Cerebral palsy?

[10187Mummyof2]

Hi,

I was wondering if anyone would mind giving me advice? I just want to hear from anyone who has CP or kids with CP and their symptoms as babys?

I am driving myself mad with worry My baby is 10 weeks old and I know he is really young but he wasn't born with a grasp reflex. He also has a slight squint and head lag during pull to sit. He doesn't weight bear on his arms and shoulders at all during tummy time. He has good head control and very sociable, he has a high palate and slightly recessed chin. He has seen the paediatrician who has said he would be more concerned if the grasp reflex was asymmetrical, as for his head lag he thinks he is still young, but he will evaluate him again in a few months. He did have a traumatic birth so thats adding to my anxiety.

Just wondered if anyone with children with CP would mind telling me there experiences? I just can't stop googling! Its the reflexes and head lag that really worries me. He doesnt sleep at all either! He is awake from 10-4am most nights! and also has reflux.

If anyone could offer advice I would greatly appreciate it.

Thanks xx

Hi,
My DD (4) has spastic diaplegic CP. she was born prem and very poorly and a brain scan identified a brain injury at 2 weeks old and we were told then she pretty much would have CP, but I watched her early movements like a hawk so try to see it. In all honestly she had relatively normal movement first the first 4-5 months. She did have a head lag, and she didn't reach for toys until 5 months but she gained head control by 3 months. Her legs didn't seem stiff at all in those days, spasticity didn't appear until she was around 12 months. She was delayed in her milestones though, she didn't roll over until 7 months, couldn't sit unassisted until 12 months.
I think in the early days look for things like retained reflexes, weakness one side. There are some videos on you tube called pathways atypical vs typical development which are helpful but they can also drive you mad as lots of babies show atypical traits or are a little slower to do certain things and they are completely fine. In reality you can't know for sure (except in the more severe cases) until they are older, usually around 12 months most parents of CP children will know, and can take the Dr a little longer to officially diagnose.
But if you are feeling really anxious and worried it can't help to do some simple physio exercises. We started physio when my daughter was 3 months old, and it has helped loads. At this young age simple things like assisted rolling, lots of tummy time and gently turning their head whilst on tummy, again you tube is good for simple baby physio exercises.
I do understand because I also worried a lot in those early days but I will say my daughter having CP and being physically disabled (she uses a walking frame to get around and sometimes a wheelchair) is not awful like I thought it would be. For us now it's just normal and it doesn't make me sad at all, mainly because she's not sad about it, it's just all she knows and she's made up for her lack of walking with lots and lots of talking haha.
She has epilepsy and some learning delays which I find much harder to deal with than the physical disability.

@Poppywood
Hi,
Thank you for taking the time to reply . Sorry to hear about your traumatic birth, that must have been a worrying time! But I'm really glad your little girl is happy and thriving, its reassuring to hear as it is worrying! Maybe she will grow out the learning delays? Its quite common isn't it as they get older! Thank you for the information its really helpful, I will look into the youtube videos. Can I ask..did she have headlag during pull to sit? Or just floppy when held? Did she have any other issues as a baby? Such as, reflux, constipation and trouble sleeping? Has it affected her speech at all?
I am getting frustrating with the Drs tbh, they just don't want to know because of his age. I read its a cultural thing, they delay investigations on young babys unless urgent as they think it affects the bonding process. But surely if he was born without a grasp reflex, thats pretty significant? He should have been assessed by neuro then. I took him to his 6 week check and my GP didn't even look at any of the things I mentioned and said its too early to tell. I finally persuaded them to refer him to paeds, he saw him and I asked if he would take some bloods to check for chromosomes and do an MRI head, he said no but he will at his 5 week check of issues still there. I just feel that atleast if he had an MRI and I knew there was some brain damage I could get him some private physio as a precaution. As I know this is key and had a really good impact. I know he definitely has hypotonia of the upper body, due to is headlag and not using arms and shoulders, he also has a weak cry and dysphagia(which has improved quite a bit). I was doing alot of research online, looking at studies and trials, and I read in 1 study 70% of babys with a high palate ended up with CP. In another 80% of babys with a poor grasp reflex ended up with CP (of the athetoid type) where as I think retained reflexes is more common for spastic CP. He also had a squint(confirmed by opthamologist) but he feels that its possibly from the injury he had from forceps as he has the rarest type. I am just finding more and more things wrong as time goes by, yesterday I noticed 1 nipple is higher than the other!
People think I am going mad because he looks so well, but its mothers instinct isn't it...when you know you know. I never had any concerns with my first at all.
Sounds like your little girl is doing well and chatting your head off! Haha i hope the same for mine too if he does end up with CP, long as he is happy! How did you find she was with social milestones as a baby? (Sorry for the long reply xx

