Sensory stuff to encourage use of left side... Any ideas?

[CocoDeBearisCocoDeBear]

My DD2 is coming up to 12 months. She has a left-sided weakness (CP), and I'm not sure how much sensation she has in her left arm. She's not seen OT yet, but our physio has said to massage her arm/leg to help give her the opportunity to restore function, if that is at all possible.

Christmas and her birthday are coming up. Does anyone have any ideas of sensory/tactile-type toys that might help her hand/arm to develop?

[CocoDeBearisCocoDeBear]

Re portage, we have been referred to an org called Kids, who are coming to the house to do an hour's play-based learning with DD2. Does this sound like the same thing?

[Jenkeywoo]

Coco, kids does sound like portage, I'm sure it will be really good for dd. I asked to be referred for portage but was told we don't fit thr criteria locally as the child must be developmentally delayed and have learning difficulties. I guess it varies from area to area.

[heartinthecountry]

r3dh3d - my dd has left side weakness. When she was little I was told by the physio to 'push her over' gently etc in order to get her to put down her left hand to save herself. Can't see anything wrong with what you are doing.

As she would always use her right hand to play, I was also told to always put toys on her left hand side and try and encourage her to prop on her left hand as she lent over to play with her right if that makes sense.

My dd1 is now 5 and to be honest you hardly notice now that her left side is weak.

[mymatemax]

same here r3dh3d, We were told to push ds over to try & improve his reflexes (he has CP Spastic diplegia - Obviously it wasn't off the end of a pier or anything - just on to cushions
He also had a slight right sided weakness if & we had to hold his left arm down to force him to use his right etc.

[mobileslostisitinthefreezer]

Well that just shows how all physios are different, we were told NOT to force our ds who has Spastic Diplegia (CP) with right sided body weekness to use his right side, we were also told to only do the physio we were shown and not to force him in anyway.
My son also has learning difficulties, and his physio has been one of my best friends for the last 30 years, (he is 8 BTW) so I am sure as sure can be that she would give me the best and most appropriate advice she knows.

[CocoDeBearisCocoDeBear]

oooh, heartinthecountry, I posted about my DD a few months ago (neonatal seizures/hemi) and you replied... but I didn't see your reply for days... but I think you're not far from me, in SE London somewhere? I was hoping to run into you again on the SN board. Did your DD have seizures as a newborn?

[heartinthecountry]

Hi Coco - yes I am in SE London (Greenwich borough). Whereabouts are you?

My dd1 started having seizures (IS) when she was 4 months old.

[CocoDeBearisCocoDeBear]

Hiya HITC, I posted under another name about possible microcephaly and CP, that was the thread.

I'm in SE22.

How is your DD? I'd be very interested to hear about how you've coped and so on as it's been a horribly shocking time for us as a family. When did you find out about your DD's hemi?

My DD's been seizure free for 10 months (ie since a week old), and is now off meds.

[heartinthecountry]

Ah yes, I remember the thread. Can't remember what I wrote though!

My dd1 has a rare syndrome known as Aicardi's. We got her diagnosis very soon after we started seeing seizures as the syndrome has very specific and obvious (under MRI) brain abnormalities. So in a way, we knew about her condition before we knew how it would affect her, including her left side weakness. Though that was apparent quite early on.

I would say it sounds positive that your dd has been seizure free and is off meds.
As to how I've coped. Hmmm, I could write pages and pages about how I have and I haven't really.

I think i was in shock/semi-denial for at least the first 6-12 months. I've had ups and downs. When dd1 is doing well I am generally more able to be 'up'. When she has a lot of seizures it can be hard. Or if her 'behaviours' get tricky.

I think the main thing is I try not to look too far ahead. If I think about the future scenario of looking after a 16 year old hormonal teenager with LD i feel quite panicked. If I worry that her seizures could get worse I feel sick to my stomach. So I try and just deal with how she is today. Because I think that you just don't know what you can deal with until you get there and often the thought of it is so much worse than the reality. If I had been told when dd1 was a year old that she still wouldn't have been walking independently at 5 years I would have felt very sad and wondered how I would cope. The reality is that is just how it is, just who she is.

Does that make sense? sorry, bit of a ramble. I am more than happy to talk on email or even meet up if you would like. Your dd is possibly very different to my dd1, but I think the experience of being the parent of child with disabilities can be very similar.

If you look here www.aicardisyndrome.org/index.php?pname=meetus/pages&fname=Willow-Bush

you can see my dd1's story (written several years ago now and some of it makes me cringe a bit!) and there is a way to contact me at the bottom which means you don't have to CAT and my email address isn't visible.

[CocoDeBearisCocoDeBear]

Oh, what a beautiful little girl!

I am CRYING!

I will e-mail you.