tic

[annag]

Hello, all, I am so hopeful someone can help me. I am new to this site.

My daughter is 12 and all of a suddent developed a tic in her shoulders, first one, now both. It has been 10 weeks now . It still did not go away. Both shoulders are twitching quite constantly and she is constantly in pain. Towards the end of the day the pain is quite sever because of the muscle contracting the whole day long. There are many evenings when she can not fall asleep, is really miserable and overall it is very scary experience. We have gone thru 2 neurologists, had EEG, cat scans, blood work, x-rays on neck and spine, all is fine. All tests are negative. We have gone thru 6 visits to physical therapy, 6 visits to biofeedback, 2 different orthopedic doctors, now we are doing acupuncture (did 3 sessions already and will do 3 more and it is not covered by insurance). Nothing really seems to help. Whenever I speak to the neurologists they say that ticks can take a long time to go away and sometimes it doesn’t (????) and they prescribe me clonopin and some other drugs which I really have not given her. Because of side effects and because the problem is not to become sleepy and drowsy but to get rid of pain and twitching which these drugs don’t do. I am really at loss… I see some people are writing about supplements. Can you advise which ones? I don’t know what else to do and it is so very frustrating. If you have any ideas- please!

[Chemar]

Hi annag and welcome

 

I think many of us can identify with your frustration

 

there are a number of things that can cause childhood tics and as you dont know for sure what is the root of your child's tics, medication may really not be the way to go.

 

whether with children who have genetically inherited Tourette Syndrome (TS) or whose children have tics from strep (PANDAS) or from many other things that have been found to trigger tics, anyway most of us can say that increasing magnesium, adding other supplements specifically needed and cleaning out artificial additives from diet goes a long way to a healthier child and less tics.

 

 

my best advice to you is to start reading slowly thru topics here and ask as many questions as you need to.

 

also do remember that with many kids, childhood tics are not unusual, and in many cases they do just go away on their own. I would highly recommend a good chiropractor too to help reallign the parts that the tics are putting out. this will help so much with the discomfort.

 

even something like an evening epsom salts bath (magnesium sulfate powder) with 2 cups magnesium in a tub of warm water, 20 min soak, can have a very calming effect on tics and ease the aches and pains they can cause, while promoting a good sleep.

 

I have a link in my signature as to what we did to help my son's tics. we did try meds for a year with disastrous results. After focussing on nutrition, and alternative therapies like acupuncture and also regular chiropracty, we have seen remarkable improvement, maintaining for many years now

 

Cheri

[michele]

I've noticed Taurine is helping my son alot with his tics. It helps brain methylation and is for calming. They are still present but alot less. He only weighs 38 lbs. so he takes 250 mg. once a day. However if your daughter is older she may be able to take the whole capsule which is 500mg. We cut it in half. It has helped us. GABA can help with rest at bedtime 250-500 mg. Also GABA is a mood stabilizer. It can be taken up to three times a day. Again you can cut it in half to take 250 mg.

 

I hope you see improvements soon. If she is in pain it must be very hard on her. Plus at twelve girls are very self-conscious. This also must be very overwhelming for you. Read alot but don't overload yourself. Try to start small so you know if you see any results from certain supplements.

Michele

 

Hello, all, I am so hopeful someone can help me. I am new to this site.

My daughter is 12 and all of a suddent developed a tic in her shoulders, first one, now both. It has been 10 weeks now . It still did not go away. Both shoulders are twitching quite constantly and she is constantly in pain. Towards the end of the day the pain is quite sever because of the muscle contracting the whole day long. There are many evenings when she can not fall asleep, is really miserable and overall it is very scary experience. We have gone thru 2 neurologists, had EEG, cat scans, blood work, x-rays on neck and spine, all is fine. All tests are negative. We have gone thru 6 visits to physical therapy, 6 visits to biofeedback, 2 different orthopedic doctors, now we are doing acupuncture (did 3 sessions already and will do 3 more and it is not covered by insurance). Nothing really seems to help. Whenever I speak to the neurologists they say that ticks can take a long time to go away and sometimes it doesn’t (????) and they prescribe me clonopin and some other drugs which I really have not given her. Because of side effects and because the problem is not to become sleepy and drowsy but to get rid of pain and twitching which these drugs don’t do. I am really at loss… I see some people are writing about supplements. Can you advise which ones? I don’t know what else to do and it is so very frustrating. If you have any ideas- please!

[kim]

Anna,

 

Here is the Bontech website

 

http://www.bonniegr.com/

 

Also, with the info you provided in private message, I'm wondering if this is a term that was mentioned by any of the Drs?

