4yo boy with complex non stop tics

[Atex]

You can remove one thing at a time and see if it has any affect, but unfortunately it often takes on the order of weeks to months for the system to calm down from any one offender, and sometimes there are multiple offenders so you could still be doing good, but just not enough.

What we did is more of a shotgun approach, eliminated a lot, and then reintroduced things.  It helped to worth with a naturopath who knew a lot about options.  Yes, this can be more traumatic, but the tics were bad enough for us that it was worth it.

We are to the point with my 11 yr old who is now normally tic free, and that we can give her dairy or anything with MSG (and all of the various sneaky names with glutamate) for one day, and she will flare for about a week or two.  

We have an artesian RO system from the Perfect Water and really like it. 

We are completely scent free, no dryer sheets, no perfumes, no incense, no bleach, and certainly no febreeze.

 

 

Edited November 23 by Atex

[tiaratoledo]

Thank you @Atex for the suggestion. I like the approach to start with a very restrictive diet for a month or more, observe how he reacts and then reintroduce things little by little. I’ll follow this path, since it seems it’s the only way to really observed the causality of each potential trigger.

We have started yesterday with a diet free of gluten, diary and sugar. I’ll wait a few weeks to see how he reacts. What puzzles me is that even before we used to eat pretty well in our house. Like we buy everything organic since ever, we prep our own food, we are vegetarians so everything that the boys eat at school are the foods we prepared at home. Thus, it should be something very specific that might be worsening his symptoms. 

I’ve changed their toothpaste for “Tom’s”, bath soap to “Dr Brownner’s”, house cleaning products to “Attitude”, dishwasher pods to “Molly’s Suds” and laundry detergent to “TrulyFree”. I can’t think of any other chemical that he might be in contacts with. Even the stuffed toys in his bed, I’m trying to remove them one by one without him noticing. 
 

[Atex]

It sounds like you're already in a good mindset; it is a rabbit hole mind you .  My wife is a dietician and we were organic as well back when my daughter started ticcing.   You may be surprised by how many foods labeled organic contain MSG or glutamates (like yeast extract or "natural flavors").  Our naturopath did really help us figure out what to eliminate.

Any correlation to red tide?

[tiaratoledo]

@Atex I was not considering restringing MSG and Natural Flavors, but I think you are right. If we want to test what is triggering him, I should also include those two in the list. Anything else you would recommend to also avoid in his diet for this period of intense restrictions?

To recap: gluten free, diary free, sugar free, MSG and natural flavors.

Natural Flavors is hard. Basically anything we buy at a supermarket has natural flavors. 🤯

[Swetha]

@tiaratoledo I have stopped buying any packaged food with more than 3-4 ingredients in it. Also, has to be easy to understand and easy to read  ingredients in it. We are also vegetarians, seems like vegetarians have problems with getting enough vit B12. May be you can try adding that. 

I have also read many studies about  'Keto diets help kids with tics'. I am still finding it very hard to bring meat into his diet due to my own (moral) reasons. I have started adding eggs, initially he had issues with eggs as well, but slowly he is able to take it. 

In my opinion, any artificial colours are bad. I was giving my son certain fish oil capsules which were made of gelatin and has some yellow in it, which  increased his vocal tics. As we removed it, the vocal tics kind of calmed down. Colours are the worst enemies for our children. You got to get rid of any/all products with colours in it - handwash, soap, dishwashing tabs, clothes washing liquid, perfumes, air fresheners at home/car and last bit not the least food colours! 

You got to become a detective now! 🙃

Good luck with that! 

Swetha 

Edited November 24 by Swetha

[tiaratoledo]

Hi @Swetha thank you for adding your recommendations. ☺️

The four of us are vegetarian so we all take B12 vitamins on a weekly basis. Also when I took him to the neurologist they tested to B12 and the levels seemed normal. 
I’m with you when it comes to adding meat. I’ll eventually do it if I have to, of course, but I want to try all the others before. 
Let me ask you. Since you have changed his diet, you have noticed a moderate reduction in tics, drastic reduction or even has completely had periods with no tics? I’m trying to adjust expectations. Yesterday he was super fine, one tic every 4 minutes more or less. I feel I did everything right yesterday in terms of diet, but today he is much worse. I’m frustrated since if anything I would expect him to not get worse. 

[Swetha]

I have seen reduction of tics,  then a huge flare with a Strep infection. They again went away completely for sometime and kept coming back but at a much lesser intensity (due to diet changes/herbs/supplements). 

