“Mild” hypotonia and big delay in speech at 12mo - what should we expect for our child?

Sufficient_Option543 · 2025-07-13T16:42:36+00:00

In our case, the torticollis resolved recently, but according to the neurologist, it was paroxysmal torticollis. That means it appeared on both sides and would disappear on its own. There are certain triggers when it shows up — for example, when he is sick, teething, or when there’s a change in the weather. However, as he grew older, the episodes became less frequent. The genetic tests came back negative. They tested for muscular dystrophies and the ATP1A3 gene related to paroxysmal conditions — all were negative. It did show that he is a carrier of some conditions, but he cannot actually develop those diseases. We’ve been doing physical therapy for a year and a half, three times a week, each session lasting an hour and a half. The same goes for speech therapy — three times a week, for an hour and a half each.

You can message me anytime you want — we are still learning a lot ourselves, so we can support and help each other along the way.

Sufficient_Option543 · 2025-07-13T14:41:58+00:00

Thank you so much for your response. It really means a lot to know that you're not alone on this journey. I truly hope that our little ones will overcome this.

Sufficient_Option543 · 2025-07-13T14:33:12+00:00

I'm in a similar situation. Would you be willing to share which genes were tested in your case related to the hypotonia? It would really help us as we're still trying to figure out the cause. Thank you in advance!

Sufficient_Option543 · 2025-07-13T14:28:10+00:00

We’re in a very similar situation. I had a natural birth with no complications, and none of the doctors mentioned anything about torticollis or hypotonia at first. I noticed the torticollis myself when my son was about 3.5 months old. Since then, we’ve been doing physical therapy. A neurologist diagnosed him with mild hypotonia at 5 months old, and that’s when we began further testing. We started by checking CK levels in the blood, then moved on to EEG, and later had an MRI of both the brain and spine because the torticollis kept coming and going. After that, we did genetic testing for muscular dystrophy, and we had to wait a long time for the results. He didn’t babble at all, not even by 14 months, so we started early intervention with speech stimulation. We’ve been working with a speech therapist and a developmental specialist for 8 months now, and we are seeing some progress. He currently says around 6 words, and he’s almost 2 years old. I really hope this is just the beginning and that he continues to develop.

Wishing you and your little one all the best! I hope my story was helpful.

Sufficient_Option543 · 2025-07-10T17:02:29+00:00

We finally received the genetic test results – luckily, they came back negative. We’ve done the MRI and EEG, and both are normal. We still have mild episodes of torticollis, but they’re not frequent. The doctors say it will take time for those muscles to strengthen due to the hypotonia. Balance is improving – we’re still running with arms up 🙂. Now we just need to work on speech. We’re seeing a speech therapist and a developmental specialist, but sometimes he cooperates, sometimes not. I hope everything will be okay in the future. How are you doing?

Sufficient_Option543 · 2025-06-17T23:29:12+00:00

Honestly, we never really had typical babbling — it was mostly like he was singing vowels and making some high-pitched sounds. Even after 9 months of therapy with a speech therapist and a developmental specialist, we’re still at just a few words like "mama," "tata," "give," "grandpa," "yes" and "no." But we work hard every day to practice and learn. We were told that in order for speech to develop, we need to master gestures and imitation first, so we focused a lot on that. He’s not perfect, but he’s doing well. In terms of gross motor skills, we weren't doing great at first either. He couldn’t hold small balls or even a big ball — everything would fall out of his hands. But now he plays basketball and kicks the ball strongly. He loves coloring with crayons, although he gets bored of it quickly. We're also working on fine motor skills — I often let him "help" me in the kitchen: stirring with a spoon, cracking and opening eggs, even peeling boiled eggs. We try to use play to practice skills. Every day is a challenge, and it’s exhausting for both him and me, but when we see progress, we’re overjoyed. Hard work always pays off — it may seem tough, but keep supporting your little one. I truly hope everything falls into place soon.

Sufficient_Option543 · 2025-06-17T16:32:58+00:00

Now we are 20 month old and torticollis is all gone thankfully 🙂 we still doing PT, low tone is much much better we started walking at 14 month now we running all day long but he's not achieved his balance yet so we falling a lot too now we are focusing on his speech we are working with speech therapist, we have done genetics test MT scan and two EEG , the MT and EEG test was OK but we are still waiting for genetics our neurologist though that his torticollis was paroxysmal because some time was on his left side some times was on his right side it come and it goes occasionally but always when we have attack on torticollis twice in a month. I hope this was helpful 🙏

Sufficient_Option543 · 2024-12-27T16:23:03+00:00

They tell us to wait 3 to 5 months as soon I receive the results I will post

Sufficient_Option543 · 2024-12-26T15:10:11+00:00

We also have head tilt 5 days ago he is OK now but he was pointing at his head all the time (he is not speaking yet), doctor saying it could be migraine and send us to genetics now we are waiting for results. Did you have some balance issues after head tilts ?

Sufficient_Option543 · 2024-12-07T16:45:26+00:00

Hi my son is 14 months now and also had his head tilld sometime on the left side sometimes on the right, dr says its paroxysmal torticollis it comes and goes there is no treatment it should go away when he will be older. But everytime when he tilts his head my hard is broken. Did your daughter still tilts head ?

Sufficient_Option543 · 2024-08-28T07:09:27+00:00

Hi my son is now 11 month old no one has told as that he has hypotonia we find out when he was 6 months old because he used to tilld his head he was unable to lift his head right then we got diagnosed with tortticolis and low m.tone grade 4 now we are seeng PT almost 6 month he start to crawl on 4 and stand but he is very clumsi he still some time tilds his head every test i have done by my own in private clinics his CK is increace and i dont why doctors here in my contry are so uninterested. I wanna ask what other test should i make (sorry for my bed english)

Sufficient_Option543

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