Experience with tourettes?

[SpecialNeedsCosimSpecial]

I have 2 dc with Tourettes. Sometimes its just nice to talk with others who have been there. In particular i am interested in how you or your dc manages/ed academically. DS2 struggles particularly with Maths, after a lot of research it seemS sufferers do have a learning difficulty associated with Maths and general non verbal reasoning?? all the Tourettes threads are very old, so look forward to starting new conversations.

I don't have Tourettes - despite the fact it runs in the family. I am probably on the impulsive side, though.

The other thing that seems to matter is predisposition to allergies. Initially that's what the Drs blamed - rather than my family history. My husband's family are atopic, and my affected children are highly allergic to different things.

The geneticist we saw said Tourettes could manifest in different ways - and just show as severe anxiety/ Obsessional symtpoms/ ADD.

I think plenty of people with Tourettes do do well. It's important to play to their strengths, though.

My DD excels at English, and DS is great at lots of things - and is a natural at the drums

Interesting about allergies. ds2 has severe grass allergy. Both sides are prone to hayfever.

If you google histaminergic system and Tourettes it's something about the production or metabolism of Histamine. Which obviously relates to allergies.

My DS has severe hay fever too, I tell people his throat starts to close - I don't think they believe me. But he does have an epi-pen. Other allergies are to animal fur esp horses.
DD has a high level of allergy to peanuts

This is all so interesting. Sorry if i sound a bit silly but didn't realise TS could present in different ways i.e OCD on its own etc, i thought offspring would automatically inherit the whole lot. We don't have any allergies on either side although dh has hayfever which he developed as an adult.

DS is fantastic at English, and writes the most amazing stories, he is also very musical and fab at Art. but its like there is a brick wall where maths is concerned.

If you have a dc with TS and other co morbidities how do you manage?

I don't think so - my dad possibly had it - my aunt said he had Sydenham's chorea as a teenager which could have been Tourettes. Out of 6 of us, only one definitely ticced as a child - and not so bad as you'd medicate. My other brother seems to have one tic.

I never realised Tourettes was in the family till it exploded on us 3/4 years ago.

Sorry - just re read your post.

I don't think it would be diagnosed as Tourettes if it purely presented as something like OCB.

The criteria for diagnosing Tourettes are very clear - something like having multiple motor tics and at least one vocal tic over the period of a year.

It's a recognition that within your family different kids might have a range of problems - even though they don't have Tourettes.

With co morbidity I guess you just have to get on with it. Interestingly I've read that the prognosis can be better if there's co morbid problems like ADHD/OCB rather than pure tics.

I don't think the Drs really know, as I think people learn to get good at hiding tics in public.

Have you had your child assessed by an Ed Psych. Maybe there's a separate problem. If it's identified as dyscalculia - more of a description rather than anything - they could be entitled to extra help.

If it's any comfort - my eldest has dyspraxia and doesn't get Maths either. But he's worked hard and got a B in his Higher Maths (Scotland - between GCSE and A Level).

Yes we've had him assessed, average IQ no learning difficulties. He knows all his times tables was in top sets for that up to yr3, then as soon as problem solving started he just started dropping. He has no problems reading or identifying letters or numbers, but something just doesn't seem to be clicking into place. His memory seems very poor also, he will do e.g fractions today get everything right, good understanding, 3 weeks later if he has work on fractions he can't make sense of it, its like he's seeing it for the first time.

He also doesn't seem able to apply mathematical concepts to different scenarios, its so frustrating. He has extra learning support for maths, and more one to one over the weekend, but none of it seems to have helped.

Can you review the meds?
Clonidine is quite an old drug to use and would possibly have more side effects. Think Risperidone and Aripriprazole are first line these days. Both of mine have tolerated Risperidone well, but my DD had side effects to Aripriprazole.

I was worried about DD starting Ritalin, because it can definitely exacerbate tics - but it's been the best thing. I was trying to do Chemistry with her before it started and the confusion in her brain was just so obvious. Her marks have gone right up recently. She is also revising more, but now she can focus to revise.

We were recommended Clonidine by CAMHS, we weren't aware there were other better ones on the market. The side effects have been horrendous, we decided to take him off it after 6 weeks and will now increase his dose of Concerta which was working well for him. I think the increase in tics had nothing to do with the concerts but more to do with his tics possibly peaking at his age. ds is 11 and i understand they usually peak between ages 10-12yrs.

Can you ask?
I know this is only my advice, and not that of a Professional. Currently it seems the evidence base is that Risperidone is first line, then Aripriprazole. Both are newer drugs.

They do have the potential for serious side effects, but my kids could not function without them.

We were only offered Clonidine when DD developed Dystonia on Aripriprazole.

We've actually decided to just leave him on Concerta for now and see how that goes and also to give his body a rest. If the tics remain stable we would rather not medicate for it again, this time was so unsettling.