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Parents of children with Tourette Syndrome

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Looking for encouragement today

Leslie - posted on 04/30/2010 ( 2 moms have responded )

Hi...I am new to this...and mostly wanted to feel a little less alone in dealing with all of this stuff. My daughter who is almost 13 was diagnosed with ADHD when she was five...The tics were already there, but I didn't recognize them as tics until she was 6 or 7. We always knew that she had anxiety disorders...She would hide under her desk when she got upset and she would cry uncontrollably. She could not calm herself down. We tested her again this December and her diagnosis was TS, OCD and ADHD.
Her symptoms are a bit unusual...I guess everyone feels that way...But I am looking for someone who has dealt with similar symptoms and maybe a little encouragement. My daughter suffers from dermatillomania (skin picking disorder) and has urination compulsion. She recently started occupational therapy for sensory integration disorder and anxiety and she is also seeing a behavioral therapist. She takes Prozac and Intuniv. I think we have finally found the right combination of meds for her...She has stopped having meltdowns, and her symptoms have lessened in severity.
I would just like to know...Is there anyone out there who has a child who urinates in the bedroom floor or other inappropriate places? Is there anyone who has a child who physically hurts themselves on a regular basis? How do you keep yourself from worrying to death? I know that I am doing everything I can for my daughter right now and I am so thankful for how much I have learned and how much help I have been able to find for her, but I am feeling a little discouraged because three weeks ago I removed the carpet from her room and took her door off as a means of helping her fight this obsession. We had three weeks of no pee in the floor, but today I found a pillow hidden in her closet that she had urinated on. And for three weeks, we had no skin-picking because I took vacation and re-directed her every time I would see her start to pick. I would give her therapy putty or other tactile projects. But this morning, her comforter was bloody. She had picked inside of her nose so that I couldn't see where she had picked. It is horrifying to have a child who hurts herself...It is worse to have one who does it secretly.

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Doreen - posted on 08/11/2010

My son doesn't have the bathroom issues BUT he does have compulsion issues that hurt him. He scratches his arms like he has a rash until they bleed. And although he doesnt do it all the time it is deffinately appearant when he is having an anxiety issue (school, etc). He also grabs his foot and twists it at the ankle while bending the leg all the way up.

It is so hard to try to find the right way to deal with the condition and issues our children have. Truthfully, there is no right way and I dont see a way that may work for a liitle while that is going to last forever with all the weening and waving of the condition.

I too just go into my room and cry for my son. It is so hard to try to treat him like a normal kid when there are so many issues to deal with but when they think like a normal kid

Elizabeth - posted on 08/10/2010

I totally know what you are going through my son is 5 yrs old and was diagnosed in December 09 with tourettes ADHD and Anxiety OCD compulsions so I can completely understand what you are going through it is defenitly extremely hard my ex the father of my son has tourettes so I kinda learned alot through him all the years I was with him but I am now a single mother dealing with My oldest who has some obvious issues and a 8 mnth old baby with a heart condition and to top it all with my oldest is dealing with the seperation of his father and I ... I think its been a year now that his father and I split up but anyways he also has the washroom issue but he does #2 and will hide it i see him bite himself pick at his skin roll his eyes back to the point where they hurt him it is very scary to go through all this knowing there is not much you can do about it I dont believe in drugs so I wont use that option but there is an awesome TS team where we live who work wonders for my son and I whenever I/ We need them they are there for us. My biggest struggle I find is trying to treat him as normall as possible and not to have him feel like there is anything wrong with him b/c there is not and the way people look at him makes me so angry sometimes I find myself going to my room and crying for him just knowing all the triumps he is going to have to go through wishing I could take all his pain & suffering from him into my own hands but I know \i cant do that ....... So just kow you are not alone