Struggling with cerebral palsy diagnosis..

[Cpchild]

My DS was diagnosed with CP last week.

He has low muscle tone on one side and struggles with eating etc. He is 14 months old and was born prematurely with IUGR throughout pregnancy.

He doesn’t sit unaided as of yet, although the physio is sure he will eventually walk and go to mainstream school.

I’m just at a loss if I’m honest. It hasn’t even been a week since the diagnosis but I haven’t slept. I’m just really, really sad. I’m blaming myself, that I couldn’t grow him properly or keep him in. I realise it’s not the end of the world. I just wanted to rant here. X

@Cpchild Hi there I have just read your thread today and couldn't leave it unanswered.

I have been in your position too with my Daughter. I had IUGR too and she was born prematurely. She was in Neonatal for 2 weeks and then discharged home. As far as we were concerned she was perfectly "normal" but then she didn't meet her milestones. I remember at a year old she still couldn't sit unaided. I would sit her up and if you let go she would just drop. Then there was no sign of walking by 18 months. I kept putting it down to the fact that she was premature and that she would catch up in her own time. She had a MRI and was diagnosed with CP at 21 months which felt completely gutting that it confirmed that there was actually something wrong. She starting walking at 2 1/2.

I too had feelings of being sad and feeling guilty and questioning why?

Do you know how your Son will be affected? My Daughter does walk independently and goes to main stream School. You just get used to it really, all the physio and appointments etc.

I am happy to talk and answer any questions if that would be helpful?

I can’t comment as a parent. I do have CP. You did nothing wrong at all.

There is a wide range under CP. For me it has meant that I have weakness down one side. I don’t have intellectual problems but my sight is not good. I have a number of broken bones over the years. Physio is really important even if your child resists like I did.

I’m sure MNetters of SN children can help at each stage. Scope has some useful information (I’ve been looking for adult CP information recently. Some of the sites look like just information but are actually lawyers/not UK).

www.scope.org.uk/advice-and-support/cerebral-palsy/

Hi 🙂

I can’t comment on CP as have no experience but do have a son with other disabilities.

It’s completely normal for a parent to struggle with their child’s diagnosis, my ds was diagnosed with autism at 3 he’s nearly 7 now and other diagnosis’ are following, it is still a bit shit to hear even though I’ve been in this world 4 years and do often think why us? I have days were it doesn’t bother me at all then go through phases (usually linked to when ds behaviour is really poor) when I think I can’t do this anymore! I’ve had a bad week last week with ds and school and other things linked to ds and i felt really down and alone.

That’s fantastic news the OT is positive that your ds will walk and attend mainstream school.

I remember when ds was younger and his consultant being so bleak on the outlook of his future it made me feel really helpless, ds is doing better than expected, he talks and communicates for a start which his consultant wasn’t sure he would do, we have many challenges and he will be going to special needs school this year but I do have higher hopes for his future than I did a few years ago.

The main thing is your ds gets all the support he requires.

Be kind to yourself and please don’t blame yourself, it’s nothing you did or didn’t do.

It will get easier to accept in time and you’ll never remember your life being any different x

Just wanted to add aswell, if you haven’t already or aren’t already in receipt DLA please do, it can help pay towards things / therapies your ds needs.

This is a great guide to assist you.

cerebra.org.uk/wp-content/uploads/2019/06/Disability-Living-Allowance-dla-Cerebra-charity-children-with-brain-conditions.pdf

@Cpchild It's ok, allow yourself time to process the diagnosis. You may experience all kinds of emotions including the self blame. ((Hugs)) 💐

@Cpchild Just posting on the off chance that you see this message. My DS is the same age as yours when you wrote your OP. While he doesn't have a CP diagnosis yet, we've finally got an paediatrician so suspect that this will be confirmed shortly. I could have written your post and feel so upset, and angry and scared for the future all at once.

I just wondered how you and your DS are doing, really. Hope things feel more manageable now for you both.

Hey I know it’s been a couple of years but my son is 18 months he was also premature and had very delayed milestones he has been to see a pediatrician who says they suspect it’s cp he has low tone in his core and some stiffness in his legs although he crawls now it’s been a couple of months before this he was army crawling he pulls himself up to stand and cruises but he pulls himself up in a way which seems like he’s using the strength from his arms rather than pulling up through his feet, I wanted to ask a few questions if you don’t mind, in regards to how did you get your little one to start walking and what home physio did you do