Tourette’s experience and advice.

[DrSeuss84]

DD is 13 and was diagnosed with Tourettes as a result of PANDAS at age 7. There were no diagnostics tests (just videos of her tics reviewed and symptoms discussed). I have noticed recently other people discussing that they were given an MRI before Tourettes was diagnosed. Did we miss a step? Also in the last 6 months the tics and related ocd compulsions have become much worse. The facial tics seem almost constant. She has developed a severe phobia of breathing in other people’s breath and will cover her mouth all day in class and hold her breath. Is it normal to get this bad during puberty? How long does that spike In symptoms usually last? At what point did other parents consider medication? I’m sorry for all the questions I’m just really struggling to cope at the moment I feel completely out of my depth. We were given a diagnosis and sent on our way with no support or advice.

The mri is just to rule out anything else, rather than Tourette’s showing on an mri.

i would say the ocd related symptoms are the pandas flaring up. Though you may mean this in your post and I have misunderstood.

I have it and so does DS. Neither of us has had an MRI. It’s worse under stress or when ill/tired. Particular tics seem to last 6 months or so before changing, which we both find is reassuring to remember when things are inconvenient. We have access to medication. I took something for it for a few years in my early twenties. DS hasn’t tried anything yet, but has an open prescription for a different pill if he wants to. He was offered a group CBT course, but it was a lot of midweek travelling so we declined. Other than that, we are left to get in with it. I hear Tourette’s Action are helpful and have a pack for schools if that would help?

Thank you. That is really helpful. I will have a look at Tourettes action. School is very problematic at the moment. She has maybe 4/5 tics at any one time but it can be hard to separate tics from compulsions. Most are facial. They can sometimes be almost continuous. I am hoping that things settle down after puberty.

I think the teenage years are the worst for TS and the more you think about it, the worse the tics get. Where did you get DDs diagnosis from? Can you go back, or ask to be referred to a more specialist unit? Queens Square in London, Oxford JR. I think Bristol have a TS clinic too.

There are medications that can help get you through a tough patch. Also strategies to manage tics. It almost certainly can be better for your poor DD.