4yo boy with complex non stop tics

[tiaratoledo]

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

 

[Sheila]

Hi Tiara, This must be such a distressing experience. I'm so sorry you are dealing with this in your son!

Has a physician seen him in this condition?  If not, you could take him to an ER and presumably get a consultation with a neurologist and a referral to a movement disorder specialist. 

This is not to say that integrative approaches cannot help him--it's very likely they can--but since it sounds like he is in crisis, he should have a formal evaluation (you may already be doing that!?.)  Do you have health insurance to cover this type of care?  

I have heard of some doctors giving an IV of magnesium in the ER, as is sometimes used to treat a seizure, and it temporarily helps calm severe tics like this, but I am not a doctor and I don't know what is feasible where you are.

As far as encouragement, please know that parents of children with severe tics have often found major help with integrative approaches. But, it can require advice from a professional to determine what imbalances the child is dealing with. It is not always possible for a parent to figure out environmental and diet issues, supplement needs, etc. on their own.  So I would suggest you will need that type of assistance. Do you have practitioners helping you?

We can set up a time to talk if you like, Tiara, and see what your options are. (Do you live in Toledo, Ohio?)

Please let us know more about these issues. Meanwhile, don't despair. We will watch for your response. Sheila 
 

. 

 

 

[Swetha]

Hi Tiara, 

I had somewhat similar experience, just that it all started when he was around 10 years old. 

You need to understand that there is a lot going on under the hood for our kids with Tics. 
The chlorine in the pools is one of the biggest factors for us, it takes weeks/months to bring him back to normal after he is exposed to Chlorine in the pools. 
Looks like Chlorine deplets the Glutathione in the body, which is most important thing for detoxing. 

At the same time, if he is also affected with some bug(infection) then this burdens the body even more. 
Its not just one thing which brings our children to this tipping point , its always a host of issues. All in all, the immune system is dysregulated and is finding it hard to regulate itself. 

My recommendations would be: 
1) Start with Magnesium Glycinate + Epsom salt baths (atleast foot bath) 
2) Add B6 and Zinc 
3) If possible add L-Glutathione, which will help him get rid of the toxins built in his body. 
4) Try the Gluten and Dairy free diet, which can help in reducing the overall inflammation (My son is not sensitive to Gluten/Dairy on tests, but he reacts to it when he gets it) 
5) Try finding some functional medicine/environmental medicine doctor instead of running to the neurologists (you wil save yourself a lot of disappointment and heartaches) 
6) try not to forget to breathe! Take care of yourself and remember he needs a very strong and a regulated mother - who wont give up and will keep going. 

Take care. 
Swetha

[tiaratoledo]

Thank you so much for replying Sheila and Swetha! I’m feeling so overwhelmed those days that just by the fact that someone has replied makes me feel less lonely in this path. I am not normally an emotional person, but this tic issue has got me like nothing before. Specially during the evenings when the tics get worse, I find myself avoiding to look at him and wanting him to desperately go to bed so it will finally stop. I feel guilty and hopeless all together. 
 

Sheila, we do have insurance. I took him to the neurologist and the result was the same other moms have anticipated. The doctor basically said it was a tic disorder and that there was not much to do other than medication. I was left with nothing. I would love to hear your suggestions for professionals that use an integrative approach. By the way I bought your book, it arrives today. We need help and a starting point. I live in Miami, Florida, but we could go anywhere really. 
 

I truly appreciate your offering to connect with us. What is the best way for you? Over the phone?
 

Swetha, the relations you made between chlorine and glutathione is very interesting. All the recommendations are very useful. I will start them today. One thing that I would like to understand more is about the frequency of the tics and if they change. My main concern is the current severity of my son’s tics, specially because it’s very noticeable and he is already self aware at age 4yo. Yesterday I took him to a playground and he said he did not want to go because other kids would “see him”. It destroyed me from the inside to see him ashamed of himself at 4yo. 

