So today i took ds2 for his botox review

[lou33]

He had his first lot on march 8th. There has been some improvement, but although he is able to straighten his legs more, he still doesnt have any independent standing ability, so the only time he can stand is in his gaiters and standing frame.

Anyway we went along to see the consultant this morning. He checked him over and says in his opinion another course of botox will not be much use , and he wants to refer ds2 to Oxford for a second opinion wrt to have surgery to lengthen his hamstrings

Depending on what type of op they wish to perform, it will be done either in surrey or oxford.

I know they need to do the best for him but i am pretty gutted.

bump

Hi lou33

How old is your ds2? My ds1 has cp in the form of a severe right sided hemiplegia. He is 5 now and spent a very long time in standing frames and the like to improve his standing balance. He is now darting around everywhere . He has never had to have botox. You sound like you are going through it at the moment. It is really frightening isn't it when the mention of surgery rears its ugly head. Be strong, the rollercoaster ride will gradually steady out and hopefully your ds2 will get the help he needs to be able to stand and walk.

Good luck to your ds2 whatever is decided

he is 6, he has spastic diplegia cp

i dont think they are entirely sure if he will ever stand and walk tbh, in an earlier appointment they told me he was the kind of boy who will have a very full life in a wheelchair

thanks for replying

It is just a question of weighing up the odds on whether or not to go ahead with such surgery isn't it?. I know that no specialist ever tells you for definite whether your child will ever walk or not, but if the odds are stronger that he will walk then maybe it is worth it. Personally, if it was so uncertain, I would not go ahead with surgery. There is a little girl in my ds1's mainstream school in a wheelchair. She has cp and cannot walk. She is bright, funny, delightful, loving school, and accepted really well by her piers. You can put things in place to overcome physical disabilities, but its the wellbeing of the child you need to look after and make sure they are as happy and positive as they can be.

After watching the paralimpic (sp?) games over the weekend, (not saying your ds is going to turn into an olympic athlete but you know what I mean ), anything can be achieved with the right mindset.

his consultant is asking for a second opinion from a doc in oxford, i am in surrey, so i will take him along to that and see what they think before i make any decisions

i'm just feeling down because i have had so much stress recently, this is one thing i was hoping wasnt to be thought about for some time to come

Lou

No idea what you and ds2 are going through but I wanted to let you know I'm here for you.

thanks

Nothing helpful to say but .

thanks soupy

and i just bumped his head on the car door , sigh

I think I've done that with all my children. And Essbee's DD...

Lou

sorry to hear this, it must have been very disappointing for you both.

i shut him up with a finger of fudge

disappointing yes

also i dont know how i am going to manage the childcare, i used up my favours when i was sick in thailand

hopefully the op they decide on will be one his local consultant can perform, because even that will be difficult to juggle, as he will be in longer than a day case he was before

thanks dino

Hi Lou, did they explain why they didnt want to do more botox?

I the muscle are short rather than tight, it wont do anything and surgery is the only thing that will, although in some cases serial casting can help.

I know this is just another thing on top of everything else - but hopefully when you see the next specialist they will explain the options better.

And kids recover from orthopaedic surgery much quicker than most people expect.

it didnt give hte desired effect needed to get him standing independently, so they will most probably need to lengthen his muscles to enable this possibility

they might do other stuff as well wrt his ankles, but i wont know until i have seen the consultant

it's just a lot of stress for me right now, on top of so much other stuff i have going on, and i have noone to share it with, so i'm just feeling crap about it really

i'm sure he will be fine

Sorry Lou. no other advice really, but if you want to talk about it, let me know.

thank you