October 2013 Moms

Low Tone

LO was diagnosed with low tone a few weeks ago and referred to the state therapy program for this. He will be 8 months in a week and a half and can't sit up. He does really well with kicking, jumping in the jumparoo, rolling, etc. but he just can't sit at all. He can barely tripod sit, and he can't catch himself at all when he falls. I see all of these posts with your LOs sitting, pulling up, walking, and I can't help but feel even more defeated (but I am happy for you all!). We do tummy time A LOT per the pedi's rec, and we always try to help him with supporting him very low when he is in the sitting position, it just isn't seeming to get any better at all. Anyone have experience with this? Any suggestions? I feel like I should be doing something else or should have been doing more. I just feel sad that he is so far behind in this respect. 
Lilypie - (z9ZY)

Re: Low Tone

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  • Thank you both.
    Lilypie - (z9ZY)

  • DS didn't roll until after 7months when some babies on here were rolling at 2/3 months.  I think every baby develops at their own pace.  If I were you I would just always encourage sitting so LOs little muscles can keep building to then he can evenly sit on his own.
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  • BMom99BMom99 member
    Both of my nieces have myotonic muscular dystrophy and are super low tone. They were both delayed in every milestone but now at 4 and 5 they are running and doing everything (gross motor wise) that all the other kids their age are doing. It just took them a little longer :)


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  • hlb622hlb622 member
    @BMom99 I haven't "seen" you around lately! Hope all's well.

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  • BMom99 said:

    Both of my nieces have myotonic muscular dystrophy and are super low tone. They were both delayed in every milestone but now at 4 and 5 they are running and doing everything (gross motor wise) that all the other kids their age are doing. It just took them a little longer :)

    I hope your nieces' mom know about the Muscular Dystrophy Association's summer camp for kids with muscle diseases, age 6 and up! There is one in each state. I spent six summers at that camp as a counselor, and the campers make friends for life. So much support and a chance to do everything kids do at summer camp, but specially adapted to kids with MD.
  • Inn2Inn2 member
    I think you are doing all you can and getting that early intervention. You are an awesome mom and he will hit those milestones when he is ready. Jace has no interest in crawling or pulling himself up. He likes to roll to everything and some days he chooses not to sit up much. I try very hard not to worry, figure he'll do it when he is ready, ped isn't worried, and we still try and practice. I also remind myself he was a month early, so maybe that is the "delay".
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  • My little guy has low tone also. He can sit up really well but he can't put weight on his legs and can't roll over. But he's great with his hands and very verbal. He has a little girl in his class at school that's his age and she's crawling and pulling up and everything so it sometimes makes me feel like dang my LO is far behind but I kinda like it because I can put him in one place and he still is my little baby and I know he will do everything on his own in his own pace! Don't feel bad momma you're doing a great job!!
  • Thank you all for the kind words and support...great start to my morning :) here's hoping the therapy works! 
    Lilypie - (z9ZY)

  • good luck! keep us posted!
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  • BMom99BMom99 member

    hlb622 said:
    @BMom99 I haven't "seen" you around lately! Hope all's well.

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    Oh my gosh, hi! @hlb622 !  You are right, I have been super busy.  I teach in a special ed high school and my department is in charge of graduation so I have not had any time to bump at work.  Since I am mobile at home this is the first time I saw this notification! 

    Today is the last day of school so I am super excited to have some extra downtime and get back on here some.  Our school is 11 months so I go back June 30 but at least it will be half days for the summer :)

    Things are great otherwise though. DS started crawling this week and pulled himself up to a standing position last night *gasp*!  Thanks for thinking of me and I hope you guys are doing well too!!


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  • BMom99BMom99 member
    Both of my nieces have myotonic muscular dystrophy and are super low tone. They were both delayed in every milestone but now at 4 and 5 they are running and doing everything (gross motor wise) that all the other kids their age are doing. It just took them a little longer :)
    I hope your nieces' mom know about the Muscular Dystrophy Association's summer camp for kids with muscle diseases, age 6 and up! There is one in each state. I spent six summers at that camp as a counselor, and the campers make friends for life. So much support and a chance to do everything kids do at summer camp, but specially adapted to kids with MD.
    I don't know if she does but I will definitely share the info, thanks! 


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