Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 In a message dated 3/16/04 9:55:24 PM Eastern Standard Time, bfhalkett@... writes: << I see nothing re lax ligaments in the descriptions of Marfan's Syndrome or EDS Vascular. >> Yes, both do have variable issues with lax ligaments, dislocations, etc. Some families have little hypermobility, while some have quite a bit. In my family we have hypermobility issues too. Lots of pain, and joint stuff. In fact, although I have vascular the most severe and chronic pain I have is from joint issues. I do have a lot of internal organ/arterial issues, but the pain from that is just not as chronic and persistent as the joint stuff. The same thing goes for the POTS and OI issues....some with EDs have and some don't and I believe that goes for all types of EDS. I am not as familiar with marfan's from this perspective. I do not have a lot of POTS issues, unless I have been in the hopsital and in bad for a length of time. My daughter has issues but they are manageable with meds....no issues with my boys at all yet. Ginny didn't start until she was about 13. Hope this helps you. Take care. Hugs, Sue Ginley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Hi Bernadette It sounds like you have had a very frustrating time. I myself do not have any medical issues at the moment but sadly our 13 year old son passed away suddenly this past May from ...they think EDS vascular. I have been skin tested and was positive for it. Now they are very close to getting the results from DNA testing on my late son. We will then determine whether our older son (17) should be tested. Throughout my life (I am 46) I have had no real medical issues. I did have the anterior cruciate ligament in my left knee repaired (I tore it playing baseball when I was 24). I have had 2 pregnancies --- one vaginal and one C-section. The latter was my younger son and I had a placental abruption and he was born at 34 weeks as an emergency. He was the picture of health after that until about 2 years ago he was seen at Childrens Hospital here for an episode of internal bleeding ( He had played hockey that night), so we don't really know at this point if it was EDS related. As you can imagine it has been a long haul and like I have said before this list has been a lifesaver on more than one occasion. I have never ever heard of EDS before and I am definitely more educated now and I repeat.....If we can only get the doctors more educated!!!!! Maybe they should tune into this list . ANway as always I have carried on & on & on...Time to sign off. Take care and look forward to reading more from you Betty Betty Cammack > Thanks for the welcome Betty. I have close relatives in Calgary and > loved the beauty of the west on my visit. > With EDS vascular, do you also have OI and/or POTS, or do they not occur > with it. > > The doctors told me Meaghan had low tone, hyotonia in her legs when she > was 5 or 6 though they chose not to identify the laxity she had in her > ankles and feet. It was very obvious and yet I did not recognize the > significance and they chose not to tell me even when I questioned them > as to possible cause of the toe walking. > > Dr. Grubb in Toledo explained that the lax ligaments just would not > lift up her toes repeatedly to allow normal heal toe walking and the > reason she leaned forward when walking was to use her body weight to > give herself momentum and keep up when her ligaments in knees and hips > couldn't perform adequately. The SICK > KIDS orthopedic surgeon called it habitual or idiopathic toe walking. > It makes me so angry to think about his dishonesty. Meaghan had > delayed motor development, not sitting independently at 6 mos. and did > not walk till 15-16 mos. although she seemed to crawl fairly normally, > but late. She was a very hypersensitive child and still does not like > being touched by times. Because of the constant toe walking she > developed very tight muscles in calves, thighs, backs of knees and > buttocks. She was actually very, very strong because of the tight > muscles, just like an NHL hockey player. At 11 she began developing a > functional scoliosis which was resolved by an Achilles tendon > lengthening of both tendons. I do not believe for one minute, not even > one second that the surgeon did not know the causes. He would not > answer my questions. > It was immediately after taking the casts off in early a.m. that my dtr. > developed the severe nausea and dizziness (OI). She puked up till she > was vomiting green stuff and froth, every morning for days and I thought > it was a bit of food poisoning or a severe stomach flu. I am reminded > of the other mother on this site who had a child with severe vomiting. > Standing up made it worse. It was the Orthostatic Intolerance in full > force. I know now that she improved because of all the salty chicken > noodle soup plus the gravol p.o. and gravol suppositories. The salty > soup and extra fluids I gave helped combat the low blood pressure (OI). > I couldn't understand why this prolonged flu when no one else had it, > and no temp. It was absolute cruelty to keep a parent in the dark and > create so much worry, upset and anxiety...never understanding the cause. > > I see nothing re lax ligaments in the descriptions of Marfan's Syndrome > or EDS Vascular. Do or did you have loose joints? Marit does not have > varicosities, just some of her leg veins are lightly more visible > through her skin. When she stands up though, her foot veins become very > prominent, then feet and legs become mottled, after which they turn > bluish, then purple, then frankly dark cranberry at which