In my Son's case, I believe there is an underlying chronic infection which is the cause of his Tics. His ASO titers were moderately high when we got it check last 3 times, but I don't want to take the Antibiotic route, if I can manage with herbs and nutraceuticals. 

But this will be a long haul and we need to have no expectations, the healing will happen - but won't be linear. It's going to take sometime to get rid of them all. Atleast that's what i feel , based on my experience till now. 

But every kid is different and you are your child's best advocate. So keep going.  

[tiaratoledo]

Thank you @Swetha. I needed to hear that. It’s not linear. 
Because my son previous tic came and then completely vanished, deep inside I was in the hope it would also happen this time. But being realistic this time feels very different. He is now having many sorts of motor tics, so it might take longer to have this body detoxified. 

[tiaratoledo]

Hello, 

A little update/request for sharing experiences. 

Today it’s been 20 days since the flare up began and around 10 days since we have diligently:

* followed a new diet free from gluten/sugar/diary/eggs/corn/MSG and food dye. Very clean diet, everything organic, home made, lots of fruits and veggies. We are being very strict following the diet. 

* changed house chemicals from toothpaste to all cleaning products, including his body soap

* Changed all bedding items from cotton organic GOTS certified: pillow, sheets, blanked, mattress cover

* absolutely no screen time and lots of time outside

* epsom baths every night + Omega3 + B12 

* NAET 2x week

* He is in a great mood, playing and not stressed at all

I feel we are doing everything correctly, but unfortunately we had 3 better days (that’s when I wrote) and then it got worse again. Maybe not to the severity of the first 5 peak days after he went swimming in the chlorine pool, but we are definitely not seeing ANY improvements with all those changes.

The intensity can vary without any reason throughout the day. Afternoons overall are a little better than Mornings and Evenings. I’m keeping a journal and trying to make connections but I don’t see anything. No logic for the daily fluctuations.

It is hard to be hopeful and positive when there is no sign of improvements. 

When you have gone through the same changes, how long it took for you to notice improvements? Sometimes I read in some posts of the forum that I should have noticed changes “immediately” or “within days” after changing diets. 

I know the forum is also about proving support and hope, but I want to be realistic. Am I expecting results to soon?

Thank you!

[Swetha]

Hi Tiara,

Those little bodies need time to recover from whatever they are struggling. Healing is not linear and it 2 steps forward and 1 step back. Sometimes more steps back (imho). This is going to be a long haul process for many, but I do hope that you see quick results. But unfortunately there are way too many causes which might be causing our children to flare up. 

For us it's infections - if he gets a slight cold/cough/swollen adenoids/swollen tonsills then his Tics increase. Even after doing everything what you are doing, we are also seeing setbacks and very rarely 100% free from tics. 

It's hard but just keep at it, I am sure you will figure out more things and become better at helping him. May be get his blood work done and work with a functional medicine doctor. 

Read this book "A light in the dark - Jill Crista" on Pans/Pandas. Whether he really is P/P or not, you can help him with the recommendations in that book. 

 

Take care,

Swetha

[tiaratoledo]

Hi @Swetha,

Thank you for your response and for sharing your experience/perspective.

We are putting so much efforts and not even seeing the slightest sign of progress is discouraging. If anything today was one of the worse days. My head is spinning. He is not sick or has been sick for a long time, so in his case I don’t see a relation. 

Today we had a first appointment with naturopath doctor to start the testing, so let’s see how it goes.  

I am finishing Sheila’s book and the next will be the one you recommended.

Thank you,

Tiara

[Swetha]

That's exactly how we got into this.  No signs of sickness 1 year before the big onset. But that's what is happening, the dysregulated immune system- instead of sickness is showing signs of tics/ocds/behaviours. 

I am sure you will figure things out. Just hold on to the faith in the bodies - which can heal themselves and keep doing what you can. 

 

[klypciwhdhdo]

On 11/23/2024 at 8:24 AM, klypciwhdhdo said:

Hi, yes, please keep me posted as well. As of now, we’re trying a few things to help, especially with the winter weather. He’s been taking vitamin D, and I’ve noticed some improvement when he does. We also give him an Epsom salt bath twice a week not sure if it’s truly helping, but he enjoys staying in the water, so I’ll take that as a positive.

