TS and RLS Any connection?

[mblack]

My son is now having problems with his legs or is complaining that his legs feel like there is something in the calves trying to claw its way out. This has been going on for awhile now and does not seem to be getting any better. He says that it hurts and that it also tickles. It does not seem to bother him during the day only at night when he is getting ready for bed. He says that all he wants to do is hit his legs and he is beginning to cause bruses. We have been staying up with him until 2-3 a.m. everynight to rub his legs for him and get him relaxed enough so he can fall asleep. Once he falls asleep everything is okay. He stated that he has prayed that god would make all of this stop but he guessed that he was'nt listening to his prayers. That kind of stuff really breaks my heart.

From all that he tells us and from what we have read this sounds like RLS ( Restless Leg Syndrome). Is there anyone out there who has experienced this sort of thing with your child or maybe yourself and have any comments they would be greatly appreciated.

I'm telling you we are at ropes end on this situation and can't want to get some positive information that is going to help our son. I have read Sheila's book (Tics And Tourette's Breakthrough Discoveries In Natural Treatments), and the book really does give me alot of hope for my son. I do recommend the book to anyone that is facing these type of situations. Our appointment with the environmental doctor in Gadsden, Alabama is this Tuesday and it can't get here fast enough.

So in the meanwhile if you have a comment or anything else you would like to say I will be listening. Thanks!

[Caryn]

mblack,

Hi!

Just want to suggest, maybe you have already done this-- Try cutting out artificial ingredients in his food as a first measure. Colors, especially Yellow #5... which is in just about everything under the sun, including store bought potato salad and jars of relish. Cut out sulfites, MSG, corn derivatives like maltodextrin, HFCS, etc... In our experience with ds omitting Corn played a major factor in his recovery. After an white blood cell intolerance test we learned that he has a very strong intolerance to sulfites, and wouldn't you know, processed corn products are soaked for up to 2 days in sulfites!!!! (People with sulfite problems lack an enzyme to break it down into sulphates.)

Every child is different, but if you read Sheila's book, one thing is pretty constant-- modified, processed food ingredients aggravate symptoms.

Our son used to spend 1 1/2 each night laying in bed trying to fall asleep. At his worst he only got 7-8 hrs a night. That didn't last too long, as I took a lot of advice from some really terrific people on this site.

Supplements are also key.

We are seeing a specialist who put our son on Gabba 6 days a week in addition to his B6, Mag, zinc supps. He is also on fish oil. The Gabba really helps him to stay calm.

He used to have rages, but that is all a thing of the past now. He is really happy and well adjusted now. Thank God. We take it one day at a time and keep him on a real healthy organic diet, avoiding his trigger foods. I bring a special bag of snacks with me wherever we go.

All the best.

Caryn

P.S. He sleeps 12 + hrs every night, and falls asleep w/in 20 mins now.

Part of your son's current problem may be his anxiety about not sleeping. Maybe you could change the routine to help him relax better and not get so psychologically worked up about it just before he goes to bed. I feel for you. I know the anxiety of not being able to help your child fall asleep. It is agonizing.

[patty]

mblack,

 

Sorry to hear that your son is having leg problem. I am wondering if it is a leg tic? Because my son's neck tic is due to neck pain. The pain comes & goes. I notice the more severe the pain, the more frequent & intense the neck tic. Epsom creme applied on the neck works well to allevate the pain. You can order it online from kirkman Labs.

 

Perhaps, he may also benefit from epsom bath, 2C salt in a tub of water for 20 minutes. And drink plenty of purified water afterward. Good luck.

 

Patty

[Dedee]

Let me assure you that what your son is having is not anxiety or tics. I believe that what he has is true RLS. Yes, children can have RLS. I am telling you this because my middle son had it for about 4 months after a strept infection. I would not have been a believer or so patient with him except the I also suffer from RLS and his description was right on the money. He would also cry every night and insist on sleeping with me. I would give him Benadryl to try to help him sleep, but that sometime seemed to make it worse. I was afraid to go to the doctor because at that time I was afraid they would think I was crazy. Since then I have seen a research article (it was very short) on the correlation between strept and RLS in kids, and I thought I would fall over. I just knew then that my son was the one with that direct correlation. By the way, this is not my son with PANDAS, but my other son who has other strange flare ups after strept infections.

