will just mention what supplements I have my son on in hopes that it will help someone else. Sheila Rodgers book on tics is amazing I recommend it to all parents that have children with tics. I also recommend that you get your child allergy tested! Change your diet for your child as well as your family. Eat organic, eat whole foods without preservatives, chemicals, additives, artificial anything! You will see a difference in just that alone!

 

Chris is on:

1000mg fish oil

Bontech ts-plus control dietary supplement 10 veggie caps/day

Multidophilus 20 billion proboitic 1 capsule/day

Allergiclear 2 veggie caps/day

 

I hope this helps!

God bless,

Jennifer

[jlhaas1978]

I also wanted to mention that you may want to pack his lunches for school. With all of the preservatives in school food on top of hidden MSG, I found these to be the worst triggers for my son and his head whip/eye blink tic. This includes artificial food dye. The cheese you mentioned in his sandwich could of had yellow#5 food dye...which causes intense motor tics in my son. Read every food label before giving your child food. This is where I noticed a dramatic change in the intensity of Christopher's tics. The supplements alone did nothing for my son for his tics, but they did help with his OCD. Finding his triggers, watching what he consumes like a hawk, and being hyper focused on any changes of tics in different surroundings, with what he puts on his body and IN his body will help you solve this puzzle. That is what it felt like to me, a puzzle. I was a detective trying to find the hidden culprits causing his tics. Reading articles, blogs and talking with other parents was so beneficial. This is why I wanted to write all of this down. My son has not had motor tics in over a year, and his vocal tics have been gone since December of last year. They are not reduced, the are gone! I am not saying that this WILL help your child, but PLEASE try the food elimination, fish oil and probiotic.

 

Jen

[Cj60]

Thanks Jen! It's important (I think) to stress how important diet can be in reducing tics, and how changing and monitoring someone's diet can be real hard work, especially at the beginning.

 

- Chris

[partyof5]

Thank you so much for your help Jen. I find your posts very, very encouraging. I have my son on a good multi-vitamin, vitamin B complex and Arctic-D Fish Oil. He also has an Epsom salt bath each night. The integrative physician wants him on a probiotic so I have to find a good one for him this weekend. She also suggested an osteopath. She wants to do a full day work up on him and it is so expensive. We will invest the money but first I want to gain more understanding of his triggers. I also have Sheila's book and, after the negative doctor's visit, it did give me hope. He has improved greatly with the addition of the supplements and eliminating milk from his diet. I can see that I need to clean up his diet a whole lot more. I am still struggling with finding good foods that he will eat although he has surprised me with his willingness. The switch from milk to almond milk was so easy. My son doesn't seem to have much else going on except the motor/vocal tics. I would not say that he exhibits OCD or ADHD symptoms. I also think he has pollen allergies because he has been stuffy in the morning since spring started. I am not sure what to give him as Benedryl makes him tired all of the next day. This summer I am going to beg our regular doctor to do some allergy testing. His sister has seasonal asthma so I wonder if he is suffering from the same thing now that you mention asthma. I feel like a detective too and some days it gets overwhelming. Like you, I have torn my son's bedroom apart and cleaned, washed everything in detergent that is free of additives, etc and still he has sniffles in the morning. Jen, if you don't mind me asking, I would love to know what brand of probiotic you are using?

[Chemar]

Hi partyof5

I noticed you asked about a probiotic....some kids seem very sensitive to the probiotic supplements, and so natural kefir (we use Lifeway) is an excellent and relatively inexpensive source.

 

Welcome to Latitudes Jen

If you search around you will find that the theme of healthy diet & correct nutrition is one we harp on continuously. When I first started posting about it on another forum many years ago, I was ridiculed and told I was in "quackville" for suggesting that artificial dyes and sweeteners and MSG etc could be tic triggers....but I knew what we were seeing in my son and so finding Latitudes a few years later was like a breath of fresh air!

[partyof5]

Chemar,

Can I ask if it is OK to use kefir if my son seems to have issues with milk products?

[Chemar]

Yes, as long as you use type A2 casein kefir. We use the natural (yellow bottle) plain by Lifeway, which is the only one guaranteed type A2. My son avoids all other dairy but gets tremendous benefit from kefir (he has Crohn's as well as TS)

 

http://heal-thyself.ning.com/profiles/blogs/the-amazing-thing-is-that

[Chemar]

ps you can also get coconut kefir but be sure the "other ingredients" are ok...friends of mine make their own to be safe.

[partyof5]

I am going to try to get the right kind of kefir and see how it goes. The linked article is fascinating. I am finding it a bit overwhelming trying to understand what my son's triggers are. It would be one thing if I could control for all of the variables but I am finding that so difficult. Last night my husband got him some chocolate almond milk instead of the regular one. Today he is ticcing like crazy but how do I know if it might be the chocolate in the almond milk or just the natural waxing and waning of the tics? Also, we started him on the Arctic-D Cod liver Oil a few days ago and I swear he is having a bad reaction to THAT. I am pretty much ready to cry.