My Sons tics, sharing our story

[edsonr]

Hello I just wanted to share my story, and maybe it will help others.  I'll try keep this focused and straight to the point.

My son started his "noticeable" tics on Christmas eve 2017.  Pediatrician said it's command and would go away, just not sure when.  I started to get more and more concerned as frequency increased, at times it would be several times a minute.  He had motor tics with his arms, then later shoulder shrugs, then neck turning, and facial tic (that we thought were just too much screen time).  No vocal tics noticed. He had a bad diet being a bit picky, and would eat lots of candy, he would also get lots of tablet time.  I had my share of sleepless nights thinking and worrying about him.

I tipped off about the book "Natural Treatments for Tics and Tourettes..."..and that book, lifted my spirits, inspired me, gave me hope, and energized me to help my son.

Here's what I implemented at home:  (mind you, the night before I started making changes, he was sick with a fever and tic'ing restlessly)

• Bought magnesium gummies to give him
• Bought fish oil
• Cut the high fructose out of the diet
• started removing artificial flavors and colors
• cut down on screen time

When he was sick for about a 8 day stretch, I started the plan above.  He already hadn't been eating much since being sick, but we I started giving him magnesium supplement.  He probably had magnesium supplement for about 6 days then he got better.  We noticed immediate turnaround, for a good few days I didn't see 1 motor tic, which was going from several times a minute to maybe 1 all day.  Just seeing it stop for 1 full day, confirmed to me that there is something we can do despite what the dr's say.  

We started to be more conciseness about what we feed our kids, and tried to get more nutrients in them.  I had to explain to the both kids, that we all need to eat healthier, so we need to stop eating stuff that's bad for us.  My son was all in, he always asks now if a certain food is healthy.   

About 2 months into being more healthy his motor tics were probably 90% gone, but he still had some facial tics.  The crazy thing is even though he made great progress, just seeing a tic here and there could still sink my spirits.  

Thinking about his bad diet and him not being regular with his stool, got me thinking he may have leaky gut and that maybe he's not absorbing nutrients well. 

I know the battle may not be over yet, but I'm happy to report that he hasn't had a motor tic that i've seen in about 2 weeks, and the last week have not noticed many facial tics.  This week he's also been more regular, going #2 every other day (previously it was 1-2 per week).

What we're are currently doing:

Supplements:

• Smarty Pants Multi (whch has omega 3)
• Smart Calm Magnesium gummies (they loooove, the taste of this one)
• Fiber gummy
• probiotic gummy

Eating / Food:

• No High Fructose
• No Artificial Flavors
• No Artificial Colors
• Fruit / Veg smoothies 
• Buy Organic when we can
• Cut down on fast food - there was a happy meal or 2 in the last 2 months
• Candy is not an everyday thing, special occasions and rewards

Other:

• Cut down screen
• More board games
• Playing outside

I still allow them to have candy here and there, but nothing like before.  I just still want them to enjoy being a kid, so even at birthday parties, I'll let them splurge.

I hope someone can takeaway something from my post, I know reading posts from others often lifted my spirits while I was going through some hard times with my childs tics.

Feel free to ask me questions.....

 

 

Edited May 12, 2018 by edsonr

[edsonr]

Forgot to mention, we also do the bath salts maybe once or twice a week, and previous to that I did buy a mag creme to rub their backs with at night.

[supermom13]

My son started with tics a few months ago.  He also ate alot of junk and too much screen time Now, i am doing almost the same things as you and i have seen maybe a tic here and there since he got the flu april 30th.  He threw up atleast 10 times and in the back of my mind i think it has to be a leaky gut thing.  Why would he tics get so much better after the flu.  He also suffers from really bad allergies starting around he got the flu.  

How old is your son? 

 

[edsonr]

Hi Supermom13, 

I'm glad to hear that your son is doing much better as well!  My son is 4, but will be 5 July.  How old is your son?

Going through this has taught me a lot.  I now really think about what is going into my children.  About a month ago they both had dental appointments, my son has a couple cavities, but nothing that's bothering him, so I opted to not get them filled (I still ponder if this is the right decision or not, but hey they're baby teeth and will fall out eventually...I figure as long as we're diligent with brushing him, flossing, and fluoride that we can keep the cavity in check, and the amount of sweets we have cut out).  My daughter (6) also had a new tooth coming in and they wanted to do a brush on treatment for it to protect it, and i also opted out of that.

