Physical delay

[Sunisshining12]

Hi all, I’m looking for opinions on my 15mo DS who is behind with physical development. We’ve not had a diagnosis from the hospital and the next appt is July (18mo). I’m driving myself crazy not knowing what’s wrong.

Concerns -
very floppy/Hypotonia low muscle tone
Poor head control, lag
Never rolled
Never crawled or shuffled
Unable to stand/weight bear on legs
Unable to go from lying down to sitting/vice vers/other postions
Double jointed arms
Torticollis in neck - always looks to one side which has resulted in flat head

He can sit unaided, can reach for objects, feed self, fine motor skills are good, babbles, good eye contact & communication, happy, sleeps well

Birth - full term, emergency c section due to heart rate converns. Very sleepy baby had to wake to feed, massive difficulties BF, tongue tie & high palette, mild jaundice.

Me - first child, previous 2 mc, negative blood type, hypothyroid

Tests done - blood, ck muscles and mri scan all came back normal

Anyone experienced remotely anything similar? The most noticeable thing about him is the low muscle tone/floppiness and that he’s not mobile. When he’s sitting playing you wouldn’t know there’s anything wrong.

It’s killing me not knowing what’s going on & what the future holds

Have you had any genetic tests done yet?

Is he having any Physio/ot etc? That will help. Sorry it sounds like you've been left up in the air. How awful for you.

My daughter was similar (she’s 14 now), she has a diagnosis of hypertonia and hypermobility, she also has suspected dyspraxia. She was a late walker, late to sit up, always flipped forward in the pushchair and high hair, she’s had a lot of physio and OT.

How is she now? She struggles to walk very far, gets very painful legs and hips, her hips and legs turn inwards, she struggles with sport and walks with a gait. She was also diagnosed with ASD at the age of 4.

Thanks for responses, no genetic tests or physio yet.

Lovemusic, from what I understand, HYPOtonia is floppy muscles & HYPERtonia are rigid stiff muscles, is that right?

I’ve been googling for hours, and he seems to fit the criteria of hypotonic cerebral palsy, everything mentioned is him. But of course I can’t self diagnose from google can I!

Ok so. You need support. You need to contact your health visitor and demand that they sort out everything. Failing hat the Gp

Have contacted both HV and GP. They have referred him to a community paediatrician, does this sound right?

Still under care of hospital too but no follow up appt for 3 months to see if he’s made any progress.

Hi OP. Sounds really stressful.

One of mine totally failed the 1 year check stuff for gross motor. He was referred to the community pead, and they checked lots of things like vitamin d. He's fine now, just hypermobile.

Yes they will coordinate everything. See if you can bring the appt forward

Hypertonia is fluctuating muscle tone (so I was told). For dd she can be floppy or stiff, she has no reflexes in her legs and gets a lot of pain, she walks very stiffly which has caused problems with her hips, yet her arms are very floppy (she struggles to push doors open, has low muscle tone). I asked about CP and was told because dd had a normal birth they would not look into it, she didn’t have a normal birth, labour was long and there was a panick near the end due to her heart rate dropping but none of this is in the notes. She has most of the symptoms of mild CP.