8 year old boy with transient tics

[itsme]

Update:

I finally have an appointment with a Naturapath Dr today. When I first called the Dr I am taking my son too asked some good questions. She also wants me to bring in the current supp. he is taking. I am going to ask for a in depth alergy test as well as heavy metal. Any other tests that I should ask for?

Thanks in advance

Hi Lenny, we also got the urinalysis for amino acids and stool analysis for yeast and a hair mineral analysis. Maybe I'll give you a buzz later, around 3 our time.

[lmcgill]

Today he has been blinking bad, big hard ones. I can think of perhaps two things, the alergy medicine or he had Little Ceasers Pizza for lunch yesterday. No twitching, just the eye blinking. What does anyone think?

[faith]

Lenny,

What kind of allergy medicine? Why do you give that and what is he allergic to? Have you done any tests with the naturo yet? what were her/his recommendations? Will they do any allergy/food sensitivity testing?

Did you start giving the taurine yet? sorry so many questions, I just like to know specifics. Hope things settle soon.

 

Faith

[lmcgill]

Lenny,

What kind of allergy medicine? Why do you give that and what is he allergic to? Have you done any tests with the naturo yet? what were her/his recommendations? Will they do any allergy/food sensitivity testing?

Did you start giving the taurine yet? sorry so many questions, I just like to know specifics. Hope things settle soon.

 

Faith

I am still waiting his tests, probably next week. If you see my earlier post it mentions the type of allergy product, I can't remeber right now. Just dissapointing for me, he has been doing good for a long time. His blinking was severe today. Sunshine sent me a PM that said the little ceasers pizza was high in gluten and maybe had MSG. I gave him a epson salts bath tonight so maybe tomorrow will be better. I just hope it doesn't turn into twitches. I also stopped the allergy pills this morning.

Lenny

[Tattoomom]

Lenny,

What kind of allergy medicine? Why do you give that and what is he allergic to? Have you done any tests with the naturo yet? what were her/his recommendations? Will they do any allergy/food sensitivity testing?

Did you start giving the taurine yet? sorry so many questions, I just like to know specifics. Hope things settle soon.

 

Faith

I am still waiting his tests, probably next week. If you see my earlier post it mentions the type of allergy product, I can't remeber right now. Just dissapointing for me, he has been doing good for a long time. His blinking was severe today. Sunshine sent me a PM that said the little ceasers pizza was high in gluten and maybe had MSG. I gave him a epson salts bath tonight so maybe tomorrow will be better. I just hope it doesn't turn into twitches. I also stopped the allergy pills this morning.

Lenny

 

Lenny,

 

My son has high IgG antibodies to gluten,wheat and casein. We knew this before he started having tics but always found the elimination diet extremely hard and never felt there was a big enough reason to go gf/cf.

 

Now that he has the blinking tic, we have cleaned out our pantry and started replacing our diets to a more gf/cf. It's hard and were not 100% all the time yet, but I have to admit, that since we've removed the offenders, his blinking has went from 95% of the time to 5% of the time. *knock on wood* not to jinx it.

 

I would definitely try to do a elimination diet if I were you. It seems like I remember reading a few of your posts with you saying the tics got worse after your ds had pizza or milk. Those could definitely be making it worse.

 

Just my humble opinion!

[lmcgill]

Faith

I am still waiting his tests, probably next week. If you see my earlier post it mentions the type of allergy product, I can't remeber right now. Just dissapointing for me, he has been doing good for a long time. His blinking was severe today. Sunshine sent me a PM that said the little ceasers pizza was high in gluten and maybe had MSG. I gave him a epson salts bath tonight so maybe tomorrow will be better. I just hope it doesn't turn into twitches. I also stopped the allergy pills this morning.

Lenny

 

Lenny,

 

My son has high IgG antibodies to gluten,wheat and casein. We knew this before he started having tics but always found the elimination diet extremely hard and never felt there was a big enough reason to go gf/cf.

 

Now that he has the blinking tic, we have cleaned out our pantry and started replacing our diets to a more gf/cf. It's hard and were not 100% all the time yet, but I have to admit, that since we've removed the offenders, his blinking has went from 95% of the time to 5% of the time. *knock on wood* not to jinx it.

 

I would definitely try to do a elimination diet if I were you. It seems like I remember reading a few of your posts with you saying the tics got worse after your ds had pizza or milk. Those could definitely be making it worse.

 

Just my humble opinion!

He is still doing the blinking bad today. Do you know how long the body needs to get back in line? I can't remember.

[Cum Passus]

Lenny,

 

I never gave my son food out for almost a year. We decided to give him a Burger King burger (no fries) and he had no problem. He also eats at Subway with no problem. Have not tried pizza yet.

 

If they have MSG my son didn't react.

 

Last year when he was at his worse it seemed he reacted to, FOOD PERIOD!!

 

Good luck I hope this does not last too long.

C.P.

