Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 jen831g@... wrote: > I have MPS,FMS,O.A.,stenosis, cervical disc disease,carpal > tunnel,depression,panic disorder. > > I would like to know if any of you have been helped by Botox injections. > I have found that physical therapy has helped so much. Welcome, Jen, you sound like the rest of us. I've never had them so I can't tell you personally if they've helped. I've seen other people give them mixed reviews. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 jen831g@... wrote: > I have MPS,FMS,O.A.,stenosis, cervical disc disease,carpal > tunnel,depression,panic disorder. > > I would like to know if any of you have been helped by Botox injections. > I have found that physical therapy has helped so much. Welcome, Jen, you sound like the rest of us. I've never had them so I can't tell you personally if they've helped. I've seen other people give them mixed reviews. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 jen831g@... wrote: > I have MPS,FMS,O.A.,stenosis, cervical disc disease,carpal > tunnel,depression,panic disorder. > > I would like to know if any of you have been helped by Botox injections. > I have found that physical therapy has helped so much. Welcome, Jen, you sound like the rest of us. I've never had them so I can't tell you personally if they've helped. I've seen other people give them mixed reviews. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 Hi, If your doctor thinks you need a handicap plaque, he will help write one up so you can get it. Several people on the group have them. I think accessing your disabilities services on campus sounds like a very smart move. I hope they can help you. Sorry, I can't give advice on which doctor is better for you to see. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 hello to all the new members. i'm a new member too, and i've found this group extremely helpful. just reading the caring posts, and knowing that others are going through the same thing is so helpful. it's almost a relief. if so many others have this horrible problem, i am NOT crazy or alone. good luck to everyone, and may your day be relatively pain free. stacy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Hi Shandi Thank you so much for responding to my introduction, yes, I have gradually added all my meds. It started about 7 years ago and my doctor is still trying to give me different things. As for my depression, I have had it so long, I feel it is just a part of my existance. I am on Prozac and WellButrin. I tried to get off Prozac one time, thought I was going crazy so I got back on it and I felt some better so I know that works for me. Only been on Wellbutrin about a month. When I get really depressed I go and lay down and try to sleep. That way, I dont have to think about it. I take Ambien at night, I know I would not sleep all night without it. My doctor tells me it is to hard to prove disability and she will not fill out the SS forms. I have a letter from her saying I cannot work but yet she wont go any further. I did have a lawyer and she believed in me but when my doctor refused her forms, she withdrew from my case. It is hard to change doctors cause of my medical insurance. I have thought of it, but I cant. I am getting ready to try again, but if I get turned down again, I will try another lawyer. It is so hard to have to deal with my ailments but to try and deal with SS is hard too. Thanks again and I am here for you also. Sherry _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2003 Report Share Posted October 11, 2003 Hi and welcome to the group! Congrats on your surgery and best of luck to you when you decide to try and conceive! Marcy New member > Hi everyone. I am hoping this group will be a great source of info > for the future. > > I am a new post op(7weeks) and doing well. Part of the reason I had > WLS was because of my inability to conceive. I have PCOS and insulin > resistance. I have not had a period on my own for almost two years. I > know that weight has alot to do with it. Any time in the past I lost > weight, I always started my period and they were like clockwork. I > know losing weight will help my chances. > > Another problem is that next week I will be 35. I know I have to wait > at least a year to try. That puts me at 37 if I can get pregnant. I > know women older than me have children all the time. My husband is > not so eager to be an older parent(we are childless). I just can't > imagine going through this life and never having a baby. My husband > would make a great dad. > > I will probably not do alot of posting, but I will be here reading > and gaining knowledge. Good luck to all the expecting parents! > > > > > Children are a blessing, and a gift from the Lord. -Psalm 127:3 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Welcome Cindy.. I'm new too.. Just joined latnight.. Noticed we were both 9 weeks pregnant.. Yeah! Congratz!! If you want to keep in touch privately, feel free to email me luv@... JenNY new member I just wanted to say hello to everyone. I am a new member. 