Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Vicki My son has SMED. He did not sit up until he was almost one and half year old which was good because his orthopedicist (Dr. Ain) wanted him to lay flat as long as possible to keep his back straight. did not roll but he was wiggling around on his side and he was scooting around on his butt until he learns how to walk at age 2 1/2. Just let him lead you in physical development. He will tell you when he is ready. PS...I did not know much about strength the neck to help him holding his head. I hope others will be able to give you information about this one. SED My son has SED and is going to be one year old. He is not sitting rolling or holding his head up. I have been taking him to a physical therapist and she is incouraging me to do exercises to strengthen his neck and is also wanting to get a molded seat for him. I need some info from other parents on if I should push him or if he is developing physically like other children with SED. Thanks for any help you can give me. Vicki ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 I have a question what does SED stand for and what does SMED stand for? I am still very new at this, and do not mean to sound dumb, but I don't know....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 >I have a question what does SED stand for and what does SMED stand for? I am >still very new at this, and do not mean to sound dumb, but I don't know....... > >------------------------------------------------------------------------ >Click here for a chance to win airfare to Vegas for you and 20 friends, >$15,000 and a suite at Bellagio for New Year's from Expedia.com. Or >win 2 roundtrip tickets anywhere in the U.S. given away daily. >1/5296/9/_/77518/_/961556597/ >------------------------------------------------------------------------ I think you mean SEMD. Please go to http://www.lpaonline.org and choose " Types and Definitions. " You'll find some information as well as some very useful links. =========================================================== Dan Kennedy Internet services coordinator Little People of America, Inc. http://www.lpaonline.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Ok, I need some info here. What are the issues associated with raising a child with probable SED dwarfism? We are being given the possible opportunity to adopt a little 3 1/2 yo who has this type of dwarfism but need to know what to look for, what to expect, in order to make the right decision. What are the long term issues associated with SED? Thanks. Apryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Alyce -- Rumor also has it that it's an SED woman that is in the lead for Bill Bradford's most perfect dwarf woman discussion. However, he hasn't been forthcoming with any names yet. Rose who really is enjoying seeing how hot that water is that Bill keeps getting into. In a message dated 3/27/2006 11:56:19 AM Eastern Standard Time, afwtexas@... writes: Apryl, Check the lpaonline medical section for details, but generally: possible C1/C2 instability, scoliosis, knee/hip problems (and joint replacements later), myopia and possible retinal detachment. We're also brilliant and a delight to be around. And modest. Alyce :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Thank you a... et all. I understand cervical instability...had recent fusion of c5 & c6. Apryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Apryl, Check the lpaonline medical section for details, but generally: possible C1/C2 instability, scoliosis, knee/hip problems (and joint replacements later), myopia and possible retinal detachment. We're also brilliant and a delight to be around. And modest. Alyce :-) AngelsRTru@... wrote: Ok, I need some info here. What are the issues associated with raising a child with probable SED dwarfism? We are being given the possible opportunity to adopt a little 3 1/2 yo who has this type of dwarfism but need to know what to look for, what to expect, in order to make the right decision. What are the long term issues associated with SED? Thanks. Apryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Hi Apryl, My name is a and I'm 25 years old with SEDc. I would encourage you to check out this website regarding SEDc! www.ksginfo.org This website talks about Kniest and SED types of dwarfism. I believe it was also created by other people with SEDc! Personally I find this site the best one out there regarding SEDc. There is not a whole lot of information out there regarding SEDc, because it is fairly rare. My father is 72 years old with SEDc as well. We both have life experiences with SEDc. If you have any specific questions, I will be more than happy to correspond with you! Feel free to email me! a > > Ok, I need some info here. What are the issues associated with raising a > child with probable SED dwarfism? We are being given the possible > opportunity to adopt a little 3 1/2 yo who has this type of dwarfism but need to know > what to look for, what to expect, in order to make the right decision. > What are the long term issues associated with SED? Thanks. > > Apryl > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 While I can understand why I could be considered " perfect " , I'd hate to see Bill and my sweetie duke it out. It wouldn't be pretty. Alyce :-) RMBJustice@... wrote: Alyce -- Rumor also has it that it's an SED woman that is in the lead for Bill Bradford's most perfect dwarf woman discussion. However, he hasn't been forthcoming with any names yet. Rose who really is enjoying seeing how hot that water is that Bill keeps getting into. In a message dated 3/27/2006 11:56:19 AM Eastern Standard Time, afwtexas@... writes: Apryl, Check the lpaonline medical section for details, but generally: possible C1/C2 instability, scoliosis, knee/hip problems (and joint replacements later), myopia and possible retinal detachment. We're also brilliant and a delight to be around. And modest. Alyce :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Alyce, there is only one man in your life who considers you perfect, and I swear blind he has learning difficulties:-) However, I have to say (and this message will self destruct after ten seconds) that the guy couldn't have a better woman as his wife! He's one hell of a lucky guy! Bless you Fred Re: Re:SED While I can understand why I could be considered " perfect " , I'd hate to see Bill and my sweetie duke it out. It wouldn't be pretty. Alyce :-) RMBJustice@... wrote: Alyce -- Rumor also has it that it's an SED woman that is in the lead for Bill Bradford's most perfect dwarf woman discussion. However, he hasn't been forthcoming with any names yet. Rose who really is enjoying seeing how hot that water is that Bill keeps getting into. In a message dated 3/27/2006 11:56:19 AM Eastern Standard Time, afwtexas@... writes: Apryl, Check the lpaonline medical section for details, but generally: possible C1/C2 instability, scoliosis, knee/hip problems (and joint replacements later), myopia and possible retinal detachment. We're also brilliant and a delight to be around. And modest. Alyce :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Awwww, shucks, thanks, Fred! (The payment is in the mail.) Alyce Fred Short <mail@...> wrote: Alyce, there is only one man in your life who considers you perfect, and I swear blind he has learning difficulties:-) However, I have to say (and this message will self destruct after ten seconds) that the guy couldn't have a better woman as his wife! He's one hell of a lucky guy! Bless you Fred Re: Re:SED While I can understand why I could be considered " perfect " , I'd hate to see Bill and my sweetie duke it out. It wouldn't be pretty. Alyce :-) RMBJustice@... wrote: Alyce -- Rumor also has it that it's an SED woman that is in the lead for Bill Bradford's most perfect dwarf woman discussion. However, he hasn't been forthcoming with any names yet. Rose who really is enjoying seeing how hot that water is that Bill keeps getting into. In a message dated 3/27/2006 11:56:19 AM Eastern Standard Time, afwtexas@... writes: Apryl, Check the lpaonline medical section for details, but generally: possible C1/C2 instability, scoliosis, knee/hip problems (and joint replacements later), myopia and possible retinal detachment. We're also brilliant and a delight to be around. And modest. Alyce :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 What is the highest SED count you have had? My aunt said the hightest she had was 99. I tested a 140 the first time and three months later it was 160 when my rumey tested to confirm what my local doctor found. Dawn --------------------------------- gets better. Check out the new email design. Plus there’s much more to come. Quote Link to comment Share on other sites More sharing options...
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