hypotonic one year old

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

Hi Ladies, i have a 16 month old son who too has been diagnosed with hypotonia and his ped is waiting until he is 18months to do furhter test to see if there are any underlying issues/disorders etc. i have found that there is very little support or information sharing out there except for one or two pages like this so i have started a facebook page so that parent that are going through the same thing can keep in touch and share information, advice and vent. if you would like to join, its called "hypotonia support".
i would love to hear from you all as im still learning about how my child will be impacted and the more advice support there is the better!

My daughter born last Feb. 17 was diagnosed by the Philippine-NIH with an unknown genetic order "46 xx add x qter" (she seems to be the only one in the world right now after inquiring from the US National Library of Medicine and GARD). She is now more than 8 months and has head lag though she can move her head sideways. She can flip to her sides but fails in her attempt to a crawling position. I believe she is hypotonic or partly hypotonic. As of now, we still cannot afford more specialized test for her thus we look for answers from people who have experience with hypotonic babies. My question is, at 8 months, with head lag, can we start to give our daughter some solid food? What diet do hypotonic babies need? Please email your answers to: noel_pmm@yahoo.com

Thank you,
Noel

I have an almost 9 month old who suffered brain damage and a Stroke at birth.
She only started holding her own head up a few months ago, and still hasn't rolled or sat unassisted.
She has hypermobility syndrome and was also diagnosed as hypotonic.
We saw the neurologist yesterday though; and he seems to think her muscles are quite strong so is now wondering whether there's a neurological reason she's not developing her gross motor skills.
If you try to stand her on her legs she just bows them up under herself.
It's interesting to read about other people going through similar situations, and gives me that she might get up and moving in the near future!