New mum waiting a diagnosis for our son any help/advice pls

[catherine]

https://www.facebook.com/groups/106998699383213/

They gave me risperidone at the Caludon Centre.....too much of it! That was after Haleperidol and a little visit to A&E

Dr Cavanna will give your son a through diagnosis., but the mum I met today did rate highly the care that her son is receiving at the children's hospital.

[bernadette]

Hi Finley's mum,
My son Kieran has just gone 11 in Jan. He was diagnosed Oct 2010 with complex motor tics as Tourettes Syndrome after a very bad episode in the summer of whole body ticcing that was absolutely horrendous for him and distressing for us to watch.
We were on holiday in Spain at the time and couldn't do anything but the day we arrived back home I got him straight to the G.P. Looking back now we can see that he was going through this for about 18 months previous as he was throat clearing , pulling his t shirt at the shoulders, finger clicking and various other things that we put down to habits.

He was referred to a peadiatrician at Sandwell General and quite typically on the day whenever the specialist was looking at him exhibited NO TICS. Soon as she turned away they were there !

Kieran underwent 2 EEGs and an MRI scan to rule out epilepsy/brain tumour etc and I must say the NHS were brilliant and fast doing this. The results came back as expected. No epilepsy & no tumour etc & by this time we had a pretty good idea that it was tourettes.
He was then referrred to Birmingham Childrens Hospital & his appointment was a few months away. In the meantime his tics went into overdrive and he was really suffering from head jerking which was both painful and tiring for him. What I did was, I phoned every day to see if they had any cancellations and 1 day I struck lucky and got to see the consultant the next day. I couldn't believe our luck and thought 'Yes, We are going to get sorted and everything will be 'hunkey dorey' (rose tinted glasses syndrome!).
Anyway Kieran was referred to a psychiatrist at Parkview in Moseley for hypnotherapy as they seem to have some good results with this technique but I thought this would be "hypnosis" but it is in fact relaxation which is very hard for a 10 yr old to master though I have to say he did try really hard and whilst he was there he could relax but you can only imagine how hard it is when your tics are really bad to be able to put the techniques into practice. I found that when he went to bed at night If I did the relaxation with him it did help most of the time and I must add made me feel more than ready for bed myself! He had 4 visits in all over about 3 months.

Kieran's tics got worse again (as they do wax & wane) so at the next appointment the consultant suggested trying medication especially as Kieran's head would not stop jerking and his eyes were rolling/nose twitching and fingers clicking all at the same time. I have to add that I am an holistic therapist so do try my best to take the more natural route but by this stage I am thinking that maybe meds will work for him so we gave it a try. Risperidone prescribed. Seemed to help at first but then not. Next appointment told to wean off Risperidone and start Sulpiride. Once again seemed to help a bit but then by the time he was on the doseage they wanted him to be on he was worse and seemed to be getting very, very bad tempered and aggressive so we have slowly weaned him back down and have an appointment in April to discuss what to do next.

I have been giving Kieran magnesium in the eve and I don't know whether it is that or maybe his tics are waning at the mo but he does seem a lot calmer and less ticcing although it is still there. I try to avoid as much additives as possible in his diet and I am lucky he is quite a good eater and not to finnicky!

Anyway sorry to go on but what I am trying to say is PHONE,PHONE, PHONE the hospital and ask if there are any cancellations, Tell them your son is really bad at the mo and you need help 'NOW'. I know we have been really lucky in that Kieran has been diagnosed quickly and I am totally happy that the peadiatric neurologist is really good but you have to do what's best for your son and if that means that they are saying "Flipping heck, it's that woman on the phone again" so be it!

If you can get to a support group please do. I have attended my first today at Birmingham with Catherine who has posted and can honestly say it is so good to talk with people who truly understand.

I hope you get some results soon and in the meantime I see Catherine has included the facebook link so definitely click it if you are on facebook and please ask any questions. There are others more than eager to help.

Bernie xxx

[kim cassie]

Hi Berny,

Well done to you for putting so much effort in getting that cancellation appoinment, your so right it does pay to persist with determination, you DO get results, your so right in saying it doesnt matter what they think of you, its best to do it and even get on there nerves so much, that they will indeed give you an appoinment, even if it means they give you the appoinment to get rid of you, i am not saying that is why they gave you the appoinment, i am sure they understood you were deffo in need of a appoinmnet a s a p, i remember years ago i wanted to move so i read in magasine it said ring the estate agent every day so that in the end they will tell you first of every house that is going to come on the market just to get rid of you, so thats what i did, i felt abit of a fool, but desperate mesures can and does work, so great advice berny.

we were lucky in getting our son then 8 now ten years old diagnosed quite quickly, its a real shame how it can take months and months for some people to get diagnosed, its stressfull enough, without getting the dignoses there is no support, appart from on here, its just great isnt it. take care lv kimxx

[ksj2011]

Thanks for the advice & yes we will keep on until we get an appointment, lets just see how long the wait is! I think the route of seeing a neuorologist at the children's hosp is the best way. My son was referred to CAMHS, but we just feel we want more information and help really so exploring every avenue is what we feel we need to do. As for medication, it is a scary route & when he's having a better time of it like at the moment we feel its not necessary & hope this is the way it will stay but then other times when its bad I just want to give him something to make it go away. I'm also scared that side effects may change his personality & we really don't want that, so speaking to an expert is what we feel we must do.

Berny what type of magnesium supplement are you giving your son, I'd be interested to know as we've read it can work well. At the moment we have bought some magnesium bath salts which we are adding to his bath once or twice a week again like you we have found it seams to be working & has really calmed things down a bit but I suppose this could be a coincidence. We also bought a magnesium supplement drink but he says it tastes horrible so have only tried him on this once so far.

Also does anyone know if a child's TS can peak at around the age of 7 & then gradually calm down as I have read this but also read that the norm seams to be for it to peak at around 10, does this mean Lewis still has worse to come. I find it so frustrating not knowing how bad it will get!

Thanks again

[karenpay]

Hi there magnesium bath salt - is that like epson bath salts?
Thanks x

[catherine]

It's suppossed to be worst around puberty, it started for me when I was 11,(tics I mean) I was a skinny little whimpy kid who despite being in the first year at secondary school had "mothercare" labels in her school uniform. I didn't need a bra until the second year - 28aa lol, ( a bit pointless really)and periods came at the end of the second year - still managing to just squeeze into my mothercare school skirt!
A good place to find out more about TS is read the book by Dr Cavanna and Prof Mary Robertson. I have 2 copies (or rather the west midlands support group has two copies - not yet signed, a group joke) that are available for people to borrow.
The tics calmed down in the 6th form - when I was around 17ish, stayed away throughout uni, except for a bit of blinking and sniffing, there may have been some more but I don't remember. Then.....when I was in my mid tweenties they started to return, now they're back big style with some colourful coprolalia thrown in for good measure. But, up until the 6th form I was fairly typical, text-book really.
The magnesium that I bought was just regular magnesium from Holland & Barrett, I also sometimes take omega capsules for vegetarians. I personally haven't noticed that much difference, but I have stopped eating and drinking things with aspertame in. Sweets can make me a bit weird and more ticcy than usual. However, when I was in my teens my mum made me take vitamin B6 (or could have been 12) as she reckoned I was really moody whenthere was a full moon (if you know what I mean).

[catherine]

Just to let you know ladies there is a support group meeting coming up in Birmingham soon - check out the "West Midlands Tourettes Action Support Group" thread on the main general tourette's area. Hope to see you there xxx