 

One thing that does help is Calcium supplements. I give them right before bedtime. In addition, make sure you avoid any sort of stimulant in foods such as caffiene, chocolate, etc.. before bed. Also, Inositol is a naturally occuring B vitamin that promotes rest and decreases anxiety. Although you have to use higher doses for these effects. I use two teaspoons of the powder in milk before bed for my son and it has helped him tremendously. It is a water soluable vitamin so you can't give to much. Whatever is not needed by the body will be excreted through the kidneys.

 

I will try to hunt around for that article on RLS in kids and find the link. I got it from this site, maybe someone here remembers it. In the meantime, I will pray for you and your son. How horrible for him to suffer that way. Please let me know what the doctor says. I hope you find relief soon.

 

Dedee

[Dedee]

I have found the link to the page here that has that article on RLS and strept and I am going to try to post it. I hope this works. I am not very good at this.

 

RLS: association with Streptococcal or mycoplasma infection

[PANDAS_Denmark]

As Dedee I am sure, that there is a connection between PANDAS/Tourette and RLS.

First of all I have experienced this - in my 6 year old son, having PANDAS (and as such Tourette) and in my self, having an autoimmune disease comparable to PANDAS.

Secondly the neurotransmitter Dopamine is involved in both diseases.

 

When the restlessness is at worst I treat myself and my son with magnesium - and massage. That helps -

 

I´ve just made a quick google-search - on "+tourette +"restless legs"" and found a lot of pages.

 

Sincerely - PANDAS_Denmark

[mblack]

Thanks Caryn, Patty, Dedee, PANDAS Denmark, for your response and interest and especially your insights. I really do appreciate people like yourself that are willing to listen and answer questions based on yours and your childs experiences. I will be posting what we find out after our doctor visit. Thanks again.

[Chemar]

hi

 

there is also info on TS and RLS at NeuroTalk

It seems a common theme in RLS may be iron deficiency

 

here are some post links

 

http://neurotalk.psychcentral.com/showpost...mp;postcount=13

 

http://neurotalk.psychcentral.com/showpost...amp;postcount=2

 

 

http://neurotalk.psychcentral.com/showthread.php?t=22683

 

I have heard from others with RLS who find the Epsom Salts baths before bed very useful (2 cups epsom salts in tub of hot water, soak for 20-30min)

as well as supplementing with calcium/magnesium/zinc

[faith]

Hello mblack,

my son who has tics does not seem to experience the restless legs, but I definitely do. It feels like I've probably had this for about 10 years or so, and it is just something I deal with and have not really tried anything longterm to relieve it. I only experience this at night in bed, it sort of comes and goes, and I have noticed it definitely flairs worse when I have consumed red wine that day, so I have been avoiding that. Perhaps you could start logging what your child eats during the day and when it is worse, maybe you could pinpoint a food or drink that seems to make it worse.

 

And I seem to remember that when I spoke on the phone to Bonnie Grimaldi's husband about their supplements, he did say that Restless Leg syndrome is related to TS ("on the spectrum").

 

Dedee, you mentioned inositol as helping your son -- do you mean it relieves the restless feeling or just helps with his tics (or is he not the one with tics?). Our naturo has added this supplement for my son to further relieve anxiety, although I gave a little about a month ago and of course, imagined more tics, so stopped. I am going to try again because he still has some lingering vocals and am worried about the anxiety of school starting at summer's end. Could you tell me more about your experience with the inositol (what effects it has had and who recommended that?). Also, does your son with tics take that too, and if so, has it helped at all with that?

 

Thanks

Faith

[Cum Passus]

Hi mblack,

 

My husband and son have TS. When I was trying to get info from my husbands side of the family about TS, my husbands brother said when he was a kid he shook his legs at night. He did this so violently that his parents could hear it from down the hall. I think it is interesting that my husband had TS and his brother had RLS and nobody new what either one was.

