You are not logged in.
If anyone has had experiance they can share regarding any different types of therapies rather than all of these medications out now I am sure we would benefit from listening.
I am awaiting a book from Amazon which is all about alternative treatments - once I have had a read I will do a review!!
lyn xx
Offline
Hi lynette!!!!
Hi there I have finally managed to login here, Its brilliant what you have set up and very useful.
Wel not sure how much you remember from the tourrettes syndrome user group forum, but Kiran 8 years old takes homeopathic remedies and sees a cranial osteopath which seems to help calm him and maintain his vocal,body tics. He has been using this method ever since TS was diagnosed two years ago. I am extremly pleased with this therapy and will alter if ever his tics worsened. We are currently waiting to see Dr Mary robertson as St Georges' nHS. I really wanted to see if they could offer some sort or councelling/therapy session for Kiran for him to voice any concerns he may have. We shall see..
Sangeeta xxx
Offline
HI Lynette
Also as I am training to become a Reflexologists- I have tried this on Kiran and it has a calming effect whilst generally unblocking any blokages in his body by putting pressure to various parts of the body on the soles of his feet. Not sure you have heard of this but its a gentle pressure massage to his feet and you can work more around the brain/head area to aid relaxation and calmness.
Sangeeta
xxx
Offline
Hi Sangeeta
I was going to take Ben to see a Cranial guy but really didnt like him very much. But maybe I have to put that aside and try again.
The SEN teacher at school suggested the reflexology so I may consider that too.
theresa
x
Offline
Hi Lynette
How you are well?
We have an appointment at st georges on 3 Sept. What do you think I should expect? We've been told its an hour long. I'm not sure what to expect but will go with an open mind.
As I mentioned before I want to see if there is any option for Kiran to speak to someone about how he feels if he doesnt' wich to talk to me as often the case may be.... I want to be able to let me talk about his felings and not bottle them up. Who know we shall see see.
The other alternative therapies that I have taken to are cranial osteopathy and homeopthy. I am very pleased with these options. Obviously if Kiran tics got worse I will consider medication only if really necessary as from what i have read there is NO such drug that will rid the tics themselves and they usually wax and wane so its about managing during the tough times.
Will check back soon
Regards
Sangeeta
Offline
Hello Sangetta
Our appointment with Joe and Ben was approx 4 hours from start to finish. Quite child unfriendly I would say. Take plenty for Kiran to do as there is no 'childrens corner' - no books or toys to play with.
The diagnosis is very thorough and loads and loads of questions. We didnt ask many questions as it was so long and intensive that we were glad to get away in the end for the boys sake they were climbing the walls, literally!!!
Dont be put off though - just be prepared. Its well worth it.
We are looking forward to our next appointment as we will go armed with some questions of our own, and we want to discuss the pros and cons of meds.
Good luck
Theresa
Offline
Yes Sangeeta - listen to Theresa, I could not agree more!!!!!!!!!!!! I would be interested in knowing when you go whether Prof R mentions the website Sam W as she has promised to do when new families come through her door????? She semed very keen to promote it as the site would help her out as much as the family!!
There is a great cafe near the entrance to the hospital which sells lovely sandwiches at rerasonable prices. Parking is expensive, we went by train and got a taxi - £7 for the taxi.
You will learn a lot so good luck!!!!!!!!!!!!!!
lyn xx
Offline
Hi theresa
Are you saying we will be there for 4 hours?? I was told the consultation will be an hour. What do they do in the 4 hours your there for?? Do they always recomend medcation? Do they talk to the child? Anything I may expect.... Please let me know....
Hope your both doing well and kids are not too much of a handful.
Regards
Sangeeta
xxx
Offline
Hi Sangeeta
Our appointment may have been a bit longer because they saw both boys at once. But we walked into the room and were faced with 6/7 professionals sat in a semi circle quite obviously observing the boys. Some questions were asked with them in the room and they were asked some questions too and then they were taken out of the room by themselves with 2 doctors. I am not totally sure what happened whilst they were away from the room but I think they were asked how they feel about things etc.
I think on the one hand it is a good experience because you are being diagnosed by the right people. On the other hand Im not sure it was a good experience for the boys. Although they have never said anything much about it and they are not concerned about going back. The only thing Ben said was that all the talking about tics made him feel like he needed to do some. And he did have a bad period of a few weeks following that.
Might have been a co-incidence but I dont think so.
They didnt discuss Meds at the first meeting they simply said that meds were not needed at that time. We want to discuss this with them the next time we go because Bens problems have been at their worst the since April (only settled about 3 weeks ago) and the CAMHS pyschiatrist advised us to discuss it and see what options we have should Ben go through another really bad patch.
There was a very nice child psychologist there Lisa Davies who took one of the boys off so hopefully the format will be the same, in which case Kiran will be able to talk to her or another doctor
Please dont be put off though, just be prepared. But I do think it will take longer than an hour, its a very thorough diagnoses.
Theresa
x
Offline
Hi Sangeeta - When we took Sam up our app was for 11am and we finally finished at 3pm!!! Ther a lot of forms to fill in and we were with Prof R for nearly 2 hours!!
It is worth it though and the diagnosis on paper goes along way with local authorities if you need support in the futire.
lyn xx
Offline
Do children who suffer from TS get any disablity allowance of any kind?
Sangeeta
xx
Offline
Hi Sangeeta
Interesting question, I have no idea but would be very interested in the answer.
Theresa
x
Offline
Hi Sangeeta - http://www.direct.gov.uk/en/DisabledPeo … G_10039695 - This explains abit about young adults, it might help you.
lyn xx
Offline
hi all, i see sangeeta uses cranial therapy on her son and i wondered if it was more effective than just getting some massages booked for my son?
Also my son gets disability allowance for his tourettes, we applied about 5 months ago and were awarded it without any problems(but they did write to his consultant). Like Sangeeta, im now concentrating on Jacks mental health/wellbeing and am very interested in any natural remedies that could help Jack, including massage etc or any calming homeopathic that can run alongside his Clonidine??
Offline
Samuel's World