10 months post op as of oct 9th and 9 weeks pregnant. I look forward to learning alot of everyone here. God knows this was not planned but I am doing the best I can to make it a great situation. I just have the usual concerns. Baby health, my health, continued weightloss. I started out at 333 wearing a size 32 now down to 204 wearing a size 18. As far as i am concerned the surgery worked. I had my dream of being a size 9 but .. not sure if that will happen now. As long as my baby comes out healthy and i stay healthy and i don't go anyfurther i am happy as heck. My ob is acutally seeing 3 gastric patients now and the nurse who takes the blood work in her office and does the testing had gastric bypass 2 years ago. So I feel very confident with everything. My surgeon was not to thrilled, but I am not the first and won't be the last. I had open rny jan 9 2003 with Dr T Overcash in Ocala. So far no major complications. My thryroid was over medicated for about 2 months but i am doing good now. I had some black out spells and some weak spells but other than that i am doing fine. Food is good but these craving are killing me . I have not dumped but have had issues with overeating. you know that whole delayed reaction thing. Doing well with protein. If i could eat a steak everyday i would be on cloud 9.I saw some of the posts about bleeding in first trimester. I had an issue this past saturday with that . It was very light but noticable. No pain. Went to the er anyways and they did an ultrasound and an exam. Came back with I had a uti and my cervix was irritated. Said possibly that is where it is from. Other than that i had a clean bill of health. Again, I am looking forward to learning alot and i am thankfull to my support group in ville florida that found this sight for me .. take care.. oh ..i am 30 years old .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Welcome Cindy. I am semi-new to this group also. I am not pregnant yet, but am looking forward to my anniversary so we can start trying. I am down to 175 pounds but would like to get to 150. I am 5'8 " tall.. I had surgery with Dr. Overcash also. I would love to know who your OB is, and if they are close to me, as I am trying to find one now! Thanks so much and I am sure you will learn lots from these great ladies! Check out my new online store!!!!!! http://stores.hsprofessional.com/MKorta/StoreFront.bok Korta Independant Consultant Southern Living at HOME From the publishers of Southern Living® magazine ***visit my website www.southernlivingathome.com/melissakorta For more information about our growing company, call me at or email me at momkorta@... new member I just wanted to say hello to everyone. I am a new member. 10 months post op as of oct 9th and 9 weeks pregnant. I look forward to learning alot of everyone here. God knows this was not planned but I am doing the best I can to make it a great situation. I just have the usual concerns. Baby health, my health, continued weightloss. I started out at 333 wearing a size 32 now down to 204 wearing a size 18. As far as i am concerned the surgery worked. I had my dream of being a size 9 but .. not sure if that will happen now. As long as my baby comes out healthy and i stay healthy and i don't go anyfurther i am happy as heck. My ob is acutally seeing 3 gastric patients now and the nurse who takes the blood work in her office and does the testing had gastric bypass 2 years ago. So I feel very confident with everything. My surgeon was not to thrilled, but I am not the first and won't be the last. I had open rny jan 9 2003 with Dr T Overcash in Ocala. So far no major complications. My thryroid was over medicated for about 2 months but i am doing good now. I had some black out spells and some weak spells but other than that i am doing fine. Food is good but these craving are killing me . I have not dumped but have had issues with overeating. you know that whole delayed reaction thing. Doing well with protein. If i could eat a steak everyday i would be on cloud 9.I saw some of the posts about bleeding in first trimester. I had an issue this past saturday with that . It was very light but noticable. No pain. Went to the er anyways and they did an ultrasound and an exam. Came back with I had a uti and my cervix was irritated. Said possibly that is where it is from. Other than that i had a clean bill of health. Again, I am looking forward to learning alot and i am thankfull to my support group in ville florida that found this sight for me .. take care.. oh ..i am 30 years old .