Yesterday, he played in the snow for a couple of hours, and later that evening, his tics intensified. I wonder if the cold weather is a trigger. There are times when his tics seem to ease for a day or so, giving me hope they’ll stop entirely, but they always come back with varying intensity and sometimes new patterns. Most of the time, his tics seem to intensify when he has a cold or fever. He also tested positive for scarlet fever (strep), which I mentioned to the doctor. I asked about PANDAS, but they brushed me off, saying it’s not approved in the literature. He was on penicillin for 7 days, but unfortunately, there was no significant improvement in the tics. It’s all so unpredictable, but I’m doing my best to track and understand what might be influencing this.

Diet-wise, he’s on a keto diet—no dairy, sugar, or gluten—but I let him have corn because he loves it. We recently had a neurology appointment they diagnosed his condition as motor tics and asked us to return for follow-ups when he shows vocal tics. No blood tests or additional evaluations were done.

Other than the tics, there are no neurological or psychological concerns. He’s his usual self, and the tics don’t seem to bother him much, although he’s aware of them now. Sometimes, when they happen, he glances at me to see if I’ve noticed. I try my best to ignore them.

I know it’s tough, especially since he’s so young. My mother is a doctor. She has worked with children in a children’s hospital and has seen many cases of tics in children. She just advised me to ignore it. However, the issue is that she has never seen children with eye rolling tics. She was already concerned, which is why we had to do all those MRIs and EEGs.

Hi, I think I’m in the same boat as you. My son is about four years old. He had his first tic when he was about 1.5 years old. It started with a movement in his shoulder. I’m not sure if it was a tic, as it only lasted a week or two. The second tic started about nine months later—an eye-blinking tic, just after he started kindergarten in early spring. This also lasted about two weeks. Then we went to Sri Lanka, and it completely disappeared. The new tic, eye-rolling, started about nine months later during winter in Germany. He has been experiencing this tic for about three weeks now. It comes and goes—some days I rarely see it, and on others, it happens every minute or so. It’s very hard to watch. He’ll just do something, and both of his eyes will shift toward the left. Two weeks into this, he went to kindergarten and came home with a strep infection. He tested positive for strep and was on penicillin for about seven days, but there were no changes in his tics. We completely weaned him off because he didn’t show any other signs of strep. He still has his tics, and since it’s winter, I think the cold has accelerated them. Other than that, he has been sugar-free throughout his life, and this week we cut out all gluten and dairy to see if it makes any changes. So far, I don’t see any changes. If you happen to know any remedies, even just to minimize them, please let me know.

 

On 11/23/2024 at 4:12 AM, tiaratoledo said:

Hi @klypciwhdhdo thank you for sharing your history with your son. 
Indeed very similar experiences, since my sons tic is also rolling both of his eyes to the left but he also moves his head and shoulders in a combined movement. Some days he also bends his head to the back, and I have also seen him rotating his head 360 in a really bad day. 
I am starting this path, so I have no credibility to send recommendations, but I have changed his diet, have started epsom baths and have changed his water. Oh and I forgot to say, no screen time. Like really zero, since I noticed screen would make it worse. 
I am not sure what is affecting him, but what I can say is that the tics have reduced in frequency. 
Tell me more about what you are trying. Let’s keep sharing our experiences and learning together. 
One thing I got from this community is that there is hope and there is support from each other. 

 

On 11/23/2024 at 8:24 AM, klypciwhdhdo said:

Hi, yes, please keep me posted as well. As of now, we’re trying a few things to help, especially with the winter weather. He’s been taking vitamin D, and I’ve noticed some improvement when he does. We also give him an Epsom salt bath twice a week not sure if it’s truly helping, but he enjoys staying in the water, so I’ll take that as a positive.

Yesterday, he played in the snow for a couple of hours, and later that evening, his tics intensified. I wonder if the cold weather is a trigger. There are times when his tics seem to ease for a day or so, giving me hope they’ll stop entirely, but they always come back with varying intensity and sometimes new patterns. Most of the time, his tics seem to intensify when he has a cold or fever. He also tested positive for scarlet fever (strep), which I mentioned to the doctor. I asked about PANDAS, but they brushed me off, saying it’s not approved in the literature. He was on penicillin for 7 days, but unfortunately, there was no significant improvement in the tics. It’s all so unpredictable, but I’m doing my best to track and understand what might be influencing this.

Diet-wise, he’s on a keto diet—no dairy, sugar, or gluten—but I let him have corn because he loves it. We recently had a neurology appointment they diagnosed his condition as motor tics and asked us to return for follow-ups when he shows vocal tics. No blood tests or additional evaluations were done.

