VNS to be fitted next monday - had a meeting with the surgeon the other day and sounds fairly straighforward but didn't know there were so many risks!

Can't say i'm looking forward to this

Hi Andy,
I hope it all goes well for your little one next week.
You must be really stressed and the very thought of it.
Please let us know how he gets on
Thinking of you all
Carolann

Hi Andy

I hope it all goes well for the wee man.I've been talking to a 25yr old who has a vns fitted so if u need to know anything else let me know.

Well Ethan was 7 a couple of weeks back and his VNS is gradually being turned up since the operation in March.

Had a real bumpy ride again recently with his behaviour to his mother being a bit of a nightmare in terms of aggression. Strangely - still not as bad as me but had an episode in a shop the other day with swearing, spitting etc.

Its still tough being a parent with a kid who has so many medical issues and don't get any easier - being on my own with him again is tough as well as I don't have my (ex) partner to bounce stuff off as often though I still have her to speak to when needed.

Think my split and worries about the wee man have taken its toll on me in the last year though I'm coming out the other side - although the wee man is really the only thing that keeps me going in life - i do sometimes still finding myself looking up to the sky and asking "how on earth did this happen to my precious wee lad - why us?"

Thinking of getting a dog for us to give us both another focus in life.

Does anyone keep a diary of their life - i've kept one for the last wee while and pretty sure i could write a book about my experiences with TS, Autism and Epilepsy!!!!

hello, i'm a mother of a 9 year old lad with ts and loads of other problems, i have recently read a book called OLLIE by STEVEN VENABLES it's a book a father wrote about his son who was extremely autistic and battled with cancer twice, the book has inspired me to make notes on my own sons life as perhaps one day i will write a book,
it has also taught me how to cope more and to make the most of the poor hand we've been dealt as a family, and to face up to whatever challenge may be thrown at us next, quite inspiring, i would strongly reccommend reading it if your thinking of writing your own,
take care
michele x

Well folks for the first time in my life i think i've hit a low. Its always easy to say how good it is to be a parent (and it really is - a priviledge) but is there really anything to say that is positive about TS? My wee lad has went through hell and back over the years when i think about it - Ts leading to epilepsy leading to autism - what sort of life is that for a boy of 7 years old with a mental age of about 3?

Ethan is the apple of my eye - my golden child - but what happens if i'm not here? Can anyone really say anything positive about TS and the stuff that comes with it?

I think I was here at the start of the forum but to be honest i've kinda lost my way with a lot of the medical talk on here (which is very valuable so I'm not by any means denigrating it or minimising its importance) but despite being an infrequent poster over the last few months - i'm off for a while. I wish everyone the best on here but I think i need to gather my thoughts and work out how i'm gonna get into ethan's head for the good of the both of us after watching his seizures spiral out of control, his aggression hit (hopefully) its peak and figure out how i can get my little boy back.

Good luck all........................