[WorriedForumMember]

On 12/16/2006 at 7:22 AM, Claire said:

Jackie/Kilam

 

Please do let us know how it goes when you stop TV (and computer?) for 7-10 days. I think it is good to track that on the survey thread...a lot of people have seen a major difference there!

 

LcMcgill,

 

Sometimes when people think their child is ticcing when 'relaxing and watching TV', the CRT TV screen or animated/flashy show is actually the tic trigger.

 

 

I bumped a thread for both of you on people's experience with the TV/computer trigger. If it IS a trigger, there are things you can do to minimize it, plus it may guide you as to the immune issues/deficiencies associated with it.

 

Good luck,

Claire

Hi, Claire I am new to this forum and I am not familiar with some slang like "bump a thread," but I guess it means sending.

I know it's a very old post, but could you provide me the same info please? (Bump the same thread to me)

Thank you very much!

[WorriedForumMember]

On 12/13/2006 at 6:34 PM, lmcgill said:

Hi, I am new to this site, however my situation is probably not. We have an 8 year old boy who started with heavy eye blinking about 10 months ago. This escalated into shoulder and abdominal twitching several months later. All his symptons went away in the summer but came back late prior to school. He has no Attention Deficite problems or any other learning problems, in fact he is a very bright boy, just a little shy. He loves school, and the teacher does not notice any tics at school. He seems to have them in the morning and in the evening, especially when he is relaxing such as laying on the couch watching TV. He seems to have them during mealtime as well. I know they will eventually go away, but I get so depressed observing him it is effecting me. I have read alot, and last week tried Magnessium supplements which seemed to help reduce the severity. He was twitching so violently I thought he would fall off the couch, and this week he was much better, but then he had a bad flair up this morning. I have read a lot about diet, and my mom is Celiac, (no wheat gluten free) and was curious as to if anyone had success with gluten free and tics. I know he is not TS, he has no vocal tics, and his tics to come and go. The last two nights we served him for dinner a lot of gluten patties, he loves them, and I was wandering if this could have triggered it? I think some of the problem I have is dealing with it myself. He is such a sweet boy and has Aortic Stennosis (faulty heart valve) that will require surgery in the next several years. It makes me cry to see him have to go through the tics. There is no history in our family that we know of tics or TS. He is also a twin, with a very healthy robust sister that is 10 lbs heavier and very athletic. There, a short history, like I said, I probably need the advice more then him! He is very happy and appears normal from our observation and his grade two teacher. We just had a parent/teacher conference last night and was told he was a very good student, just a little shy.

Hi Imcgill. Years have passed by after your post. How did it all end up? I would be very pleased if you would be willing to share the outcome.

[lmcgill]

He is great now, besides going gluten free and watching his diet, he is tic free. Please pray and believe it will pass by. 

[mert]

Tics wax and wane , I am recording an excel sheet that saves all sub-parameters of YGTSS (which I find pretty coarse) for each and every day for my DD. Unfortunately I am unable to correlate tics to food/allergy/complements at the moment (also there is no scientific evidence on this too) but still watching closely.  

At most of the tic disorder cases , tics elevate in frequency and intensity during TV/ipad/phone watching (there are 1-2 theories on this) and I've read on several episodes that eating also has a similar effect. Both of those hold true also for my daughter. 

First of all I think that TS should be removed as diagnosis completely. Tics are likely a spectrum, and here is a nice study supporting this : https://www.ncbi.nlm.nih.gov/pubmed/30661132

I also disagree that every  tic resulting a 'sound' is actually a vocal tic. Abdominal tics can result in sound outputs involuntarily. (which we also had) 

Unfortunately it looks like either there is no such thing as transient tic disorders or it's rare. Here is a nice study that shows that tics were detectable after 12 months in 100% of the cases, however severity decreases significantly. https://www.ncbi.nlm.nih.gov/pubmed/30850688/

In your case absence of anxiety disorder clearly gives an advantage for marked improvement in 12 months. 

Our case looks very familiar to your case. I have thread where I regularly update our status. In summary we started with very severe tics on large muscle groups and now in 18 months (with a lot of waxing and waning) tics are still with us, however significantly milder and the difference between our best/worst periods are decreasing. 

In our case I found the following mostly helpful : 

1) Keep her occupied. We sometimes watch TV, but I try to make it as interactive as possible and don't leave her a lone with TV. Still her tics elevate during TV sessions usually. Ipad is only used for accessing information. 

2) Even without visible anxiety disorder, we do our best to either remove unnecessary anxiety from the environment or give her necessary skills to manage difficult situations without being anxious. 

I am almost sure that you will be better and better with time. 

[WorriedForumMember]

On 1/28/2020 at 4:37 AM, lmcgill said:

He is great now, besides going gluten free and watching his diet, he is tic free. Please pray and believe it will pass by. 

Thank you for answering after all these years. It's a hopeful answer.