Other than the tics, there are no neurological or psychological concerns. He’s his usual self, and the tics don’t seem to bother him much, although he’s aware of them now. Sometimes, when they happen, he glances at me to see if I’ve noticed. I try my best to ignore them.

I know it’s tough, especially since he’s so young. My mother is a doctor. She has worked with children in a children’s hospital and has seen many cases of tics in children. She just advised me to ignore it. However, the issue is that she has never seen children with eye rolling tics. She was already concerned, which is why we had to do all those MRIs and EEGs.

Hi, I think I’m in the same boat as you. My son is about four years old. He had his first tic when he was about 1.5 years old. It started with a movement in his shoulder. I’m not sure if it was a tic, as it only lasted a week or two. The second tic started about nine months later—an eye-blinking tic, just after he started kindergarten in early spring. This also lasted about two weeks. Then we went to Sri Lanka, and it completely disappeared. The new tic, eye-rolling, started about nine months later during winter in Germany. He has been experiencing this tic for about three weeks now. It comes and goes—some days I rarely see it, and on others, it happens every minute or so. It’s very hard to watch. He’ll just do something, and both of his eyes will shift toward the left. Two weeks into this, he went to kindergarten and came home with a strep infection. He tested positive for strep and was on penicillin for about seven days, but there were no changes in his tics. We completely weaned him off because he didn’t show any other signs of strep. He still has his tics, and since it’s winter, I think the cold has accelerated them. Other than that, he has been sugar-free throughout his life, and this week we cut out all gluten and dairy to see if it makes any changes. So far, I don’t see any changes. If you happen to know any remedies, even just to minimize them, please let me know.

 

On 11/18/2024 at 3:06 AM, tiaratoledo said:

Has anyone had a son that started very early with complex non stop severe tics? I’m very worried about how early he is presenting symptoms and that those symptoms are so severe at his age.

I guess I’m looking for someone else who had a similar experience that I can relate. I’m looking for reassurance and so hope.

My son is 4yo and has started ticking when he was 3yo. It started very mild with blinking that turned into excessive blinking for a few weeks. Then it disappeared. At the time the pediatrician said it was a natural development tic that would most likely go away as he grows.

About 6 months later, we went on a family trip where he spent most days in the pool. The day we returned the blinking returned, more severe. Now I know it was most likely triggered by chlorine. This time the blinking took about a month to go away, and disappeared completely.

After three months, a new tic appeared. This time much more severe. He started eye rolling to the left side in a movement with eyes, shoulders and head all together. It took a few days then got better.
 

Out of the blue, this week he is in a major tic crisis. The eye rolling with shoulders intensified to a NON STOP tic, that led to other weird movements with his head and shoulders. Sometimes he rotates his head 360.
 it’s very scary to watch. He really does not stop. It’s not that he does that every few seconds. He is actually doing the movement repeatedly. 
 

I would greatly appreciate the sharing of relatable experiences. I’m so worried. 
 

Thank you,

Tiara

 

 

Edited December 7 by klypciwhdhdo

[klypciwhdhdo]

@tiaratoledo. I was worried because Seth’s tics looked more like seizures, with eye rolling and head nodding. They did a second video EEG, and they were able to see the movements clearly, diagnosing it as a tic disorder, which really relieved a lot of stress for me, as I had been worried off and on. They also noticed that he’s a little bit vitamin D deficient, as it’s winter in Germany, so they increased his vitamin D dosage. Since then, the tics have improved by about 70%.

Other than that, he’s just happy. I massage him at night, though I’m not sure if it helps. We also decided to try going dairy-free and gluten-free, just to see if it makes a difference.

I’m not sure whether it’s worth digging deeper into functional or integrative medicine, or if it’s better to just wait and see, since I know that tics are often a symptom of something else.

[Chemar]

On 11/22/2024 at 10:02 PM, tiaratoledo said:

Chemar, thank you so much for sharing your son history. it’s reassuring to know that there is hope. I read the thread you shared and there is so much valuable information. 
At this point I feel I need help to define a protocol. Of course I’m beyond happy for having the his tics reduced, but I feel I need to be more precise in identifying the cause and effect of each treatment, so I can have a clearer view of what works.
Also, I have not done any tests on him. The thread mention several tests, from allergy, virus to genetics, that could be done to define a protocol. 
Is there a thread that summarizes a path in terms of testing? If not, I would greatly appreciate any tips from this group. 

 

Hi again @tiaratoledo

There are a number of older threads here on testing but perhaps you will find some helpful info on this  thread?