Our Journey

[Bernerchiro]

I wanted to detail our journey in hopes we may get feedback or be able to help others.  We don’t have an official diagnosis yet but we are fairly certain it will be diagnosed as TS.  My son is almost 5 and over the last 6 weeks blinking started.  In the last 7 days it’s moved to various other areas including arms, nose squishing, burping, throat clearing, clicking tongue, and verbal tics.  I’m going to list all the details in hopes it may help figuring out the cause or solutions

In retrospect about 1 year ago he started sniffing his hand for 2 months or so and wiping across his nose.  We didn’t think much about it then and it went away.  He did have 2 falls about a week before all of this started as well (one on the driveway and one down a few steps).

I just ordered both books from the website and starting 4 days ago we started changing his diet.  He’s always been a very picky eater but would primarily eat organic.  He loved cheese and yogurt and would have several servings each day.  He also loved bread/sweets and certain fruits and vegetables (primarily apples, carrots, strawberries, bananas, cucumbers.....that’s all but lots and lots of them).  We tried to limit the bread and sweets but in retrospect he had too many.  He would also have 1 serving of meat per day (hamburger, turkey burger, or lamb).  He did also eat oatmeal, buckwheat, rice, sunflower seeds and organic hotdogs 

 He would eat pasta with butter but would never touch any sauce, condiment of any sort.  Very picky with textures.  No green leafy veggies, no smoothies, no veggies other than listed above really.  No chicken or seafood ever, no other fruits other than those listed (he really ate about 10 things and that’s it.

Looking back his magnesium intake seems far too low.  But there are some things that changed prior to the eye blinking that could be correlated. He broke his leg landing on a trampoline (straight down not twisted) and also has terrible cavities.  To me this is a sign of a dietary problem.  We tried to cut out a lot of the phytic acid to improve the mineral absorption for his teeth.  I realize now this also likely cut out much of thof magnesium he was getting (by cutting the oatmeal, buckwheat, seeds). 

On top of that he was getting the wrong doasage of vitamin D over the last few months and definitely getting too much.  I’ve read that can alter magnesium absorption.

Hes had way too much screen time in general but more so over the last several months.  It seems to be a huge trigger and where we first noticed the blinking primary.

He’s always been ultra healthy, he’s never had a medication, never had a fever more than 24 hours and almost never sick.  He did have a 1 day fever about 4-6 weeks back and has been stuffy off and on but so has the whole family.  Not much reason to suspect infection but I guess we cannot rule it out.

Just had a blood panel done for vitamins and minerals but no results yet.  Strep tests all came back negative (just rapid test and the one they send off but not antibodies tested).

Started with some changes in his diet over the last few days.  First cut out all dairy (aside from a little ghee and butter) and gluten and all sweets/bread/pasta/sugary foods.  Just starting yesterday we cut out all foods high in salicylates.  Made bone broth with the marrow and used it as the base for his buckwheat.  Also added back in sunflower seeds, buckwheat, rice, while trying to get healthy fats in the base of those foods.  

We’ve also started a magnesium and b6 supplement, he drinks a few ounces of the Kids Calm but doesn’t like it that much.  Just started epsom salt baths and magnesium cream.

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Starting 2 days ago we’ve been logging everything we possibly can.  Yesterday was first day of very restricted diet.  Things flared a lot 2 days ago when he ate a gluten free cookie.  Yesterday he was off the wall with energy and tics were moderate throughout the day. Behavior was worse than normal.  All personality traits, cognitive abilities and that sort of thing have remained the same.  

 

 

 

Edited February 22, 2018 by bernerchiro

[Bernerchiro]

Don’t want to jinx it but I think we are seeing a pattern with salicylates.

Yesterday he woke up lethargic.  Improved as the day went on in terms of energy.  Seemed to be having an OK morning but we slipped up on food.  My wife gave him a some purple potato chips in coconut oil and things definitely increased in terms of ticks. Behavior was bad, very high energy and a bit out of control.  Also realized pumpkin with millet was high (focused on millet and didn’t think about pumpkin).

Settled down about 3-4 hours lately.  Had an epsom salt bath and applied magnesium cream.  Had a good nights sleep.

Woke up today in a much better mood.  No salicylates all day.  Primarily eating sunflower seeds, buckwheat made in bone broth/marrow (out in vitamix as base),banana, rice cake, hamburger.

