Hi Mum's,
I have stumbled across this while I'm googling about hypotonia. It has been rather cathartic to read though all your responses and smile and nod in some parts as our experiences are similar.
My 20 month old son was diagnosed with hypotonia a few months ago. I wasn't hugely concerned then because he had been walking for a few months, it was only diagnosed because I noticed his ankles rolled inward so badly they touched the floor, and he was falling down more than he was walking. As I said I wasn't so concerned because he wasn't too far behind the other kids. 4 months later the disparity between what his peers are capable of and what he is capable of is getting wider. Despite the fact he's been walking for about 6 months, he still has the gait of a very new walker. He gets tired very easily, very floppy. I'm finding it is getting harder to hold him because he is getting bigger, yet doesn't have the strength to grip on to me. We have 1 step to get into our house and he doesn't have the strength to pull himself up! Its the little everyday things that I see him struggle with and it breaks my heart!
When I was pregnant he had excess fluid on his brain which seems to be linked (my husband works in research in public health and he's come across studies which seem to support this). He also has extremely hypermobile joints which doesn't help.
It sounds like some of you have much more difficult journey's. We have just gotten him a spot for hydrotherapy which we will start in 2 weeks. I feel as though he has deteriorated a bit the past few weeks so I am really hoping the hydrptherapy helps.
I am so proud of him for trying so hard, even though it is difficult. It is hard to hear all the "he'll never be able to...." and I am unsure as to how to approach this. I don't want to wrap him in cotton wool, but the reality is that his physical structure means he struggles and allowances need to be made. I am also thinking years ahead about school. Will he be picked on?
Sorry, I am a bit everywhere, I was just relieved to come across people who understand. What are the updates at the moment? How are your kids going? What is working? What isn't working? Would love to hear from you!
Zhen x
I have stumbled across this while I'm googling about hypotonia. It has been rather cathartic to read though all your responses and smile and nod in some parts as our experiences are similar.
My 20 month old son was diagnosed with hypotonia a few months ago. I wasn't hugely concerned then because he had been walking for a few months, it was only diagnosed because I noticed his ankles rolled inward so badly they touched the floor, and he was falling down more than he was walking. As I said I wasn't so concerned because he wasn't too far behind the other kids. 4 months later the disparity between what his peers are capable of and what he is capable of is getting wider. Despite the fact he's been walking for about 6 months, he still has the gait of a very new walker. He gets tired very easily, very floppy. I'm finding it is getting harder to hold him because he is getting bigger, yet doesn't have the strength to grip on to me. We have 1 step to get into our house and he doesn't have the strength to pull himself up! Its the little everyday things that I see him struggle with and it breaks my heart!
When I was pregnant he had excess fluid on his brain which seems to be linked (my husband works in research in public health and he's come across studies which seem to support this). He also has extremely hypermobile joints which doesn't help.
It sounds like some of you have much more difficult journey's. We have just gotten him a spot for hydrotherapy which we will start in 2 weeks. I feel as though he has deteriorated a bit the past few weeks so I am really hoping the hydrptherapy helps.
I am so proud of him for trying so hard, even though it is difficult. It is hard to hear all the "he'll never be able to...." and I am unsure as to how to approach this. I don't want to wrap him in cotton wool, but the reality is that his physical structure means he struggles and allowances need to be made. I am also thinking years ahead about school. Will he be picked on?
Sorry, I am a bit everywhere, I was just relieved to come across people who understand. What are the updates at the moment? How are your kids going? What is working? What isn't working? Would love to hear from you!
Zhen x