r/Hypotonia

My daughter is 21 months and can’t walk or stand independently. Doesn’t crouch down to pick up toys and can’t walk holding 1 hand. She can pull to stand and cruises a ton while holding furniture or her walker. She can walk when we hold both hands. She has low muscle tone and hyper mobility. She’s been in PT since 18 months. She’s seen an ortho who did a hip xray that was normal. We’re waiting on neurology blood work to come back with results.

She was born at 36 weeks at only 4 pounds 13 ounces. She hated tummy time and would cry every time until she was 4 months+. She’s hit all other milestones timely and has been pulling to stand since 11 months. However, that’s where it’s stalled. She’s also very chatty, says almost 200 words and makes full 3-4 word sentences. She’s very social and so bright. I have no concerns in that aspect of development.

Beyond her hyper mobile joints and low tone,she’s extremely cautious and very anxious when she feels unsupported for even 1 second. I’m trying to figure out what more i can do to support her ? Are there any other specialists that she needs to see?

I’m just super worried that she will never walk independently. I just need some advice and encouragement. I want to hear about success stories with your late walkers.

My preschooler has light hypotonia. He's been in treatments since he was a baby, but has always been able to catch up on gross and fine motor skills with the proper treatments, sometimes even achieving more than what's expected for his age.

There are some small delays we're working on right now, but he's always been able to participate in all daycare and preschool activities, and he has never expressed feeling different than peers.

I've always explained "we're going to play with (therapists' names)," but I don't want hypotonia to be this big secret that comes out one day or have him overhear a conversation with a doctor in one of our appointments and potentially make scary stuff up. I prefer to be open and honest in an age appropriate way, and hopefully in an empowering way, but...

How do I explain hypotonia to him?

Hi everyone. My son has Benign Congenital Hypotonia we have done a bunch of genetic testing with the geneticist and our neurologist and he has no genetic condition causing his hypotonia. He also has been in physical therapy and feeding/speech since 3 months old.
His hypotonia has improved in his legs, arms and torso but still affecting his neck, and tongue.
He is 22 months and he won’t walk. He will walk against furniture like holding on to the couch, table, or wall. But he won’t walk holding onto a push walker, holding someone’s hand, or if someone is holding his torso or onto him, he will instantly drop to his knees.
For talking he only says dada, and baba. His tongue is big and has very low tone so it makes it difficult to talk and even eat. He can’t eat anything that isn’t puréed (and he’s very picky so right now he only wants plain oatmeal)
When did your children or you with hypotonia start walking? He has never taken one step unassisted or not against a couch or wall before. I feel so alone and want to help him and we have weekly therapies some weeks biweekly. And we work with him every single day throughout the day. I’m just feeling lost!