Could my son have cerebral palsy??

[MrsM42]

Hi everyone,

I've never posted on here before but I'm concerned about my son and was hoping for some advice. I have 4 children, my youngest is 3 months old. Since birth he has been a very stiff baby. Over the last couple of weeks I have noticed that he is very different to my other children. When he sleeps, his hands are always straight down by his sides, not up by his head like my others. In fact I noticed last night that he lifted his arms up to shoulder height while he was sleeping and instead of falling back onto the mattress, they hung in the air like a zombie, straight up from his body. His hands and elbows were relaxed and quite floppy but his shoulders were solid. I moved his arms in case the position gave him pins and needles, but I could only lay them flat down by his sides again, his shoulders would not allow me to lay them by his head. I take his to a movers class and the amount I can move his arms is really restricted. He only has movement from his waist until his arms are at shoulder height. He is the same when he is picked up, his arms are always straight and locked by his sides, he arches his back away from me and his little legs are stiff. He always has his head turned to his left hand side or straight in front, he doesn't seem to be able to move it to the right and he coughs and splutters at every feed. When he is on the floor, he moves his arms and legs, but definitely moves his left hand side more than his right and he looks very strange while moving- his arms are nearly always straight.

He is such a happy, contented little boy but I'm really concerned that the way he moves could possibly mean he has something like cerebral palsy. I'm hoping someone can give me some advice or tell me I'm being a neurotic mother. I've got the health visitor coming on Friday so I'll be talking to her about it then, but I suppose I would like some reassurance before she comes.

Thanks everyone in advance

MrsM42 (worried mummy) xxx

[MrsM42]

GP didn't say anything but he didn't really check him either... He listened to his heart and breathing and weighed him. He was quite concerned about his weight because he's a proper little fatty... I'm trying not to research online, the only reason I thought cerebral palsy is cos I have always worked with children and adults wit learning disabilities and brain injuries and I've seen it so many times, my little man just looks the same as them.

Thanks for your help xxx

[BlackbirdOnTheWire]

My daughter had torticollis. She couldn't move her head to one side, had problems feeding, couldn't lift her head up, etc. When she learnt to roll, she could do so to one side only, and push up with one arm only. She had a year of physio and is absolutely fine physically - now 5 and a good swimmer, gymnast, ballet dancer etc.

However, the neonatal consultant who first saw her after referral by our GP was concerned about the possibility of CP, and thoroughly checked her, so I think there must be quite a lot of overlap between the two conditions in terms of presentation of symptoms initially - though DD also had a couple of other issues, such as ptosis, to increase the concern.

In our case, it was the cranial osteopath who diagnosed the torticollis when she was 5 weeks old and we were having issues with feeding and general misery. He was superb, wrote his diagnosis down for the GP and told us she'd need physio and a consultant to check other issues. The GP confirmed it and referred onwards as recommended - though the physio appt didn't come through till DD was 3m, and the physio then told me I'd left it too late. The GP referred us to another physio who was horrified by this, said it was never too late, and we started seeing immediate improvements.

The HV, whilst excellent, had not heard of torticollis - though to her credit went away and read up, and told us when she met DC2 that since then she'd been able to diagnose torticollis herself in three babies and refer back to the GP.

I don't know if this helps you at all, other than to say that I imagine, based on our experience, that it would be extremely tricky to get a definitive diagnosis over the Internet as it could be a number of things - but definitely worth following up on and not ignoring. Hope you get the answers you need.

[MrsM42]

BlackbirdOnTheWire- that's so reassuring... I'm so pleased your LO has recovered!

JadedAngel- my HV is lovely and very much believes in following a mother's instincts but she is very young so I don't know how experienced she is. On the whole I think you may be right- I think maybe a trip to the GP might be better... I've been convincing myself that I'm being neurotic but I've been watching him all day with anothe baby (my friend has a baby 2 weeks younger) and he just doesn't look right... He is so stiff so I think I sefinitely need to get him checked and stop worrying that I'll be wasting the dr's time xxx

[MrsM42]

Thanks JadedAngel- I will xxx

[mymatemax]

Hi MrsM

How was his pregnancy and birth? The first thing the paed or Gp will ask is his birth history.
The GP should examine his full range of movements and muscle tone and will look at the reflexes and head control.
My ds2 has spastic CP (Spasticity = stiff) although actually as a young baby he was very floppy. Although CP comes in many forms most babies don't present with stiffness initially.
even though ds2's purposeful movements were limited I was able me his limbs quite freely when relaxed. the restricted joint movement is something that has developed over time.
As I say CP comes in all shapes & sizes but even if it is, its not the end of the world.

