epilepsy surgery

[lilesMom]

Anyone gone for testing to see if son or daughter eligible for it?
Or anyone with a child who had it done please
We r starting tests to see if suitable in April
Thanks x

 

[superfrizbee]

Hi hun, I've been thinking about you but not caught up. I hope you're OK? How is Simon doing? Sorry his epilepsy still isn't controlled. I don't know if you're on Facebook but I'm a member of two hemi support groups - hemihelp and parents hemi chat. They're really nice, supportive groups (closed and totally private) with lots of knowledge and information to be shared. You have to request access. I know there are people on those groups whose kids have gone through this op and they might be able to answer your questions. X

 

[lilesMom]

Hey
Thanks hon
We r good thanks.
How ye doin? Xxx
This forum is quiet enough on the special needs side.
I've joined cp ireland group on fb
But everyone varies a lot.
Might look up ur ones thanks xx

Hope ye r well xx
How are alistairs therapies going x

 

[superfrizbee]

They're good because they are specifically for hemiplegia and parents hemi chat especially for parents (clues in the name! Lol!).

Alistair is doing really well. Physio still ongoing and we have an NHS block of occupational therapy coming up for a week, plus a private block for 3 weeks intensive cimt in May. How is Simon doing? Xx

 

[lilesMom]

Glad he is doing so well xxx

Our therapies hve gone a bit scant
The appointments are getting scarcer
And hve been waiting on afos for minths
His current physio is a bit sucky
We r being transferred to a different centre
I'm hopeful it will be better for him

Overall though he us doing well
Started bum shuffling a few weeks ago
He is sooo much happier now he can move about hinself
He is a happy cuddly little boy
His progress has been slow enough
Largely cos of epilepsy setting him back
But its all still progress.
Speed doesn't matter ��
Glad ye r doing well xxx
Thanks for posting xxx

 

[superfrizbee]

I really hope they find a way of controlling his epilepsy soon so you both can enjoy each other all the more and celebrate all of his milestones to come. That's great that he has found a way to get mobile! I hope you get your therapists sorted out soon too - how frustrating. We have been very lucky so far with ours. Our physio is leaving soon but we are going to keep seeing her privately because she is soooo good. At least he has you, and if he's happy that's what matters and it's all down to you. There's lots of inspirational posts on those Facebook posts from both kids and adults with hemi, but don't get me wrong some of them make harder reading too. Xxx

 

[lilesMom]

I'll keep him happy and as healthy as I xan
That's all any mom can do.
He is the best little boy
He is a real mommas boy ��
Hee hee.
Glad ur therapists are great xx
We had great luck in our firstyear
But to he honest the care he is getting from them has slipped a lot.
His brilliant salt left,
Replacement is lovely
But there are only two of them now
And there used to be 4

His OT is brilliant

His physio is good but lazy and forgetful
She keeps promising us stuff and not deluvering
Very frustrating
Cos the ideas she comes up with
And her promises are good
But no good ifwe don't get them!!
��
Ranting over ��
Transferring soon
And I'm thinking its gonna be good for him
But yet to meet the new team
My friend works in the centre though as music therapist
And is full of praise ��

Hows Freya doing?
And last but not least
How are you ��