New to tics! Advice needed!

[pdez]

Hi everyone!

My 9 year old daughter started with tics at 7. I noticed she was blinking excessively and because I was so naive about tics, I took her to the eye dr. He said it was a tic and that eventually it would go away and gave some eye drops. About 2 months later she stopped doing it and I forgot all about it. At some point (we are still unsure of when), she developed a new tic. She would bend her neck backwards. At first I thought she was just stretching, but when she kept on doing it I asked and she said she just did it because her body wanted to. It seemed weird but again,naive, I paid little attention and eventually it went away.

Now 9 1/2 my daughter has developed multiple tics and we are panicking! She said she started doing this the fist days of November. But it happened only sometimes and she payed no attention to it. She thought it was rare but nothing to worry much about. Two weeks ago I went to see her Christmas concert at school. My daughter is super social, has a great personality and had always shined at this kinds of events. Well, this time as I sat there videotaping her I noticed something was wrong. I saw my daughter moving her head really strangely, not as if following the rhythm but as if something was wrong. I could see she was super stressed out. When it ended I asked about the weirdness and she said everything was ok and I forgot completely about it. The next day we went out for lunch and she sat in front of me. That's when I noticed she would twitch her shoulder and her head. When I asked her to stop, she said she couldn't! We were terrified! She kept doing it over and over again and was unable to stop. I'm living abroad so I decided to call both my local pediatrician and my hometown pediatrician. They both said it sounded like a tic. I kept a close eye on her over the weekend and we noticed she was doing not 1 but many different tics. She will move head and shoulder, roll her eyes, stretch her back, contract her legs and her toes. First thing Monday I took her to the dr and he said it was tics. He referred us to a psychologist and said we would not pay attention to them and they would eventually go away. He said we needed to stop asking her about them, and she would eventually stop. The next days were horrific! Before she would do one by one, now she was doing them all at the same time. One would unlock the others. Her tics were worst when she was watching TV or in her iPad. Researching I came up with this amazing website and stumbled upon the book Natural Treatments for Tics and Tourette's. Immediately I asked her to stop watching the tv and using her iPad and the tics went from 50 per day to 10 or less per day. I also stopped her sugar and candy intake and in the past three days have seen a complete change and reduction in her tics and humor. Tomorrow we'll be going back home and I've scheduled an appointment with our pediatrician. I feel more comfortable asking him to run tests. What tests should I ask for? Strep? Allergies?

This all new for us. Tics does not run in our families. And we do not know how to approach them. Please help. Any advice works for us!

Five minutes ago my in laws called us through FaceTime. As my daughter came to the iPad to say Hi immediately she started ticking! She had not had 1 single tic all morning until she sat in front of the iPad for literally 2 minutes. My gut feeling is telling me she is light sensitive.

Thanks for reading our post, any advice helps!!!

[Wombat140]

Well, that seems like a pretty clear inference to me. Glad you've found something, anyway! Of course that doesn't explain why she should suddenly develop this reaction to screens now; but then she has had them on and off before.
I can't help with the question of what to ask the doctor myself, but I'll post on the PANDAS section of the forum (which is usually busier) to let people know about your question,. I think after those marked reactions to screens and to sugar, you needn't be shy about telling your doctor that something particular IS setting it off and asking him for tests to find out what!

[Chemar]

Hi pdez

 

I am so glad you have ordered Sheila's book as it is a wonderful resource and reference.

 

Do take a look at the threads pinned to the top of this forum, especially the one for Helpful Threads as there is a lot of good info there.

 

Also, a search here will bring up a lot of info re the impact of screens on some people with tics

 

I am not sure that posting on the PANS forum is relevant to you if there is no infection connection to the tics? The parents there are specifically focussed on the treatments for PANS/PANDAS, and so it may be more confusing than helpful imo...unless of course you suspect a possible infection like strep or other might have been the cause of the tics?

[Sheila]

Hello, pedz -- I know tics can be so startling and upsetting, and parents feel so helpless. But it seems you have already discovered some very important clues: electronics can make your daughter's tics worse, along with sweets. That's a huge finding! Good for you.

 

It is very possible that your daughter is light sensitive, as you say. She may also have a sensitivity to electromagnetic fields. In both cases 1) nutrients may help 2) avoiding exposure is a major key, and 3) you want to aim to reduce her "total load" of potential factors that could be aggravating her nervous system.

 

When you see the pediatrician, you could start with discussing food sensitivities, allergies, and nutritional status.

 

Doctors differ greatly with what they will test for, which tests they use, and what they accept as possible reasons for tics. So there is no telling where the discussion will go. But you could ask for a referral to an allergist. And ask him or her to rule out an underlying infection.

 

Do you have allergy in the family?

 

There are a number of environmental factors that can trigger tics, as you have probably seen on our site or in the book (if you have received it already). Please keep a journal of daily "encounters" -- from what she eats, drinks and breathes (i.e. perfume) to what she is eating. Be specific with the food. For example, there's a big difference between natural maple syrup and artificially flavored/colored syrup that's made from corn syrup.

 

Also, try to look back and jot down anything that you recall changed around the times when the tics started up or flared-- and these are random: a new pet, renovation in the home, an illness, mold at school, starting up gas heat at home, even something like a new cordless phone system or a new car (toxins)--there are so many things that might be part of the puzzle. Does anything special come to mind? Typically, once there has been a major exposure of some kind, then other minor exposures cause reactions.

 

I hope you will be able to go "green" at home and keep working on the diet. I know it seems like a lot all at once, so please take it in steps and let us know how it goes, OK? You are already off to a great start.