Where to begin? 7 year old son and tics

[Robin_RN]

Hi everyone,

 

I am really hoping to get some advice as I am concerned and confused. My 7 year old son, for the last year, has been experiencing some tics on and off. I first noticed an eye "stretching" as he would call it. This was last year. I took him to our pediatrician and she felt it was due to allergies. She confirmed that he had allergic rhinitis which she said was a finding that he always shows clinically. At this time, he was also experiencing very loud and obstructive snoring which ultimately lead to a tonsillectomy last summer. Clearly, he has seasonal allergies and always has. He also had a dairy allergy as an infant and I nursed him exclusively for over one year (with dairy removed from my diet).

 

At the time he was being evaluated for his tonsillectomy (last summer) I also mentioned to the ENT the eye rolling/stretching behavior and while he agreed that it may possibly have been related to allergies, he felt it was a "tic" but that it was normal at this age and would disappear. Coincidentally, it completely disappeared after that. Around the time school started up, it reappeared briefly. Next, he had a neck stretching type behavior that initially began from his back pack hurting him. It took on a life of it's own and became a tic. That disappeared and was replaced by a throat clearing sound that lasted a little less than a week. That was about 2 months ago. He has been tic free until now.

 

Two weeks ago, he noticed a molar growing in and it was covered in part by his gum. This started irritating him and he started opening his mouth really wide. Just like the past, this behavior took on a life of it's own and became a tic lasting a week. It disappeared completely and was replaced a day later with our current issue. The throat clearing noise which sounds almost like he's losing his breath or making a high pitch inhale.

 

He had a well check with our pediatrician a few weeks ago and although he wasn't doing any of these things at the time, I did mention my prior concerns to her. We have been seeing her for 10 years and she has known my son since birth. She is also very young and up on current research. She is brilliant. Anyway, she said that she still feels that my sons behaviors are triggered by allergies. Like, allergies are irritating his eyes and causing the need to roll/stretch them. She feels that they then take on an addictive type quality for him and he has to, in her words, "work them out" by working through these tics. She said that unless he personally is bothered or having issues at school with people pointing them out, his teacher, etc, that i do not need to do much about them except to ignore them and not draw attention to them. She is also big on a healthy diet, limited screen time, etc.

 

So, now I am seeing this everyday and totally freaking out. I am so worried about him. I really felt these were benign childhood tics as he only has one at a time and long periods with nothing. I also notice that his behavior is more "hyper" when the tics are present. He does not have ADHD by any means or OCD. He is super smart, sensitive, loving and just a great happy boy. He is so happy and care free. He doesn't exhibit nervous or anxious behaviors. He doesn't have trouble learning. All of these things make me think that something is causing this. He doesn't seem to fit the stereotypical Tourette's diagnosis so I'm not sure where to go with this. We did let him have a lot of time on the iPad this past 2 weeks and my husband feels that they are correlated. As if this wasn't stressful enough, he is the pickiest eater I have ever met and eats very few foods. Our pediatrician has, at this point, recommended "feeding therapy" as his pickiness is beyond normal.

 

I would love any advice. I am so worried. I am worried that this will be too much for him and his fun loving spirit will be broken down if anyone makes fun of him or if he is embarrassed. I have read the statistics on depression and TD and it scares me. He is the happiest most fun loving kid in the world and I never want that to change. I just don't know where to begin. I am not sure if I should just take him to a neuro or ride this out. I'm also an RN so I have a hard time balancing the medical and natural aspects of care. I would just love a starting point….testing, supplements, etc.

 

Sorry this is so long. Thanks for reading if you got this far!

[Chemar]

Welcome Robin

 

First I want to encourage you.....don't panic!!

Easier said than done I know but honestly, having you as calm as possible and not adding any stress to the situation is a primary step in helping your son. I learned that the hard way...........

 

Allergies (both food and environmental) can be huge tic triggers and so I would definitely encourage you to investigate more there.

It's great that you have a pediatrician who appears to be knowledgable about tics and allergies and diet.

 

IMHO there is no "stereotypical" Tourette profile...it is known as a syndrome as there are many conditions that may be co-morbid and tics that can be complex....but many people with TS have only simple tics.

Unfortunately too, many people are diagnosed with TS when in fact their tics are being caused by other factors. Conventional doctors, and especially neurologists, are often clueless (sorry to say) about tic disorders and just stick a TS label on everyone who tics.

And for those who do have genetic TS, sadly they are frequently offered no alternative treatments or educated about tic triggers, instead only being steered toward prescription meds that frequently do more harm than good (learned that the hard way with my son too!)

