https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Mon, 18 May 2026 05:12:39 +0000 https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2910378 Mon, 17 Feb 2020 17:31:37 +0000 Chuckles 2910378@https://boards.hellobee.com/ <p>@Mrs. Starfish: of course! I do think continuing with PT has really helped him, especially with confidence in doing physical activities like climbing and jumping of steps. I like that our PT asks about what he is doing in gym class so that she can help with him gaining strength and endurance while practicing the motor planning of specific activities. Also, our PT works out of a gymnastics place, so he gets to use the pit, bars, beam, etc. He thinks he's doing gymnastics (though he does know it's PT) and loves it. </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2910363 Mon, 17 Feb 2020 13:07:12 +0000 Mrs. Starfish 2910363@https://boards.hellobee.com/ <p>@magnolia: Thank you so much for the advice and commiseration! Unfortunately we still have not figured out why she has low tone - nothing runs in the family, and our surrogate had a normal healthy pregnancy and delivery with her. I guess it's just one of those things? Like you suggested, when we were in Chicago we used to do in-home PT but as she got older they recommended treatment at a facility because they have more gear and equipment to push her. I sure hope you get some answers on your end. I agree that it's really frustrating to see such slow progress. I just try to remind myself that I'm doing everything for her that I can possibly do, and over time I'm hopeful we will see that it was worth it. Still, I will forever curse orthotics and how challenging it is to get shoes to accommodate them...</p> <p>@MrsADS: Thank you so much for chiming in and sharing your experience with your son! To be honest, I never even thought of things like sitting in a desk and this makes me feel that continued therapy is the right choice until a therapist tells me it's unnecessary. I am sooooo not an expert in this area, that much is obvious to me!!</p> <p>@Chuckles: No, no, I don't mind this answer at all and I really appreciate your perspective because your son's experience is pretty much exactly how I forecast Audrey to be as she ages. We got her in this morning for a new PT evaluation and the therapist's comments paired along with your perspective at an older age have pretty much convinced me to keep up the therapy. Thank you! </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2910268 Sun, 16 Feb 2020 08:53:57 +0000 Chuckles 2910268@https://boards.hellobee.com/ <p>I haven't posted for awhile, but I wanted to chime in because I have a 6.5 year old with low muscle tone. He started walking at 19 months once he got the SMO shoe inserts and has been in PT weekly since 11 months. Though for the last 2 summers, he's taken off from PT because he was so active at camp.<br /> If you aren't looking for it or he's not trying to do a specific gross motor activity, you'd never know he has any issues, which is great. He can generally keep up with his peers on the playground. But... he still has pretty poor endurance. He is starting to notice that he can't keep up in gym class on longer sprinting type running. And he's not even close to being able to do the monkey bars, which most of his friends can do by now. I think it will always be an ongoing struggle for him and we'll be staying in PT for quite awhile so that he can keep working on things like monkey bars, jumping rope, etc. I know that's probably not the answer you wanted, but he's happy and doesn't get teased about it. I think he'll just be a kid who chooses other activities besides sports when he's older. </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2910265 Sun, 16 Feb 2020 07:57:51 +0000 MrsADS 2910265@https://boards.hellobee.com/ <p>Following. My 21mo has been in PT since 6 months and OT since 12 months. He is pretty profoundly low tone and floppy, tires very easily, falls easily. He started walking around 19-20 months but still constantly uses a lot of compensatory mechanisms to do his ADLs.</p> <p>We are working on achieving skills but also increasing endurance. Low tone kids (once older) struggle with stuff like sitting at a desk and working once in school. </p> <p>We also see a neurologist every 3 months. We did a bunch of labs to rule out serious issues like muscular dystrophy. We may do genetic testing, but right now we're just monitoring. His only diagnosis at this point is developmental delay. </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2910257 Sat, 15 Feb 2020 18:55:29 +0000 magnolia 2910257@https://boards.hellobee.com/ <p>@Mrs. Starfish: hi! I don’t post very often and I’ve been taking a break from the internet but I just came on to search low tone since I’ve been feeling down about my baby’s progress in physical therapy. </p> <p>Is it possible to get home base services where you live? My 9 month old is getting PT twice a week at home, which helps me also learn the exercises to work with her. </p> <p>I also work in a school and it may be worth looking into occupational therapy (OT) in