Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Hi Jody: I am wondering the same thing. The things us RSS parents have to worry about~ L.O.L.! Hannah's head is in the 95-100% while her body is off the charts in the other direction! We are getting ready to start gymnastics and I am hoping that this will increase her muscle tone everywhere (including her neck). Jordan (Mommy to Hannah RSS 34 months 22.5lbs, and 32 " ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Hi Jody, I know just what you mean on this one! Olivia's head was always covered in cuts, scrapes and bruises and still is for the most part, right now it's mostly her glasses that do the damage to her temple area as she always seems to fall with them landing first! She was a severe " head banger " from the time she could roll over (15 months) because she was so frustrated over knowing everything that was going on but her little body just wouldn't do what she wanted it to. We have very few episodes of that latley though thank goodness! As for neck strengthing and balance we did a lot of therapies to get reflex moves to kick in. While in a sitting position on the floor hold their hands or chest and tilt them back slowly while doing a silly rhyme or song and repeating a few times to get some muscle build up. Olivia really liked following objects while keeping her body still, just moving her head and neck, when she got older we changed the " game " to finding certain things around the house without moving her body at all but she sure would have to give her neck a pretty good work out find everything! I'm not sure how helpful these ideas will be for you since Liam is almost 3 but I can dig through all of our PT papers to see what else there is that I've forgotten, just let me know. Leah, mom to 9 and Olivia 4.5, RSS, OI, 19lbs!, 33 " , lactulose, senokot, zantac, cyproheptadine (periactin) > Hi > As one of the main characteristics of RSS is normal head size with > small body, I just wondered if anyone else has problems with constant > head injurys?? > Liam has had 2 quite bad knocks to his head this week, one could of > had sutures but we opted to steri strip because he was so distressed. > Both fall were quite accidental on he slipped off a bottom step, the > other tripped over a chair leg. On a normal child Im sure they would > not of done the damage Liam did, his head just comes down like a lead > brick, even if he gets his arms out to try and stop. > Liam also has pallid episodes, where he stops breathing till he > blacks out then his body kicks in and starts breathing again, not a > nice experience, and Im sure it only happens bacause his head is so > heavy. > Does any one do extra physio or any other ideas on how to control > these big heads, short of a helmut Im at a loss. I dont want to > curtail him running around. > Have a good weekend > Jody(mum to Liam 9.5kg 78cm 3 next week, and Cam(notRSS) 5) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 Jody, I remember other moms reporting that their kids had these episodes of stopping breathing and passing out. I have not heard of this lately, but it has been reported. Don't know if that helps, but at least you know. Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 's head circumference is not so disproportionate as it is in many RSS kids, however, this does not stop him from falling and banging himself on the head and face all of the time. His dad is always worried that someone will think we are abusing him! And his back is almost as bad. He has no meat to protect him so he is always bruised up and down his spine and over his pelvic bones as well. This does not even slow him down. Kids! Conny, 's great-aunt > Hi > As one of the main characteristics of RSS is normal head size with > small body, I just wondered if anyone else has problems with constant > head injurys?? > Liam has had 2 quite bad knocks to his head this week, one could of > had sutures but we opted to steri strip because he was so distressed. > Both fall were quite accidental on he slipped off a bottom step, the > other tripped over a chair leg. On a normal child Im sure they would > not of done the damage Liam did, his head just comes down like a lead > brick, even if he gets his arms out to try and stop. > Liam also has pallid episodes, where he stops breathing till he > blacks out then his body kicks in and starts breathing again, not a > nice experience, and Im sure it only happens bacause his head is so > heavy. > Does any one do extra physio or any other ideas on how to control > these big heads, short of a helmut Im at a loss. I dont want to > curtail him running around. > Have a good weekend > Jody(mum to Liam 9.5kg 78cm 3 next week, and Cam(notRSS) 5) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Sorry Jody, I was away and only just read both your messages. I've sent you a reply to your private address. ne > Does any one do extra physio or any other ideas on how to control > these big heads, short of a helmut Im at a loss. I dont want to > curtail him running around. > Have a good weekend > Jody(mum to Liam 9.5kg 78cm 3 next week, and Cam(notRSS) 5) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Hi Jody, My son Owen is 5 and yes as a little one he fell allllll the time..kind of like a tumble..he would go down head first. Its not so bad anymore..but he does have a permanent bump on his left side of his forehead. He is also asymetrical so that doesnt help..he falls on his left side all the time. As for what you can do..honestly i used to joke that i was going to put a helmet on his head all the time..but of course i couldnt. I simply just watched him. I dont think there is alot we can do unfortunately. Owen rss, 5 yrs old, 26 lbs, 37 inches and assymetrical... will be getting leg lengthening surgey within the next year. > Hi > As one of the main characteristics of RSS is normal head size with > small body, I just wondered if anyone else has problems with constant > head injurys?? > Liam has had 2 quite bad knocks to his head this week, one could of > had sutures but we opted to steri strip because he was so distressed. > Both fall were quite accidental on he slipped off a bottom step, the > other tripped over a chair leg. On a normal child Im sure they would > not of done the damage Liam did, his head just comes down like a lead > brick, even if he gets his arms out to try and stop. > Liam also has pallid episodes, where he stops breathing till he > blacks out then his body kicks in and starts breathing again, not a > nice experience, and Im sure it only happens bacause his head is so > heavy. > Does any one do extra physio or any other ideas on how to control > these big heads, short of a helmut Im at a loss. I dont want to > curtail him running around. > Have a good weekend > Jody(mum to Liam 9.5kg 78cm 3 next week, and Cam(notRSS) 5) Quote Link to comment Share on other sites More sharing options...
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