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If your baby has hypotonia (low muscle tone)...

Did you ever find an underlying cause?  DD has another neuro check up next month so I am hoping we might get some answers then.  Thanks.
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Re: If your baby has hypotonia (low muscle tone)...

  • NJLHNJLH member
    No...we've been to a neurologist and developmental dr, had MRI, bloodwork, and EEG....no noticeable causes (they still want to do other tests). Of course, I'm glad there's nothing wrong so far, but I wish I understood why she's so low tone.
  • No, we don't know why.  She walked at 22 mo and has been rapidly catching up with her peers since (she is now four.)  We did a few basic blood tests, but that is all.  We didn't want to be too obtrusive if it would not help her.
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  • NJLHNJLH member

    ***Texmommy***...if you're reading this...what age did your LO crawl?

  • DS has had a genetic array, MRI, seen a developmental pedi and pediatric neuro, and had an EEG with no results. He still has delays and mild low tone with no explanation.

     I hope the neuro gives you some answers.  

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  • Kate had isolated low tone in her hips.  She was on the very late end of normal for all her gross motor milestones (crawled at 11 months, pulled up at 15 months, walked at 18 months).  She's now almost 3 and still has some delays, but we're attributing those to a sensory issue with her vestibular system rather than the muscle tone issues they thought it was earlier.  She was in PT for a long time and now gets OT once a week.
  • Genetic. 3 deletions on chromosome #1.
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  • We finally got an answer at 24 months with our genetic testing. DD has Triple X syndrome (an extra X chrom) which is a highly variable syndrome. Many girls don't even know they have it, but there is a segment of girls with hypotonia (DD is one).
  • Christopher has a genetic syndrome, 16p11.2 duplication syndrome and autism.  Matthew has (as of now) ADHD but we are going to be testing him for the same syndrome.
  • Right now they are saying it was caused by prematurity by DS was *only* 6 and 1/2 weeks early, so it's certianly possible that there is a second underlying cause.  He is doing well in PT (he receives special instruction through EI as well for a global delay), so if that continues, we might just leave the cause as prematurity.
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  • imageNJLH:

    ***Texmommy***...if you're reading this...what age did your LO crawl?

    She was almost 14 mo. It was pretty scary for me.  I can tell you though that it can have a very happy ending.  She is doing well now.  I do notice that she tires easier than some kids, though.

  • Yes, she has Prader-Willi Syndrome.  She's considered "mildly" low tone, but it varies with PWS.
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  • Our second son (11 months) also has Prader-Willi, which was determined through a methylation study and FISH test. His hypotonia was described as "severe." He couldn't hold up his head until 8 months old and now we're working on sitting.
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