 

[edsonr]

@supermom13 about the flu you mentioned, I also wondered why my son appeared to get better dramatically after being sick.  My suspicion was that when he was sick he wasn't eating any junk/candy/etc...he barely ate at all, but when he did eat it was a filipino soup dish my wife makes which was a beef soup with many veggies like spinach, green beans, bok choy, and cabbage.  It was a tip off to me, that maybe it was all about his diet....??  It's hard to say, but this is what I observed and noticed.  

[supermom13]

My son is 5.  He started having tics a few weeks after his 5th birthday.  He is doing better but who knows if this is a waning period.  He had tics for about 5 weeks then got sick and the tics are very mild.  All i see left is a teeth grinding occassionally a few times a day, once or twice but mostly infront of tv.  When he started it was a sudden onset of blinking, winking, facial grimmiacing and throat clearing.  All those have passed after a few weeks.  I am so confused.  His gp and nuerologist all said its common but i wish i knew someone who went through this and went Away. 

 

[supermom13]

Yes about getting sick.  I thought because he threw up all the bad junk up that it wasnt causing tics but i am scared this is just wishful thinking.  

[msimon3]

Edsonr, reading your post felt like reading my own memories.  I have read many stories on this board over the years, but none as similar as yours is to mine.

So I respond here with hope and urgency, as I wish I had received more information and better guidance ten years ago when our child first exhibited tics.  Unfortunately, we were initially guided by two pediatricians to follow the approach of "do nothing, it will go away" which we did for two years.  That guidance was bad, and following it was a critical mistake.

Over time, the original symptoms of motor tics slowly grew into a variety of symptoms, which included loose stool, odd rashes, slight recurring fevers, joint pain, numbness, lethargy, and moodiness.  Symptoms that oddly waxed and waned.  Symptoms that seemed to get better ironically during common colds.

Seeking answers, we saw several doctors who took us down paths that led nowhere.  Maybe it was diet.  Maybe it was allergies.  Maybe it was anxiety.  Maybe it was an environmental trigger.  Maybe it was Autism.  Maybe it was Tourette's.  Time spent with all those doctors did not help us, and meanwhile the illness advanced.

Faced with no good options, my wife and I continued to research and seek doctors who might help.  Taking what felt like a big chance, we met with a PANDAS/PANS doctor in NJ who confirmed the immune system was involved and showed sustained signs of infection.  This doctor also recommended we consider Lyme disease, and ordered a tick-borne disease panel from Igenex.  The results from that panel indicated immune markers for two tick-borne diseases.

We quickly moved on to a Lyme-literate MD in Washington, D.C., who confirmed the our child's symptoms indicated Lyme disease.  After several rounds of antibiotic therapy, our child gradually became better to the point of being symptom free.  Nine years had elapsed since we saw the first motor tic.

So is your situation the same as ours?  I don't know.  The are many potential causes of tics, and finding the true cause is a challenge.  We started in a similar place as you are now.  We saw similar symptoms and we were given similar advice.  Ultimately every doctor (except the last two) failed to consider the set of all symptoms and correctly identify the disease.

I hope you can find the cause of your child's tics soon.  I would be happy to provide you any additional information about our history, and can do so over private message.  

Some useful links about Lyme and other tick-borne diseases:
http://www.ilads.org/
https://www.columbia-lyme.org/lyme-disease
 

 

 

[edsonr]

Wanted to share an update here.  My son (almost 5) has had a good 2 month run of being what appeared to be tic free.  Just last week I noticed a humming sound he was making while watching tv/tablet...its almost as if its some kind of breathing tic on an exhale with a little high pitch hum sound.  I had thought we got past tics, but now Im recognizing it as a tic.  Im feeling a little bummed out.

We have loosened up his diet as we thought he got over tics, but maybe we need to clamp down again.  We are keeping up with supplements as usual.

Has anyone experienced a tic of this type?  Or anyone have any positive advice around having a reoccurence of tics?  What should I try next?

He currently takes gummy vitamins, multi, omega3, magnesium, probiotic, fibre.

Diet wise, we cut artificial flavors, high fructose,...went more organic.  Although, like I said we have loosened up on his diet and has probably had a little high fructose and artifical flavors/colors.  We did not cut dairy or gluten.

I know hes had some slight allergies (itchy eyes, sneezing)..but hes not taking anything for it.

Any advice or positive thoughts is appreciated.  

