To worry about my child’s delayed motor skills?

[Charlieuniform]

Son, 4, has quite a significant delay in his motor skills. He can’t keep up with peers, can’t run as fast, still crawls up the stairs, can’t walk far without needing to rest in his pram. Can’t jump much, or stand on one leg. Teacher has noticed he has a bit of a immature gait too, and although not as bad, his fine motor skills aren’t great. He has a speech delay too.

Paediatrician is ordering blood tests and referral to physio, but these things are taking months - haven’t even got an appointment for bloods yet.

My mind’s obviously went to the worst - possible muscular dystrophy? But what other possibilities could there be? I worry a lot and my mind is in overdrive but I want to be prepared for anything.

DCD? I’d ask for an OT referral, my dd was like this at 4 and she has a dx of DCD. She didn’t have a speech delay though.

It varies by area, I expect both OT and physio should be able to pick up DCD? You can always ask the physio about that.

I’m just terrified it’s something like muscular dystrophy. I did ask about OT but paediatrician wanted to refer to PT instead as he does seem to have weakness is his legs. It’ll be months before even blood tests though never mind PT.

Has he aways had delayed motor skills, or has there been a regression? I really wouldn't go straight to muscular dystrophy straight away. Even congenital MD has progressive muscle weakness, and what you are describing sounds more like a developmental delay?

Speak to HV and chase up all referrals

He met all his early milestones like sitting and crawling, walked at 18 months. I suppose it’s more than he’s never progressed.

It was similar with my dd - she was low end of normal with crawling and walking, talking, but as time went on nursery we’re saying she was slow, she had an awkward gate, couldn’t walk far without exhaustion etc etc.

gait not gate! Kept tripping and falling too. I realised when she was 4 my friend’s 2 year old had better motor skills than dd and that’s when I referred her.

He sounds a bit like DD who was diagnosed with mild cerebral palsy around this age. Met all her milestones like your DS, but then was always wobbly and tired very easily with an unusual gait. No speech delay in her case, but was very dribbly for a long time, and speech problems are common with CP.

CP is much more common, so more likely, than muscular dystrophy - worth considering. Especially if he had any kind of trauma at birth, although there can be other causes (sometimes there is an undetected mini stroke in the womb). It’s not progressive unlike MD.

Have to say though that we were dismissed by the GP and community physio - probably because she is very much on the mild end of CP and had met her milestones. We ended up having to go private to get a diagnosis (confirmed by MRI). I suspect there are quite a few kids out there who have CP at this level who never get it diagnosed.

Thank you @minipie who did you go through for private MRI

@minipie which did you specialist did you see? My dd did have her cord wrapped around her neck, I have often wondered about the mild CP/motor skills overlap.

We saw Dr Maria Kinali (private paediatric neurologist) at the Portland in London. She was excellent.

We were lucky to have health insurance via our work which paid. Without the insurance I think it would have been c£250-300 for the consultation and a lot more (can’t recall exactly but thousands) for the MRI. However Dr Kinali was pretty certain it was CP just from watching her move around at the consultation, so the MRI was only confirmatory rather than diagnostic iyswim.

Thanks @minipie , at such a young age did they need GA to perform the MRI?

If you are concerned about the NHS snail pace and various inadequacies (and goodness knows it is inadequate), take a cheap flight to central / eastern Europe with a list in hand of all the tests you need.
Pay 20/30 quid for each, walk out with all the answers you need a few hours later.
We are fortunate to have family abroad but in the past I've taken time of work for essential treatment in countries where I didn't know anyone. I don't rely on the NHS at all anymore (I have a severely traumatic history with the NHS, but every appointment just reinforces how utterly inadequate it's become).

The trip won't be the funnest 48 hours of your life but it will be massively reassuring and you'll be staggered to meet doctors who actually sit down and take the time to listen to you rather than going through lists of "guidelines" and getting you to answer yes/no questions.

Thank you. I’m not even sure what I need tbh. I know I need his CK analysis blood tested, and paediatrician recommended a chromosome test.

Yes it did need a GA which was nerve racking but fine.

@Commonsense22 i would even pay for some testing done in UK but have no idea about private healthcare for paediatrics in the UK or where to get private bloods. Was looking at getting private insurance for him but I guess it how would be a pre existing condition now and not covetable.

If you just want blood tests and know what you need, there are now quite a few private clinics around who can order blood tests - you’d need to check which ones will do children’s bloods as it can be tricky. Google private child blood test near me.

However if you wanted to see a private paediatrician or paediatric neurologist anyway, then I’d go straight to them and they can order the blood tests - and they may have other suggestions too.

@Charlieuniform you're approaching this in a good way.
You're right, getting bloods or a paediatrician apt in the UK is complicated even privately without referral.
in most countries, every child has a paediatrician. You can book appointments with this paediatrician at will without referral and they will see you for as long as needed, ie 1h appointments are common. They will generally see you with less than a week's notice, even the very same day.
There are labs in every neighbourhood, you can go in when you want with your prescription or list and for most things the test results are in by lunchtime. For more complex tests it can take a few days but you won't be left hanging.

Even if you had private coverage, you wouldn't get to see a paediatrician on a regular basis. I would honestly try to establish the diagnosis abroad and then once you have one, you can get funnelled into the appropriate NHS specialist care and that's when things start to get a bit better.

My DC had a language delay. We got a referral to a language specialist (9 months wait) who got us a referral to an Occupational Therapist (another 9 months wait), and that was an eye opener. We have not got a diagnosis yet (another wait) but the OT taught us exercises to help DC. He thought it might be Dyspraxia

CP Mum here too.

Any dominance or weakness in one side or the other? My DS has a right side weakness.

@Diablocircus no, it just seems to be his legs that are weak.

CP with legs affected is called diplegia - one side weakness is hemiplegia.

Do his knees turn towards each other as this is quite common with diplegia? Also do his calves/ankles seem tight eg does he tiptoe?

Thank you @minipie I’ll have a look at Hemiplegia. His muscles don’t seem tight, if anything he’s quite floppy. No turning inwards - his walk and gait are generally more like a 2 year olds if that makes sense?

It would be diplegia for legs weakness, but it doesn’t sound like classic diplegia. CP may be a red herring, if so, apologies.

I think in your shoes I would try to see a paediatric neurodevelopmental consultant or paediatric neurologist. The paediatrician you saw, was he/she a general paediatrician? Can they refer you to one of these specialists?

Your paed recommended chromosome testing, are you having that done along with the blood tests?

Re blood tests - the way it works for us, we don’t get an appointment, the NHS paediatrician orders the tests and we turn up at the hospital blood test centre and get them done there (they can find the ordered tests on their system). Just to check are you sure you need to wait for an appointment?