 

Benign Fasiculation syndrome....just google this, you can get a good overview of symptoms

 

This is a web group that may be of interest to you. There is one post with links to a couple other forums. If you can really get a handle on what most closely matches your daughters situation, it may be easier to find the right supplement program.

 

http://www.medhelp.org/forums/neuro/messages/31935.html

 

Let me know what you think!

 

Kim

[emma1]

As I was searching this forum I found this post which I thought was extremely helpful. I know there is supposed to be a way to attach it, but I don't know how! This is a post from 2004 (I think) from Claire:

 

Below is a one week trial plan I put together that may be doable for newcomers. Often, people have multiple issues.

 

Many of us had longer term treatments that made a difference (Heather and yeast, mercury for others), but it may be hard for people who can't afford doctors to guide them to 'believe' and motivate themselves to do this on their own. My goal is to have something that shows right away that alternative methods DO make a difference, so newcomers may be more willing to go the distance and address all the issues.

 

I compiled a list of the things that seemed to benefit multiple people on this board to get people started. Inherently this will be more than some people need. You can try one or two things at a time or go on a camping trip in the spring (e.g no electricity, limited food choices...) A parent wouldn't even have to tell a younger child what was going on -- they could just have run out of certain foods, that week, make a big deal out of practicing home cooking, and insist on family time over TV/computer time, but that is an individual thing.

 

Finally, I listed the elements separately, so a parent can pick and choose a subset if they would like.

 

Below is my recommendation --good to read posts from lots of people on their success stories. Any 'compilation' post inherently doesn't reflect individual success plans.

 

------------------------------

BEFORE STARTING THE WEEK TRIAL PLAN

 

1) Though both Tourettes Syndrome (TS) and other tic syndromes can improve with alternate treatments, with TS you are more likely to have some continuing tics (and even with tic syndromes). Tic syndromes affect 10-20x the number of children than TS.

2) The object of the long-term treatment is to improve your childs physical health and to find a balance of a manageable program and minimal tics, that keeps a close eye on your child's mental health from too much focus on this and too many restriction. Whether it is tic syndrome or Tourette's, the plan is the same.

3) A low stress environment is always beneficial for children with neurological issues.

4) I believe that the unanimous advice of the regulars on this board is to never ask your child to stop ticcing. The treatments help reduce their urge to tic, we never ask them to control tics--it doesn't work, perhaps temporariliy--and then can backfire, but in terms of emotions and tics.

5) Yeast is a common underlying condition for many of our kids. Try this free at-home spit test. First thing in the morning before they drink water, have your child spit into a glass of water. If the spit floats, they 'pass'. If it sinks or has stringers coming down, they may have yeast issues. There is a whole diet plan for yeast, such as avoiding sugars, refined carbs, molds, vinegars. Plus supplements such as capryllic acid, garlic, olive leaf extract, threelac.. do your research there.

6) ALTERNATIVE DOCTORS. If you can afford an alternative doctor to guide you, this is ideal--mainstream neurologists generally aren't aware of these methods. Sheila Rogers, the site editor posted a list on the thread at the top of the forum, to guide you through this process. Please don't be confused by the title "DAN" doctor-- (Defeat Autism Now), their testing protocols cover a spectrum of neurological disorders (yeast, metals, food sensitivities, vitamin deficiencies...) that seem to occur in many people on this board. Correcting these imbalances has helped many of us. The lists have MD's and naturopaths, so you can pick whom you are most comfortable with.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

-------------------------------------

*****THE 7 DAY TRIAL PLAN*****

If you can't yet afford an alternative doctor (see above), or want to try some things while you decide on a doctor, this is something to try for 7-10 days that is a combination of methods that many of us started with. It is not a complete plan, does not address longer term issues such as metals, and yeast. Also, supplementation should be done with a doctor's supervision, especially for longer periods. You can ask your pediatrician if one week on these supplements is okay.

 

I think it is easier to do supplements at a different time than everything else, since some supplements (e.g. certain EFAs) can actually make tics worse in some people. Yeast detox can also make tics worse. So I would separate the supplements plan and do it the following week, adding one supplement at a time. Or do it first, though usually it takes longer to see results. In the end, the body needs healing, so even if removing a trigger such as screens works, it is not the ultimate long term solution. It is more that for some it would give a quick and sustained improvement while you heal their system. In the end supplements to rebuild the system, and avoidance of problem foods and artificial ingredients are likely to be most important to healing.

