Can’t stop worrying about Cerbral Palsy

[Qwerty93]

Hi,

I’m hoping some people can put my mind at ease!

My little one is 5 months and sometimes feels really stiff, and other times not. Her stomach is weak. Like once I had to use full force to lift her arm up.

I first noticed things where odd when she looked asymmetrical, the left shoulder appears internally rotated and hand is 80% of the time with thumb in.

She never really moves her arms above her shoulder. Only occasionally have I seen her do it. And it’s really hard to like get her in jackets etc! Her fingers seem curled.

The right side can also be fisted too but I would say more open than the left.

Her movements can be jerky and her co-ordination for a 5 month old seems to be behind I would say.

She can hold toys, and grab at toys and bring to midline, and bring to mouth etc.

She has okay head control!

She can roll back to front (right to left). On tummy time though she’s not very good at lifting her head. She’ll do it. Then get tired I guess and have to then lift it up again.

Her legs also concern me. Again. Look asymmetrical. Can kick them, Infact does so quite a lot. My concern her is that the feet tends to turn inward, and she does cross them at the legs, and when kicking the legs will go over and under and hit each other after a few kicks.

She can get feet to mouth and does play with them.

She babbles, smiles, laughs, can track with her eyes. Very alert. For sure.

When she’s eating and falling asleep her hands/arms will move up and down.
She also arches her back ALOT. And I can’t think why!

All I can think of is CP.

I have seen a dr, general paediatrician, 2x nhs physios and they’ve all said she’s doing great developmentally and actually think I’m crazy first time mum. So much so I’ve got referred to a psychiatrist, but all I’m telling them is how much my little one has CP and no one believes me.

Is there anyway the above could not be CP and something else?

The only thing I can think of what caused it as I didn’t have a traumatic birth, but when she was 2 days old in the hospital, I was putting her the hospital crib and she sort of dropped into it. I didn’t think anything of it as she stayed asleep. Now I’m wondering what if she was unconscious or something and had lack of oxygen with brain swelling and I’ve not noticed!

Help :(

Qwerty, you've made me look through my son's photos from the hospital and I would say he did actually look pretty different every day, his face definitely looked more swollen here and there on the day we were discharged looking back at it. I understand you're worried and blaming herself but if it was that cot it's honestly beyond unlikely you've caused her any harm at all I understand looking at the photos she looks different, yes, but this isn't very helpful as of course your mind is focused on trying to find evidence that you did something wrong so any photos where she looks different for a perfectly normal reason will worry you. But honestly, you didn't hurt her, these cots aren't very deep at all, they are built for newborns

I honestly cannot see anything odd at all with her fists. Or her legs - your initial photo made it look a bit as if one leg was slimmer than the other, but it isn't the case now you've shown more photos. Feet look normal to me too.

What does look asymmetrical posture wise is her left(? I think - it's mirrored, isn't it?) shoulder is higher than the right one and closer to her neck and head and this then has an effect on her core and hip. I am not a doctor at all - just saying what I've observed and it is indeed very similar to my friend's son. What is she like in a bath or if you support her sitting? Does she lean to one side? Can you see her ribs collapse a bit on one side? How do you feed her, on one breast or using the same arm (of yours) if you bottle feed?

Sorry I don't see how anyone can help you as a picture will not diagnose CP - anyone can clench their fist in a picture. I totally empathise with what you are going through as I have been there but I don't think this is helping you.

Like I said earlier my daughter has mild hemiplegia which is a type of CP and that doesn't make me an expert so even when someone's child has this we can't confirm or not confirm your child has it or not you just need to keep talking to your GP.

@PurplePansy05 thank you for your comments. I really hope it is symptomatic asymmetry. (I will look at that and see if it’s similar). Yes in the bath she does always lean to one side. I think her ribs probably do feel different on one side.

It’s interesting as I’ve not heard of that before!

they cant know until over 2 op.
please seek reassurance in person

@1224boom did they say what cause your little ones hemiplegia?
How is she doing now!

It was a bleed on her brain very early in pregnancy they recon before 12 weeks. She is amazing. She runs, jumps, hops rides her scooter and does everything she wants to do just in her own way with some extra help sometimes - many people don't even know she has it if I don't point it out. Try to keep calm as if she has it you can't change it anyway. Just enjoy her she's beautiful whether or not she has it xxx

All those other photos look totally normal. I can’t see any difference in before and after.

@Qwerty93 I know it's hard to strike the right balance sometimes (especially if you are anxious and a FTM as well - I feel you). But deep breaths, it's not your fault and as pps suggested, observe her and if you are still concerned then go back, ask for a different doctor, a different physiotherapist. I'd think you should start picking up on any actual issues (if there are any) pretty soon as she'll be starting to sit up etc. If, and it is an if, she's asymmetrical, she might need tailored exercises. You could also make very small tweaks which won't harm but may help a tad - like holding her on either side of your body, not just one, making sure that when she sleeps she either sleeps straight or changes her head positioning from one side to another (obviously don't wake her up though, only if she allows very gentle movement), use both sides when breastfeeding and swap arms if bottle feeding.

