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Cerebral palsy? or something else?

6 replies

00HarleyQuinn00 · 27/08/2021 13:59

Looking for some advice

My daughter is coming up to 4 months and still isn't supporting her own head.

She has pretty good muscle tone everywhere else. From what we can see so far however we do realise it it's early days. She's been booked in to have a generic testing (blood test) although not sure what they are looking for.
And booked in for an MRI. Although the waiting list is pretty long. Doctor's originally noticed her weak neck when she was about 8 weeks old. As shes got older we have Became more concerned and have cried every day more or less. We still holding out hope that she may just be lazy. However this is becoming increasingly less likely to be the case.

Secretly hoping everyone is going to tell me their child was the same and they ended out fine with no illnesses. But also hoping people can offer advice if they went through this. What did it turn out to be (what was their diagnosis) how have you copied with it all. Etc.

Were trying not to do any googling. But out main reason of thinking cerebral palsy is because she was (potential) starved of oxygen before birth.

Here heart rate kept dropping and then recovery constantly over a 24 hour period.

It would drop for around 40bpm and then 2 minutes later would go back up to 160ish drs said at the time the machine was faculty. However it was clear once she was born that she'd been in distress

Thanks you all in Advance for anything information or advice you have

OP posts:
Foreverbaffled · 27/08/2021 22:26

Sending a hand hold. My DS2 had several red flags for CP at that age so I know how terribly worrying it is. Google is also not your friend. My DS didn't have low muscle tone in his core but did have other things going on.

My understanding is though that children can have low muscle tone (core as well as extremities) for totally benign reasons too. Doesn't always have to be CP or some rare genetic issue. In fact it's pretty common from what I've heard. Is your little one meeting other milestones? Reaching, grabbing, bringing hands together, cooing, smiling etc?

It sounds like you must be under paediatric neurology. Have they given any reassurance?

00HarleyQuinn00 · 28/08/2021 07:23

She's been delayed with other milestones as well. Bit has just started looking at faces and smiling. No reaching for objects or anything like that just yet. So far only just speaking to the pediatric doctors at the moment. But not had much in the way of reassurance.

I think we were expecting drs to say everything was fine so when the starter booking all these tests it's actually worried us more.

Thankyou for your support ☺️

OP posts:
Emelene · 28/08/2021 07:28

Sending you hugs OP.

I don’t have any expert opinion but I was recently waiting for a review with concerns over my toddler’s development and it is stressful/ hard not to catastrophise.

Have you seen a paediatrician? Or is that going to be after the MRI? Do you have any idea how long you will be waiting?

My only thought is it might be helpful (I understand maybe not possible financially though) to see a paediatrician privately? I don’t think they would do the MRI privately but could assess development and at least give you an insight into what will happen next/what might be helpful while you’re waiting?

All the best to you and your family xx

00HarleyQuinn00 · 29/08/2021 21:05

We have been really lucky as already seen the pediatrician as our go referred us as an emergency appointment and they saw us 4 days later.

If it wasn't for that I think we'd definitely be going private. As the waiting is definitely extra stressful

OP posts:
Mother2princess · 02/09/2021 22:24

I have a child 14 months old who doesn't hold there head up or sit or roll or walk or stand
Said child also can't self feed gags alot remains on formula and can't eat lumps at all
Child also has been diagnosed with microcephaly severe hyptonia

We're under peads special muscle teams
Physiotherapy dieticians and lots more

HeyDuggeesFavouriteSquirrel · 05/09/2021 10:36

I'm no professional or doctor but my DS didn't hold his head up until around 4 /5 months. He was later than average with all milestones (crawled at 11 months, walked at 16 months).

I worried about autism due to missed milestones and speech delay but doctors and SLT have ruled this out and told me he just a late bloomer.

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