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Welcome, I am new to the group to I had surgery on the 11th of January 2003 I am 3 weeks pregnant 9 mo post op the surgeon said congrats when I told him today I was worried but thank god he was ok.! I started at 313 I am 162 as of today- I feel great and really looking forward to this pregnacy I have 2 sons 6 and 4 I am 29 years old and have been over 200 for both pregnacys not this one it is great.!! I go see the OB GYN On Monday. Take care Hugs, Michele new member I just wanted to say hello to everyone. I am a new member. 10 months post op as of oct 9th and 9 weeks pregnant. I look forward to learning alot of everyone here. God knows this was not planned but I am doing the best I can to make it a great situation. I just have the usual concerns. Baby health, my health, continued weightloss. I started out at 333 wearing a size 32 now down to 204 wearing a size 18. As far as i am concerned the surgery worked. I had my dream of being a size 9 but .. not sure if that will happen now. As long as my baby comes out healthy and i stay healthy and i don't go anyfurther i am happy as heck. My ob is acutally seeing 3 gastric patients now and the nurse who takes the blood work in her office and does the testing had gastric bypass 2 years ago. So I feel very confident with everything. My surgeon was not to thrilled, but I am not the first and won't be the last. I had open rny jan 9 2003 with Dr T Overcash in Ocala. So far no major complications. My thryroid was over medicated for about 2 months but i am doing good now. I had some black out spells and some weak spells but other than that i am doing fine. Food is good but these craving are killing me . I have not dumped but have had issues with overeating. you know that whole delayed reaction thing. Doing well with protein. If i could eat a steak everyday i would be on cloud 9.I saw some of the posts about bleeding in first trimester. I had an issue this past saturday with that . It was very light but noticable. No pain. Went to the er anyways and they did an ultrasound and an exam. Came back with I had a uti and my cervix was irritated. Said possibly that is where it is from. Other than that i had a clean bill of health. Again, I am looking forward to learning alot and i am thankfull to my support group in ville florida that found this sight for me .. take care.. oh ..i am 30 years old .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 > >Don't worry about being an older parent... I am 39 and pregnant with my first child, ever! :~) In our homebirth practice, we have *many* moms who are having their first babies over 40... actually, many around 45. We had a 9th time mom who was 48 last year! You are SO much healthier post-op... and the potential for a healthy pregnancy is so much greater now, even " older, " than pre-op as a younger mom. Barbara E. Herrera, Midwife San Diego, CA Open RNY April 5, 2001 Starting Weight 350/BMI-64 Now 200/Alive and Healthy! (Lowest Post-op Weight 160) www.AmaMama.com Transformation Pics: http://www.picturetrail.com/gallery/view?p=999&gid=1006909&uid=631889&members=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 , You are quite welcome!! I am curious... Did she do a complete vitamin assay?? If not, the blood draw won't tell you much. She needs to check things like Comprehensive Metabolic Panel, Lipid Profile, B12, CBC/Diff, liver panel, chem panel, lip2, A,D,E,K,B's; dexascan; Calcium; Phosphorous; Magnesium; Folate; pre-albumin, thyamin, zinc... if she didn't do ALL those, you might talk to her about checking them... (there are some others, but those are the ones I remember off the top of my head...!) Good Luck! Sharon maggiebosmom said: > Thank you so much. My PC did draw blood work at my physical last > week. I will give her a call and have her fax me the results so we > can discuss a vitamin plan. Thanks again. > > > > > >> >> >> >> >> >> Congrats on the weight loss and good luck with getting pregnant! >> >> >> >> The standard advice is to wait at least 12 months after wls to >> > ttc... just >> >> to make sure you are stable. LOTS of reasons for this, but mainly >> > to make >> >> sure you are able to have a good nutrition intake ability. >> >> >> >> My ob is treating me like a " normal " pregnant person... except > not >> > doing >> >> the typical glucose test... instead doing a fasting glucose, > then a >> > two >> >> hour after eating glucose. The other test requires us to intake > too >> > many >> >> carbs/sugars at once and the results are inconclusive > (typically). >> > It is >> >> more accurate with the dual glucose test (don't remember what it > is >> >> called). >> >> >> >> The main difference between me and a " regular " pregnant woman is >> > that I >> >> take double the prenatal vitamins and a few other supplements. > You >> > might >> >> get your lab work done now so you can keep track of your own >> > particular >> >> supplementation needs... >> >> >> >> Again, welcome and good luck! >> >> Sharon >> >> >> >> said: >> >> > Hello! >> >> > >> >> > My name is and I had my open RNY in Feb or 2003. My > husband >> >> > and I are hoping to get pregnant in March of 04. I would love > any >> >> > advice. I am a high rish pregnancy RNY or not, and I would > love >> > to >> >> > know how your OB's are treating you. I am a little nervous > about >> >> > weight gain but I am hopeful. I have lost all of my weight > and I >> > am >> >> > working on maintaining (and not losing too much). >> >> > >> >> > Thanks! >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > Children are a blessing, and a gift from the Lord. -Psalm 127:3 >> >> > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi Robin and WELCOME... I am Sharon and I have Hypermobile EDS and live in Canberra, Australia where in this big world of our are you from?? we are from all over here. There are others here with EDS kids too who may have ideas for you on how to get your little girl the help and accomodations she will need to go to school. There are many here who truly understand what it is like to live with EDS and what it is like to live with family who have EDS and/or kids with EDS. Welcome Again Robin, Hannah and Lee Sharon Canberra, Australia > Hello, > > I'm new to this group & just wanted to do a quick introduction of my > family. My name is Robin and I do not have Ehler's Danlos but my > husband and our daugther Hannah age 5 both do. I also have a > step-daughter age 8 with it who does not live w/us. My husband (Lee) > and I also have a son together but he is not effected with EDS. My > husband was skin tested and dx w/ type 1 classical. I joined this > group because there really isn't a great deal of information from the > physicians...esp our pediatrician. My husband was a foster child and > doesn't remember (or chooses not to) about his youth w/ regards to his > EDS. I know that he was hospitalized freq due to difficulty of > healing and that he has significant scarring. My daugther has very > fragile skin that needs repaired often and also freq gets large > hematomas from simple bumps. She was born w/ a club foot, (surgical > repair x2) umbilical hernia, (repaired) and severe nearsightedness > that she wears glasses for. She also has a mild hearing impairment a > diagnosis of mondini dysplasia. I didn't send her to school this yr > because I was afraid of her getting hurt. I chose to begin > homeschooling her so that she isnt too behind but I will allow her to > start K in the fall. Oh how I dread that day! She so very much wants > a friend. She talks about it every day. It breaks my heart. > Anyway...so that is us. I hope to learn alot from this group and > contribute whenever I can be of help to anyone. Thanks! > > Robin > > Maybe someone else has a young daugther that my daughter could write > to...(w/ my help of course)? They could be pen pals! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi Robin and WELCOME... I am Sharon and I have Hypermobile EDS and live in Canberra, Australia where in this big world of our are you from?? we are from all over here. There are others here with EDS kids too who may have ideas for you on how to get your little girl the help and accomodations she will need to go to school. There are many here who truly understand what it is like to live with EDS and what it is like to live with family who have EDS and/or kids with EDS. Welcome Again Robin, Hannah and Lee Sharon Canberra, Australia > Hello, > > I'm new to this group & just wanted to do a quick introduction of my > family. My name is Robin and I do not have Ehler's Danlos but my > husband and our daugther Hannah age 5 both do. I also have a > step-daughter age 8 with it who does not live w/us. My husband (Lee) > and I also have a son together but he is not effected with EDS. My > husband was skin tested and dx w/ type 1 classical. I joined this > group because there really isn't a great deal of information from the > physicians...esp our pediatrician. My husband was a foster child and > doesn't remember (or chooses not to) about his youth w/ regards to his > EDS. I know that he was hospitalized freq due to difficulty of > healing and that he has significant scarring. My daugther has very > fragile skin that needs repaired often and also