My son doesn’t fit into any tic disorder categories - help!

[AlwaysWorriedMom]

Hi everyone, I could really use some help figuring things out. 

In April 2018 when my son was 4 years and 3 months old, he had a few days where he was blinking excessively while watching tv or tablet. It went away quickly. A few months later he had a few days of a habit cough which also went away quickly. We took him to his pediatrician who told us that tics are very common in kids and he expects them to be gone completely by the end of that summer. 

He continued to have the blinking or coughing tic on and off, with several weeks or several months in between and only about 3 days per each episode. They never occurred at the same time. We didn’t worry too much, as we expected them to go away for good, as per our pediatrician’s comments. 

On July 11 of this year (our son had just turned 5.5 years old), he started a coughing tic again, however this time it morphed into a throat clearing tic that was quite frequent throughout the day and has now lasted almost a month. In the beginning of this episode I took him once again to our pediatrician, and since our regular doctor was away, another pediatrician in the clinic checked him out to make sure there wasn’t a physical cause of the cough. He determined that this was a habit cough, and to just ignore it (which we had been doing all along) and it would go away. This is the longest any of his tics ever lasted, and since that cough tic turned into a throat clearing tic, we started getting very worried. I called my son’s pediatrician again this past Friday and went over his tic history once again, reminding him that it has now been well over a year and these tics are still coming and going, with this being the worst episode by far. He responded by saying that he thinks this could now be considered Tourette’s. 

We have been obsessively reading about tics and Tourette’s in kids, and we’re not really sure where our son fits in. According to the information available online, in order for a diagnosis of Tourette’s, there must be at least two motor tics and one vocal tic present. My son has only had one motor tic (the blinking tic) for 3 days or so at a time, but no other motor tics at this time. Transient tics are supposed to have cleared up within a year, so I don’t think that fits in this case either, however my son has gone months at a time without any tics. Does that still count as a year if the tics stop completely for months at a time? And the third option, chronic tic disorder, is based on tics lasting longer than a year but is ONLY motor tics or ONLY verbal tics, not both, which also doesn’t seem to fit our situation. After reading his history, where does our son fit??

It’s really hard to just wait and see and not have any answers. I guess we’re just wondering if our pediatrician jumped the gun, especially since he basically diagnosed him over the phone. 

Also, I’ve been trying to figure out how to go about treating his tic, and I’m thinking the best start would be magnesium and B6 supplements (including the magnesium cream), Epsom salts in the bath, NAET testing to see if he has any food sensitivities, and CBT. 

What do you guys think?
 

[Chemar]

Hi

So sorry  you are dealing with all this concern and uncertainty!

I have always felt the so called criteria given may be far too rigid, especially as it seems there are many possible reasons for tics apart from TS, or transient & chronic tics.

Here's an informative article on our website that helps to  give a better overview:  What Is Tourette Syndrome

Many parents here have found that often some form of allergic reaction is causing their child to tic...either food or environmental, so it certainly is worth exploring  if there are any allergies or sensitivities.

There are also numerous known "triggers" for tics that parents have been noting for years.

Our admin, Sheila Rogers, has written a very informative book on this  https://latitudes.org/store/tourette-syndrome-triggers-book/

and also a more general one on Tics & Tourette https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/

I am doing a quick reply to you from work so hope you will get more responses soon.

[msimon3]

Our pediatrician told us something similar-- don't worry about the tics, they will go away.  That was bad advice for us.  The tics didn't go away, and many years later, and more symptoms later like fevers, rashes, numbness, joint pain, chronically elevated white blood cells, we learned it was Lyme disease.  The tics were a symptom of the infection, and they resolved when the infection was treated.   

However, since tics could be caused by many things, it is prudent to consider possible causes and then rule them in or out.  For that reason, perhaps consider adding immunology / neurological infection to the list of potential causes.

Good luck and stay vigilant.

[AlwaysWorriedMom]

Thank you guys. This has been very distressing, and yesterday was the first day I didn’t bawl my eyes out. 

I will certainly explore every possibility to try to find some answers. Right now his tic is mild but of course that could change. 

One thing I realized is that he started camp this summer and has been swimming every day. The onset of this tic episode coincides with the start of camp. We’re on vacation right now and when my husband took the kids swimming on Tuesday his coughing tic was absolutely terrible while in the pool, and then after. I told my husband no more swimming, and let’s see if the tic is better. Yesterday we didn’t swim and his tic was much less frequent than the previous day. Gonna have him tested for a chlorine sensitivity. 

[Chemar]

Yes, chlorine was a major tic trigger for my son! Even though it didn't show in his list of actual allergies, more detailed testing showed he  was very very sensitive to it, as to many other chemicals. Later testing confirmed he has MCS (Multiple Chemical Sensitivity) which is why both environmental and food additive chemicals impact him so intensely, including  chemical perfumed/fragranced items etc

I found some excellent online resources over the years to make my own household products, and always select fragrance free/dye free options for laundry, toiletries etc and of course no artificial food dyes or other  artificial food additives.

 

[AlwaysWorriedMom]

2 minutes ago, Chemar said:

Yes, chlorine was a major tic trigger for my son! Even though it didn't show in his list of actual allergies, more detailed testing showed he  was very very sensitive to it, as to many other chemicals. Later testing confirmed he has MCS (Multiple Chemical Sensitivity) which is why both environmental and food additive chemicals impact him so intensely, including  chemical perfumed/fragranced items etc

I found some excellent online resources over the years to make my own household products, and always select fragrance free/dye free options for laundry, toiletries etc and of course no artificial food dyes or other  artificial food additives.

 

I always try to avoid artificial colors, scents, fragrances, etc. I was just saying to my husband that I don’t understand how food dyes haven’t been outlawed since they serve no purpose other than aesthetics and many people seem to have a sensitivity to them. 

We just got back home from vacation and I feel a bit better now that I can start my action plan. This afternoon we’re going to buy the magnesium and B6 supplements and Epsom salts, and his NAET test and CBT appointments are both within two weeks. Trying to get an appointment with a functional neurologist too but the waiting list is already at January and it’s a private clinic! (I live in Canada so it’s hard to get a fast appointment with a doctor under Medicare). 

[Chemar]

We found the best B6 to use was the activated P-5-P form.

European Union countries outlawed the food dyes and other dangerous additives a while back! Shocks me that this country hasn't especially as natural food dyes do the job well without the danger! (eg beets, blueberries etc.) M&Ms in England have these natural colourings so there is no real reason imo that they can;t use them here too!

 

[Cristo-Krista]

Is that the same as the methyl type ?

[Chemar]

12 hours ago, Cristo-Krista said:

Is that the same as the methyl type ?

Hi

I think perhaps you are referring to B12 not B6? For B12 the methyl form is better than the cyano form

[Cristo-Krista]

Thanks