How it was for your son? Is he doing better with the tics now? 

Again, thank you both!!

[Swetha]

Its very natural to feel overwhelmed when there is such little information available to us, mothers! I can feel you. I have been going through this since an year now and yes things do get better and there IS hope! 

Like how every DIS-ease has a root cause, tics too have some reason why they are happening. Every child is different and the reasons why it's happening will be different. But whatever the cause may be, it's just that their brains are inflamed and that needs to be taken care of. I suggest you to add certain healthy fats to his diet, like coconut, flax and fish oils. Magnesium glycinate helps as well. 

I would totally recommend reading Sheila's book and follow the gluten and dairy free diet for a minimum of 4 weeks to see the difference.  We saw a huge difference there, although we have more work to put in. 

I understand your child is too young and might be difficult to handle this, but you have to see how to build his confidence now. 

Also, have you looked into Pans/Pandas? If the tics onset has been very sudden/abrupt,then I would recommend you to look into it. Look into it,  even if it's not very sudden. 

Try dosing Ibuprofen and see if the tics reduce and thats one way to say its the brain inflammation - pans/pandas (may be). 

You aren't alone and you will keep digging and finding more.  More power to you. 

Take care, 

Swetha

 

[Sheila]

Hi Tiara, Let's plan to talk on the phone. I'll drop a message to you.   

. 

 

 

[Atex]

We received the same response from the neurologist and felt abandoned as well at the onset of all of this.  Fast forward 3 years and we completely turned things around without medication.  There is hope.

[Swetha]

Love you saying this @Atex Thanks for spreading Hope. 

[Atex]

When I see the word Miami, I would make sure there is awareness of interior pest control applications. I have done a lot of building inspections and vacationed in Florida and am continually shocked at the level of interior pesticide applications and lack of any concern about staying out of spaces, cross contamination, etc.  Pesticides do not always play well with neurological susceptible individuals and it can be hard to be concerned as there is definitely a culture that spraying is ok.

Edited November 21 by Atex

[Chemar]

@tiaratoledo you have some very helpful info being shared with you!

My own son had a similar journey to yours-starting some tics around 4yo

I can't post much now due to some work constraints, but just wanted to encourage you that you have much reason to be hopeful!

My son is now in his mid 30s and living a full life. When I think back to the desperation I felt back when all this started, I can only be thankful that the natural pathway to helping him was fruitful!

Here's just one of many threads here where good reports are shared

 

[Swetha]

@Chemar your posts are always helpful and makes parents like me feel hopeful even in hopeless situations. 🙏 

Have learnt so much just through this forum and your posts. 

[klypciwhdhdo]

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.

Edited November 22 by klypciwhdhdo

[tiaratoledo]

Swetha, Sheila and Atex, thank you for your tips and encouragement. I’ve been devouring this forum, taking notes of everything and I have already started applying some things I’ve learned here:

* Started with magnesium and Epson baths (I’m adding just a cup of the salt since he is little)

* Had two sections of NAET: one for chlorine and other for neurotransmitters. Also had him NAET tested for food allergies and he reacted to many things, so I’ll continue this path for many other months until we treat it all.

* Have started him on a diary free, gluten free, no sugar diet. It’s been only 3 days, but I want to follow it for a month to help his body to detox

* Have changed his drinking water to bottled water instead of giving him the water from my Brita filter (we are considering a whole house filtering system to eliminate chlorine even from bath)

I am not sure what exactly is working or if it is the combination of all of that, but it’s been 3 days that his tics have significantly reduced. I can’t express how happy I am. He is not free from tics. He is still doing the same one (rolling eyes and head to the left) but much less frequent. Today was the best day. One tic in every 3 minutes, on average.

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. 

_______

Atex, to your comment about pesticides, very good point. We normally spray with a company that claims they use natural ingredients, but I never checked. Will do. Great call out. 
 

[tiaratoledo]

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. 

[klypciwhdhdo]

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.