 

1) NO SCREENS for a week (no TV/Gameboy/Big screen movies) [For 14 of 15 people that I know tried this, it made a big difference at the time--clearly, it was most effective at the beginning of the program--before healing occurred, but this is where the newcomers are. Over time, either try an LCD monitor or once their system is in balance, many can tolerate CRT screens again

Summary of posters stories:

http://www.latitudes.org/forums/index.php?...p?showtopic=852

 

2) SUPPLEMENTS TO GET STARTED (in lieu of testing for deficiencies. If you take away foods in the next step, you will want to make sure they have a solid base of vitamins. At this point I would do RDA's and later customize more based on doctor guidance

-Magnesium Taurate

-Calcium Citrate with Vitamin D

-Omega 3's 1 pill fish oil often preferred over flax seed oil for boys, but some have issues with fish oil, do this one by itself

-Borage or Evening primrose oil for GLA--1 cap each

-Probiotics 1 cap (for yeast issues)

-B6 or p5p on alt days (B's make some kids hyper)

-B complex (B1, B2, folate, B3-Niacinamide...)

-A multi-vite with A/C/E/Selenium --at doses in the multivites

-no copper or artificial ingredients in the vitamins

-Alt day: B-12 (with methylcobalomin) sublingual tablets or gum

-Alt days: Iron (unless they get it in fortified cereals) by itself

-Zinc Citrate/piconlinate at bedtime, by itself

-low or no manganese--it can aggravate tics.

 

Add vitamins one day at a time to test for reactions. Or investigate www.bonniegr.com for her supplement program, but then if your child reacts to some, you wouldn't know. With vitamins, more is not necessarily better! Capsules are easier to swallow, so is using a straw (Chemar's tip)

 

3) NO ARTIFICIAL INGREDIENTS.

No artificial colors, flavors, or preservatives. Shopping at Whole Foods or Wild Oats is generally safe. www.feingold.com is a non-profit program that maintains lists of acceptable foods. In addition to the artificial additives listed on Feingold, most here avoid corn syrup (esp high fructose) and sucralose.

summary of poster's experience

http://www.latitudes.org/forums/index.php?...p?showtopic=795

 

4) ENVIRONMENTAL ALLERGEN CONTROL. If your child has respiratory allergies, wash all his/her bedding and put a HEPA filter in their bedroom. A anti-dustmite pillow and/or mattress cover would be ideal. Vacuum the room before bedtime (but not with the child in the room)

 

5) ELIMINATION DIET yes, normal foods can cause tics--if your child is sensitive. There are formal testing methods to determine this (e.g. IgG blood tests), but an elimination diet is doable if you don't have a doctor or the funds to test. The objective is to see which foods your child reacts to, if any.

summary of poster's experience

http://www.latitudes.org/forums/index.php?...p?showtopic=794

 

The most common one seems to be milk and wheat (actually casein and gluten)

Many/most here had multiple allergies, but it is a good place to start. If I had to pick on, it would be dairy.

 

Before you begin, I would strongly suggest that you plan out the diet before you get started. Make sure you have the safe foods list ready and the food stocked in house. Doris Rapp's "Is this your child's world" or "Our toxic world" may have a list--or call your my ENT/Allergist today and ask for a standard food elimination diet list.

 

You will also need recipes and alternatives so that your child can still have delicious, nutritious meals. Amazon.com has a great book I got--it has really helped with wheat/milk substitutions --the standard American diet is 70% wheat and dairy. They have wheat/gluten-free, milk-free, egg-free and even lots of yeast, corn-free and soy recipes.

 

If the food elimination plan works, and if you indentify the sensitive foods, you can investigate enzymes with meals (e.g. Houston Pharmaceuticals). But it affects the supplement program, e.g. you should take less B3 and B6.

 

4) AIR FILTER in the room at night ( for families with potential mold, dust, synthetic carpeting, and/or paints and chemicals for the children to react to. )

 

5) Lots of prayer.

 

If significant improvement is seen after 7 days continue with the program until no improvement was seen for 3 days in a row. I see this as their neurological baseline for this particular assessment. Then they can figure out whether to add in foods one at a time, add in CRT screens, in reduce amounts, or go back to life as normal and try each category one at a time later to see if just one element is enough for them The main point is to give confidence so that they will go through the effort to find the way to heal themselves or there child.

 

Treatments vary considerably and are greatly influenced by your and the doctor's preferences. Virtually all can be done without prescriptions--just supplements.

