Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 We were also told by a geneticist that our daughter very possilby had RSS. Turns out they were totally wrong. She has severe apraxia, Sensory Dysfunction, hypotonia, and still unexplained low weight though she is now gaining. At that point the apraxia and DSI were undiagnosed and I feel they were just searching for any answer since she had already been seen by nutritionist (sp) and by neurologist and no one could give us any answers. She also had a bone scan at 12 mths showing her bone age to only be 3 mths. Since all that her bone scans are now within the considered normal range. She is still small (22lbs at age 3.5) but she now gains slightly at dr visits as opposed to losing weight at her checkups. Hannah _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Hannah, How do they diagnose this condition? Your daughter sounds just like my daughter MiKayla only she also has a sleep disorder. She turned 5 last month and weighs just 38/39 lbs soaking wet, but she is very tall for her age. Unfortunately that doesn't help when she's developmentally delayed. She's been blood tested up at our CDRC for a zoodle of things but she didn't have any of the stuff they were looking for. Is this tested by blood? Oddly with her, this past month she's been seeking out the stuff that she hasn't ever been able to do before and she's insisting on doing it " by myself " . So she's now crossing balance beams at the playground, climbing up rope ladders and other very complex gross motor activities that she's never been able to do. Last Friday while alternating feet going down a large staircase she looked up and said to me, " Look Mommy, I can do it. I'm not sick anymore. " I about died...not sure where she came up with being sick but truly most of her life she's been a tired, frail child. I began the EFA regimen with her roughly a month ago. Until this moment, I didn't connect it to this gross motor skill gain but hmmm, it sure does line up. She's also talking a lot and I'm beginning to understand much more of what she is saying. Thanks, Tammy ----- Original Message ----- From: Hannah B We were also told by a geneticist that our daughter very possilby had RSS. Turns out they were totally wrong. She has severe apraxia, Sensory Dysfunction, hypotonia, and still unexplained low weight though she is now gaining. At that point the apraxia and DSI were undiagnosed and I feel they were just searching for any answer since she had already been seen by nutritionist (sp) and by neurologist and no one could give us any answers. She also had a bone scan at 12 mths showing her bone age to only be 3 mths. Since all that her bone scans are now within the considered normal range. She is still small (22lbs at age 3.5) but she now gains slightly at dr visits as opposed to losing weight at her checkups. Hannah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 I definitely saw a correlation with my son's gross motor skills and starting EFAs. I also notice he seems to have more stamina. This is in line with the research cited re: dyspraxia which is incoordination and physical motor planning. --- In @y..., " Tammy Sowell " <Tammy_S68@m...> wrote: > Hannah, > > Oddly with her, this past month she's been seeking out the stuff that she hasn't ever been able to do before and she's insisting on doing it " by myself " . So she's now crossing balance beams at the playground, climbing up rope ladders and other very complex gross motor activities that she's never been able to do. Last Friday while alternating feet going down a large staircase she looked up and said to me, " Look Mommy, I can do it. I'm not sick anymore. " I about died...not sure where she came up with being sick but truly most of her life she's been a tired, frail child. I began the EFA regimen with her roughly a month ago. Until this moment, I didn't connect it to this gross motor skill gain but hmmm, it sure does line up. She's also talking a lot and I'm beginning to understand much more of what she is saying. > > Thanks, > Tammy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 Thanks for the reply. It is good to know that I'm not nuts for seeing this dramatic change in her gross motor skills. Even strangers at the playground were congratulating her before they heard about all of the OT she's gone through over the years. She still gets tired although she is able to play longer than ever. She's gone over a year without a trip to the ER for some sort of injury resulting from her gross motor problems. She broke a facial bone when she was 3 from tripping while walking, actually it looked like her leg gave out on her but she landed right on her face. We had JUST arrived at the zoo too...it was sad but thankfully they gave us a free pass to return. :-) Tammy ----- Original Message ----- I definitely saw a correlation with my son's gross motor skills and starting EFAs. I also notice he seems to have more stamina. This is in line with the research cited re: dyspraxia which is incoordination and physical motor planning. Quote Link to comment Share on other sites More sharing options...
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