Hypotonia

[shelley22]

Hi,

I was wondering if anyone has any babies with hypotonia (low muscle tone) ?

 

[clara123]

Hi, my lo has mild low muscle tone as he's hypermobile. Hes had physio and hydrotherapy for nearly a year now for his hypermobility and has improved so much x

 

[sun]

My son is 2.5 and has hypotonia and hypermobility. The hypotonia has affected his gross motor development, and his speech & eating as well. They thought it would be worse than it turned out to be though - once he started getting mobile, he improved so much. x

 

[FunkyVine]

Kimberley has that I think - her neck and shoulders are particularly floppy. She has Trisomy 21 so it is common. The floppy head is really tricky as I need to make sure I have a good grip on it at all times. Yesterday the health visitor picked her up without supporting her head and it flopped right back. I was a bit concerned but Kimberley seemed to cope - I probably worry a bit too much! Looking forward to Physio for her.

 

[shelley22]

We have known that Oliver has had it since he was born, he is 8 months old , he still cannot hold up his head properly so cannot sit up, roll over etc. He has also been diagnosed as visually impaired his eyes physically are fine but his brain isnt processing the images (although I know he sees some things on and off) and recently diagnosed with epilepsy.

I dont really know why Im posting, I suppose to find out if he will be able to do all the things he should be doing. He has physio, portage and we will soon be starting hydrotherapy. Hes improving, just very slowly. Im finding it very difficult to be around other Mums with "normal" babies especially if they are younger than Oliver. Would just like some positivity...

 

[Tegans Mama]

Massive hugs shelley, it's hard when your child is "different" to others I don't have any advice, tegan is hypertonic (she has very very still muscles from the waist down) not hypotonic but I hope you can get some advice

 

[TaraMum]

Hi everyone, my 14 year old has Hypotonia along with Hypermobility Syndrome, Aspergers Syndrome, Cortical Visual Impairment and Dyspraxia. I knew he wasn't right from the get go as breastfeeding was an absolute battle and I had to stop after a few weeks. The good news is that hypotonia can be helped with gentle exercises and a good physiotherapist (though I know here in the UK the NHS is stretched to breaking point and waiting lists are long) My son wasn't diagnosed with hypotonia until he was 3 so not sure what can be done for babies, but keep pressing your health visitor to get you referred to the appropriate agencies. I know how worrying it is *hug*

 

[sun]

My son was diagnosed with hypotonia/hypermobility at 18 months. He was moderately late with his milestones, but has improved loads! He started rolling/crawling and being able to get himself into sitting at around 13 months. He could sit on his own (but would still fall over on and off) before a year though. His head control was quite late too - though I can't actually remember exactly when it was now??? Strange since I was obsessed with worrying about him at the time. Head control is still weaker than typical - if you pull him up from sitting he still can't keep his head in line with his body and it flops back.

He has actually surprised us as the dev.peds didn't really have much of a guess when or if he would catch up, but he has been doing so well. For him getting mobile was the big thing - once he could sit/reach and support some of his weight he started improving so much. With him the more he could do, the more he wanted to do - so that was working his muscles so much more than when he was completely immobile.

Lots of his big issues revolve around eating and speaking though!

 

[shelley22]

Thanks all, nice to hear some positivity about the fact that it could improve. It can be hard work when you do all the exercises advised by the physio and supporting him in all way possible and its a slow procress of improvement. Glad to know there is a positive outlook x

 

[Caezzybe]

My son Logan has hypotonia, hypermobility and Down Syndrome. He is 2 years and nearly 5 months old and not walking yet because of the hypotonia. He recently started cruising. He first crawled on all fours a month before his second birthday and sat alone on his first birthday. I don't know if that information is useful or not?

 

[FunkyVine]

My son Logan has hypotonia, hypermobility and Down Syndrome. He is 2 years and nearly 5 months old and not walking yet because of the hypotonia. He recently started cruising. He first crawled on all fours a month before his second birthday and sat alone on his first birthday. I don't know if that information is useful or not?

Hi Caezzybe - I've not been on this site for months, but I saw your post in my email inbox! I remember you posting when I was pregnant with Kimberley. She is nearly 1 now, and a wonderful girl with T21. She is amazing and I don't know why we worried about having a baby with Down's!! She had heart surgery in May and is doing so well !! I am a frequent visitor to Future of Down's and I think I may have seen 1 piccy of Logan on there. Anyway thought I'd pop in and say hello. I tried to come on here more at one point to encourage the mums' with high Nuchals and going for amnio etc. But I found it a bit too much. Future of Down's is so positive and supportive.

 

[shelley22]

Sorry for not replying sooner, thanks for your info.

Sadly my son actually passed away last July from a variety of problems x

 

[sun]

Sorry for not replying sooner, thanks for your info.

Sadly my son actually passed away last July from a variety of problems x

I'm so so sorry for the loss of your beautiful boy.

 

[FunkyVine]

Shelley 22 - So sorry for the loss of your beautiful Oliver Joseph. Bless him, he must have fought very hard. My heart goes out to you and your family. Clare xx

 

[shelley22]

Thanks ladies for your kind words. He definitely did put up a fight, if you want to read his story the link in my signature that tells his story xx