15 M Old with Hypotonia

Hi! I have a 15mo old daughter who was recently diagnosed with hypotonia and diminished reflexes. Some background- at 6 m she was sitting up, at 9 mo she was rolling, at 12 mo she wasn’t crawling yet so we started PT and she quickly picked up the 4 pt crawl, now at 15 mo she has just started pulling to stand, cruising, walking while holding on to finger tips. All other development (fine motor, verbal, social) is on track according to our EI program.

The PTs that I have talked to seem to think this hypotonia is something some kids have and she will just need to work harder on muscle development…the neurologists seem to think it is a really major sign that she has an underlying condition (she is currently undergoing blood work).

This whole process has been so overwhelming for me. I have no clue what to expect…will she start walking soon? Will it be years? Will she be able to participate in sports?

I am wondering if you can provide an idea for how long milestones might take for a child with hypotonia. What sort of things can I encourage at home to help her? Do you have any suggestions for trying to prepare for a diagnosis for my daughter?

I find your Instagram page so helpful because you address hypotonia. Prior to this I had never even heard of it before. I don’t know whether this is just something she will adapt to or a sign of worse news to come. Thank you did your advice!

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Thank you for reaching out. We have worked with so many families that have all the same questions and concerns. I wish there was one set answer. The good news is that she is showing progress and is now standing and cruising. With regards to it being indicative of something else going on we have seen it go both ways. Some kids just have low tone for an unknown reason. Some end up finding out it is part of another diagnosis. As a PT we just really work with you guys to help her continue to progress.

With low tone, she will need to continue to build her strength and in the beginning things will take more repetitions to learn. I have a post on low tone that may be helpful. Here is another one that talks about low tone and growth spurts.

For home I would encourage activities that engage the whole body like crawling. You can also do crawling on cushions, crawling up stairs. Encourage cruising all over including using walls/vertical surfaces. Standing and playing but add in sit to stand to get more strength in! Hope some of these ideas are helpful and let me know if you have more questions!

We also had these instagram posts with core strengthening ideas:
https://www.instagram.com/p/CE-MjVdhBS7/?utm_source=ig_web_copy_link
https://www.instagram.com/p/CFAaEmVBgbj/?utm_source=ig_web_copy_link
https://www.instagram.com/p/CFNPYq9BATR/?utm_source=ig_web_copy_link
https://www.instagram.com/p/CFPsOzlBg7V/?utm_source=ig_web_copy_link

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Thank you for your response! The pages that you linked describing what low tone means made a lot of sense to me and I will definitely keep trying to push the core strengthening exercises. Hopefully she will gain more strength with time. :heart:

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Yes she will. Just be patient and keep finding whole body activities! She’s lucky to have you!

Im so glad to hear that your daughter picked up 4 point crawling relatively easily and then progressed onto other skills within only a few months, that’s great news! Tone is really difficult to give a specified prognosis because there is such a range and motivation and interest in physical activity can play such a huge role in how far a child can go.

The good news is that many kids who have lower tone do play on the playground well, do play sports and more. Others don’t enjoy it because its harder for them, or they get tired quickly.

Im sorry you’re going through a stressful time. When there are unknowns with our children, it’s easy to get in our heads. My professional and mom advice is to take it one milestone at a time, look at progress as success because it really is. If she’s starting to cruise and walking with hand holding, that’s fantastic. Keep up with the PT, and if you can get OT that could also be beneficial as low tone can impact fine motor skills like coloring and writing later on so building a strong foundation now can do so much for her for the future.

Here are some posts that might help you:
https://www.instagram.com/p/CDxionSB76D/?utm_source=ig_web_copy_link

https://www.instagram.com/p/CDfM7jIhccu/?utm_source=ig_web_copy_link

https://www.instagram.com/p/CDAPZ-whFNb/?utm_source=ig_web_copy_link

good luck and keep us posted!

I want to post just to give you hope especially now that you’re in PT and OT.

Both my children have Osteogenesis Imperfecta (brittle bone disorder). My six month old with it has hypotonia (and hyper mobility). We have been in PT/OT from Day One, however, and thus been doing interventions and exercises his entire little life. PT/OT has made a world of difference in his development. He may be low tone but he is high strength.

Starting PT later it may just take some time for your child to get used to all the exercises and new ways she is moving her body and working her muscles. Remember that low tone children have to work SO much harder to achieve physical gross motor milestones than normal or high tone children. That and then they have to maintain them much more frequently. I’m sure with PT/OT your child will develop on their own timeline and curve.

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Thank you for sharing this with me! It definitely helps to hear that other children have been able to help compensate for hypotonia with muscle strength. :slight_smile:

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