My son has Tourette Syndrome/PDD NOS

Leticia - posted on 05/12/2011 ( 2 moms have responded )

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If anyone else has a child with TS/PDD-NOS would like to know what you are trying out. My son is 12 years old he has been diagnose a while back we have tried so many different things and nothing seems to work, Medications, OT, Homeopathy. I have reached out to alot of resources but it seems my son is just to complicated to figure out. I want to here from other parents to see what you have tried and what has worked for your child. I live in Northern CA.

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Lori - posted on 07/13/2017

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I understand not wanting to put your child on medication, I fought it as well. However you have to look at the overall quality of his life and decide what is best for him. Tourette's Syndrome carries with it a major stigma. My son is 14 now, he was diagnosed in before 1st grade with ADHD and in 5th grade with Tourette's Syndrome. I tried to use alternative methods in 1st and 2nd grade with regard to his ADHD, these did nothing! He was miserable because he could not sit still, he hated that he couldn't concentrate and that he was unable to even hold a pencil in his hand half the time without dropping it or throwing it (which of course we know now was probably a tic), let alone write a word! The day that I put him on medication for the first time was the happiest for him. He finally felt like he wasn't being stared at anymore and that he was able to actually be social and make friends. He made his first real friend in 2nd grade. He still had alot of behavioral problems due to the (undiagnosed at that time) Tourette's Syndrome, but things were better. He actually had friends and began to feel better about himself. In 5th grade, the school case worker requested a psychiatric and neurological evaluation be done. It was at this time that we found out about him having Tourette's. He began seeing a Psychiatrist for medication and a Therapist. Things were even better after that. Once he began taking clonidine for the Tics, his life vastly improved. Then he had a major growth spurt (a man sized growth spurt) and nothing worked again! So back to the psychiatrist for a different cocktail of medication. He now takes less medication, but different meds, they are working well again. You also have to remember that every single person with Tourette's is a different person, what works for one person will most likely not work for another. Tourette's is tricky and hard to deal with. My son changes yearly and not always for the better. He's developed in recent years Coprographia, Copropraxia and Coprolalia as he's gotten older, which is incredibly difficult to deal with. He says very inappropriate racial and sexually suggestive things all the time (Coprolalia), makes obscene gestures (copropraxia) and draws and writes (and posts online) inappropriate things (Coprographia). He's a teenager, he's online constantly, Tourette's is a very difficult thing to deal with alone without having the added problems with social media. I dont know if anything that I've said has helped at all, but I hope so. BTW/I live in Northern NJ.

Katherine - posted on 05/14/2011

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I wouldn't give up. I have worked with smaller children doing ABA, maybe some form of behavior modification may work for him? It's based on the premise that rewards (not tangible) help the child immensely.

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