 

Our admin, Sheila Rogers, has written a very helpful book Natural Treatments for Tics and Tourette's - A Patient and Family Guide

and you can also find a wealth of information in our Useful Threads section, pinned to the top of this forum.

 

Keep asking questions here too....we have a wide cross section of people who have experience in so many different areas related to tics, many who have seen tremendous success when they have been able to pinpoint the things triggering tics and to work to eliminate them.

[Chemar]

ps I meant to also include the very helpful informal survey done by ACN some years ago

Finding Triggers For Tics

[Robin_RN]

Thank you for your post. I truly believe my son is being triggered by something. I know there is no stereotypical TS patient but he just doesn't seem to fit the behavior description from what I've read. Maybe he has a mild form, I don't know. I'm worried about having him "diagnosed" as I don't want this to unnecessarily put him in any category. I find it very interesting that people are misdiagnosed as having TS when it could be a result of aomething else. Thanks again for the info.

[sbk]

I'm looking for an environmental pediatrician in NYC-any suggestions?

[Robin_RN]

Well, just as quickly as it came on, it left. Just about 4 days and that's usual for him. He probably won't have anything for months. Now that I'm not consumed with stressing about the sound he was making, I can try to think clearly and dig into this a little more. His tics seem to coincide with cycles of being very hyper/having tons of energy. Not in an ADHD kind of way though. Just tons of physical energy. We removed the iPad forever as my husband really feels that brings this on for him. For now, he's tic free and back to his calm self. I am starting some my research.

[cara615]

Here is my 2 cents. A Tourette's diagnosis is a clinical one. The motor and vocal tics need to be present for at least a year then they will give that diagnosis.

 

Your son sounds a lot like mine with the tics coming one by one and then going away and coming back as different tics. It took me a full year and a half before I realized this could be a tic disorder.

 

here is what we did first. We got an integrative MD who did lots of food sensitivity testing. We specifically did the ALCAT test which tests over 50 foods. We found that our son was intolerant to CORN, GLUTEN AND DAIRY. Our son was also a VERY picky eater since birth and i was terrified of removing all these foods.

 

Keep in mind that you don't have to remove them all in a day. its a process and it takes time to figure out the replacements. There are tons of websites with recipes for gluten/dairy and corn free foods so its not that difficult to accomplish.

 

The big thing that got my son eating more was removing SUGAR. once I got rid of almost all sugar from his diet (including fruits with high sugar content) his appetite blossomed. he started eating salmon and broccoli, grilled chicken and turkey. Its amazing how sugar can suppress a child appetite and make them only crave sweets.

 

After removing all of these food sensitivities from our son's diet we saw a reduction in his tics. We also found out that he had yeast in his gut so we added grapefruit seed extract (4 drops) to 7mls of OJ, 2x a day and this helped to kill off the yeast. We saw another dramatic decrease in tics once we did this.

 

His body is reacting to allergens most likely so your pediatrician is correct in saying that however i don't believe its always environmental (although it could be). That is why a good place to look is the diet. At least as a starting point.

 

our story goes off in a different direction because our son was eventually diagnosed with PANDAS after an asymptomatic strep infection that i happened to catch last November but without these diet changes he would not be in the place he is today.

 

He had slight ADHD/OCD like behaviors when this all started but once I removed the gluten/dairy and corn all of that went away. We were just left with tics which also decreased to the point of no one noticing them.....until the strep infection of course.

 

Please feel free to PM me if you have any questions. I believe Tourettes occurrs when the gut is not healthy. There is a huge gut brain connection and if the gut is not working properly then the brain can take the brunt of this.

[Robin_RN]

And now they are back with throat clearing a weird sigh sound. I haven't let him have the iPad or any games for weeks as I thought that was the original trigger. I am feeling sad now and hopeless. Every time they go away, I think *maybe* this will be the end. It's so weird. He was completely tic free for over 3 months from Feb through the end of May. Now they seem to be cycling fast. All vocal. ONe will last 4 days, switch to another, last 3 days, switch back, last 3 days, etc. They are very mild. I don't think anyone else would notice them, but for me, it's all I can notice!

 

His diet is very limited. He is seriously the pickiest eater I have ever encountered. We already eat a pretty GMO free and organic diet but I know there is room for improvement and I wouldn't doubt if he had any deficiencies. He was also severely allergic to dairy as a baby. He tested positive on the skin test and also had blood in his stool from micro tears. I breastfed him completely dairy free for over one year and then had him re-tested. He was negative at that point but maybe he is still sensitive.

 

It's very interesting to me how these kiddos all seem to share a lot of commonalities. Allergies, sensitivities, etc. We have had food allergy, multiple odd skin rashes(not eczema), tonsils removed(very enlarged causing apnea at night), constant allergic rhinitis, etc.

