GP thinks DS has Tourettes......WWYD?

[elephantpoo]

Hi, thanks for opening this thread.
DS (6) has had some challenging aspects to his personality for as long as I can remember. I have posted on here before re. possible Aspergers syndrome and to cut a long story short I went to our GP to ask for a referral, GP (who has a son in DS's class) had DS over to play with her son, GP said DS is fine, went back to GP, got emotional, admitted I felt down (due to DS problems and other stuff going on), DX with depression and then made to feel that DS's behaviour is down to my mood.
I am feeling a lot better now, and feel my mission is to get the appropriate advice re. DS.
ATM his main issue is an uncontrollable eye rolling and simultaneous head twitch. I went to a different GP when DS was so bad that he could barely keep his head still long enough to eat a mouthful of food :( He was very distressed by it.......heartbreaking :(
She took a note of his symptoms and sent us away so she could look into it further.
She called last week to say she thinks it's Tourettes. She can refer DS straight away (to whom I don't know), but my initial decision was to leave it for a while longer, so we can monitor him and better describe what's going on to whoever we see.
Now I'm thinking we should speak to somebody....we have so many questions.
She said we may be able to go without DS-would that be best? I'm so confused as to what to do.....any input greatly received :)

Hello and sorry you are going through such a worrying time. I would get your DS referred straightaway, as in some areas it can be several months wait to see a paediatrician or a psychologist, and even then that may be a preliminary appointment rather than immediate diagnosis. Bear in mind that there can be a big crossover between Aspergers/Tourettes/ADHD/Dyspraxia etc, so he may have traits of more than one at a time iyswim.

In terms of going to a specialist - there may be a chance for you to speak to the doctor without your DS in the room either at first appointment or later down the line, but to accurately diagnose him they really do need to see him, how he communicates/behaves etc.

If I were you I would go straight into referral.....it's a place to start and also to raise other questions and ask about any other assessments...no specialist will work alone so therefore the information from you and any observations made can be referred on....be prepared to play a lengthy waiting game...nothing happens fast so I'd recommend you get into the system sooner rather than wait..

Keep pushing on every question and concern, keep a diary/record daily of everything..diet, sleeping, toileting (if you can), behaviour, etc, it can help to uncover any triggers, patterns of area's that are more difficult and how they manifest, all contacts and concerns the school raise with you as they may not document everything...it will build a picture and helps you to convey things in a encompassing way....make copies to take with you to any appointments, highlighting your greatest concerns and area's of issue

You can research alot of things and find lots of idea's to try but until you have any Dx you won't know the best way forward in helping and supporting your DC either....

Thanks for your replies.
I'm going to keep a record, but also go back to GP and ask for referral.
He's def worse when he's tired / stressed / excited......but beyond that no other triggers stand out.
Thanks again :)

Hi :) Get him referred asap as like someone said waiting times can be long.

For a dx of Tourettes the tics must be happening for 6 to 12 months. On and off is fine.

Do keep a diary for anything tic wise or anything that concerns you. Another thing I did was to record the tics when they were happening (DS was unaware). I used my phone but you can get small video cameras to do this.

DS has upper motor and vocal tics. However I was glad of the videos to take to the assessment as he was holding it together on the day and so it would have been difficult for anyone to dx at the time.

Thank you :)
He's had these current tics for about 8 months, and before that he had a tic, that looked like a body builder pose but with his hands pointing down not up, for several months.
When asked why he started doing the thing with his eyes, he said it's so he then doesn't have to do the thing with his arms :(
I don't think he'll be able so suppress it when we do see somebody.....he does it constantly, to varying degrees. I will try and get some film of the more distressing times, when it's really bad.
Thanks again :)

It will be ok :)

DS has the eye rolling tic for weeks on end and has a permanent throat clearing tic. His reason for his eyes was that he said they itched and hurt unless he did it. His worst ones are a high pitched scream or a roar out of nowhere which thank goodness are not consistent and only when extremely overloaded or tired.

The secret is dont discuss or point it out or ask him to supress it. Change track and do something else to occupy him as best you can. Tell them at school not to comment on it either as it just makes the child more concious and makes them worse.

Fortunately with DS he is not bothered as we make no emphasis on it and I have given my rath to anyone who does

I think having a GP who is also a family friend is a potential minefield, and for everyone's benefit it's worth getting a second opinion sooner rather than later.

Personally I'd take the referral anyway, on the basis that with the impending NHS cuts a proper assessment might not be on offer next year. And meanwhile I'd have a chat with one of the other doctors at the practice cos otherwise I'd be in a right state whilst waiting for the appointment.

My Ds who has just received a dx ASD had tics for a couple of years on and off head shaking throat clearing and eye blinking. He would have one of those and it stayed for a couple of months. Then nothing then another one and so on. He has not has dx of Tourette's but he has been clear of these for a few months so I'm not perusing it but if it troubles him badly again I would take him back to the GP. He had the head shaking one so bad that just like your Ds he couldn't eatso I know how upsetting it is to see. Keep a diary and video if you can. Good luck