Help with CP

[Hayley16]

Hi

My DS was born on time in June last yr. He was diagnosed with low set ears which we were told can mean problems with the internal organs. He has bin diagnosed with failure to thrive, a large hole in the heart and i was told he had dismorphic features...due to him having a small chin which causes him to have very noisy breathing but the chin seems to have sorted itself out now and to look at looks like a healthy baby. He has had genetics test done which have so far come back fine.
He doesn't feed great which wasn't helped by the fact he was diagnosed with a cows milk intolerance at 8 weeks and has reflux and his weight was very low, on the 0.4th percentile for many months. He had a nasal gastric tube since he was a baby and in January he had a gastrostomy and is now up to the 25th percentile :)
We were told by the paediatrican that he may experience problems as he grew. He smiled at 6 weeks which we thought was a great sign developmentally but as hes got older hes meeting none of his milestones(which im aware alot of people dont like following) He only began batting out at toys when he was 8.5 months, he can roll over from back to front but once on his front he cant lift his head at all. He had a very floppy head up until 7-8 months. Its more stable now but not 100%. He doesn't sit up, doesn't bare his weight on his legs when held up and doesn't babble at al. Just does a little squeal now and again. Hes quite unresponsive in some ways... He doesnt respond to his name and when you do try to talk and play he will smile at you then look away. The 1 thing i have noticed in the past few days is he holds his hands in a fist. He will open one of his hands to bat at a toy but keeps the other one shut and once hes done playing the hand goes back to being fisted. Hes under the care of a physio who has helped us a great deal. It was just since i began looking into CP that i was worried my DS was showing some signs of having a mild form of this. I was hoping anyone who has any experience in CP can tell me what they think.
We have our next physio app next wed so im going to bring it up then and see what she thinks.
Any help would be really appreciated :)

This does sound like it could be CP. But also (my DS does have mild CP) it could be something different/ more complex - I don't mean more serious, I just mean something I don't know about and more rare perhaps - CP is actually very common.

I personally would start going down therapy routes that you pay for yourself. The NHS has been rather neglectful with our son - so we have had to do this.

We've managed to get funding for most of it from different charities. The things I would most recommend for any sort of developmental delay would be Hyperbaric Oxygen therapy and Scotson technique. Look these up on google.

Where in the country do you live? There should be a MS Action hyperbaric oxygen centre close to most places. They charge £10 per session.

Sounds like you have had a lot to deal with . As skewiff said, CP is a possibility but I have heard of and seen, babies who fist their hands until the age of 1 or so but develop normally. Sounds like it would be very mild if he can open his hands to play with a toy in which case they might leave it until at least the age of 1 to make a dx - or not as the case may be. Definitely worth discussing with physio although might not make much difference as to the amount of therapy you will get. My dd has a brain injury but only sees physio once every 3 months!

Thanks for your help. Been to see the Genetics team and they are going to do an mri scan to look into it more

dd2 had an odd chin thing going on and breathed like darth vader until she was about 4. ng fed to start as no suck/gag.

she does have cp though.

are you still getting follow-up with genetics? the initial tests aren't usually terribly brilliant tbh, and lots of people only get dx with a genetic difference a long way down the road.

an mri will be helpful - but presumably they have already checked brain structures and formations? so they would just be looking for more subtle damage? (i'd be a bit ticked if they hadn't already checked tbh)

i'd keep badgering genetics if i were you. it doesn't sound like straightforward cp (particularly with the dysmorphic features and heart issue etc i'd be very surprised if they did just dx cp... lots of kids have the smae issues as kids with cp - difficulties in muscle tone etc, but for a different reason)

you might find 'special kids in the uk' helpful - they have a large member base, loads of which has been through genetics stuff (and some which were only eventually dx with specific deletions at 14yo etc)

hope the scan goes well - have you got a date yet? x

So far genetics have done there initial assessment & tests that all came back clear. We had a meeting a few weeks ago and they mentioned they were starting a new study at the hosp where they look further into the genes so they are hopefully going to arrange that for us.
Im not sure if they have looked into his brain structure or not! He has a lump on his forehead that the paediatrician got xrayed and he said his front bones have fused together too early but he seemed happy to leave it but the genetics have referred him to the facialcranial department to look at it further.
We have no date for mri yet. We are waiting for a date for mri, facial cranial, neuroscience, occupational therapy & for more genetic tests. Starting to get very impatient waiting.
Will definatly check out that 'special kids in the uk' website. Sounds like it would be very helpful
How old is your dd2 now? How does cp affect her life?

she's 7yo now. we were told she wouldn't talk and would be unlikely to walk, but has always been a determined type. although the pattern of her brain damage (from birth hypoxia) means her whole body is involved, she's made brilliant developmental strides. she used a walking frame until 5, but now she walks, talks, shouts, runs, goes to dance classes, brownies, and loves to ski. and she's very bright, which is a bit tricky, because she has dysarthric speech and so gets patronised a bit. mostly she's independent now, but still needs ot etc (will be a keyboard user rather than writing long term).

i'm still not entirely sure that cp is what you are looking at though, and every kid with cp is differently affected. i'm glad genetics are doing their stuff - it's always a long wait though, i'm afraid. i remember sitting in scbu with another mum wishing we could look into the future and see the kids at 5, thinking that would give us all the answers, but of course, it doesn't. when they are 5, you want to know how they will be at 10, then 15, then adult. sn is a tricky game.

hope you get on well at skinuk - they are a great bunch of people - i've been to some of their meet-ups and it's amazing to see the kids changing and developing, as well as spend time in a completely non-judgemental environment.