Intro and a question

[GErl]

Hi all,

 

My name is Gudmundur and I live in Iceland. In january my son was diagnosed as having Tourette's, so me and his mom are just starting to discover all the things connected with it. We just recently discovered this website and the forum and find absolutely wonderful. I'm also discovering that I probably have Tourette's myself, or at least some kind of a tic-disorder, as I had a lot of tics as a kid, and still have a little bit. My son is nine and his tics are mild, and thankfully the specialist who diagnosed him didn't see any reason to put him on drugs. He has motion tics, the usual eye-blinking and discomfort in the shoulders, a few vocal tics that come and go and times there are more motion tics of more variety and severity. Going out for a walk is quite a bother, as he often has this tic to shoot out his hips every few steps, which is very uncomfortable for him. He forgets about it if we manage to turn the walk into a game, run around or play hide and seek and then it usually goes away, but understandably that's not always possible. We changed his diet when he was diagnosed, to begin with we took out sugar, yeast and wheat, cut down on the milk and gave him omega-3 and just these changes have changed a lot for him. The problem is that he is really picky and doesn't eat just anything. But he notices that eating f.ex. sugar makes his tics grow more severe, so he's surprisingly willing to try new things.

 

There is one problem of his that we haven't seen mentioned anywhere, and maybe it has got nothing to do with Tourette's, but I'll give it a try anyway. It's a bit awkward, so maybe that's the reason no one has mentioned it. The thing is that my son has had problem with involuntary penile erection from time to time. It's not really a chronic problem, but there have been times that it has been a real bother for him. When he was a kid, maybe 3 or 4, he sometimes had erections that were really painful for him. Once, when he was four or five, he had a painful erection for a whole night, we had to be with him and relieve it with a cold towels. Finally we took him to see a doctor, but he just found it funny and had never heard of anything like this. It has never been this bad since, but sometimes it's bothersome. We sent him to a yogaclass for kids in february, in case it would help him controlling his tics, and there the problem persisted, he got an erection during class and got really frustrated. Has anyone heard of a similar situation? As he hasn't reached puberty yet, and that the problem began when he was very young, that cannot be the reason. So neurological irreguralities could be an answer.

 

I know this is probably an odd sort of introductory message but anyway, I'm really glad to have found this forum and look forward to learn a lot from you all.

 

Best regards,

 

Gudmundur

[Chemar]

Hi Gudmundur and welcome....how nice to have a member from Iceland!

 

I am so glad that you are using good diet etc and avoiding the meds.

 

As to the other issue, honestly, I havent heard mention of this before! And, in my years of learning about Tourettes, I have heard some strange stuff However, this may well be neurological and I hope you do find someone who can give you some information about it.

 

I dont know if you have seen Leslie Packer's excellent website Tourette Syndrome Plus

here is the link

http://www.tourettesyndrome.net

 

also

there is someone you may be able to ask about this

Dr Duncan McKinlay affectionately known as Dr Dunc, a psychologist who has TS himself and does a lot of work with young people

here is his website Life's A Twitch http://www.lifesatwitch.com

[kim]

Gudmundur,

 

So glad that you felt comfortable enough to ask that question. I don't believe there too many here, who aren't used to dealing with uncomfortable realities.

 

Like Chemar, this isn't something I have dealt with or read about relating to TS either, but if I come across anything, I sure will let you know.

 

It was interesting that your son was willing to cooperate with no sugar.

 

There are some really good articles explaining the bodies inability to deal with the gluten, caisen protiens, and the kidney/ pancrease function relating to insulan resistance. I read a good on last night, if I can find it again, I'll post it. A lot of these articles are theories, but when you live them, it's pretty easy to buy.

 

What a great suggestion Chemar gave about emailing Dr. Duncan. If you get any answers, it would be great if you shared it. Might help someone else too.

 

Kim

[GErl]

Hi, and thanks for the replies.

 

About the sugar, we (well, actually, his mom did) discovered one natural sugar-substitute that we could use, Agave-syrup or nectar. It's organic and suitable even for those with diabetes and it's very sweet to taste (more info f.x. here: http://www.shakeoffthesugar.net/article1042.html). We also use raw cane sugar in some instances, but sparely.

 

But I'll try Dr. Duncan and see what he has to say. I'll post it here if something comes out.