If you want to exercise her muscles to get her hands to open up more, you could use feathers to tickle them gently and encourage your DD to open them up more. There are baby massage techniques that can help too. And of course toys that can be passed on from one hand to the other, I bought a great little rattle from Oball for pennies. DS loves it and it improved his coordination and dexterity. All of this will relax her and you and help you bond with her too, so positives all around Take care xx

@1224boom ah. I wish I could. Just so nervous about my little girlies future.

Well I am sending you lots of love as it's awful worrying about your baby so I totally emphasise as I went through it all and I hope you get more clarity and help from professional health care people who will be able to help you.

Separate to your anxiety, I woukd change what she's wearing. It looks tight on the waist and if she's arching they will be reflux and reflux is much worse when you make something tight around them.

To be fair, these are the Splash About swim nappies which are tight as they're supposed to be, they just need to be pulled up a bit higher. But if she wears any tight bottoms I'd agree that comfier leggins and babygrows might be better for a refluxy LO. DS had reflux and he arched his back to the point he was getting so worked up and stiff he couldn't feed. Luckily, he grew out of it by now.

@Morechocmorechoc yeah, that was about two months ago now, she was really bloated from taking in air when feeding! Thankfully she doesn’t take air in now!

The swim nappies did fit and went higher, was just mid photo pulling them up 😂.

None of those symptoms are anything my son had/has. He has CP, amongst many other serious medical issues.
Thinking on my sons many diagnosis’ when I put a worry to a professional they either agreed with me or said there’s nothing to worry about that is normal for no age/stage of development.
If the many professionals say she is fine abs have referred you to psychiatric help then I think it’s safe to say your daughter is absolutely fine and CP isn’t something to worry about.

@Jojobees Ay, I hope she’s okay and there is another explanation for her asymmetry and fluctuating tone, although the physio didn’t think she was stiff at all.

Hope your son is doing okay x

Hi OP,

My son had intermittent high tone in his legs, would stiffen and scissor them when held up as well as when lying down or kicking. He also had back arching and sustained ankle clonus. Despite all of this he has no CP diagnosis, just a few neuro issues that passed in time - extremely common and most parents wouldn't notice it. Trust the professionals. I have huge sympathy for you though as it's a scary place to be.

My DD was an extremely stiff baby, even is now at 21 months (feels solid). I worried about CP too, similar reasons to you. Late roller (8.5 months), late crawler (10.5 months)… walked at 15 months and her gait was weird but she’s 21 months and absolutely fine, nothing wrong with her at all.

It’s hard for first time mums who have never seen a baby day to day, they are weird little things and are very quirky.

I mean this in the nicest possible way, but please get help for your anxiety. I did and it was the best thing I could’ve done because I can now enjoy my DD and not be constantly worrying about her.

Baby DD fell 3 feet out of a sling onto a concrete floor twice when she was about a week old.

She's at Uni now. No damage done.

Doesn't matter what we say, OP. You're anxiety makes you see a problem no matter what we say.

@Foreverbaffled and @Vicky1989x I really hope my little ones is just trivial like yours. Sometimes you hear of the professionals getting it wrong. Scares me. I hope they’re right and I’m wrong.

@lljkk that’s what people have told me, like I didn’t think anything of it at the time. It’s only when looking back. People have told me that a lot worse can happen, like some fall off the hospital bed to the floor, or some aren’t caught at birth. But I can’t help thinking what if I was just unlucky.

The other thing with babies, is that sometimes they just do weird stuff and then grow out of it. My baby used to get slightly blue arms and tremble when she woke from naps. I was FREAKED! Took her to paeds and they said it was nothing to worry about and she’d grow out of it. I was very doubtful and worried about it being serious. It wasn’t. She grew out of it. My other baby used to get absences. I thought it was epilepsy. It also wasn’t and he just grew out of it. He’s still a dreamer now though. So I understand the worry you feel.

Yeah! The arching of the back is crazy though. It’s like she stiffens and I have no idea why!

@Qwerty93 Arching their backs is usually a sign of wind and/or reflux. My DD done this loads and she had terrible reflux.

Stiffening can be reflux or tummy pain too. Mine used to sometimes almost throw themselves out of my arms by stiffening when I wasn’t expecting it.

Aye! It just seems everything like tight thigh muscles etc. I’ll soon know when she tries to sit right? What age do they normally sit unassisted? And how do you teach them?

It really varies but I don't think there's anything you can do to teach them other than encourage them to use their bodies to reach and move.

Do you have a partner? What do they think?