Why My Daughter has Tourettes

in tourettes •  7 years ago 

Why My Daughter has Tourettes

Let me start off by saying I'm a proud father of two beautiful girls,
Norah (7) and Sofia (10). I can ramble on continually about how brilliant and funny they both are but that's not the point of me writing right now. The point of this is Tourette’s Syndrome, how Norah got diagnosed with it and what triggers it.

She was in her late 6th year when we noticed as she watched TV or a YouTube video sitting idol that she would make vocal sounds like little grunts. I asked her why she was doing it and she just replied “I don't know I just do it”. I didn't think too much of it after that, it didn't seem to be an everyday occurrence so I didn't worry. A few months down the road her mother noticed that she was now shrugging her shoulders along with making the little vocal grunts. She sent me some video and now I was worried. Seemed very strange and looked uncontrollable for her. At this point Both her mother and I started googling signs of Tourette's syndrome. We found after a short search children that had “tics” just like Norah. We were pretty certain that something was off and we needed to set up an appointment with a doctor.

The doctors appointment with her general doctor was very much just a stepping stone of questions that led us to an appointment with a neurologist. We were both nervous but definitely prepared for the outcome of the Tourette's diagnosis. But the point here is not the diagnosis but what triggers the “tics”. Funny thing is a week leading up to this first appointment the tics were worse than ever. This will come back up later on.

The first appointment in the neurologists office was a series of tests, it was kind of scary since we had to leave her alone wearing a cap like the one “Eleven” wore in Stranger Things. If you haven't seen it you should, anyways it was a cap with a bunch of electrodes on it to test brain waves. She sat nice and we were finished for the day in about an hour or so. The test came back showing nothing out of the ordinary, which was a relief. Our next appointment was with the Neurologist. The three of us sat with him for a good hour as he talked to Norah and us and explained what was going on. One of the things we were worried about was whether or not she would need medication. We figured at this point with the first tests coming back ok we should be in the clear but it does seem like some doctors medicate for just about everything.
This was not the case for Norah and we were relieved.

The doctor boiled it down to adrenaline. He said that a lot of us have tics in varying forms.
Some are more pronounced than others. When we get nervous or excited our adrenal glands release adrenaline and we might tap our foot, bite our nails or do some other form of movement to do something with the energy we are receiving from the increase adrenaline. Please note that I am paraphrasing here from what I remember him saying. He mentioned that when children have this extra adrenaline surge they tic too but sometimes it's more noticeable because they are smaller and it might affect them more. This is what is happening to Norah he said. He told us that as long as it's not interfering with school or any other activity that we would not need to medicate. This calmed our nerves a bit. Children usually grow out of the tics he said but might pop back up in the future during puberty. As they grow there are so many changes in the body that might trigger these tics to come out in different ways. He said that the best thing to do is eat a healthy diet and stay active, try and keep stress levels down.

Now remember when I said that a week before the neurologist appointment the tics were the worse and most frequent they had ever been, you might think well stress from the upcoming appointment right? We didn't really say much to her about he appointment just that she would be off school that coming from for a doctors check up. Stepping back into the neurologists office for a moment, he handed us a pamphlet that gave dietary restrictions for ADHD, which he made it clear she did not suffer from but the diet restrictions are the same and help in both cases. He didn't put too much emphasis on this just a “oh yeah and follow these guidelines for food, this will help prevent the tic” that was really it. So we read through the guidelines and two main things were stay away from nitrates and food dyes. Nitrates being the ones pumped into deli meats, bacon and hot dogs. This wasn't much of a problem since she doesn't eat those types of food anyways. Food dyes though yep she loves her food dyes lol! Red 40, Yellow 5, Yellow 6, Blue something or other. This stuff is in a ton of food, food you wouldn't even think of having dye in it. Not only are these dyes linked to cancer but I guess they can also cause Tourette's tics!

The week before we saw the doctor we went out to the movies. Norah got a box of “Air Heads” which are filled with dye. She had more that night I think than she has ever had and that week ticked like crazy! We could not be certain that this was the cause that week until the next few weeks where we eliminated all dyes and the tics magically went away! This was unbelievable! I mean I know this stuff isn't good for you but to the extent that our child would be diagnosed with Tourette's and the only change we make is removing the dye and the symptoms disappear!? Wow!

Now I know what you may be thinking, Tourette's is a neurological disease and food alone can't be causing it! Well from where we stand with Norah she was diagnosed with Tourette's and after we took out the dye the tics disappeared. Now as things went back to normal Norah had a cereal that had dye in it and she had about four bowls over the course of a week and within a few days she was ticking again after she had not ticked for at least a month. This made it clear to us that there was a direct connection between the food she was eating and the vocal / physical tics that she was unable to control.

Please let me know in the comments what you think of this, was the diagnosis wrong, was there something we or the doctor missed? I would like to know and I would like this to be a discussion to help other parents that are going through the same thing.

Thanks for reading! First post on Steemit! Yay!

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