So I posted this to the Open topics but even though doc said not Tourrettes, but a motor tic disorder, this board seems like more in line with where to post it , so here goes :
My daughter recently started tics. We did a nuero workup, there were issues with the neuro (he started her on a med and went on vacation, no coverage, etc) so we were in the ER and working with Peds as it was bad. Everyone was leaning towards stress/anxiety, however new Neuro in place and MRI and history taken, it's a tic disorder.
So now we're struggling to work with her on this. Trying some meds but of course there are side effects, one being drowsiness. She's 14, involved in band, and wants "normal" that she can't have. Amazingly she's doing ok with this, but we have our moments...
The Doc seems to think it stems from an abnormality in the brain, that when she was exposed to a viral illness years ago there were some changes, and then when puberty hit, the chemical changes brought the tics out. They come and go but lately are pretty bad. Apparently they were starting months ago, she would do this full body "shudder" but we didn't realize what it was because it was occasional. Then the sudden onset of full body tics started September 8th.
Anyone dealing with a sudden onset in the teens? THey have ruled out conversion disorder, it's not psychological, and she can't control it (there are some in our family that feel it's not real and she's doing it for attention however not the case.. )
Sh'es on Saphris and that seems to be helping but we've just started it.
Anyone share some insight on how to help them through all this. She's going to try to take it late afternoon today instead of bedtime even though she's really tired on it, as she's in the HS band and it's homecoming night, she wants to play and she wants to attend the dance (hopefully with minimal tics happening... )
it's a daunting thought that she'll deal with this for life, and she had back surgery already 2 years ago for scoliosis and has rods down her back, she's just been through so much and here's another thing. add that we don't have familial support in this it makes it really rough!! She's pretty amazing in that she says god has a plan apparently and this is part of it and says "well mom, it's part of my life now so I can't change it, so I have to deal with it". Kids stare some, but there are kids with Tourrettes in her school so I think that they are used to seeing some of this already but HS -- kids are still cruel and she already was conscious of her scar in PE and such and now this...
PPl have suggested counseling to assist in the life changes and we'll do so; but just another parent going thorugh this would be nice to talk to!