 

I need to research the symptoms of yeast overgrowth and I know I need to help him with his diet. I just wish I could figure out what triggers these cycles of tics and extreme hyperactivity. Then in a few days, he wakes up like my calm, content, tic free, relaxed boy. I also have a hard time distinguishing "normal" boy hyperactivity with excessive hyperactivity ( I have 2 daughters as well). He seems to be able to control that part because his teachers always tell me how calm and attentive he is at school, gets great grades, never in trouble a day in his life, etc.

 

Thank you for the 2 people that responded and offered insight. Does anyone know of a more active community with more participation?

[Robin_RN]

cara615, how is your son doing now? Have you seen continued improvement?

[Jeff]

Does your son eat many candies, cereals, etc. which have artificial colors in them, like Red #40, etc...? Once we removed those from our diets, our tics nearly disappeared in about 3 weeks. We've since been able to tolerate some of that stuff with minimal effect, but we learned how "toxic" those colors can be. Once we identified that as our biggest tic trigger, we were able to manage the tics very well and got through the tough adolescent years.

Jeff

[Pilbara]

We so understand how you are feeling, sounds like you might even be handling it better than me, I was an irrational mess in the early days. But with time it does get better as you come to learn more about tics and TS. All the information above is excellent and will start you off learning about possible triggers. I would also add that heavy metal analysis through a hair sample may also be beneficial. For my son, I've narrowed his triggers down to be reactive to chemicals, so I control as much as I can which has been fairly easy. Chemicals in food as mentioned about it also targeted as part of our lifestyle now. My son also tested toxic for Aluminium in his system, which lodges in the central nervous system and brain. Since I have attempted to remove sources of aluminium in our life, added supplements and gone chemical free in the home, his tics are now extremely minimal. Still there but most people won't notice them.

 

I strongly believe my son's TS is more about environmental reactions than a genetic predisposition. I'm so thankful now for the tics because I would still be living in ignorance about how much of a toxic chemical driven environment we live in. We live so much healthier now and it has benefitted our whole family.

 

So glad you've found the forum and I hope you achieve success with your son. Keep us all up to date.

[Robin_RN]

As an update, my son(now 8) has been tic free from last June, until now. In the past week, he has started with the throat clearing/low gulping type noise. Coincidentally, he has just been hit with about 3 separate virus' in the past month. Again, my pediatrician believes, like she always has, that these are triggered by a physical feeling(for example, his throat on clinical exam is red now) and that he has to "work them out". I know she's right, but what exactly does this mean? My two daughter's get sore throats too but they don't "tic" for days.

 

It's been nearly 6 months since his last tic. I hate not being able to figure out why they go away so long and then reappear! Any thoughts?

[Cj60]

Hi,

 

Perhaps your son's throat clearing has an ocd-ish element that your other children didn't exhibit, so it's partly a compulsion? When we were suspecting ocd behaviors with our son, we would prepare teas with licorice root and/or lemon balm as ingredients, and we would stir in some inositol and honey. This would help the minor symptoms we observed.

 

I just looked through my cabinets and didn't see any still sitting around back there with licorice root, but we always have Tummy Comfort (with lemon balm) on hand. You might want to check Chemar's signature link for some recommendable teas.

 

Good luck,

 

Chris

[Robin_RN]

Thank you, Chris. I appreciate the input. I am going to try some different oils on him and we are starting epsom salt baths again tonight. My son just so does not show OCD type behavior. He is the exact opposite, if that makes any sense. I've noticed the sound dying down today. Interestingly, it is the same sound he was making last may when i posted. It's more like a weird gulping. My husband tells him he sounds like a baby dolphin. We are trying to make light of the situation because this is the first time he expressed feeling worried about other people noticing. Before this, he didn't seem to notice them. This is his pattern. About 4 days and then nothing. My dr feels it's very "transient" tic disorder-ish but she totally did not want to put a name on it or investigate it further. Just told me not to draw attention to it, focus on health foods, etc. After all of my reading and research the different tic disorder labels just seem like a matter of semantics anyway. What does it really matter? I am an RN and have seen my fair share of diagnosis, dr's opinions, etc. I would not consider putting my son on any of the meds that are prescribed for Tourette's so really it doesn't matter what it is called. I just find it frustrating that I can't figure out what triggers it for him. I don't believe it just has a "wax and wane" character. I know there has to be more and for him something about getting sick does it to him.

[Robin_RN]

In case anyone is following this or experiencing this, I would like to update that as of today, tics are once again gone. His usual pattern. About 4 days and then months without.