 

Claire

[mom2three]

As I was searching this forum I found this post which I thought was extremely helpful. I know there is supposed to be a way to attach it, but I don't know how! This is a post from 2004 (I think) from Claire:

 

Below is a one week trial plan I put together that may be doable for newcomers. Often, people have multiple issues.

 

Many of us had longer term treatments that made a difference (Heather and yeast, mercury for others), but it may be hard for people who can't afford doctors to guide them to 'believe' and motivate themselves to do this on their own. My goal is to have something that shows right away that alternative methods DO make a difference, so newcomers may be more willing to go the distance and address all the issues.

 

I compiled a list of the things that seemed to benefit multiple people on this board to get people started. Inherently this will be more than some people need. You can try one or two things at a time or go on a camping trip in the spring (e.g no electricity, limited food choices...) A parent wouldn't even have to tell a younger child what was going on -- they could just have run out of certain foods, that week, make a big deal out of practicing home cooking, and insist on family time over TV/computer time, but that is an individual thing.

 

Finally, I listed the elements separately, so a parent can pick and choose a subset if they would like.

 

Below is my recommendation --good to read posts from lots of people on their success stories. Any 'compilation' post inherently doesn't reflect individual success plans.

 

------------------------------

BEFORE STARTING THE WEEK TRIAL PLAN

 

1) Though both Tourettes Syndrome (TS) and other tic syndromes can improve with alternate treatments, with TS you are more likely to have some continuing tics (and even with tic syndromes). Tic syndromes affect 10-20x the number of children than TS.

2) The object of the long-term treatment is to improve your childs physical health and to find a balance of a manageable program and minimal tics, that keeps a close eye on your child's mental health from too much focus on this and too many restriction. Whether it is tic syndrome or Tourette's, the plan is the same.

3) A low stress environment is always beneficial for children with neurological issues.

4) I believe that the unanimous advice of the regulars on this board is to never ask your child to stop ticcing. The treatments help reduce their urge to tic, we never ask them to control tics--it doesn't work, perhaps temporariliy--and then can backfire, but in terms of emotions and tics.

5) Yeast is a common underlying condition for many of our kids. Try this free at-home spit test. First thing in the morning before they drink water, have your child spit into a glass of water. If the spit floats, they 'pass'. If it sinks or has stringers coming down, they may have yeast issues. There is a whole diet plan for yeast, such as avoiding sugars, refined carbs, molds, vinegars. Plus supplements such as capryllic acid, garlic, olive leaf extract, threelac.. do your research there.

6) ALTERNATIVE DOCTORS. If you can afford an alternative doctor to guide you, this is ideal--mainstream neurologists generally aren't aware of these methods. Sheila Rogers, the site editor posted a list on the thread at the top of the forum, to guide you through this process. Please don't be confused by the title "DAN" doctor-- (Defeat Autism Now), their testing protocols cover a spectrum of neurological disorders (yeast, metals, food sensitivities, vitamin deficiencies...) that seem to occur in many people on this board. Correcting these imbalances has helped many of us. The lists have MD's and naturopaths, so you can pick whom you are most comfortable with.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

-------------------------------------

*****THE 7 DAY TRIAL PLAN*****

If you can't yet afford an alternative doctor (see above), or want to try some things while you decide on a doctor, this is something to try for 7-10 days that is a combination of methods that many of us started with. It is not a complete plan, does not address longer term issues such as metals, and yeast. Also, supplementation should be done with a doctor's supervision, especially for longer periods. You can ask your pediatrician if one week on these supplements is okay.

 

I think it is easier to do supplements at a different time than everything else, since some supplements (e.g. certain EFAs) can actually make tics worse in some people. Yeast detox can also make tics worse. So I would separate the supplements plan and do it the following week, adding one supplement at a time. Or do it first, though usually it takes longer to see results. In the end, the body needs healing, so even if removing a trigger such as screens works, it is not the ultimate long term solution. It is more that for some it would give a quick and sustained improvement while you heal their system. In the end supplements to rebuild the system, and avoidance of problem foods and artificial ingredients are likely to be most important to healing.

