Referral for Tourettes

[elephantpoo]

Hi,
I used to post a bit on here, but for several reasons I have found myself burying my head re. DS (8)
Anyway, without going into too much detail, we suspect Tourettes (and I have an inkling towards Aspergers too) and were previously (18 months ago) referred to Paed by lovely GP. Anyway, we have come to the realisation that Paed was not knowledgeable in this area and fobbed us off with "simple tic" diagnosis.
On lead up to returning to school and the anxiety experienced by DS (and the resulting ticcing) we have realised we can no longer ignore this.
We are seeing GP (who originally referred) today and want to go in and ask for specific help - but who do we ask to see?
Last time we were referred and then had to call for an appointment, at which point we had a choice of venues / Paeds......so not sure how we know who we're seeing.
Thanks in advance.

They aren't. They do the same tic disorder diagnosis. Contact Tourette's action uk. Ring or email and ask them to send you the list of paeds they recommend who have a good knowledge of tic disorders. We went with one of their recommendations and although I had to write to the GP requesting out of area referral and wait a year it was worth it and I know I am seeing the best tic specialist in the country. TA were very supportive at a devastating time for us.

Good luck. Pm me if you want.

Sorry to hear about your son. He would have had to have the motor and vocal tics for at least a year before Tourettes could be officially diagnosed. Tourettes is the most severe tic disorder and there's a whole list of tic disorders. So the Paediatrician may not have been wrong in their diagnosis.

There's still no harm in asking Tourettes action for advice. My children are seen at CAMHS. Although a Neurologist diagnosed my kids, because of the medicines used to treat Tourettes, they are now both treated by a Psychiatrist.

I understand that Champagne, but our experience of CAMHS is that they just diagnosed tic disorder (when he actually has Tourette's without a doubt) and then dismissed them. Said oh well they wax and wane. The specialist neurologists have a clinic and specialists teaching habit reversal therapy etc. They also offer to come and speak to your school. You may have been lucky with CAMHS but for many people they are woefully lacking.

Also 80% of kids with tics have a co-morbidity. I wish someone had told us that so we could have investigated our other concerns earlier. If you suspect aspergers ask for a referral.

My GP was the one that diagnosed my daughter. Just told her how long she had them. That my son's paed a few years ago mentioned it when my daughter tagged along for a consult.
My daughter hates going to the doctors so her tourettes was going off something chronic.
She scared my husband when we got back :D

I didn't say we had a good experience. Only that that's who we see

Hi all and thank you so much for your comments. And apologies for the delay in replying.

I went to GP that day and because of the way these stupidly short appointments go the focus somehow fell upon DS being anxious and before we knew it me and DH were out the door, advised to reassure DS re. his tics.

Anyway, got home and googled something like "explain tics to children" and the result that I clicked on was a leaflet from Tourettes Action. After reading the leaflet I'm even more convinced it's TS There are things DS does that I hadn't considered as being TS - he smells things, he repeats the last words of sentences all alongside his vocal and motor tics. He's had this going on for at least 3 years now ChampagneAndCrisps . I got hold of Tourettes Action and they've been fab......they sent me their list of specialists MyFabulousBoys

colettemum3 - it was our GP who first mentioned TS, but it's just a shame the paed we saw was not very knowledgeable in this area.

I now have our list and just need to go back to GP to request referral. I may write now though......I can put down everything on paper and not get sidetracked!

Hi ele, sounds like you are going through what we have experienced in the last few months with our 5 year old who started ticcing just over a year ago. We got GP referral to CAMHS and 4 months later were still waiting so we used private medical insurance cover for a diagnostic consult with a paed neuro psychiatrist and approached one of the insurers' listed consultants. At that stage ds was 11 months into his tics (and ocd co morbidity), anxious and losing self esteem by the day. He wanted to be"fixed" and I was beside myself with worry.

Consultant verbally diagnosed tourettes based on the case history I provided (despite being 1 month away from the technical year bar for diagnosis) but did not want to commit to paper in case it worked against him re education/public perception since he is currently on the mild end of the spectrum and no SEN necessary or medication at this time. She diagnosed chronic tic disorder on paper and told me that down the line if I needed a straight Tourettes diagnosis for any reason and his symptoms were unchanged that she would confirm that.

We finally got the follow up call from CAMHS last week and I had a long and very helpful chat with the paed psychiatrist there who specialises in tic disorders including Tourettes. Turns out it is a very small world of consultants with an interest in the field and the good ones have all had the same habit reversal therapy training etc from the same source. Since we already had the diagnosis, CAMHS left it up to me to decide what to do next. They offer 6 sessions with the neuro psych and then reevaluate the child to see whether they need further help. If not at that time, then the child is discharged and has to reapply through the GP referral process again. Obviously this system is really badly suited to the wax/wane cycle of Tourettes...

Do you mind if I ask why you are seeking the diagnosis? The biggest issue I encountered in trying to find help for ds is that even with the diagnosis it didn't change the prognosis or management of the condition :-(.

Anyone on this thread still use this site?

Would like to hat with someone about tourettes and these posts sounds very useful. Pm me

Thank you