I think 13yo son has CP? How do I investigate? Should I even bother? — Scope | Disability forum
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I think 13yo son has CP? How do I investigate? Should I even bother?

LittleLatte
LittleLatte Member Posts: 2 Listener
New here. Came with a very specific question.

13yo boy. Has diagnosis of ASD and DCD (dyspraxia). I've always wondered how they ruled out CP?

He had his first ear infection causing perforated ear drum at 3 weeks. Then hospitalised again at 5 weeks for same. Then in and out of hospital for first 4 years with infections and breathing difficulties.  I had a womb infection diagnosed 7 days after he was born and put on 2 weeks antibiotics. Stopped taking them. That's when his infection started so I've always suspected he had an infection from the start and was getting the benefit of the antibiotics in my milk. 

When he was younger a riding instructor who has experience with RDA said he rode like he'd had a stroke because he was weaker down his right side. 

He's had private physio for walking about 2 years ago because he tripped and fell frequently. They said the same thing- he had a weakness to his right side. 

He can't really use a pencil. He can write his name with his left hand. I've always wondered if he was meant to be right handed that's why writing with the left is so terrible. 

I feel like it's always going to bug me if we don't get it ruled out. 

The NHS is a bit busy right now. And it took us 8 years from the first referral to get the ASD diagnosis (even though when he finally was assessed he scored high). So I've been wondering about a private assessment. 

So that's a long way to ask 2 questions:
1 - Should I look into this?
2 - Where would I start?

Comments

  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    edited January 2021
    Hi @LittleLatte - & welcome to this friendly & supportive community. I wish I had the answers for you, but, as a parent with a genetic disorder, it was always important for me to find out more to help my children & now also grandchildren. This isn't the case with your son, but it seems like you'd like to rule hemiplegic CP in/out. As you have concerns, I would say it would possibly help you both to look into this. However, if you don't mind, I would like to ask @Richard_Scope for his input as an adult living with CP, who is also our CP Specialist Information Officer, for his advice.
  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,720 Disability Gamechanger
    hi @LittleLatte welcome to scope, its good that you've found us. I'm no expert and can only really answer part 1 of your question and that always has to be with your GP. Yes the NHS is busy right now but it's never to early to get the ball rolling.
    Others may come along tomorrow that can offer more advice so do check back.
    Be extra nice to new members.
  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @LittleLatte
    From what you have described it sounds very much like hemiplegic cerebral palsy but this would have to be confirmed by a medical professional.
    I would contact your G.P. and ask for a referral to a paediatric neurologist. For me, it is always worth seeking a full diagnosis, that way your son will receive the support he needs.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • LittleLatte
    LittleLatte Member Posts: 2 Listener
    Thanks all.

    We've done so much to improve his life already - occupational therapy and physiotherapy and retained reflexes therapy have made a huge difference - that's what we focused on when he was younger, what would help rather than constantly arguing for a diagnosis - and his autism is definitely the thing that has the biggest impact and took 8 years to be diagnosed.

    That was 2 years ago and I'm not sure we're ready for another round of appointments and assessments yet, but at the same time, I think as he becomes an adult it's important for him to have the full picture.

    I think you're right though - we'll need to do it eventually, so might as well get the ball rolling.

  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @LittleLatte - you sound like an amazing parent that has put everything into place to help your son, & I do understand about taking them to see more specialists to get answers. I did that with my son, & it took time trying to find out what genetic disorder our family had. I learnt more (it took over 2 years as I found we also had another genetic disorder too) when my son was 13.....they turn into young adults before you know it, &, from personal experience, I think it helped him to find out when he was comparatively young. His 6 year older sister however was resentful of the info I'd found for quite some time, even tho she'd asked me to find out more.
    As Richard says, do ask your GP for a referral to a paediatric neurologist. It's worth pursuing, & perhaps easier when he can see a Paediatrician that will likely understand more. Don't know if it helps, but I was a physio a long time ago, & specialised in treating young children with CP, so appreciate you getting your son physio too. My best wishes.

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