Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 No problem , Yes I have eds type one classical, I have three boys 15, 13 and 9. I have had to give up working since last January and am now on disability. I live in Canada, Ontario. I am 35. My oldest son Kiel has eds as well, his symptoms are worse than mine were at his age. I was just diagnosed in 95, mainly due to problems Kiel was having that encouraged them to do testing. It was my experience that not knowing was far worse than actually knowing what we were dealing with. I was relatively healthy until the last year, then I have had increasing pain and that it my main problem. Re: Petra > > > > > > > > > > I can imagine its hard to look at your baby and then imagine an unknown. I > > hope you get all the answers you need soon. The waiting is the hardest > part > > isn't it> > > > > Lorraine > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Does anyone know about scoliosis? Petra really looks crocked from the front and the back her shoulders and hips are out of line and her ribs stick way out along with her tummy. her hips are high in the back. when we go to Sick kids in April She is going to see the research Dr. for EDs I will ask him about her posture. It looks os poor from the front she looks like she is sticking out and from the back she looks like she is folding. Any way if there is any one who help me I would appreciate it Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Scoliosis is a condition in which there is a sideways curve in the spine (which is normally straight when viewed from the back). The curve usually affects the spine at the level of the chest or the lower back. Scoliosis is most often noticed in children when they begin to walk or during the teen years. Scoliosis may be caused by one of the following: * an abnormality of the bones in the spine that is present at birth (this is called congenital scoliosis) * polio or cerebral palsy * injuries to the spine occurring during the birth process or an accident * unknown causes (this is called idiopathic scoliosis and it accounts for the majority of cases). As the curving of the spine in scoliosis is so gradual, it generally has few, if any, symptoms early on. Later on pain, deformity and limited movement can occur. In severe scoliosis, the workings of the heart and lungs can be impaired. If left untreated progressive curving of the spine will continue until bone growth is complete. With early detection, however, scoliosis can be treated and corrected before bone growth is complete and before severe deformity occurs. Monitoring and treatment for scoliosis may include: * a thorough medical examination and x-rays * regular testing to measure the progression of spinal curvature * physical therapy and exercises to help maintain the strength and flexibility of the spine * wearing a raised shoe on one foot to help correct for the pelvic tilt that makes one leg seem longer than the other * a spinal brace (in some cases) * surgery (in some cases) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Thanks Jill Re: Petra > Scoliosis is a condition in which there is a sideways curve in the spine > (which is normally straight when viewed from the back). The curve usually > affects the spine at the level of the chest or the lower back. > > Scoliosis is most often noticed in children when they begin to walk or > during the teen years. > > Scoliosis may be caused by one of the following: > > * an abnormality of the bones in the spine that is present at birth (this > is called congenital scoliosis) > * polio or cerebral palsy > * injuries to the spine occurring during the birth process or an accident > * unknown causes (this is called idiopathic scoliosis and it accounts for > the majority of cases). > > As the curving of the spine in scoliosis is so gradual, it generally has > few, if any, symptoms early on. Later on pain, deformity and limited > movement can occur. In severe scoliosis, the workings of the heart and lungs > can be impaired. > > If left untreated progressive curving of the spine will continue until bone > growth is complete. With early detection, however, scoliosis can be treated > and corrected before bone growth is complete and before severe deformity > occurs. > > Monitoring and treatment for scoliosis may include: > > * a thorough medical examination and x-rays > * regular testing to measure the progression of spinal curvature > * physical therapy and exercises to help maintain the strength and > flexibility of the spine > * wearing a raised shoe on one foot to help correct for the pelvic tilt > that makes one leg seem longer than the other > * a spinal brace (in some cases) > * surgery (in some cases) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 >Hi everyone still waiting to go to sick kids( April 16th ). Hi ...16th of April is Easter Monday (and my hubby's birthday), hope it all goes well for you and Petra, Love, Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2001 Report Share Posted April 5, 2001 I took the EDS and dental information to Kates dentist a few years ago and he did see how it applied to Kate but I was wondering if anyone els had similar experiences. Kate went from having a well rounded smile to sever buck teeth in a month or so. It was really strange to see it happen so rapidly. We got her braces last summer and just as quickly they slipped back in place. She will be in them for another year or so to hold them in place untill she has grown more. So is this common in anyone else experience. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2001 Report Share Posted April 5, 2001 Re: Petra > I took the EDS and dental information to Kates dentist a few years ago and > he did see how it applied to Kate but I was wondering if anyone els had > similar experiences. Kate went from having a well rounded smile to sever > buck teeth in a month or so. It was really strange to see it happen so > rapidly. We got her braces last summer and just as quickly they slipped > back in place. She will be in them for another year or so to hold them in > place untill she has grown more. So is this common in anyone else > experience. > > Jean - I've had personal experience of having had braces. My teeth never stayed where they were put, especially on the bottom front teeth. I should have continued to wear my retainers for life. The bone never built up properly after having them moved. My top teeth are still straight, but they moved back out into the overbite position. I was in my braces for an extra 6 months just waiting for the bone to build up again. Good luck with the braces for Petra. I must have deleted the email that gave me Petra's addy. Could you send it to me privately and I'll have email her? Thanks Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 and Petra, Have been thinking of you guys, knowing you are going to Sick Kids today. Good luck with everything. Are you finding out about Petra's biopsy results today? Let us know how things go, as I am thinking of you both, and saying prayers. Love, Sue Ginley Quote Link to comment Share on other sites More sharing options...
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