DS1 is twitching a lot

[Hughsie]

Have worried about this for some time but have just returned from a two day business trip and the realisation that ds1 is different hit me very hard on my return. We have consulted a psychologist who suggested we see how it goes and come back if worried...of course we are worried! He seems able to suppress the tic during the day at school but when he is home he is twitching badly, raising his legs backwards like he needs the loo which has caused him to fall over of the way home, clenching his fists, blinking and tensing up generally. I try not to question him too much on it but if i say are your legs ok? he just quickly dismisses it saying 'I'm fine' or it's alright mummy'. I am worried that it may be the beginning of tourettes having looked on the website and he does have slightly obsessional tendancies like alwyas needing to be first and if things aren't in the right order and routine like he can become hysterical.

i really want to believe it is a phase he will grow out of but wonmdered if other mums have experienced this? I feel scared to discuss it with his friends parents as they may think he is wierd? I love him dearly and just want him to be accepted in his social lie which I think he is but worry that if they witnessed his relaxed habits they may be critical. he has always displyed extreme behaviour since birth really when he was always anxious and on the go.

PLEASE help me as I need to know what other mums have experienced.

Have told the school but they say he is not doing it much there which upsets me in a different way as it must take a supreme effort on his part to overcome it which may be why it is so pronounced at home.

Bump

Mumtochloe - what does bump mean?

bumping means getting a thread back up into active conversations, so more people will see it!

Like bouncing the message back to the top so someone else might see it. Can't really help Hughsie but would feel inclined to push for some more professional advice. If you feel that something is not right with DS then push and push for some help, even if only to put your mind at rest. Good luck.

See your HV or GP and ask for a referral. I think as a mother you know your child best. This doesn't mean I think it is necessarily bad or serious, just that you clearly do and are worrying youself sick over it. Good luck.

How old is your ds Hughsie? And how long have you noticed him ticcing? Apparently Tourettes can only be diagnosed if there is a history of vocal (i.e squeaking, clearing throat etc)and motor tics which have been on and off for over a year- might even be two years.

I know its difficult to watch your child go through this. My ds1 was diagnosed almost a year ago. The only reassuring thing for me is that I know each tic will only last at the most 2 or 3 months but sometimes only a couple of days. Then he may have a lull in symptoms for anything up to 4 months or so.

Apparently, a lot of kids have a transient tic disorder which may last up to a year and then disappears.

My ds also suppresses at school and yes, it can take a lot of effort and concentration. When he's home from school he then tics continuously for a little while, releasing them all I presume.

We usually ignore ds1's tics, but it was very difficult to ignore his squeak!!

To diagnose Tourettes tics need to have been present for at least a year IIRC. My son has Tourettes I think (he's autistic so there's no point in dxing it separately). I find his tics are worse when tired, or after eating something dodgy (there's a lot of foods he can't tolerate).

My son's tics also tend to be worse at home, but I think partly its because its worse when he's unoccurpied. Because he's kept continualy busy at school they are supressed, but then when he gets home he's tired and it all comes out.

I'd ask for a referal to a clinical psychologist (was the psych you saw clinical- go back if you think they are any good) or peadiatrician.

I have not posted for almost a year about this and apologise for the responses I had at the time for not posting. It was a bad time and we ended up taking him to a cranial osteopath who seems to have helped alleviate the worst symptoms ( or perhaps they would have faded anyway) However, the tics are back (same time of year?) to a severe nature around head and shoulders and back arching. Still going to the cranial osteopath and she tells me that his head shape has improved after her manipulation which would have contributed to the tics. Have just bought an internet book suggesting that it may be attributable to diet so that is the next plan.

He is otherwise ok and excelling at school with reading and writing which I thought may be a sign of autisctic tendancies or merely another trait of tourettes children. it is so difficult to maintain happy thoughts when I am paranoid that people are staring at him or other mums think he is weird - makes me want to move to a desert island.

How are you triplethefun?

Hughsie,

Just wondering how you are doing and whether you have implemented any of the diet advice from the internet book?

Would be very interested in how things go for you. Good luck.

Hi Hughsie, haven't been on for a while.

Sorry to hear your ds is ticcing again. It can be the reaction of others thats hard to take. Even now 2 years or so after diagnosis there are only a couple of people who know ds1 has tourettes - my mum and my best friend. I've never told my dad, sisters, brother, husbands family, even ds1 doesnt know (rightly or wrongly). How old is your ds?

I only ask because my ds1 was at his worst with his tics when he was 7/8 years old. He had a similar pattern with his tics starting around October and lasting a couple of months. I put this down to the stress of a new school year with a new teacher. this pattern continued through school years 3, 4 and 5. His tics last October also coincided with his grandad dying, they literally started within a couple of days and lasted about a month.

Now he's in year 6 and so far he hasnt displayed any obvious tics. Or at least any that anyone else would notice.

He has become a little obsessed with ghosts in the house. Not sure if this is related to tourettes or not. He literally runs with quick glances over his shoulder when he moves from room 2 room. Scares himself to death thinking he's seen or heard something.

Hang in there and let me know if you notice any change thru diet, that would be interesting.

Know this is nothing to do with with tics etc. but my DS1 has a stammer (he is 8) and it is the reaction from others that I find really difficult to deal with. We went into a shoe shop in the summer and he was really bad, just wanted to say to the lady, 'look he has a stammer ok, just be patient and he will explain what he needs to' it is heart breaking sometimes. Just wanted you to know you are not alone, whatever the problem
XX

Hello - not been on for ages hence no response - sorry! DS1 had a couple of tic free months but has just had a two week block of shoulder ticcing that is very noticeable. He is always readjusting his clothes on his shoulder and tugging at his neckline. He was slightly better yesterday so I am hopeful that returning to school this morning wont be too bad although I did have a quick word with his teacher to ask her to ignore it if possible. We have pretty much hidden ourselves away over the holidays to avoid awkward questions. It is such a rollercoaster. The diet thing was really difficult to impose - wheat and dairy are in so many things and that fact that he had tic free months made me doubt it would help anyway. i felt terrible taking away his favourite foods on top of what he is going through. He has described it as ' my stupid body' and 'my brain is too busy'. Children can be so unkind that I am dreading them picking on him - one day at a time. Not sure formal diagnsis would help though - we are fairly sure it is TS and would not really want medication due to side effects - am I been naive about that? I suspect it will depend on severity and frequency of tics but may revisit the diet as a first try.

Triplethefun. I read your post with interest and would love to hear from you about your situation. I really feel quite isolated as it is such a taboo subject and difficult to find people in a similar situation. I do not think you have posted since the contact on this thread so do hope you do again in the future.

Hi Hughsie, you can contact another mumsnetter by following the link at the top of the page (blue band). HTH.