[MrsM42]

Hi Mymatemax,

Pregnancy and birth were normal- I was severely anaemic but he arrived as a planned home birth... Very quick- I went from feeling a bit strange to him being here in less than 2 hours... The only thing that has ever been an issue was that he had bronchiolitis and mild pneumonia when he was a couple of weeks old (despite being ebf) and was hospitalised with very low oxygen sats in his blood and they stayed low for over a an hour... Other than that, routine and uneventful pregnancy and birth xxx

[MrsM42]

Hi,

Just a quick update... I took my LO to GP today, he is very hypertonic and developmentally where she would expect a baby of 3-4 weeks to be, not 3 months. She has referred him to a paediatrician so hopefully we will have some answers soon. Xxx

[MrsM42]

I didn't think he was developmentally behind if I'm honest... Although that could be because he has limited movement in his arms... I have no idea really, just have to wait and see what paed says and in the meantime hope he catches up a bit... All babies develop at their own pace and he could still catch up xxx

[MrsM42]

The wait to see paediatrician wasn't long at all... Got a phonecall from secretary yesterday and was asked to take him up to hospital as they had a cancelled appoinyment and could fit my LO in.. 3 hours, a head to foot examination, blood samples and urine samples to be told absolutely nothing! Apparently there was something in the GP referral that concerned the consultant so he wanted my little man in as quickly as possible to rule out something serious (didn't tell me what) that would require hospitalisation straight away. Whatever it was, my little boy hasn't got it which is great. We need furthe testing to determine what his problem is, although I was told that it was more than slow development so we have another appointment in 2 weeks to go over the results of his blood and Irene tests and to discuss where we go from here.

[MrsM42]

Urine tests, not Irene tests- stupid auto correct!

[Rjae]

Your baby needs an MRI really to determine if he has CP. I think all the blood and other tests as you say are to rule out serious illnesses. So it'll be a bit of a wait for the MRI.

Some babies are hypertonic at birth but loosen up over time, so as you say he could improve and go on to develop normally.

[Myfourblondies]

Thinking of you today MrsM

[MrsM42]

Thanks everyone... I was really hoping I would go in, they would check him over and say that he was just slow to develop but he will be fine and no further tests would be necessary. Probably being stupidly optimistic. Never mind, we will just have to wait and see what consultant recommends from now cos I've got no idea what to expect next it what they could even be testing or checking for. Just got to be patient I suppose xxx

[MrsM42]

Quick update... Saw consulrant yesterday... The tests that have come back from blood and urine were normal but he said the more complicated tests take longer.... He has a number of concerns about my little man... He was bothered that he doesn't have a social smile and doesn't focus on faces or toys... He will look at a light if it's close to his eyes but he won't look at it if the light is at a distance... He was also bothered that he still holds his hands in fists and when he's picked up from a flat position his head flops back... He also said that he shouldn't have a preference for which hand he uses and my little man only uses his left hand... And if he lies on his tummy then he holds his arms straight at his sides or slightly behind him and so just lies face-planted on the floor, doesn't push himself up... So we need to see ophthalmologist to see if there is a problem with his vision and that's why he doesn't focus properly... We are seeing physio for assessment and he is getting an ultraspund on his brain while his soft spot is still open.. He said he would need MRI on his brain too as his mobility and inability to focus with his eyes could stem from a problem in his brain... So we see all of them over the bext 4 weeks and back to see consultant in a month to discuss findings from all the tests and see what the crack is xxx

[MrsM42]

Hi JadedAngel,

It was a lot to take in... I felt really stupid cos I was sitting there making excuses like, maybe he's just not a smiley baby? And me insisting that he's fine apart from how stiff he is... I'm feeling really deflated to be honest, but there's nothing to do except take him for all the tests and assessments and see where we go... Just got to take it one test at a time I suppose.

His sleeping is amazing... He has slept 12-13 hours a night straight through from about 2 months old... Out of the 4 I've had, he's the only one who does that... He eats loads and is putting on weight no problem, but he coughs and chokes every time he feeds. Consultant never said anything about it when I told him so hopefully that's all fine. I know he always has a rattle in his chest when he breathes, it sounds wet but the poor soul had really really bad bronchiolitis when he was just a few weeks old so I think it's probably down to that... It's never really gone away but no doctor has been concerned about it.

I completely sympathise with your position... I've only been waiting a few weeks since I thought there was something up with my little man, I really don't know how you have coped for 3 years without a diagnosis... It must have been really hard for you xxx

[Rjae]

If you go to SN children there will be some help there from people who have been in your situation.

[mymatemax]

Hi Mrs42
Don't feel stupid, you are a parent not a Dr, you are the one that has raised concerns.
IF they haven't already also ask for a referral to a speech therapist as they can advise on feeding and swallowing and will assess if the choking is a problem
My ds2 had many chest infections as he was struggling with feeding.

Take care

[Littlesoul123]

how is he

[birdling]

@MrsM42 How is your little boy?