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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To worry about my child’s delayed motor skills?

40 replies

Charlieuniform · 30/01/2024 17:12

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.

OP posts:
Skiphopbump · 01/02/2024 11:26

I would get him assessed by an occupational therapist. They will be able to assess and give advice for both home and school to help him. A private assessment will be far more thorough than an NHS one in my experience.

Google child occupational therapist and I’m sure you’ll find someone in your area.

My DS has dyspraxia which affects motor skills.

Charlieuniform · 01/02/2024 12:01

@minipie she was a general paediatrician but their specialty was neuro disability. Yes having chromosomes testing alongside general blood tests.

she said she would send a letter with an appointment for blood testing but unfortunately they’re rather full at the minute.

OP posts:
Charlieuniform · 01/02/2024 12:01

@Skiphopbump i did ask for a referral to OT but she felt PT would be better?

OP posts:
MargaretThursday · 01/02/2024 12:19

Have they checked for hypermobility?

In one of my dc's reception class there was a child who had bad hypermobility and sounded much as you describe. They could walk but it was painful and tiring for them as it took more concentration because their knees could easily go the wrong way iyswim.

Charlieuniform · 01/02/2024 12:22

@MargaretThursday I took him to the GP a few months ago when I first started getting worried and I mentioned hypermobility. She give him a quick check and declares he’s just lazy 🙄

OP posts:
MargaretThursday · 01/02/2024 12:24

Charlieuniform · 01/02/2024 12:22

@MargaretThursday I took him to the GP a few months ago when I first started getting worried and I mentioned hypermobility. She give him a quick check and declares he’s just lazy 🙄

Does he w-sit? Google for pictures if you're not sure what that is. It's a typical way of sitting on the floor for a child with hypermobility.
If so, firstly discourage him from doing that (it's bad for him) and secondly take a photo to show the paed.

Charlieuniform · 01/02/2024 12:28

No he doesn’t sit like that. Although when he does sit down he struggles to get back up, he has a positive Gowers Sign.

OP posts:
ohtowinthelottery · 01/02/2024 12:35

Muscular Dystrophy is an hereditary condition. Is there anyone in either parent's families who have the condition? Sometimes it is undiagnosed in the older generation until a child in the family receives a diagnosis (unless it is the more severe type) but it is often there - people just didn't understand why the fell over a lot or had general muscle weakness.

Koalaslippers · 01/02/2024 12:40

Hypermobility and low muscle tone cause my DC to present with similar gross motor skill level to yours.

Legoroses · 01/02/2024 12:45

Wow. I can't believe the bloods aren't being done yet. When we had similar, I think the bloods were done within 2 months. That will give you the answer on muscular dystrophy, which is what they wanted to rule out with my son, who sounds quite similar.

He was late to walk, has what I now know to be low muscle tone and hypermobility. Probably dyspraxia but no one diagnoses it here anymore, which is mad. He's autistic - and his autistic sibling is also hypermobile with low muscle tone.

He is slow on stairs still, is more prone to fall off things, but compensates a lot and is much more careful than other 8 year old boys. He has fine motor issues like with writing and buttons. What you describe could be hypermobility and low tone, and v probably is. I would chase the blood tests. Good luck.

dubmimi · 01/02/2024 12:54

My son has dyspraxia (DCD) and hyper mobility & struggles with motor skills. He is worse with fine motor than gross motor skills. He also had/has a speech & language delay.
Recently found out through genetics testing he has 22q11.2 deletion syndrome (also know as DiGeorge syndrome).
I think get on a waitlist for developmental paediatrician & perhaps organise an OT assessment privately in the meantime as sounds very like Dyspraxia. A paediatrician will need to sign off the diagnosis if it is dyspraxia so worth been on the waitlist.
& ignore the doc that called him lazy, Jesus Christ what is wrong with some gp's! 🤬

Charlieuniform · 01/02/2024 12:56

@ohtowinthelottery no, no family history that I know of, but after researching it seems 1 in 3 cases is from a spontaneous gene mutation.

@Legoroses thank you, he does have a sibling with dyspraxia (not diagnosed because they don’t diagnose it around here too) so probably is dyspraxia, I just worry a lot!

OP posts:
Charlieuniform · 01/02/2024 12:59

@dubmimi he has seen a paediatrician who has advised blood tests and chromosome testing , but wants to refer him to PT rather than OT. I may ask for a OT referral from school to cover all bases.

OP posts:
minipie · 01/02/2024 13:20

It sounds as if you already have the right kind of paed in that case! I think all you can do is chase things along and try not to panic. It is frustrating and worrying I know. Is your paed also referring to SALT?

dubmimi · 01/02/2024 13:46

Good, it's seems your paed is already in place & organising referrals etc. the frustrating part is waiting. We waited over a year to see developmental paed & then genetics chromosome testing took 12 weeks until we got results as had to be sent to Germany. Now waiting cognitive assessment, updated speech assessment, next OT block & adhd assessment. And clinic appointment in 22q clinic. Seems my life is in "waiting" mode for the last couple of years! & some of them are private assessments but still long waitlists!

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