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jmacja

disappointing news...where do we go from here?

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We just got back from a visit with our child neurologist. We had gone back for our 3 month check up and to tell her that my ds (10yoa) tics are much worse. She wanted to up his haldol, but we told her we really didn't want to go that route. I asked her about the possibility of food sensitivities and/or possibly seeing a chiropractor for help? She told me that neither would do any good. The basil ganglia isn't influenced by outside factors. It's the basal ganglia that is the problem. We then asked her about deep brain stimulation and she said there has been good effects from that, but she wasn't sure about the effectiveness numbers in children. She said she would refer us to the movement disorders clinic in Houston to see if that was something we might want to try. She also put him on clonidine. We'll see....I hate giving him all of this medicine, but I don't know what else to do. He is having so much pain from the tics that cause him to move his neck, that he can't sleep. He was crying last night and so upset. I really want to help him, but I am at a loss for what to do now. I would appreciate any and all help you could give me.

 

Thank you....

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So sorry to hear your news. I respectfully disagree with what the neurologist told you. My son is proof of that!

I have to leave for work but will try to post more later, or hopefully someone else will add more info for you.

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Hi --Sorry things are so rough right now. I had replied on a different thread before, and you mentioned that you were going to start making some dietary changes, eliminating artificial additives and reducing sugars.

 

How has that gone? Do you see any difference--though this could be just a small part of what is going on?

 

I'm glad you have the book Natural Treatments for Tics and Tourette's and you could start making sure your home is free of typical toxic chemicals found in cleaning products, scented detergents, etc. If you read the parent letters in the book you can get an idea of things to try. I know it is hard to look into things on your own while so emotionally involved with your son's problems, but see if you can do a bit each day.

 

In general, there are doctors who accept the fact that environmental triggers including infections and foods have the potential to cause inflammation in the brain, resulting in tics and other behavioral issues, and other doctors who don't.

 

Could you travel to Hurst, TX?

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I thought I had possibly noticed a small change, but maybe that's just wishful thinking. His tics are worse again today. So, now I'm going back through yesterday and trying to think about what he ate, where he was, etc.... We went to the asthma/allergist today and my son's asthma is getting much better! I was so happy with the results of his breathing test. yay! I asked the doctor about the possibility of testing for food sensitivities and he told me there wasn't really any good way to do this. So, until I find something else, I will continue working on looking for foods and other triggers....

 

Sheila, we could travel to Hurst.

 

Thank you all for all of your help!

 

Joy

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