Potential CP diagnosis

LittleBean

Hi all, I am new around here. My apologies for the long post but there's a lot I want to get off my chest if you'll oblige!

I have a wonderful, smiley, happy 7 month old baby boy who we were told this week may have CP. We were only told this was a possibility at the start of this week and it has come as a bit of a shock - I have felt something was a bit 'off' about his movement and development for a few months now but it seems quite subtle so I think it was a surprise to hear there actually might be something wrong. I'm an occupational therapist by work background (though primarily with older adults, not kids) so disability doesn't 'phase' me and I know there are some fantastic therapists, therapies and support groups in place for all kinds of problems. 

We were initially referred to the paediatrics team back in May because he wasn't following movement or objects with his eyes very well - he loves staring at trees and moving grass/natural objects and can see people (and smile back at them!) but if you move anything across his field of vision most of the time he won't follow it, especially if he's looking at something further afield. There was some concern about his head size but we now think that might be genetic and just a 'family quirk'. We actually got a paediatric assessment quicker though because he can be reluctant to use his left hand, and when he does use it it is often much less accurate at both grabbing (opening/closing his hand) and moving to an object (he often ends up 'circling' the object rather than getting it directly). If you place an object that he wants to his left hand side he'll either grasp it if it's right by his left hand or he'll rotate himself and take it with his right. Looking at pictures his left hand is often closed rather than open though he can open and close it as you would expect. He also seems to have increased tone in his left arm - not to the point where it's unmovable, but it's definitely stiffer and getting his arm through t shirts/jumpers can be a bit of a battle! He also seems to have shivering movements, which only affect his upper body - they last about 3 seconds max and happen randomly. Sometimes many a day, sometimes none for a few days. 

Movement wise he is sitting up and has been for about 6 weeks but he still loses his balance and half of the time ends up falling backwards or to the side. He arches his back often when he's being held and often throws himself backwards or forwards (yesterday he did this in our rocking chair as I was trying to rock him to sleep and he bumped his head on the arm which caused some tears, poor love! Most of the time if he doesn't hit anything too hard he just laughs though). He is trying to crawl and can get up on his hands and knees but can only rock. If he does manage to get any movement, it's largely because he's lifted his knees and 'hopped' forward rather than any co-ordinated movement. Indeed, we've tried support his trunk with a towel to encourage him to move his hands and legs separately and he just doesn't attempt to move them in any meaningful way. 

The trouble I'm having now is that since having the assessment on Monday, I'm struggling to distinguish between what is normal, age appropriate development (for instance - the crawling; as some babies will never crawl and some do but take a good 2 to 3 months to start) and what is potentially a symptom. We are now referred to a neonatologist who is apparently the local expert in developmental abnormalities in our area but this could be a long wait. We were told that the only way to confirm a diagnosis of CP was with an MRI but this would likely take over a year, and even then they may not be able to diagnose it from that as they may want to wait longer and see what other, if any more, development issues he has. 

I was wondering if anyone had any experience with the above and whether any of this is ringing true for you? Or are we on a completely different track? Overall, like I said at the start he's a happy, smiley, content little boy and at the end of any medical appointment we always get a comment on how happy and chilled out he is (honestly, if all babies were as chilled as him I'd have 10!) which is all that matters to me really. But would like to hear from experiences of others, especially if you've had a similar one  

Richard_Scope

Hi @LittleBean
Welcome to the online community and thank you for your post. I live with CP and much of what you have described applied to me when I was a child but just because a child has these symptoms doesn’t mean they will be diagnosed with cerebral palsy. Doctors usually hesitate to make a diagnosis until the child is at least 18 months of age to ensure they make an accurate diagnosis but sometimes much later, especially if the person is only very mildly affected or has other health issues.

As you know, by definition, cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them.

It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan/MRI scan often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation).

LittleBean

Thank you for your reply @Richard_Scope. Indeed, the GP we met before we got this appointment said that it could potentially just be that he's progressing a bit slower than normal in a few areas but for no reason and that he may catch up with some or all of them. I think that might be a touch optimistic myself!

It's difficult for a lot of reasons obviously but probably number 1 is I'm very impatient, and very much a 'OK, if there's a problem let me know and then I can work with it' kind of person, rather than someone who's happy to sit and wait. The page about diagnosis you linked is very useful and I will try and follow it. 

I'm very worried about telling my parents, they are massive worriers and have been head of the 'EVERYTHING'S FINE' brigade when I've raised my concerns about his movement. I don't deal with fussing well and I know it'll all be a big fuss!