Looking for guidance and support - my 8-year old son

[knav]

Hi,

 

I am new to this forum and looking for some guidance and support in regards to my 8-year old son.

 

About 2 years ago (Fall 2012) my son had his adenoids removed (because of constant sinus infections). It helped tremendously. But a few weeks after his surgery, he started clearing his throat quite often. I attributed it to residual irritation from the surgery and the ENT told me that was probably the case. The throat clearing stopped after about 3 months.

 

Then he started with what I can best describe as eye-widening for no reason. I actually called the ENT and asked if that was normal after adenoid removal and he said he never heard of it. But it stopped after a month or two, so I let it go.

 

Then he started with "hand waving." Everything he does, whether it is reading or playing with LEGO or eating, he subtly waves his hand over the food, toy, book, etc. It almost looks like he is casting a spell. That decreased in frequency after a month or two, but still happened on occasion.

 

Then the eye-widening came back in Fall 2013. I took him to his pediatrician and she said neurologically he looked fine, but to see an opthamologist if I was concerned. So I did. He was totally fine. So I went with my instinct and took him to a pediatric neurologist, who told me the eye-widening sounded like a transient tic. We did an EEG to rule out anything else and it came back totally normal.

 

But now the past few weeks, he has had many new tics develop. The eye-widening has almost entirely gone away, but now he is darting his eyes around a lot, like he is overly distracted. The hand-waving is frequent again. He was making a grunting laughing sound for about a week. When that stopped, he started making a grimacing, eye-squinting face. And just the other day he started nodding his head for no reason. It is very upsetting to me to see him do these things. Most people around us (friends, family) don't notice these tics or just attribute them to his "goofy" behavior. But I notice.

I am taking him back to the pediatric neurologist this week to discuss my concerns. I worry that this is a sign of Tourettes or something much more serious.

In terms of environmental factors, we have been working on a massive home renovation project the past 6 weeks, so I am not sure if that would trigger this new wave of tics. Allergy season is in full swing in our area (although he isn't showing any typical allergy symptoms)--last night I put our HEPA filter into his bedroom to see if that will help.

Myself and my daughter have Celiac disease, so he eats 99% gluten free and relatively healthy (no dyes, overly processed foods, etc.). He takes a multivitamin, a probiotic, Vitamin D, calcium and magnesium just about every day. I even tried Epsom salt baths a few times a week for a boost in magnesium, but didn't notice any change.

I am going to try and stop screen time for a week or so. Now that the weather is warmer, he will definitely get outside more and increase his activity level.

Does anyone have experience with this type of situation, where mild tics occurred on and off then suddenly seemed in increase in variety? I would not consider it a "drastic" increase or affecting his school performance (yet), but it's enough that I notice it and it's worrying me terribly.

 

Thanks.

 

[Chemar]

Hi and welcome

 

the "massive home renovation" stood out like a red flag to me as their are so many potential triggers there....from uncovering or disturbing toxic old stuff to the many triggering things in new wood, new carpet, new paint etc etc

 

So i would look into whether any of those are the reason the tics have ramped up.

 

Also, as you mentioned the sinus problems and adenoids....have you ever looked into PANS/PANDAS? which is often associated with tics when a child has strep or other infections?

[knav]

Hi chemar,

 

Yes, after reading through several forums on this site, I thought perhaps the home improvements we are doing is causing this flare-up. The renovations are due to wrap up this week so that, in addition to running the HEPA filter in his room and keeping windows open during the day, may help...hopefully.

In regards to PANDAS, his symptoms did not hit all at once and severely, it has been gradual. Since his adenoid removal, his sinus problems have completely disappeared. His pediatrician did a strep test on him...twice...and both came back negative. From what I have read on PANDAS, it doesn't seem to really "fit" with what my son is experiencing.

 

Thanks for your reply.

[Cj60]

Like your son, my son's tics started and stopped over a period of several years, then seemed to multiply over a period of a few months to the point of becoming a real concern to us. But dietary changes did end up (eventually) making a noticeable difference with him.

