Not sure how i feel.....................

[dizzy34]

Hi everyone, we have just got back from NYC today and went more or less from the airport to the childrens hospital for the appt with ds neuro. We had a really good meeting with the neuro, but whilst we were there one thing we found out that ds life expectancy is 10yrs at the most, depending on how many seizures he has could be earlier (currently between 15-50 on good day). Also found out that he is high risk of SUDEP which is sudden unexpected death from epilepsy, basically cot death. I say 'just found out', but to be honest i think i always knew. its hit home more hard cos friends little one passed away over xmas. So im not sure how i feel, not thinking about it too much, but cant get it off my mind if you know what i mean. i thought that writing it on here might help

I don't know what to say, dizzy. I can't even begin to imagine how hearing that must feel.

Dizzy, I hope something helps. I really do. I can't say anything. I am so sorry.

So sorry to hear this.

Thanks, its really thoughtful that you have all posted replies, i know that nothing will make me feel better really......i know that everyone on here has sn children and its good to be able to talk to people who understand the day to day problems

Dizzy, please post as much as you want. I'm so sorry to hear that. Wishing you strength and love x

Sorry to hear this Dizzy.

sorry for you and your family dizzy

dizzy, I am so sorry. I can't begin to imagine how you cope with this. I don't know if it's the same type of epilepsy, but one of our neighbours' son was given a similar prognosis. He is now in his mid-teens, and although he has brain damage he clearly gets quite a lot out of life and seems to have stabilised to some extent. Not much comfort though, I know.

Dizzy, thinking of you and your family x

oh dizzy ((((((hugs))))))) Its always hard hearing it straight, even if you have always known. Give your little man a kiss from me. xxxx

Oh dear, I'm so sorry to hear this dizzy

Oh Dizzy, that is so hard. I'm so sorry. Lots of love and hugsXXXX

Dizzy - My heart really goes out to you and your family
Lots of love and hugs Blossom xxxxxx

I am so sorry Dizzy Thinking of you and yor family.

I am really sorry Dizzy.

Hi dizzy. My dd also has a limited life expectancy (because of her seizures) so I know a little of how you are feeling though it hasn't been spelled out to me so clearly (and I am too much of a coward to ask).

It is an awful awful thing to have to deal with as a parent.

The thing I take comfort in (or the reason I bury my head in the sand about it) is that at the end of the day no-one really knows what the child's life expectancy will be - there are always those who defy expectation. And also that they are making advances in medicine and seizure control all the time and who knows what may happen.

It is hard though and my heart goes out to you.

Feel free to CAT me if you like.

(Hope you had a good time in NY.)

Dizzy - you are in my thoughts and prayers

Sos orry dizzy Thinking of you{{{hugs}}}