Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi , My b/g twins will be turning 8 this March!! Tara, who has Ds , has low muscle tone, "hypotonia" from head to toe. Tara didn't walk until 22 months. Tara is also "small" and early on, didn't grow as fast as I would have liked, and I remember, thinking something else was "up" with her as well. Nothing else was "up" with her, just her own development!!! I would talk to your pediatrician, before making appointments with specialists. Good Luck, Gail, Mom to... Bobby 12 1/2, Jillian 10, & Tara (Ds) 7 1/2 extremely weak legs Hi Everyone, My son is almost 2 years old and he is very weak from his knees down. His calves and feet are tiny and haven’t grown much since last winter. He is pretty weak in general, but the rest of his body has been developing slowing and he’s been growing stronger. His therapists have suggested that I have him screened by a pediatric neurologist to see if there is another issue beyond the DS. I am contacting his pediatrician for a referral today. I was wondering if any of you have had a similar experience, or if you have any recommendations. We live in upstate New York. Thanks, lisad@....com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi , Our girls just started walking independently this past April. They turned 4 yrs this past September. They just got their third set of orthotics; this set controls the foot even more than the last pair. They are in 18 mos size pants; can wear some 24 mos size pants as far as length, but most fall off due to the pant waist being too big for them. The pediatrician is a good start; or a developmental pediatrician or a geneticist. The geneticist we see, Dr. Rosenbaum, is where I would go first since he is so knowledgeable about kids w/ DS. I was wondering if was bearing weight on his legs yet. Does he crawl or pull to stand? The girls worked on bearing weight on their feet forever! They had a stander and what ultimately helped them was having them stand up against a walk together and sing a song, like " Wheels of the Bus " etc. They weren't allowed to sit (collapse really!) until they finished the song. The girls also use scooters (flat boards w/wheels) to play with. We do races around the house on our bellies, or sitting going forward or aft. I wonder if a scooter might help strengthen his lower legs in the sitting position. Or if pulling to stand might engage any of the lower leg muscles to wake them up. Do you do any massage therapy? Hmmm... so many questions... Anyway, we got our scooters at abilitations.com. Personally, I wish I had purchased two for me and 1 for each kid; we got three. I hope it's just a matter of customizing physical therapy for . Hope this helps. Regards, Granata Mom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 2 1/2 yr son Gail Vanhouten wrote: > > Hi , > My b/g twins will be turning 8 this March!! > Tara, who has Ds , has low muscle tone, " hypotonia " from head to toe. > Tara didn't walk until 22 months. > Tara is also " small " and early on, didn't grow as fast as I would have > liked, and I remember, thinking something else was " up " with her as > well. Nothing else was " up " with her, just her own development! !! > I would talk to your pediatrician, before making appointments with > specialists. > Good Luck, > Gail, Mom to... > Bobby 12 1/2, Jillian 10, & Tara (Ds) 7 1/2 > > * extremely weak legs > > Hi Everyone, > > My son is almost 2 years old and he is very weak from his > knees down. His calves and feet are tiny and haven’t grown much > since last winter. He is pretty weak in general, but the rest of > his body has been developing slowing and he’s been growing stronger. > > His therapists have suggested that I have him screened by a > pediatric neurologist to see if there is another issue beyond the > DS. I am contacting his pediatrician for a referral today. > > I was wondering if any of you have had a similar experience, or if > you have any recommendations. We live in upstate New York . > > Thanks, > > > > lisad@.... com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Hi , Sara (DS) 12, took her first steps at 23 months and was walking shortly after that. Marcia Mom to Lucas 16, Sara (DS) and Gabe 12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Hi , My 17-month old son has DS and hydrocephalus. My physical therapist tells me that most children with DS don't walk until they are 2 or 3 years old. I have an " exersaucer " for so that he can exercise his legs. He has watched his brother bounce up and down in it and he has started to do the same thing. Is your son getting up on all fours yet? can do it for a short time. I'd be interested to see what others in the group say about when their child first started to walk. Blackwood mom to (3), (DS) and (17 mos.) > > Hi Everyone, > > > > My son is almost 2 years old and he is very weak from his knees down. > His calves and feet are tiny and haven't grown much since last winter. He > is pretty weak in general, but the rest of his body has been developing > slowing and he's been growing