freq gets large > hematomas from simple bumps. She was born w/ a club foot, (surgical > repair x2) umbilical hernia, (repaired) and severe nearsightedness > that she wears glasses for. She also has a mild hearing impairment a > diagnosis of mondini dysplasia. I didn't send her to school this yr > because I was afraid of her getting hurt. I chose to begin > homeschooling her so that she isnt too behind but I will allow her to > start K in the fall. Oh how I dread that day! She so very much wants > a friend. She talks about it every day. It breaks my heart. > Anyway...so that is us. I hope to learn alot from this group and > contribute whenever I can be of help to anyone. Thanks! > > Robin > > Maybe someone else has a young daugther that my daughter could write > to...(w/ my help of course)? They could be pen pals! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi Robin and WELCOME... I am Sharon and I have Hypermobile EDS and live in Canberra, Australia where in this big world of our are you from?? we are from all over here. There are others here with EDS kids too who may have ideas for you on how to get your little girl the help and accomodations she will need to go to school. There are many here who truly understand what it is like to live with EDS and what it is like to live with family who have EDS and/or kids with EDS. Welcome Again Robin, Hannah and Lee Sharon Canberra, Australia > Hello, > > I'm new to this group & just wanted to do a quick introduction of my > family. My name is Robin and I do not have Ehler's Danlos but my > husband and our daugther Hannah age 5 both do. I also have a > step-daughter age 8 with it who does not live w/us. My husband (Lee) > and I also have a son together but he is not effected with EDS. My > husband was skin tested and dx w/ type 1 classical. I joined this > group because there really isn't a great deal of information from the > physicians...esp our pediatrician. My husband was a foster child and > doesn't remember (or chooses not to) about his youth w/ regards to his > EDS. I know that he was hospitalized freq due to difficulty of > healing and that he has significant scarring. My daugther has very > fragile skin that needs repaired often and also freq gets large > hematomas from simple bumps. She was born w/ a club foot, (surgical > repair x2) umbilical hernia, (repaired) and severe nearsightedness > that she wears glasses for. She also has a mild hearing impairment a > diagnosis of mondini dysplasia. I didn't send her to school this yr > because I was afraid of her getting hurt. I chose to begin > homeschooling her so that she isnt too behind but I will allow her to > start K in the fall. Oh how I dread that day! She so very much wants > a friend. She talks about it every day. It breaks my heart. > Anyway...so that is us. I hope to learn alot from this group and > contribute whenever I can be of help to anyone. Thanks! > > Robin > > Maybe someone else has a young daugther that my daughter could write > to...(w/ my help of course)? They could be pen pals! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi Robin, Welcome. There are others here that don't have EDS. They are here to learn and help loved ones. I'm Cindy C also known as Cindylouwho. My 16 year old Dylan, has type 3. The genetics Dr says I have it too , but I'm really not affected much. Dylan is the youngest of 5 boys. Time will tell if any of the others have it. The Dr thinks my twins might have it. Dylan has been home bound for 17 months now. He has a home bound teacher. He will be 17 in just days and he is still working on the 10th grade, but at least he is working on it. Most of us find that we have to educate ourselves, and then teach the doctors. Well, that's if they are willing to learn. The problem is they learn about 5 minutes or so about EDS in their schooling. Obviously, that is not enough. You spend 6 months around here and you will learn more than you ever thought you could. There is allot of information on EDS and school. Eyes, surgery, Hopefully everything you need to help you raise your daughter. There are no perfect answers, but we can offer you help, support and experience. There are support groups for children to talk to other children. I'm not sure they are as young as her, but they are available. Any way, welcome, any questions? just ask. Cindylouwho New member My husband was skin tested and dx w/ type 1 classical. I joined this group because there really isn't a great deal of information from the physicians...esp our pediatrician. My daugther has very fragile skin that needs repaired often and also freq gets large hematomas from simple bumps. She was born w/ a club foot, (surgical repair x2) umbilical hernia, (repaired) and