case the low tone is affecting fine motor skills. OT in the school setting can address writing, using scissors and daily living skills like zippers and snaps. We also have PT in our school but mostly<br /> For kids who have some kind of neurological disorder that affects their ability to use the stairs or ambulate safely in the school environment</p> <p>Just curious if you ever found out what caused the low tone and how delayed she was in meeting milestones. My 9 month old still can’t sit at all independently. I feel like her progress is so slow and it’s really hard </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2909155 Tue, 28 Jan 2020 08:36:35 +0000 Mrs. Starfish 2909155@https://boards.hellobee.com/ <p>@Bluemasonjar: Thanks! Based on your comment, I reached out to the girls' school to see if they have any partnerships where therapists come to the school for treatment. It sounds like at a minimum they'll be able to guide me to a better PT center than we've had. </p> <p>@annem1990: This is such helpful perspective and it has really got me thinking if ongoing PT is necessary in this case. Her preschool teacher says that she can see a difference in her physical abilities versus the other children and we can see it when we compare her to her same-age sister but still it's not extremely severe. Lots to noodle on here - thanks again!</p> <p>@Mama Bird: Thank you! Yes, similar here with regard to her being able to do what the other kids are doing but taking three times the effort. I try to keep her active with physical activities (swim class, ice skating, dance class, etc) and I wonder if that and her preschool physical activity might be enough at this point. Something for me to think about... </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2909135 Mon, 27 Jan 2020 18:48:56 +0000 Mama Bird 2909135@https://boards.hellobee.com/ <p>I guess it really depends how severe it is, so I don't know how useful our experience would be.... My son had gross motor therapy weekly from about 7 - 12 months, and some fine motor after that (but IMO would have been fine without the latter). He went from being so floppy I couldn't imagine him walking to pretty much caught up in a few months. He did tire easily when walking for a long time, and is in some ways still weaker then his peers (but you can only tell when he tries contact sports). It's like he can do what the other kids do, but it takes three times as much effort to get there. So I guess he'll always need to do some kind of sports to stay in shape. </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2909092 Mon, 27 Jan 2020 11:34:17 +0000 annem1990 2909092@https://boards.hellobee.com/ <p>Obviously there are vast differences I severity and I don’t want to minimize anyone’s experience, but I just wanted to share my experience as a former primary teacher. Almost every cold who was evaluated young for delays was diagnosed with low muscle tone. I almost never saw a difference in them vs other kids once they hit school. It made me sort of think that so many kids would be “diagnosed” with this if they were to be evaluated by a PT. My feeling is that it’s often over-diagnosed and worries parents over nothing. Only a tiny portion of those who had this as a diagnosis in their IEP’s actually had a motor issue long term. I’m certainly not specialized in that area, but that’s just been my experience as a teacher and it made me sad that these poor parents were so worried about this when an outsider would see zero difference between them and any other kid. </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2909091 Mon, 27 Jan 2020 11:07:35 +0000 Bluemasonjar 2909091@https://boards.hellobee.com/ <p>My DS receives PT (among other therapies) and it will likely continue for the rest of his life. Following to see if anyone else has insights or suggestions for how to manage.</p> <p>Our children's hospital just closed 6 out of 9 of their outpatient facilities as of Jan 1. Our therapist actually moved to another provider and is now able to see DS at his daycare which is great for now but may not be possible as he gets older. </p> https://boards.hellobee.com/topic/treatment-time-for-low-muscle-tone#post-2909089 Mon, 27 Jan 2020 09:57:11 +0000 Mrs. Starfish 2909089@https://boards.hellobee.com/ <p>I was wondering if anyone has had a kiddo diagnosed with low muscle tone and how long they maintained therapy? </p> <p>Our little Audrey was diagnosed with low tone and overpronated feet around 18 months and has been in physical therapy since then (she's currently 3 and a half). We are having major issues with the center where she gets PT in that they keep losing therapists, leaving Audrey with no treatments for months at a time. While researching new PT treatment centers, it has gotten me thinking how long she will need this treatment anyway. Anyone have any experience with this? </p> <p>I realize that every case and child is different, but I'm still curious what others have experienced in terms of PT as kids age and advance in to longer school days where PT therapy will become harder with the schedule anyway. </p>