Hypotonia

[Sunisshining12]

Hi, I’m looking to see if any of you have children with Hypotonia.

I have a 15 month old who has never ever rolled, crawled, or weight bearered on legs - he can’t stand even when aided.

My LO is very ‘floppy’ and has no muscle resistance. He literally is like a rag doll. Eating, sleeping, fine motor skills & comminication so far seems fine.

My main concern is that when on his tummy he cannot lift his head, not even a tiny bit, let alone push up to look around. I know babies of 4-5 months that can do this.

We have been passed from pillar to post, his blood tests & MRI was ‘normal’. So no diagnosis just that he has hypotonia.

We are now on another 3 month waiting list for the Paediatrician.

Where do I go from here? Have any of you experienced anything similar & if so did you get a diagnosis?

I just want to know how to help my LO & what the future holds.

He is my first & I am fed of people saying ‘hes just lazy & spolit’. The fact he cannot even lift his head slightly up at 15m let alone crawl or walk worries me.

Sorry for the rant

[Sunisshining12]

And sorry for spelling/grammar - autocorrect!!

[Sunisshining12]

Forgot to add that he sits unaided absolutely fine (if i sit him there he will stay there & play fine but cant transition to any other position, same when laying down)

[Olympiathequeen]

Some children have benign hypotonia which just means there tone is unusually low. If you can get a private physiotherapist (private because you’ll wait forever for nhs referral) to give you a routine of exercises to help build muscle strength and improve tone.

It’s something babies can grow out of or can always fatigue more easily. Most outgrow it.

[Frizzbeol]

Hi Sunisshining. I can sympathise with you here and understand how worried you are feeling. My son was diagnosed with mild hypotonia as a toddler after he was referred due to his flat feet - very worrying time. He never crawled (just got around by pushing himself along whilst laying on his back) and was a late walker as well as a floppy baby. He is now 16 and will never be a fast runner and will always need orthotics for support. He is also not as strong as his peers. Otherwise he is fine - well liked and has loads of friends. The only effect on his life is that he is at a slight physical disadvantage that is only really evident when he takes part in competitive sport (sports day was dodged as much as possible)! As pp said it doesnt have to be indicative of a wider problem. Hope this gives you some reassurance.

[Sunisshining12]

Thanks for the replies. We already see a physio but he said there’s not much we can do to get him rolling/crawling/standing as he’s just so floppy.

At what sort of age did your little one hit milestones?

[QueenofmyPrinces]

It must feel like you’ve been abandoned with nobody willing to help

I’m surprised the physio team haven’t been more help - you’d think there’d be something they could do to help strengthen his muscles?

My current baby crawled at 6 months whereas my first son didn’t crawl until he was about 11 months.

My friend has a son and at 18 months he wasn’t weight bearing or crawling and she was so worried about him. She was told that his abilities were within the normal range and they’d only do a referral if he reached 2 years old and still wasn’t walking. However, she kept asking her GP to do a referral and they did when he was about 20 months old. He was referred to physio but by the time the appointment came round (about 2 months later) her son was finally weight bearing and toddling about in the way that new walkers do.

It’s all just so varied. You are understandably concerned though and I hope you get some answers soon

[Sunisshining12]

Thank you Queen, because his bloods & MRI were clear I guess they’re not too worried about his delay.

It’s hard to sit back & think oh he’s just a late developer, it’s always at the back of mind what if there’s something else wrong. I just find it upsetting that he can’t lift his head up on his front & get about. He’s very tall as well.

We’ve seen the GP, Paediatrician, Neuromuscluar Dr & now referred back to the Paediatrician. I’m just hoping he will improve over the next couple of months. Thanks

[KingIrving]

What about his diet? Hypotonia can be caused by deficiencies, either because nutrients are absorbed from food or because they are lacking from the diet.

I have a genetic condition and keep uptodate with all the research on it, even for issues I don't have.
Carnitine is often issued for those young children having hypotonia. You might want to research it and ask your GP about giving it a go . You said you did blood test, have you tasted the carnitine levels by any chance? And the Q10?
If you haven't, go back to the GP and ask for it. I know it is distressing for the child but it could really make a difference.

Here are a couple of articles

www.ncbi.nlm.nih.gov/pubmed/3578191
www.ncbi.nlm.nih.gov/pmc/articles/PMC3285456/
devdelay.org/newsletter/articles/pdf/356-how-nutrition-impacts-muscle-tone.pdf

[KingIrving]

nutrients are NOT absorbed from food