5 year old diagnosed with spastic diplegia last year can anyone give any advice

Mum1490

Hi everyone,

last year my little girl was diagnosed with spastic diplegia she’s affected both sides shown by mri but currently only presenting on her right side, she’s constantly poorly, suffers with tremors, has nerve palsy in her eyes falls over a lot and struggles to keep up with her peers! On some days myself or my partner will have to pick her up and carry her to places around the house as she just cannot do it. She has a wheelchair as she cannot walk distances and sometimes struggles to eat as her tremors are bad and she doesn’t sit on her bottom tends to sit on her back! She has a special chair at school but it’s too small now. 

All we have been told is day by day will vary and she was referred to community care who we haven’t seen in a long time apart from a physio therapist 3-4 months ago and everyone else seems a nightmare to get hold of. We was also told she could end up with epilepsy in the future!!

Any advice would be sooo appreciated ?

Richard_Scope

Hi @Mum1490
Great to meet you and welcome to the community.

Your little girl should be having regular physiotherapy and still be under the care of a paediatrician. If this is not happening, the first thing I would do is contact your G.P. How long ago was your daughter diagnosed?

Mum1490

Hi Richard,

Thanks for your reply.
Amelie was diagnosed last year at great ormand street.

All our GP says is it’s down to her community care team but everytime I mention they are not easy to get hold of you keep getting different people different numbers all I get is to keep trying. 

At the moment it works out she sees her physiotherapist 6monthly and last check they said her muscles have become a lot tighter and they wanted to refer her to the paediatric team for talk of possible surgery? Since then been nothing and there’s no direct number for them.

Richard_Scope

Your daughter should be having physiotherapy on a weekly basis. That will be very beneficial for her muscles and her posture. We have an excellent dedicated team called Navigate that is a national mentoring service, that provides online emotional support for parents and carers of disabled children who are finding out about their child’s additional. My colleagues at Navigate have real lived experience.

Mum1490

Thank you so much I’ll check it out ?

Mum1490

Thank you so much I’ll check it out ?

Richard_Scope

No problem @Mum1490
We're here to support you.

Mum1490

@Richard_Scope do you know what I could do to help my daughter with exercise? I’m in a catch 22 situation she gets extremely tired with walking etc but been suggested to take her swimming, horse riding etc... but where I’m am unable to keep a job because I’m off with little one so much I’m unable to afford it I need to look for alternatives any suggestions? 

Richard_Scope

@Mum1490, what area of the U.K. do you live? 

Mum1490

Grays, essex

Richard_Scope

I will do some research and get back to you

Mum1490

@Richard_Scope thank you ? 

Richard_Scope

I have found these links:

Hydrotherapy Essex

Inclusive Active Essex

Your local council should have discounted activities. I will keep looking for you.

Mum1490

Thank you ? 

Richard_Scope

Are you receiving all of the money that you are entitled to @Mum1490?
 

Mum1490

I’m not receiving anything I don’t know what I’m entitled too. 

Adrian_Scope

Hi @Mum1490 and a warm welcome to the community.

A lot of benefits are means-tested so would take into account your household circumstances but there are a few that aren't. 

To start, can I ask if have you applied for DLA (Disability Living Allowance) for your daughter?

Richard_Scope

Here is a Benefits Checker to help you find out what you are entitled to. Your daughter is entitled to DLA (Disability Living Allowance). 

Here is the link to the DLA ‘how to’ pack  https://contact.org.uk/media/1172324/claiming_dla_for_children.pdf

Mum1490

Hi @Adrian_Scope, thank you for the welcome ?, I have tried DLA for my daughter but it was declined when I called them again yesterday they said I had to re apply. We struggle to understand the rejection as she has a wheelchair for distance, suffers with tremors and there are a lot of times we need to help feed her as she is unable to feed herself, she sits on her back and not her bottom and needs a chair which I’m waiting on and a specialist chair at school. I feel very upset as I don’t know what to do to help.. we have to lift her in and out of the bath help her get dressed ?‍♀️ Apologies for rambling 

Adrian_Scope

You're not rambling at all @Mum1490! It must be really frustrating for them to say she doesn't have any additional care needs when you know she does. Can I ask how long ago the decision on her DLA was made? It may still be possible to appeal rather than re-apply. 

Mum1490

@Adrian_Scope just before Christmas last year we got the letter saying it had been declined so they’ve told me to re apply. It’s very upsetting as I’m trying to help as much as I can but have to leave my jobs as of her being poorly or falling over and a lot of the time she doesn’t put her hands out so her head normally ends up being impacted by her fall. They’ve told me to send all the letters I have as evidence I did this last time they had myself and her dad filling the form in, letter from SENCO at school, her teacher, Basildon hospital and great ormand street.