 

[Kathyw]

Msimon3- can you provide the info of the PANDAS/PANS Doctor in NJ?  My son started with mild motor tics in early 2018.  Since then the tics progressed to badly that he’s shrieking in high pitch voice continuously through out the day, along with several motor tics. He’s seen a neurologist who said his tics are recent and we need to wait and see.  His tics definitely worsen during the spring pollen season.  I’ve watched his diet very closely and observed no specific trigger.  I even stopped his competitive swimming for fear of chlorine as a trigger and also wanted to reduce his anxiety.  He’s had about 5 acupuncture treatments without any improvement.  Recently it daunt on me that last year he had issues with his muscles and the orthopedist ordered Lyme testing.  The result showed positive on the IgM but negative on IgG so his pediatrician declared the result to be false positive. Since his muscle pain went away after chiropractic treatment, I didn’t pursue the issue.  Now reading upon the link between Lyme and tics, I’m beginning to wonder if I should pursue this possibility.  I know it’s very tricky to diagnose Lyme and wanted to get an expert take on it.

[msimon3]

kathyw I will private message you

[edsonr]

Update:

My son progressively got worse....increase of tics over the course of 9 days.  

Last night during dinner he was ticcing every few seconds....i know he was tired because he was falling asleep eating in his seat.  Oddly he did have 10 hours of sleep the night before, but no nap.

He hurt his leg a bit ago where he couldnt walk for a day, and had a limp shorlty after...the stress could trigger things.  I also gave him IBProfin a couple times last week, but felt bad after reading the label....high fructose corn syrup and dyes added.  Maybe that stuff is still in his system?

Moving forward, the changes we are making is logging everyday his consumption, activities, supplements, and how bad his tics are morning/afternoon/evening.  I also purchased collegan powder, ordered better probiotics, and some calcium.  Ive told the wife to try to reduce his sugar intake in general even natural sugars.  I want to see how he does with a week or so with less sugars.  I also stopped claritin, wasnt sure if he was getting a reaction from that.  Im still thinking possible leaky gut...I have a consultation with a dr who does alterantive medicine on Monday.  I might go that route to get guidance on supplements, and maybe do some testing to check for bad yeast gut issues, heavey metals, food sensitivities.

I hope we can get him back on track, im starting to worry as his bday is in less than a month, and he'll be starting kindergarten in sept.  Would be great to have things under control by then.

If anyonr has any input on other things to try, Im all ears. 

I do wonder if I should just go to his regular pediatrician instead to get some of these tests done.

[MaryAngela]

Ask the alternative doc about the OAT test (Organic Acid Test). It’s a urinalysis that measures yeast and maybe ammonia levels.  I know yeast can impact tics.  

[edsonr]

Thanks @maryangela -- I will inquire about that.

[edsonr]

After a terrible Monday/Tuesday/Wednesday with tic activity, we saw some promising results starting Thursday.  A nice reduction of tics, maybe cut down by half.  I hope the trend continues.

What did we do differently?  We'll we've cleaned up his diet all week, cut down on sweets, and have been supplementing with collagen powder...though none of that seemed to make any immediate impact, the one thing we did Wednesday night was up his Magnesium, instead of 1 in the morning and 1 at night, he had 1 in the morning and 3 at night (gummies, each with about 83mg per as magnesium citrate ). That evening he slept a solid 11 hours, and Thursday we saw great improvement.  He didn't tic until about noon at the playground, a couple, and in the evening he would still tic, but not nearly as much as previous evenings.  Going forward we're going to do 1 mag in the morning and 2 in the evening.  We've also noticed a slight change in mood/behavior -- he wasn't as cranky as we've seen the last few days, and he was more joyful and a bit refreshed.

It got me think about how magnesium get's flushed from the body and started to look into magnesium relationships to other vitamins and minerals.  I did learn that vitamin D requires magnesium present to metabolize and 'activate' vitamin D in the blood stream.  So the more vitamin D intake, the more your Magnesium get's "used up".  I'm also wondering if it's coming out in sweat as well.

After learning that, I'm probably "reaching" here, but I do wonder because of the sunshine and heat we've had, plus the fact I hid the kids tablets to promote more playing outside, that maybe he's being depleted or requiring more magnesium.  Since about end of May we've had good weather, hardly any rain, and my son has been spending lots of time running around outside.  I'm wondering if there's a real connection here. I do still think he may have some underlying gut issues that could be the main cause, and will get some testing done this summer.

I would love to hear someone with experience or better training on how these vitamins and minerals work and how it could re-trigger a tic bout.