Yes it is possible she will grow out of the learning delay. It's difficult to know until they are older, she also has a visual processing disorder and she struggles with fine motor skills, she can read basic words and knows all her phonics but she can only make scribbles with a pen - which could just be because of her motor disabilities or it could be a learning delay it's hard to know. Learning disability is more common in people with CP but it's certainly not a given.
She talks very well and she was an early talker with perfect pronunciation from around 18 months old, it's the only area she's "advanced" in.

She had a head lag in pull to sit yes, but it improved by around 4 months and she could hold her own head up from around 3 months.

She didn't have any issues with reflux, constipation or sleeping in those days, but those things are very common in CP babies (although to be fair also common in neurotypical babies). She did start having seizures at around 9 months old, epilepsy is sadly common in CP kids. She also has a squint (strabismus) and nystagmus (wobble of the eye) which are also fairly common with CP.

Yes you are absolutely right, doctors very much have a "wait and see" attitude and it is not good enough. You sound like you are already really on top of things and fighting and advocating for your baby as much as you can. Keep pushing because if there is something wrong early intervention really is key. I would go back to the GP again and say you want a neuro referral, and just keep pushing. I think the things you have mentioned all together do sound like there may be something going on, but also some babies, especially those who have a difficult birth can just take a little longer with some things but I agree a missing grasp reflex is a flag.
Have you started to look into private therapy? Make you find a neuro paediatric physio who understands the babies brain and how it develops if you do go down that route.

@Poppywood Yes I think my DS will have fine motor problems due to not having the reflex, also he still constantly hits himself in the face! Ha He does get little tremors in his hands and head aswell unfortunately . Yes my DS also seems very on time with his social and language skills, he is constantly smiling and giggling and cooing! When I hold him infront of a mirror he babbles and giggles at the other baby (himself) .

It's funny you say that about the nystagmus, my DS was born with nystagmus, his eye were shaking side to side and rotating in circles, I had never heard of it then and I though omg he has brain damage! My HV came to look at him and said it looked like nystagmus, so she referred him to opthalmology but miraculously by the time he had his appt it had cleared up...so that was really weird. Can I ask did the ophthalmologist offer to treat the strabismus? Do they use patches? Aw sorry to hear about the seizures that must be scary! Yes my DS never sleeps and I read this is common for CP babys, he literally does not sleep in the or night! No matter what I try, he will sleep for 20 min intervals in the day maybe 4xs, I have to let him sleep in my arms mostly..then at night he will stay away til 2/3am some nights wide awake and then wake up hourly til 6am, but yes I know this is also common in any newborn!

Thank you! yes I really am trying my best to be heard..but I agree its really not good enough and detrimental for the baby and parents. I really think the wait and see approach needs to change, so many mums are fobbed off as being overly anxious. I did ask my GP to refer him to neuro and orthondontics- which he refused. I will try again at his next vaccine appt...I am sure he cringes now anytime I call! My DS palate is so high it has narrowed his nasal passages and he struggles to breath through his nose esp when he feeds, he mouth breathes and is constantly congested, I am using nasal sprays throughout the day. So yes, all in all I am having quite a nightmare! Its such a shame because he is such a lovely baby with a nice temperament and I just want to enjoy him but I also want to make sure he gets all the help he needs (if any) so I will kp on pushing! Thank you...its nice to hear from ppl who have been through it already

Have you got any further. My son has hand tremors when does yours do them or are they random?

@jhaust811
Hi, he is under paeds, we saw him last week but he wants too 'wait and see', but thankfully he did px omeprazole for his reflux. The hand tremors have completely gone though, they went around 4 months. Just his veryyy bobbly head! Not weight bearing on his arms during, just seems a little weak for his age but have to see how he goes. I do think now though hand tremors are completely normal 0-4 months :) do you have any other concerns?

How is he

Can anyone on this thread update? I am worried about my son who seems to be in a v similar place, but the GP has said not to worry.