r/Hypotonia

Hi all, I have a beautiful 1 year old daughter that has kept us on our toes this last year. I'd like to share her journey to see if anyone has/had similar experiences and hear your child's outcomes, and I'd love any advice you may have for me. It has been pretty isolating.

She is in 4 weekly therapies, sees GI, ENT and a neurologist. Neurologist ran a full genetic screen that came back normal and our daughter did have an MRI which came back normal except for the following: "Oval 4 mm focus increased T2 signal mid right corona radiata. Small focus of presume nonspecific gliosis right periventricular white matter." The neurologist has stated multiple times that she thinks this finding is "incidental" and that this finding does not explain the issues our daughter is having.

She was born full term, regular pregnancy, but she did go into brief distress right before I started to push (once I started pushing, she came within minutes). Her heart rate would also drop during my hard/fast contractions, but would come right back up - nurse said this was normal. My daughter had good APGAR scores. She was born sunny side up and did swallow a lot of amniotic fluid that she coughed up. She latched and had a normal "golden hour" I noticed a few hours later that she seemed to be "buzzing" and the nurses said that was her nervous system regulating. Again, no one was concerned. Later in the day, I noticed she wasn't latching as good and she also had issues finishing a full serving of formula. We later realized this was because she had a weak suck reflex since birth. Once we were discharged, feeding issues continued but she gained weight.

The rest of her journey: -Low tone in mainly core and neck, did not sit without support until 9 months, but with PT she has caught up on gross motor by 12 months. Her movements are jerky. -Slept constantly as newborn due to exhaustion from eating and continues to be a high sleep needs at 1 year old now. -Silent reflux and GI issues since month 1 (food intolerances as well). -Diagnosed with dysphagia. -Uncoordinated swallow which was the cause of her silent aspirating. Aspirating has slowly improved with very slow flow nipple (repeat swallow study is in 1 month). -Feeding delays, she's just now on mashables and only lasts about 10 minutes in high chair -She used to have "tremors" when she was overstimulated, but those have improved and rarely happen now. - OT reported that she is a little delayed cognitively - didn't wave until 11.5 months and is just now consistently responding to name and having joint attention at 12 months. - She does not seem to be able to focus on much of anything, and is still not "correctly" playing with toys, I call her a spider monkey bc of how fast and jerky she moves now. She is also a little delayed in fine motor skills.

I believe we may have an ADHD diagnoses in her future. Her therapists and the neurologist don't think autism is a factor. Our main hurdle is getting her to pass a swallow study so that she can start drinking water, and we are also hoping she progresses in her solids journey.

I'm thinking of going to another hospital/neurologist for a second opinion. It would be a 3 hour drive so it's not as easy of a decision to plan out. Any advice? Any similar situations out there? It's been a hard year, and I constantly feel like I'm missing something for my daughter even though she is in many weekly therapies and sees multiple doctors. Thank you for reading.

Hi everyone!

My 16 month son was diagnosed with low muscle tone yesterday, due to issues with walking. I am completely on board with getting him PT and ankle braces but have some concerns.

He held his head up early, sat early, crawled at 6 months, and was standing at 8 months. Has anyone else’s child had similar symptoms and later onset of motor issues?

His only gross motor concern is extremely slow progress with walking. He can take a few steps but his endurance is poor and he prefers crawling.

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!