point she > passes out. She has become very good at fighting the passing out and > can stay upright in one spot for 13 minutes but usually moves around or > wiggles the toes or tenses and relaxes leg muscles. She has a lot of > leg pooling when sitting for more than half an hour. > > Do you have loose joints and do you have enough stamina to work even > part time? The EDS nosology provides so little concrete info. I find it > so frustrating. > > Kindest regards, Bernie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Hi Bernadette It sounds like you have had a very frustrating time. I myself do not have any medical issues at the moment but sadly our 13 year old son passed away suddenly this past May from ...they think EDS vascular. I have been skin tested and was positive for it. Now they are very close to getting the results from DNA testing on my late son. We will then determine whether our older son (17) should be tested. Throughout my life (I am 46) I have had no real medical issues. I did have the anterior cruciate ligament in my left knee repaired (I tore it playing baseball when I was 24). I have had 2 pregnancies --- one vaginal and one C-section. The latter was my younger son and I had a placental abruption and he was born at 34 weeks as an emergency. He was the picture of health after that until about 2 years ago he was seen at Childrens Hospital here for an episode of internal bleeding ( He had played hockey that night), so we don't really know at this point if it was EDS related. As you can imagine it has been a long haul and like I have said before this list has been a lifesaver on more than one occasion. I have never ever heard of EDS before and I am definitely more educated now and I repeat.....If we can only get the doctors more educated!!!!! Maybe they should tune into this list . ANway as always I have carried on & on & on...Time to sign off. Take care and look forward to reading more from you Betty Betty Cammack > Thanks for the welcome Betty. I have close relatives in Calgary and > loved the beauty of the west on my visit. > With EDS vascular, do you also have OI and/or POTS, or do they not occur > with it. > > The doctors told me Meaghan had low tone, hyotonia in her legs when she > was 5 or 6 though they chose not to identify the laxity she had in her > ankles and feet. It was very obvious and yet I did not recognize the > significance and they chose not to tell me even when I questioned them > as to possible cause of the toe walking. > > Dr. Grubb in Toledo explained that the lax ligaments just would not > lift up her toes repeatedly to allow normal heal toe walking and the > reason she leaned forward when walking was to use her body weight to > give herself momentum and keep up when her ligaments in knees and hips > couldn't perform adequately. The SICK > KIDS orthopedic surgeon called it habitual or idiopathic toe walking. > It makes me so angry to think about his dishonesty. Meaghan had > delayed motor development, not sitting independently at 6 mos. and did > not walk till 15-16 mos. although she seemed to crawl fairly normally, > but late. She was a very hypersensitive child and still does not like > being touched by times. Because of the constant toe walking she > developed very tight muscles in calves, thighs, backs of knees and > buttocks. She was actually very, very strong because of the tight > muscles, just like an NHL hockey player. At 11 she began developing a > functional scoliosis which was resolved by an Achilles tendon > lengthening of both tendons. I do not believe for one minute, not even > one second that the surgeon did not know the causes. He would not > answer my questions. > It was immediately after taking the casts off in early a.m. that my dtr. > developed the severe nausea and dizziness (OI). She puked up till she > was vomiting green stuff and froth, every morning for days and I thought > it was a bit of food poisoning or a severe stomach flu. I am reminded > of the other mother on this site who had a child with severe vomiting. > Standing up made it worse. It was the Orthostatic Intolerance in full > force. I know now that she improved because of all the salty chicken > noodle soup plus the gravol p.o. and gravol suppositories. The salty > soup and extra fluids I gave helped combat the low blood pressure (OI). > I couldn't understand why this prolonged flu when no one else had it, > and no temp. It was absolute cruelty to keep a parent in the dark and > create so much worry, upset and anxiety...never understanding the cause. > > I see nothing re lax ligaments in the descriptions of Marfan's Syndrome > or EDS Vascular. Do or did you have loose joints? Marit does not have > varicosities, just some of her leg veins are lightly more visible > through her skin. When she stands up though, her foot veins become very > prominent, then feet and legs become mottled, after which they turn > bluish, then purple, then frankly dark cranberry at which point she > passes out. She has become very good at fighting the passing out and > can stay upright in one spot for 13 minutes but usually moves around or > wiggles the toes or tenses and relaxes leg muscles. She has a lot of > leg pooling when sitting for more than half an hour. > > Do you have loose joints and do you have enough stamina to work even > part time? The EDS nosology provides so little concrete info. I find it > so frustrating. > > Kindest regards, Bernie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Hi Bernadette It sounds like you have had a very frustrating time. I myself do not have any medical issues at the moment but sadly our 13 year old son passed