 

My suggestions would be:

 

1) be very cautious with regard to the feedback you get from the ped. neur. My experience with the two I saw was that they are way behind the curve with uncovering root causes to tics. In our case, they were useless (even harmful considering the stress and concern that they provoked).

 

2) identify an environmental practice that can help you sort things out. Unlike the traditional ped. neruologists, environmental doctors allow themselves to think and treat in broader ways, and don't allow themselves to be trapped by the standard line that "there are no studies to corroborate that" or "the evidence is all anecdotal."

 

3) look more seriously into the possibility that an underlying infection might have something to do with the tics. The original sinus infection indicates that possibility, along with the fact that he seems already to have a pretty healthy diet (not that there couldn't still be something(s) he's eating that are not agreeing with him).

 

Good luck

 

Chris

[JaneFBH]

Hi there -

 

I do believe the construction may be a trigger. However, I have some other thoughts - I am also very new to this but after much trial and error this is where we are. I also have celiac too and my DD age 12 seems to be gluten intolerant. She has full-blown TS with anxiety and OCD. We have recently seen an 80% improvement and I will tell you what we have done:

 

She was already 99% gluten free and dairy free, and mostly low sugar. I also cut as much as possible any grains - so trying to do paleo but as much as I can with a picky 12 year old.

 

Digestive enzymes and probiotic - I use Therbiotic and Kefir

500 mg daily of Taurine - my DD did not tolerate Magnesium well.

Prozac - 2.5 ml daily under guidance of psychiatrist for anxiety - but I am going to try to wean her off

Essential oils: Young Living PANDAS protocol - check this website: http://westoppedpoppingpills.com/pandas-protocol/. If you need more info message me. I think this was KEY.

Epsom salt baths - 1 or 2 times per week.

 

The biggest change came with the Taurine - she had a tic where she would scream LOUDLY every 3-4 seconds. The day after I started her on Taurine I have not seen that tic since - maybe a squeal here and there. That was about 3 weeks ago.

 

Keeping my fingers crossed and praying that my DD continues to improve. I hope you find this helpful. I got all of my information from this website, so keep poking around to see what rings a bell for your son's situation. Best of luck and prayers to you.

[Chemar]

Just a word of caution that as with all supplements...not everyone responds the same way

 

My son had great benefit from Taurine as well but we have had others here who had adverse reactions to it.

 

re PANDAS....remember the categorization is now PANS to incorporate a lot more than strep!

[Pilbara]

Welcome to the forum, it's an amazing place with so much information, finding it was the best thing to ever happen to me and has sent me on a real journey into health.

 

My son's tic were at their worse when we moved into a brand new home. You are doing the right thing with the air filter and opening the house up. Lots of interesting information out there on Volatile Organic Compounds(VOC)which are in everything in our houses from paint, cupboards, carpets, you name it. They do take a long time to clear unfortunately, just keep doing what you are and help your son detox the chemical build up in his body. The advice above is great, so grab onto it and start exploring.

 

On a positive note, 12 months on and my son's tics have only reduced in severity. He still gets them, currently it's a teeth chomp, blowing on the back of his hands and various facial tics much like you have described and some vocal tics, but they are now only occasionally, normally towards the end of the day and no one even notices them.

 

There are many different triggers for tics and every child is different. For us however, it is chemical sensitivity as the primary trigger. So I've gone chemical free in the home, buy organic veggies and meat where possible because our food is full of chemicals and air filtration. My son also had toxic levels of aluminium in his system, so his body struggles to clean itself of the toxicity of modern life.

 

Best of luck with your journey, stay positive and learn as much as you can.

[colcronin]

Knav I know you posted this years ago but I came across it while trying to help my son who is 7 with an increasing throat clearing tic.  We are considering adenoid and tonsil removal this summer. Did you ever figure out which was the trigger or resolve your son's issue?