Definitey the best day in a week.  Tics present but less. MUCH better mood/calmness overall.  It’s really the first day with no salicylates 

Seems to be adapting to not being allowed to have many foods

Spoke with a nutritionist out of state and gave us some additional guidelines. Flying to see her next week

Edited February 24, 2018 by bernerchiro

[Sheila]

This is so encouraging bernerchiro. I hope you will keep us posted. I know it can be a challenging diet to follow but if that is an important answer, it will be so worth it!

You are paying close attention to symptoms and foods, and that is what it takes. Sounds like you are doing a great job

We would love to hear about the nutritionist after you meet with her. Please let us know how it goes.

[Bernerchiro]

Excited to see the nutritionist, it’s someone who was recommended from this site that had success with their son.

 

Things have been going pretty well overall.  Going in the right direction and not getting worse.  Blinking still present and comes and goes in frequency.  Other tics (arms, hands, nose, verbal,) all present but better than last week.  Especially considering how fast this all came on.

Mood and behavior drastically better than last week.  Going back about 11 days it went from blinking to 15 different tics and behavior, mood were out of control so that part seems like the biggest difference.

Still super picky eating.  Pretty much beef burgers, buckwheat in bone broth, bananas, 1 rice cake max, and sunflower seeds or butter (all organic).  That’s about all he will eat that’s low in salicylates.  Never used to ask for food but he seems to now.  Also noticed craving salt to some degree, which we put in his sunflower butter.

Saturday had a little flare up.  Already had tickets to the monster truck show.  Did great until we got in our seats for a bit.  Light/screens are clearly a trigger and at the huge football stadium that’s all you see.  Left early and seemed to linger into the morning a bit but mood and behavior never changed, just increased blinking and tics overall.

[Sheila]

bernerchiro, this is encouraging! Thanks for the detailed report. I can imagine that a monster truck show would be very stimulating. Please do keep us posted on the nutritionist and anything else that come up.

[Bernerchiro]

Now that we’ve been Salicylate free for just under a week a new pattern seems to be emerging.  Sugar. I suspect an underlying yeast infection and hopefully we’ll find that out soon. Clearly craving sugar.  His 2 worst periods (aside from the monster truck show) were after having 2 bananas with rice cakes.

decided yesterday afternoon to try and totally elimaye sugar as a test.  Since he’s so picky we decided to make a reward chart as well and just not feed him until he tries new foods starting after breakfast today.  Still 100 percent organic on everything.

Eye blinking was pretty substantial but I thought everything else looked improved.

Had one bite of a burger for breakfast and came lunch time he was hungry.  Started with a lamb burger but he wouldn’t touch it.  Within an hour he was “starving” and decided to try cashews and loved them.  5 minutes later he wanted to try shrimp and ate 5.  Before the day was over he’d eaten cashews, shrimp, raw cabbage, green beans, eggs, mango and sea bass (didn’t like the sea bass at all and wasn’t thrilled about green beans).  Wife forgot about the no sugar with the mango and that did seem to flare things up a tiny bit.  

Feels like progress.  I think going to Whole Foods and showing him where the food came from and helping prepare it (or at least watching helped).  Tomorrow he wants to try crab, salmon, scallops, lentils, and brussel spouts.  A little worried about eating too many new foods at once but at least he’s branching out.

[Bernerchiro]

Trip to Boston postponed due to the weather so we’ll be seeing the nutritionist next weekend instead.

He’s trying  all sorts of new foods, pretty much wants to try everything and has been constantly hungry (both very new....used to eat less than 10 foods or so).

Tried lobster, crab, pear, lentils, steak, chicken, asparagus for the first time.  He’s loving the seafood but I’m sure we’ll cut back on that.  Eating lots of raw cabbage. Didn’t have organic brussel sprouts so haven’t tried those yet.

Thursday seemed like his best day but blinking still pronounced, especially when going out in the sunlight.  Today was better yet.  All tics decreased including blinking.  My wife isn’t trying to get her hopes up too much but is seeing a difference for sure (she’s a bit more skeptical on the nutrition side of things but willing to do anything).

[MLee]

Thanks for your update! So happy for you that you are seeing positive results. 