 

Just thought that was a family connection you would find interesting.

 

C.P.

[Dedee]

Hi Faith,

 

My son that has RLS is not the same child that has PANDAS and tics. Although he does suffer from some mild OCD symptoms he has never been officially diagnosed or treated. I had read some articles posted here regarding anxiety, OCD and Inositol and thought I would try it for him since he is not on any prescription medication. It does seem to have helped him at night which was his most difficult times. My oldest son with PANDAS, is on medication for his OCD so I do not give him the Inositol. Hope the info is helpful.

 

Dedee

[bmom]

mblack,

I would definately look into getting a strep blood test done to rule that out. My son had a 3 month episode of many tics and RLS starting in Feb-April. I still dont know what it was caused from. I did most of the suggestions on the website and he is fine now and pray everyday it continues. By time I understood PANDAS and did the test, his symptoms had mainly diminished and blood came back fine, but I often wonder if it was all caused by strep still as I did not have him take the test until 3 months into it. Good to rule it out so you know and dont wonder. His Dr. did not know anything about it. I faxed info and he agreed to the test. It is not just people finding stuff on the internet. I have spoken with another Dr. who said it is in her new medical text book. Most Dr. may not know as it is something they did not learn in med school.

[kim]

You know, Requip (prescription drug used to treat RLS) is actually a dopamine agonist, so it activating dopamine receptors.

 

I find that really confusing.

 

Now if ADD/ADHD is found in a higher % of people with TS, what's the deal here? Ritalin may be beneficial because of the possibility it's increasing the availability of dopamine too (altho not in exactly the same way requip is thought to work). Or is it the second choice, regarding serotonin?

 

http://en.wikipedia.org/wiki/Ritalin

 

The means by which methylphenidate helps people with ADHD are not well understood. Some researchers have theorized that ADHD is caused by a dopamine imbalance in the brains of those affected. Methylphenidate is a dopamine reuptake inhibitor, which means that it increases the level of the dopamine neurotransmitter in the brain by partially blocking the transporters that remove it from the synapses.[8] An alternate explanation which has been explored is that the methylphenidate affects the action of serotonin in the brain[9].

 

I know we had at least one Mom here, who said that ritalin helped alleviate her daughters tics...if people with TS truly have more or extra dopamine receptors, how does this work?

 

Parkinson's symptoms are attributed to the death of dopamine receptors (I believe), yet I read one article that stated the "tics" were not alleviated in people who went on to develope parkinson's. Maybe different parts of the brain?

 

Anyone have any thoughts?

[kim]

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

 

 

Both interpretations are consistent with the hypothesis of hypoactive dopaminergic neurotransmission in RLS as increased receptor levels can be owing to receptor upregulation in response to low levels of endogenous dopamine.

 

 

1: Mov Disord. 2004 Sep;19(9):1084-7. Links

Restless legs in Tourette syndrome.

Lespérance P, Djerroud N, Diaz Anzaldua A, Rouleau GA, Chouinard S, Richer F; Montréal Tourette Study Group.

Centre Hospitalier de l'Université de Montréal, Montréal, Québec, Canada.

 

Restless legs syndrome (RLS) and Tourette's syndrome (TS) share some common features, including the phenomenology of sensations relieved by movements, but few studies have examined the links between RLS and TS. We examined RLS and other TS comorbidities in 144 probands with TS or chronic tics and their parents. RLS was present in 10% of probands and 23% of parents with no gender differences. RLS in probands was linked significantly to maternal RLS but not paternal RLS, suggesting that a maternal RLS factor may contribute to the variable expression of TS.

PMID: 15372602 [PubMed - indexed for MEDLINE]

[kim]

I have read similiar things regarding an increase in receptors when there is a deficit in presynaptic neurons. The body will compensate with additional receptor production. If there are more receptors or more "dense" receptors, couldn't tics be the result of too little dopamine at some point, in at least a subset of TS people?