away suddenly this past May from ...they think EDS vascular. I have been skin tested and was positive for it. Now they are very close to getting the results from DNA testing on my late son. We will then determine whether our older son (17) should be tested. Throughout my life (I am 46) I have had no real medical issues. I did have the anterior cruciate ligament in my left knee repaired (I tore it playing baseball when I was 24). I have had 2 pregnancies --- one vaginal and one C-section. The latter was my younger son and I had a placental abruption and he was born at 34 weeks as an emergency. He was the picture of health after that until about 2 years ago he was seen at Childrens Hospital here for an episode of internal bleeding ( He had played hockey that night), so we don't really know at this point if it was EDS related. As you can imagine it has been a long haul and like I have said before this list has been a lifesaver on more than one occasion. I have never ever heard of EDS before and I am definitely more educated now and I repeat.....If we can only get the doctors more educated!!!!! Maybe they should tune into this list . ANway as always I have carried on & on & on...Time to sign off. Take care and look forward to reading more from you Betty Betty Cammack > Thanks for the welcome Betty. I have close relatives in Calgary and > loved the beauty of the west on my visit. > With EDS vascular, do you also have OI and/or POTS, or do they not occur > with it. > > The doctors told me Meaghan had low tone, hyotonia in her legs when she > was 5 or 6 though they chose not to identify the laxity she had in her > ankles and feet. It was very obvious and yet I did not recognize the > significance and they chose not to tell me even when I questioned them > as to possible cause of the toe walking. > > Dr. Grubb in Toledo explained that the lax ligaments just would not > lift up her toes repeatedly to allow normal heal toe walking and the > reason she leaned forward when walking was to use her body weight to > give herself momentum and keep up when her ligaments in knees and hips > couldn't perform adequately. The SICK > KIDS orthopedic surgeon called it habitual or idiopathic toe walking. > It makes me so angry to think about his dishonesty. Meaghan had > delayed motor development, not sitting independently at 6 mos. and did > not walk till 15-16 mos. although she seemed to crawl fairly normally, > but late. She was a very hypersensitive child and still does not like > being touched by times. Because of the constant toe walking she > developed very tight muscles in calves, thighs, backs of knees and > buttocks. She was actually very, very strong because of the tight > muscles, just like an NHL hockey player. At 11 she began developing a > functional scoliosis which was resolved by an Achilles tendon > lengthening of both tendons. I do not believe for one minute, not even > one second that the surgeon did not know the causes. He would not > answer my questions. > It was immediately after taking the casts off in early a.m. that my dtr. > developed the severe nausea and dizziness (OI). She puked up till she > was vomiting green stuff and froth, every morning for days and I thought > it was a bit of food poisoning or a severe stomach flu. I am reminded > of the other mother on this site who had a child with severe vomiting. > Standing up made it worse. It was the Orthostatic Intolerance in full > force. I know now that she improved because of all the salty chicken > noodle soup plus the gravol p.o. and gravol suppositories. The salty > soup and extra fluids I gave helped combat the low blood pressure (OI). > I couldn't understand why this prolonged flu when no one else had it, > and no temp. It was absolute cruelty to keep a parent in the dark and > create so much worry, upset and anxiety...never understanding the cause. > > I see nothing re lax ligaments in the descriptions of Marfan's Syndrome > or EDS Vascular. Do or did you have loose joints? Marit does not have > varicosities, just some of her leg veins are lightly more visible > through her skin. When she stands up though, her foot veins become very > prominent, then feet and legs become mottled, after which they turn > bluish, then purple, then frankly dark cranberry at which point she > passes out. She has become very good at fighting the passing out and > can stay upright in one spot for 13 minutes but usually moves around or > wiggles the toes or tenses and relaxes leg muscles. She has a lot of > leg pooling when sitting for more than half an hour. > > Do you have loose joints and do you have enough stamina to work even > part time? The EDS nosology provides so little concrete info. I find it > so frustrating. > > Kindest regards, Bernie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Hi Bernie In my haste to reply I forgot to answer your questions: No I do not have OI or POTS...I can;t tell you if it is common with EDS vascular. Also I do have somewhat loose joints but nothing that cause me any pain. I did have a foot operation (2 actually) they put 2 screws in and a plate to anchor my ankle which was a litlle unstable. My thumbs are slightly double jointed. Other than that there doesn't seem to be any symptoms/signs of this disorder , either in me or my son (s). Betty P.S. Funny I have very close relatives that live in Toronto (In fact my & my husbands families all live back east) Betty Cammack > Thanks for the welcome Betty. I have close relatives in Calgary and > loved the beauty of the west on my visit. > With EDS vascular, do you also have OI and/or POTS, or do they not occur > with it. > > The doctors