 

1) NO SCREENS for a week (no TV/Gameboy/Big screen movies) [For 14 of 15 people that I know tried this, it made a big difference at the time--clearly, it was most effective at the beginning of the program--before healing occurred, but this is where the newcomers are. Over time, either try an LCD monitor or once their system is in balance, many can tolerate CRT screens again

Summary of posters stories:

http://www.latitudes.org/forums/index.php?...p?showtopic=852

 

2) SUPPLEMENTS TO GET STARTED (in lieu of testing for deficiencies. If you take away foods in the next step, you will want to make sure they have a solid base of vitamins. At this point I would do RDA's and later customize more based on doctor guidance

-Magnesium Taurate

-Calcium Citrate with Vitamin D

-Omega 3's 1 pill fish oil often preferred over flax seed oil for boys, but some have issues with fish oil, do this one by itself

-Borage or Evening primrose oil for GLA--1 cap each

-Probiotics 1 cap (for yeast issues)

-B6 or p5p on alt days (B's make some kids hyper)

-B complex (B1, B2, folate, B3-Niacinamide...)

-A multi-vite with A/C/E/Selenium --at doses in the multivites

-no copper or artificial ingredients in the vitamins

-Alt day: B-12 (with methylcobalomin) sublingual tablets or gum

-Alt days: Iron (unless they get it in fortified cereals) by itself

-Zinc Citrate/piconlinate at bedtime, by itself

-low or no manganese--it can aggravate tics.

 

Add vitamins one day at a time to test for reactions. Or investigate www.bonniegr.com for her supplement program, but then if your child reacts to some, you wouldn't know. With vitamins, more is not necessarily better! Capsules are easier to swallow, so is using a straw (Chemar's tip)

 

3) NO ARTIFICIAL INGREDIENTS.

No artificial colors, flavors, or preservatives. Shopping at Whole Foods or Wild Oats is generally safe. www.feingold.com is a non-profit program that maintains lists of acceptable foods. In addition to the artificial additives listed on Feingold, most here avoid corn syrup (esp high fructose) and sucralose.

summary of poster's experience

http://www.latitudes.org/forums/index.php?...p?showtopic=795

 

4) ENVIRONMENTAL ALLERGEN CONTROL. If your child has respiratory allergies, wash all his/her bedding and put a HEPA filter in their bedroom. A anti-dustmite pillow and/or mattress cover would be ideal. Vacuum the room before bedtime (but not with the child in the room)

 

5) ELIMINATION DIET yes, normal foods can cause tics--if your child is sensitive. There are formal testing methods to determine this (e.g. IgG blood tests), but an elimination diet is doable if you don't have a doctor or the funds to test. The objective is to see which foods your child reacts to, if any.

summary of poster's experience

http://www.latitudes.org/forums/index.php?...p?showtopic=794

 

The most common one seems to be milk and wheat (actually casein and gluten)

Many/most here had multiple allergies, but it is a good place to start. If I had to pick on, it would be dairy.

 

Before you begin, I would strongly suggest that you plan out the diet before you get started. Make sure you have the safe foods list ready and the food stocked in house. Doris Rapp's "Is this your child's world" or "Our toxic world" may have a list--or call your my ENT/Allergist today and ask for a standard food elimination diet list.

 

You will also need recipes and alternatives so that your child can still have delicious, nutritious meals. Amazon.com has a great book I got--it has really helped with wheat/milk substitutions --the standard American diet is 70% wheat and dairy. They have wheat/gluten-free, milk-free, egg-free and even lots of yeast, corn-free and soy recipes.

 

If the food elimination plan works, and if you indentify the sensitive foods, you can investigate enzymes with meals (e.g. Houston Pharmaceuticals). But it affects the supplement program, e.g. you should take less B3 and B6.

.

4) AIR FILTER in the room at night ( for families with potential mold, dust, synthetic carpeting, and/or paints and chemicals for the children to react to. )

 

5) Lots of prayer.

 

If significant improvement is seen after 7 days continue with the program until no improvement was seen for 3 days in a row. I see this as their neurological baseline for this particular assessment. Then they can figure out whether to add in foods one at a time, add in CRT screens, in reduce amounts, or go back to life as normal and try each category one at a time later to see if just one element is enough for them The main point is to give confidence so that they will go through the effort to find the way to heal themselves or there child.

 

Treatments vary considerably and are greatly influenced by your and the doctor's preferences. Virtually all can be done without prescriptions--just supplements.

 

Claire

 

THIS IS WONDERFUL Information!!!

I am so glad to have found it. For whatever reason this post never showed up for me before when I searched things.

[JennyC]

I havent read the other responses so Im sorry if I repeat what someone else says. Taking dairy (all but eggs) out of my daughters diet helped my daughter tremendously. Within a week her tics were greatly reduced. She went from having several episodes a day where she would tic every other second with full arm tics in both arms and sometimes legs to only having tics once or twice a day and they were minimal tics that only I notice. A stranger wouldnt pick up on them.