stronger. > > His therapists have suggested that I have him screened by a pediatric > neurologist to see if there is another issue beyond the DS. I am contacting > his pediatrician for a referral today. > > > > I was wondering if any of you have had a similar experience, or if you have > any recommendations. We live in upstate New York. > > > > Thanks, > > > > lisad@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Adrienne is 2 and started walking at 18 months. It has taken her a while to perfect her skills and walk on uneven surfaces. Cyndy mom to Madeline (9), Adrienne (DS) & Kayley (2) > > > > Hi Everyone, > > > > > > > > My son is almost 2 years old and he is very weak from his > knees down. > > His calves and feet are tiny and haven't grown much since last > winter. He > > is pretty weak in general, but the rest of his body has been > developing > > slowing and he's been growing stronger. > > > > His therapists have suggested that I have him screened by a > pediatric > > neurologist to see if there is another issue beyond the DS. I am > contacting > > his pediatrician for a referral today. > > > > > > > > I was wondering if any of you have had a similar experience, or if > you have > > any recommendations. We live in upstate New York. > > > > > > > > Thanks, > > > > > > > > lisad@ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Gretchen walked about a week or two before her 2nd birthday and she could not have been happier with herself. That was such a milestone for Gretchen, because with no expressive communication, she finally had control over something and had a way to get what she wanted or away from a situations she did not want to be in. Inga Mom to (9) and Gretchen -ds- & a (5) -------------- Original message from "twinmom625" : -------------- Hi ,My 17-month old son has DS and hydrocephalus. My physical therapist tells me that most children with DS don't walk until they are 2 or 3 years old. I have an "exersaucer" for so that he can exercise his legs. He has watched his brother bounce up and down in it and he has started to do the same thing.Is your son getting up on all fours yet? can do it for a short time.I'd be interested to see what others in the group say about when their child first started to walk. Blackwoodmom to (3), (DS) and (17 mos.)>> Hi Everyone,> > > > My son is almost 2 years old and he is very weak from his knees down.> His calves and feet are tiny and haven't grown much since last winter. H e> is pretty weak in general, but the rest of his body has been developing> slowing and he's been growing stronger. > > His therapists have suggested that I have him screened by a pediatric> neurologist to see if there is another issue beyond the DS. I am contacting> his pediatrician for a referral today. > > > > I was wondering if any of you have had a similar experience, or if you have> any recommendations. We live in upstate New York.> > > > Thanks,> > > > lisad@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Brett walked at just before 2 years old. He never really crawled, just one day he was up and off! A walking push toy helped him a lot. Mom to Laurel 19, Niles 17, Brett (ds) and 9 -----Original Message-----From: Multiples-DS [mailto:Multiples-DS ]On Behalf Of i.wronski@...Sent: Wednesday, December 13, 2006 12:08 PMTo: Multiples-DS Subject: Re: Re: extremely weak legs Gretchen walked about a week or two before her 2nd birthday and she could not have been happier with herself. That was such a milestone for Gretchen, because with no expressive communication, she finally had control over something and had a way to get what she wanted or away from a situations she did not want to be in. Inga Mom to (9) and Gretchen -ds- & a (5) -------------- Original message from "twinmom625" <lblackwoodsbcglobal (DOT) net>: -------------- Hi ,My 17-month old son has DS and hydrocephalus. My physical therapist tells me that most children with DS don't walk until they are 2 or 3 years old. I have an "exersaucer" for so that he can exercise his legs. He has watched his brother bounce up and down in it and he has started to do the same thing.Is your son getting up on all fours yet? can do it for a short time.I'd be interested to see what others in the group say about when their child first started to walk. Blackwoodmom to (3), (DS) and (17 mos.)>> Hi Everyone,> > > > My son is almost 2 years old and he is very weak from his knees down.> His calves and feet are tiny and haven't grown much since last winter. H e> is pretty weak in general, but the rest of his body has been developing> slowing and he's been growing stronger. > > His therapists have suggested that I have him screened by a pediatric> neurologist to see if there is another issue beyond the DS. I am contacting> his pediatrician for a referral today. > > > > I was wondering if any of you have had a similar experience, or if you have> any recommendations. We live in upstate New York.> > > > Thanks,> > > > lisad@...> Quote Link to comment Share on other sites More sharing options...
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