Not weight bearing at 1

[b18091x]

Hi all, seeking some honest advice -
My daughter who was born slightly early isn’t able to hold a seating position, bare any weight on her legs so isn’t crawling or anything at all but is now rolling and to get to where she needs to go etc. Even if she’s propped up in a highchair she struggles to maintain the position meaning starting solids has been a huge challenge

She’s severely delayed with her gross motor but her fine motor is perfect along with her social development.
We are having physio and occupational therapy and under a specialist paediatrician, they’ve said she has low muscle tone with looseness around shoulders and has hypotonia.
I’ve had 3 other children, one with Autism who was delayed in also with walking but nothing as severe as my daughters motor delays.

My question is, does this sound like more than just “bendy baby” - she’s incredibly small for her age and we’ve only just been prescribed formula due to her not gaining weight and refusing solids.

I’ve asked her occupational therapist and paediatrician what they think in terms of something more long term like a mild form of CP or maybe a genetic problem, we’ve been brushed off and told to just wait which I know is probably best as all babies develop different but it’s so hard and worrying!

How old actually is she OP? I know you’ve said 1 but are we talking literally 12 months & 1 day or 23 months and 10 days, somewhere in between?

Hi, sorry I should have specified! She’s one tomorrow :) and was born at 35 weeks

It sounds like you are doing all you can for her. You’ve done brilliantly getting her seen by physio/ Ot and a paediatrician- which given how slowly NHS moves is really impressive.

Hypermobility does run in families, is anyone else bendy? And there are possible correlations with Autism I think too? So if you have a child with autism, hypermobility is more common.

What have the doctors said about her feeding difficulties? Does she have oral motor difficulties as well as difficulties sitting up? How is her babbling/ talking coming on?

My honest opinion would be that there is something more than just a bendy baby. As you say, her gross motor skills are very delayed. Have they said when they will do genetic testing? I’ve got a friend who has just been referred at 18 months, think they like to give children a bit longer to develop and given how your DD has good social/ fine motor skills they might be waiting until the “18 month and not walking” mark to refer.

Hey,
Thanks so much for your response and honesty it’s exactly what I was looking for.

I think they were concerned about MD as by 8 months she still had head lag and wasn’t rolling or taking solids. She was in NICU for 3 weeks after birth too.
Her head control is fine now and oral motor wise SALT have no concerns and have ruled her feeding difficulties are maybe “trauma related from being tube fed” sensory or discomfort trying to prop her up to feed - were waiting on a chair from OT to help with this which is great because it’s been a nightmare trying to position her to get her stable long enough to attempt to eat.
Cognitive wise she’s fine, loads of babbling clapping etc - my son with ASD was very delayed in this area so I guess this has almost made me more worried it may not be ASD.
I think my concern is either something genetic as she appears very different to the rest of my kids, me and my partner - she doesn’t have any distinctive features but she’s pale, blonde with blue eyes and small - 1st percentile for weight since birth and we also had monitoring during my pregnancy due to her being small.
They’ve taken samples for genetic testing but have only stored them so far on a wait and see basis.
My other concern is CP as her legs are so weak, I also see some preference to one side of the body.
I know they’re probably right in terms of the “wait and see” I think I just wanted to see if anyone has a bendy baby to this extent where they’ve eventually caught up. I’m also hyper mobile but again, nothing as severe as this

My son, who is now 19, didnt weight bear at 1 years old. Loads of tests and scans later and he was diagnosed with low muscle tone and hyper mobility. He eventually started crawling, commando, bum shuffling, walking on his knees. Basically everything but walking. He eventually started walking at almost 3 years old and other than delays of things like riding a bike he was absolutely fine.

At this stage it could be so many things and because of her age hard to rule out any. I know that's not what you want to hear but the fact that you have so much intervention already will definitely help.

My eldest has a development coordination disorder formerly known as dyspraxia, born at 37 weeks but on the 0.4 percentile. There were concerns all the way through my pregnancy that she wasn't growing as she should. She had similar issues sitting in a high chair, didn't sit independently without falling over till she was 9 months, walked at 18 months. She has hypermobility in her wrists. I knew from the get go but noone listened and at age 9 she has just been diagnosed.

My advice is to get used to advocating for her. If you disagree with what the professionals tell you then be prepared to argue back. Do the exercises they suggest and if you can take her swimming I would. It has made a world of a difference in helping strengthen our dd's legs and core.

She sounds similar to my daughter who has CP. Drs don’t like to diagnose before 2 because it could be lots of other things. Even 2 is very early to be fair. We got a quicker diagnosis as she got an MRI (long story, but paediatrician was referring her twin for something else and said she may as well do them both together).

That being said, after the diagnosis the intervention plan didn’t change much- Physio, OT etc were already doing lots to support and working on areas of weakness so if you are not getting regular input from them push a bit harder (we were on 6 weekly contact at one point even before diagnosis if I remember correctly- new plan for us to do every 6 weeks).

Keep going with whatever exercises are in place- my physio said the more work you can get in before 3 the better the overall outcome will be as the brain is so receptive to new connections that it effectively reroutes and the muscles “learn” different ways to do things.

Keep going OP- it’s exhausting but worth it.

Hello, thank you so so much for the response. Can I ask in terms of your daughter’s development did she learn to walk etc and if so how long did it take you? Did she show other symptoms other than severe hyper mobility etc.
Also, I’m assuming the type of CP she was eventually diagnosed with was the Hypotonic type?

and in terms to the response above, it’s interesting as my eldest (12 now) actually was diagnosed with DCD aged 7, although had no developmental delays and walked reached motor milestones fine so when mentioned to OT they brushed this off.