told me Meaghan had low tone, hyotonia in her legs when she > was 5 or 6 though they chose not to identify the laxity she had in her > ankles and feet. It was very obvious and yet I did not recognize the > significance and they chose not to tell me even when I questioned them > as to possible cause of the toe walking. > > Dr. Grubb in Toledo explained that the lax ligaments just would not > lift up her toes repeatedly to allow normal heal toe walking and the > reason she leaned forward when walking was to use her body weight to > give herself momentum and keep up when her ligaments in knees and hips > couldn't perform adequately. The SICK > KIDS orthopedic surgeon called it habitual or idiopathic toe walking. > It makes me so angry to think about his dishonesty. Meaghan had > delayed motor development, not sitting independently at 6 mos. and did > not walk till 15-16 mos. although she seemed to crawl fairly normally, > but late. She was a very hypersensitive child and still does not like > being touched by times. Because of the constant toe walking she > developed very tight muscles in calves, thighs, backs of knees and > buttocks. She was actually very, very strong because of the tight > muscles, just like an NHL hockey player. At 11 she began developing a > functional scoliosis which was resolved by an Achilles tendon > lengthening of both tendons. I do not believe for one minute, not even > one second that the surgeon did not know the causes. He would not > answer my questions. > It was immediately after taking the casts off in early a.m. that my dtr. > developed the severe nausea and dizziness (OI). She puked up till she > was vomiting green stuff and froth, every morning for days and I thought > it was a bit of food poisoning or a severe stomach flu. I am reminded > of the other mother on this site who had a child with severe vomiting. > Standing up made it worse. It was the Orthostatic Intolerance in full > force. I know now that she improved because of all the salty chicken > noodle soup plus the gravol p.o. and gravol suppositories. The salty > soup and extra fluids I gave helped combat the low blood pressure (OI). > I couldn't understand why this prolonged flu when no one else had it, > and no temp. It was absolute cruelty to keep a parent in the dark and > create so much worry, upset and anxiety...never understanding the cause. > > I see nothing re lax ligaments in the descriptions of Marfan's Syndrome > or EDS Vascular. Do or did you have loose joints? Marit does not have > varicosities, just some of her leg veins are lightly more visible > through her skin. When she stands up though, her foot veins become very > prominent, then feet and legs become mottled, after which they turn > bluish, then purple, then frankly dark cranberry at which point she > passes out. She has become very good at fighting the passing out and > can stay upright in one spot for 13 minutes but usually moves around or > wiggles the toes or tenses and relaxes leg muscles. She has a lot of > leg pooling when sitting for more than half an hour. > > Do you have loose joints and do you have enough stamina to work even > part time? The EDS nosology provides so little concrete info. I find it > so frustrating. > > Kindest regards, Bernie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 I know some who have type IV who are hypermobile. I believe Sue Ginley is one of them. I know there are others. Some don't have a lot of hypermobile issues, but some do. Love Lana p.s. welcome, Bernie, if I haven't said that! I forget sometimes who all I reply to! If I missed you, I apologize. Welcome to the family! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 In a message dated 3/17/04 10:01:25 AM Eastern Standard Time, monica-jb@... writes: << But, she has so many health issues, it's not normal. >> , Were you offered a skin biopsy at all? Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 In a message dated 3/17/04 10:01:25 AM Eastern Standard Time, monica-jb@... writes: << But, she has so many health issues, it's not normal. >> , Were you offered a skin biopsy at all? Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 In a message dated 3/17/04 10:01:25 AM Eastern Standard Time, monica-jb@... writes: << But, she has so many health issues, it's not normal. >> , Were you offered a skin biopsy at all? Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hi, I thought everyone had the hypermobile issues. I am so confused after seeing Dr Byers. doesn't really have the hypermobile issues, but she has so many other wierd health issues that fit with connective tissue problems. (lung, very large bladder, uti's, migraines, low resistance). She doesn't seem to have any skin issues though. So, The hypermobility is apparent in me, and , along with other things, but not . But, she has so many health issues, it's not normal. I'm just assuming 's problems are from a connective tissues disorder, and leave it at that. It's been mentioned a few times by dr's who see her for other reasons. " A connective tissue problem could cause this " They say. What do you all think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hi, I thought everyone had the hypermobile issues. I am so confused after seeing Dr Byers. doesn't really have the hypermobile issues, but she has so many other wierd health issues that fit with connective tissue problems. (lung, very large bladder, uti's, migraines, low resistance). She doesn't seem to have any skin issues though. So, The hypermobility is apparent in me, and , along with other things, but not . But, she has so many health issues, it's not normal. I'm just assuming 's problems are from a connective tissues disorder, and leave it at that. It's been mentioned a few times by dr's who see her for other reasons. " A connective tissue problem could cause this " They say. What do you all think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Nope. He just said her lung thing was " separate " . It's because she tall and thin. It happens to tall thin people. Usually young adult males. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Ha! Thanks. I think there has to be a connection. I don't know any 17 year old kids who get as many health problems as . Not unless there is an underlying condition. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Ha! Thanks. I think there has to be a connection. I don't know any 17 year old kids who get as many health problems as . Not unless there is an underlying condition. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Re: Betty Cammack I'm just assuming 's problems are from a connective tissues disorder, and leave it at that. It's been mentioned a few times by dr's who see her for other reasons. " A connective tissue problem could cause this " They say. What do you all think? I definitely agree, . had horrible respiratory problems from birth. This is the FIRST year that she has been relatively healthy - no infections every month.... Between the 2 of us until about 1.5 years ago, we were at the MD's about every month for antibiotics for infections. We would get sick together! We were called the " Bobsey Twins " by the nurse and MD because we ALWAYS got the same infection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Re: Betty Cammack I'm just assuming 's problems are from a connective tissues disorder, and leave it at that. It's been mentioned a few times by dr's who see her for other reasons. " A connective tissue problem could cause this " They say. What do you all think? I definitely agree, . had horrible respiratory problems from birth. This is the FIRST year that she has been relatively healthy - no infections every month.... Between the 2 of us until about 1.5 years ago, we were at the MD's about every month for antibiotics for infections. We would get sick together! We were called the " Bobsey Twins " by the nurse and MD because we ALWAYS got the same infection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Re: Betty Cammack I'm just assuming 's problems are from a connective tissues disorder, and leave it at that. It's been mentioned a few times by dr's who see her for other reasons. " A connective tissue problem could cause this " They say. What do you all think? I definitely agree, . had horrible respiratory problems from birth. This is the FIRST year that she has been relatively healthy - no infections every month.... Between the 2 of us until about 1.5 years ago, we were at the MD's about every month for antibiotics for infections. We would get sick together! We were called the " Bobsey Twins " by the nurse and MD because we ALWAYS got the same infection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Hi Betty: So very sorry to hear you lost you son. How very difficult and painful this must be for you, particularly when he was well and healthy. It can seem so darned unfair. EDS can be such a harsh condition and medicine has a very poor handle on how to minimize pain in so many tests and illnesses. Strange that so few research papers note pain that test subjects endure during testing for research, almost as though they block it out purposely. We have the body of knowledge to send a man to the moon but we do not have excellent methods of pain control in illnesses. People donate to cancer research and heart and stroke research, but how about a foundation for researching pain mechanisms or pain drugs. I also had never heard of EDS before and I think doctors just aren't trained to recognize it because it is a syndrome. It never dawns on them to assess the whole picture. The specialization in gastric, orthopedic, thoracic etc. blocks out what is happening in other systems. One can see why patients are interested in wholistic medicine. Hang in there re those test results. Kindest Regards, Bernie Re: Betty Cammack Hi Bernadette It sounds like you have had a very frustrating time. I myself do not have any medical issues at the moment but sadly our 13 year old son passed away suddenly this past May from ...they think EDS vascular. I have been skin tested and was positive for it. Now they are very close to getting the results from DNA testing on my late son. We will then determine whether our older son (17) should be tested. Throughout my life (I am 46) I have had no real medical issues. I did have the anterior cruciate ligament in my left knee repaired (I tore it playing baseball when I was 24). I have had 2 pregnancies --- one vaginal and one C-section. The latter was my younger son and I had a placental abruption and he was born at 34 weeks as an emergency. He was the picture of health after that until about 2 years ago he was seen at Childrens Hospital here for an episode of internal bleeding ( He had played hockey that night), so we don't really know at this point if it was EDS related. As you can imagine it has been a long haul and like I have said before this list has been a lifesaver on more than one occasion. I have never ever heard of EDS before and I am definitely more educated now and I repeat.....If we can only get the doctors more educated!!!!! Maybe they should tune into this list . ANway as always I have carried on & on & on...Time to sign off. Take care and look forward to reading more from you Betty ----- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.