Reporting Changes to the DLA folks...

[annabella73]

My daughter was diagnosed with Diplegic Cerebral Palsy at 10 months old. At that time, she could barely sit, her balance was poor, and she couldn't crawl. We were awarded DLA for her.

Having seen the consultant today, we are thrilled that she has now decided that our baby does NOT have diplegia, but rather variable muscle tone affecting her motor development. In reality this means that sometimes she has too much tone and stiffness in her legs, at other times she has not enough and they are hyper-flexible.

Since I filled the forms in, my baby has also learned to crawl, though she still can't stand. She has Piedro boots and a standing frame and is making great progress. With a bit of luck she'll continue to change and develop over time.

What I want to know is what do I have to tell the DLA people, and somebody please tell me I won't have to fill in that damn form from start to finish every time she makes an improvement? Babies with these muscle conditions DO develop like everyone else, it's just at a different pace.

Can anyone offer me any advice or experience please?

Thanks. x

I think you should consider whether her care needs have altered. Does being able to crawl (clever girl ) mean she needs less care? Unlikely, imo.

How old is she now? When is your renewal date? If significantly behind her peers, I would say that you could wait until renewal time.

Thank you. She is almost 15 months old now. She does need much more care than other children - we have the very best comparison really as she has a twin brother! She tries so hard to keep up with him, but for example yesterday when he was standing in the garden playing at the water table with my older kids, she had to sit on the grass with a washing up bowl, because her legs just won't let her stand. She needs constant attention, because she will try to keep up with the others, but falls and hurts herself. Crawling has just brought new problems really, lots of bumps and falls and extra bouts of tears when she hurts herself or wobbles over.

Our renewal date is about a year away. I think I'm concerned because the consultant has changed the label if you like.

Thanks for the help.

Even though it is fantastic that she is improving, she still needs more help so I think you don't need to tell DLA anything until your next review. She still requires extra care than an average 15 month old.

Sadly we did have to redo the damned form- sorry

Phone them up and tellth3e,. tjey then decide if form is necessary

make certain youn indicate on the form where a NT child her age would be, .... you need to indicate what a child her age could be expected to do and what she can actually do, to indicate where the gaps are.

And be aware that you mustn't use invisible ink, I can only assume I do as they still have not managed to read that ds3 wakes 7 times a night and have given up on getting HR for him reinstated, and as such no HR miobility