We restricted TV (to zero) and after a week or 6 (and ups and downs that seemed to damp out with time) it disappeared for now. We didn't put her in front of the TV so far, so maybe the comparison is not fair, but before she also had tics when tired or eating, that disappeared.

We are hesitant to let her watch TV. I am not a doctor but I somehow think that the brain will develop differently if the tics are being triggered and stimulated continuously.

Although we don't have any proof, she sleeps much better since she doesn't watch TV. I am sure this helps.

I hope to come back with more good news in a few years.

Edited January 31, 2020 by WorriedForumMember
Spelling errors

[WorriedForumMember]

11 hours ago, mert said:

Tics wax and wane , I am recording an excel sheet that saves all sub-parameters of YGTSS (which I find pretty coarse) for each and every day for my DD. Unfortunately I am unable to correlate tics to food/allergy/complements at the moment (also there is no scientific evidence on this too) but still watching closely.  

At most of the tic disorder cases , tics elevate in frequency and intensity during TV/ipad/phone watching (there are 1-2 theories on this) and I've read on several episodes that eating also has a similar effect. Both of those hold true also for my daughter. 

First of all I think that TS should be removed as diagnosis completely. Tics are likely a spectrum, and here is a nice study supporting this : https://www.ncbi.nlm.nih.gov/pubmed/30661132

I also disagree that every  tic resulting a 'sound' is actually a vocal tic. Abdominal tics can result in sound outputs involuntarily. (which we also had) 

Unfortunately it looks like either there is no such thing as transient tic disorders or it's rare. Here is a nice study that shows that tics were detectable after 12 months in 100% of the cases, however severity decreases significantly. https://www.ncbi.nlm.nih.gov/pubmed/30850688/

In your case absence of anxiety disorder clearly gives an advantage for marked improvement in 12 months. 

Our case looks very familiar to your case. I have thread where I regularly update our status. In summary we started with very severe tics on large muscle groups and now in 18 months (with a lot of waxing and waning) tics are still with us, however significantly milder and the difference between our best/worst periods are decreasing. 

In our case I found the following mostly helpful : 

1) Keep her occupied. We sometimes watch TV, but I try to make it as interactive as possible and don't leave her a lone with TV. Still her tics elevate during TV sessions usually. Ipad is only used for accessing information. 

2) Even without visible anxiety disorder, we do our best to either remove unnecessary anxiety from the environment or give her necessary skills to manage difficult situations without being anxious. 

I am almost sure that you will be better and better with time. 

Thanks for this thorough analysis!

I agree with everything you stated, and have the same findings, however there's one issue where I have my doubts and that's the first one you mentioned: Food!

Food must have at least some influence as many people on fora report improvement restricting gluten and increasing food that contains magnesium.

You say there's no scientific evidence for the influence of food, however since food affects the quality of the bacteria in your gut, there is an indirect evidence that food surely matters.

Take for example the Chinese boy from the link below where researchers transplanted poo bacteria from a healthier other person's gut in his gut, after which the amount and severeness of the tics decreased significantly.

https://www.google.com/amp/s/www.dailymail.co.uk/health/article-5307749/amp/Boy-9-tics-cured-POO-TRANSPLANT.html

A promising method, for more issues than tics alone. We may try home made Kefir to improve the quality and composition of the gut bacteria.

[Chemar]

Mertol, I do think it's important to remember that, just as with anything that appears to fall into a Spectrum, symptoms and triggers etc vary greatly from individual to individual. People have so many variables in their immune systems and allergy/sensitivity scales that it really is not possible to make blanket statements eg that food isn't a factor, or that vaccines, antibiotics  etc have no impact.

In the 20+ years we have been on this journey with my son, with the clear genetic Tourette Syndrome link that runs in his dad's side of the family, coupled with whatever my side brings to his genetic mix, we have learned that you cannot put people with tics in a one size fits all box!

I think it's very important to keep an open mind, and check as many things as possible, keep a journal and learn what helps and what hinders. That certainly was an outlook that provided tremendous help in our experience.

 

[mert]

Maybe I should clarify , I did not say that food/allergy/environmental factors etc are not related to tics. As a side note, on a few scientific researches allergy frequency seems to be higher among children with tics vs general population. 

However there seems to be no scientific, properly managed research on effect of diet on tic severity. that does NOT mean that diet has not effect on tics. It's not easy to plan a research that will correlate diet vs tic severity due to several factors. Individual experiences should not be presented as 'cases' , one of the reasons is, as stated on the research I linked on my first post, tic severity has tendency to decrease upon onset date within 12 months, significantly already. So it would be very difficult to asses the effects of diet change ( or complementary vitamins etc... ) alone unless you have significant amount of people monitored a long with a control group. 

That still does not say say diet has no effect, it only says there is no scientific research backing up this claim. 

There are lot's of unknowns about this spectrum, however it looks like at last it's now been recognized that while not fatal , it's effects on quality of life of the individuals and family can be severe. So we will be seeing lots of new research on the topic in this year.