Advice on toys and exercises.

[scottishgal89]

My daughter has a rare form of epilepsy.
At nearly 11months old she has the development of around a 2month old.

Basically, she wont use her legs or her hands. She wont reach for a toy or hold one. She wont feel things. She also wont put ANY weight on her legs. I have tried a jumperoo but she just pulls her legs up.

Also, on her tummy she pulls up by her back and I cant get her to use her arms to push herself up and she wont pull up if i hold her hands, she doesnt tense her arms at all.

I'm really struggling with it just now.

Anyone have any advice on leg and arm exercises?
Any toys you would recommend I buy her? She has so so much but I just dont know what to do

Thanks

 

[Caezzybe]

Is there any way you could get her into physio via the paediatric team at your local hospital? My litte boy has Down's Syndrome and they are referring him for early intervention physio so I know it's available in infancy. It would be worth asking about this, as your LO deserves to have the exercises she needs. Hugs to you xxx

 

[scottishgal89]

Thanks for your answer.
My daughter has a physio.
She comes once every 3weeks and I don't feel like she evaluates her very well.
Her opinion of LO is wrong in my opinion.
She says she sees improvement each time she comes too but theres not and hasnt been for many months.
Kind of frustrating really.
LO also has a occupational therapist and early education worker

xx

 

[Caezzybe]

Perhaps you could find a book on Amazon by searching for something on gross motor skills
The book we have is aimed at Down's syndrome babies (and we have found the exercises very good), but you may find something more suited to yout LO's needs. We think Logan has been helped in muscle development and co-ordination by using a play gym and arch with dangling toys which he bats about with both hands.

 

[Caezzybe]

Perhaps you could find*oops, double posted because of being on mobile internet in car*

 

[Emmea12uk]

In my experience if you feel like you are not getting much from your Physio, then you are probably not. Ask for someone else.

Things you can do at this stage is provide a lot of stimulus for the senses. Things like swimming several times a week (if no hydrotherapy is available) or going along to mother and toddler classes with singing and sensory toys.

Cerebra are a charity set up for neuro and brain injuries and illnesses and they have a catalog of toys and equipment which you can hire for free. Someone comes out and talks to you about your needs. Well worth a go, as then you will have an endless supply of the right kind of toy for her.

I hope that helps. Are there any local disability groups you can go to ?

 

[Lottie86]

Is this Sophie's Mummy? If so :wave:

Has the physio not given you a list of exercises to do with her? If she hasn't then ask her to do so.

I'd definately recommend hydrotherapy if it is available near you as it is supposed to be really good.

Is there anything in particular that she enjoys ie music, flashing lights (if they aren't a seizure trigger for her) etc? If there is something she is interested in then use that in any way you can.

You probably already have something similar but Findlay has got this playmat which he loves as he can watch the toys hanging off the arches and it has lots of holes so you can hang lots of things on it and change the toys easily to keep stimulating them: https://www.tinylove.com/toy.aspx?toyId=46

What does she do if you put your hand around hers to help her hold a toy? Does she mind? If she doesn't then perhaps some get some baby music toys like bells or rattles (Amusica are a good website) that you can help her to hold so she can learn what it is she needs to do with her muscle to hold a toy (if that makes sense??)

We have the same issue with the jumperoo as Findlay will not put his legs down and just lifts them up and crosses them.

 

[scottishgal89]

Perhaps you could find a book on Amazon by searching for something on gross motor skills
The book we have is aimed at Down's syndrome babies (and we have found the exercises very good), but you may find something more suited to yout LO's needs. We think Logan has been helped in muscle development and co-ordination by using a play gym and arch with dangling toys which he bats about with both hands.

S spends a lot of time on her play mat, I feel thats one of the only things she interacts with x

 

[scottishgal89]

In my experience if you feel like you are not getting much from your Physio, then you are probably not. Ask for someone else.

Things you can do at this stage is provide a lot of stimulus for the senses. Things like swimming several times a week (if no hydrotherapy is available) or going along to mother and toddler classes with singing and sensory toys.

Cerebra are a charity set up for neuro and brain injuries and illnesses and they have a catalog of toys and equipment which you can hire for free. Someone comes out and talks to you about your needs. Well worth a go, as then you will have an endless supply of the right kind of toy for her.

I hope that helps. Are there any local disability groups you can go to ?

After me saying that about physio, I had asked for a plan and exercises a few weeks ago and I got it this week. They had a lot in it. There were things I asked for- sitting up techniques, assisted rolling, etc which weren't in it so I asked at the time and wrote it down.
They gave advice on lots of textures and things which is good as I now have a better idea of what to do there.
S has never been swimming- she has only just finished getting her vaccinations but it's something I intend to do soon when I feel that she's up for it.
Thanks for that name, I will look into that.
Theres not any local groups for her age group that I have found at all so far x

Is this Sophie's Mummy? If so :wave:

Has the physio not given you a list of exercises to do with her? If she hasn't then ask her to do so.

I'd definately recommend hydrotherapy if it is available near you as it is supposed to be really good.

Is there anything in particular that she enjoys ie music, flashing lights (if they aren't a seizure trigger for her) etc? If there is something she is interested in then use that in any way you can.

You probably already have something similar but Findlay has got this playmat which he loves as he can watch the toys hanging off the arches and it has lots of holes so you can hang lots of things on it and change the toys easily to keep stimulating them: https://www.tinylove.com/toy.aspx?toyId=46

What does she do if you put your hand around hers to help her hold a toy? Does she mind? If she doesn't then perhaps some get some baby music toys like bells or rattles (Amusica are a good website) that you can help her to hold so she can learn what it is she needs to do with her muscle to hold a toy (if that makes sense??)

We have the same issue with the jumperoo as Findlay will not put his legs down and just lifts them up and crosses them.

Hiya
The physio and OT did a programme for her this week. (wrote a bit about it above and swimming too)
Lights arent a trigger for her seizures, dont think it can be until they're a bit older. She loved the bubble tube at the sensory centre so im making a little sensory corner in her room. As you can see from my FB an order of toys arrived today, i used sensory toy warehouse. I have ordered lights and things, not official sensory ones, as I can't afford that but practically the same thing.
That play mat looks good! Sophie has this one- Click me
She can get a bit frustrated if I try and hold her hand with a toy in it but I do try that. She has some bells and rattles, I'm going to try and find a wind chime type thing as it makes a nice noise. Just feel like I have SO much stuff, none of which she really uses. Apart from the playmat, best buy EVER!!
I'm trying to sell my jumperoo on here just now, think I'm going to get her a standing activity centre to try and encourage her to use her legs. It's just really hard aint it xx