Edited March 11, 2018 by mlee

[Bernerchiro]

Clearly had our best week yet.  We decided to start rotating foods.  Last Monday we started with chicken, cabbage, sunflower seeds, squash.  Had a good day overall. We also finally found goat butter to cook with. Whole Foods finally had it in stock.

Tuesday we tried cashews, carrots, asparagus, chicken.  Not terrible but clearly not as good.  Leg stuff flared up at target, which is scary relative to everything else.  Trips outside the house where there is bright light is definitely a trigger.  Causes his feet to get tangled up and fall when everything is flaring bad.

Decided to go back to Monday only foods. Wednesday -Friday slowly better and better.

Saturday we added eggs for breakfast and also flew to Boston to see Thea.  She’s a nutritionist someone else here has helped.  She put him on a dairy, gluten, soy, salicylate free diet and also very low on sugar.  She refined some of the foods and brands we are using. Also 100 percent organic.  He did well overall Saturday despite getting up at 4am and not getting back until after midnight with both flights the same day.

Today was clearly the best day.  Very few tics at all (down from 15 different ones 2 weeks ago).  No vocal tics today and nothing in his limbs really.  Some sporadic blinking but night and day better than 2 weeks ago.  Decided to reintroduce books (which caused his eyes to go crazy 2 weeks ago).  Almost no blinking which was a huge surprise.  Mood and behavior have been drastically better as well.

Seems like we are on the right track.  Having Whole Foods less than a mile away definitely helps.  Thea also put him on a few supplements as well

 

Edited March 11, 2018 by bernerchiro

[MLee]

Bernerchiro,

What a wonderful update! Thank you for keeping us updated. How encouraging to see such wonderful results.  

We just started a dairy, gluten, egg, citrus elimination based on IgE blood test results.  I’m also watching sugar and sals. If you find any great things at WholeFoods that work, would love to hear. I spend so much time reading labels and going up and down aisles!

By chance, is your son on a probiotic? What kind did you choose?

Hope things continue to go well for your son! 

[Sheila]

Bernerchio, your efforts really are inspiring, and I love that you have a nutritionist guiding your steps. That can make such a difference.

You have the determination it can take to bring about change. For some it is a simple fix, for others it takes a wider approach, as you are doing.

For the light sensitivity, you might want to consider getting him tested by an Irlen specialist. I know you mentioned some improvement in this area but he might respond to Irlen filters (you can also search Latitudes.org for info). When there is a connection to specific light wavelengths, they can address that --  which removes some of the visual stress. His sensitivity sounds quite significant, as you described it affecting his gait. (I'm glad he could manage the books without much blinking!)

We really appreciate you keeping us updated on your approach and the results. It will help many people. Will watch for more news!

 

[Bernerchiro]

It’s been a good week.  Very few tics.  Blinking nearly gone.  Went outside 4 hours today and played a baseball game on top of that.  Tics almost zero and no blinking (even with sunglasses it was nonstop blinking and eye rolling 3-4 weeks ago.

Some days you’ll see a few arm tics and facial things but the average person could be around him and hour or two and they’d never notice anything (as a parent you see it all).  We keep introducing some new foods.

He starting eating bone broth soup with lentil pasta and same with chicken noodle soup.  Lettuce wraps with steak and rice he likes.  He’s been trying several new fish as well.  A few other foods as we go and a few he didn’t like (peppers and radishes).  Seems to be better and better each week

[Sheila]

thanks for the helpful update! Are things still progressing nicely?

[Bernerchiro]

Things are still going well.  All tics are minimal or gone. Average person wouldn’t notice a thing.  

 

Only “problem” is he’s become a bit obsessive with food.  He asks for food all day, every day.  We are trying to cut back on the amounts he’s getting.  Almost like it’s an obsessive thought unless we keep him occupied.  It’s hard than it used to be because we give he zero electronics (tv phone iPad etc).  He wants attention 24/7 and it requires some parenting changes but all worth it!  We have every board game in existence lol

[PinkMom]

Hi Bernerchiro,

Which nutritionist did you see in Boston? Did you bring your son or did you go on your own? Did the nutritionist do any testing? Or did you bring your own-what did you have tested? Can you let me know what supplements were prescribed by Thea? I am experiencing similar symptoms with my 5 year old. Thanks!