If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
I think 13yo son has CP? How do I investigate? Should I even bother?
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?
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?
Replies
Others may come along tomorrow that can offer more advice so do check back.
Scope community team
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.
Specialist Information Officer - Cerebral Palsy
Want to tell us about your experience on the community? Talk to our chatbot and let us know.
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.