severe nearsightedness that she wears glasses for. She also has a mild hearing impairment a diagnosis of mondini dysplasia. I didn't send her to school this yr because I was afraid of her getting hurt. I chose to begin homeschooling her so that she isnt too behind but I will allow her to start K in the fall. Oh how I dread that day! She so very much wants a friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi Robin, Welcome. There are others here that don't have EDS. They are here to learn and help loved ones. I'm Cindy C also known as Cindylouwho. My 16 year old Dylan, has type 3. The genetics Dr says I have it too , but I'm really not affected much. Dylan is the youngest of 5 boys. Time will tell if any of the others have it. The Dr thinks my twins might have it. Dylan has been home bound for 17 months now. He has a home bound teacher. He will be 17 in just days and he is still working on the 10th grade, but at least he is working on it. Most of us find that we have to educate ourselves, and then teach the doctors. Well, that's if they are willing to learn. The problem is they learn about 5 minutes or so about EDS in their schooling. Obviously, that is not enough. You spend 6 months around here and you will learn more than you ever thought you could. There is allot of information on EDS and school. Eyes, surgery, Hopefully everything you need to help you raise your daughter. There are no perfect answers, but we can offer you help, support and experience. There are support groups for children to talk to other children. I'm not sure they are as young as her, but they are available. Any way, welcome, any questions? just ask. Cindylouwho New member My husband was skin tested and dx w/ type 1 classical. I joined this group because there really isn't a great deal of information from the physicians...esp our pediatrician. My daugther has very fragile skin that needs repaired often and also freq gets large hematomas from simple bumps. She was born w/ a club foot, (surgical repair x2) umbilical hernia, (repaired) and severe nearsightedness that she wears glasses for. She also has a mild hearing impairment a diagnosis of mondini dysplasia. I didn't send her to school this yr because I was afraid of her getting hurt. I chose to begin homeschooling her so that she isnt too behind but I will allow her to start K in the fall. Oh how I dread that day! She so very much wants a friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Robin I have not been on the computer lately and started reading my emails today....so welcome to the family. You will find alot of support & information from this list. I have EDS vascular and I have learned alot more here than from the docs. Betty (from Alberta Canada) New member > Hello, > > I'm new to this group & just wanted to do a quick introduction of my > family. My name is Robin and I do not have Ehler's Danlos but my > husband and our daugther Hannah age 5 both do. I also have a > step-daughter age 8 with it who does not live w/us. My husband (Lee) > and I also have a son together but he is not effected with EDS. My > husband was skin tested and dx w/ type 1 classical. I joined this > group because there really isn't a great deal of information from the > physicians...esp our pediatrician. My husband was a foster child and > doesn't remember (or chooses not to) about his youth w/ regards to his > EDS. I know that he was hospitalized freq due to difficulty of > healing and that he has significant scarring. My daugther has very > fragile skin that needs repaired often and also freq gets large > hematomas from simple bumps. She was born w/ a club foot, (surgical > repair x2) umbilical hernia, (repaired) and severe nearsightedness > that she wears glasses for. She also has a mild hearing impairment a > diagnosis of mondini dysplasia. I didn't send her to school this yr > because I was afraid of her getting hurt. I chose to begin > homeschooling her so that she isnt too behind but I will allow her to > start K in the fall. Oh how I dread that day! She so very much wants > a friend. She talks about it every day. It breaks my heart. > Anyway...so that is us. I hope to learn alot from this group and > contribute whenever I can be of help to anyone. Thanks! > > Robin > > Maybe someone else has a young daugther that my daughter could write > to...(w/ my help of course)? They could be pen pals! > > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Robin I have not been on the computer lately and started reading my emails today....so welcome to the family. You will find alot of support & information from this list. I have EDS vascular and I have learned alot more here than from the docs. Betty (from Alberta Canada) New member > Hello, > > I'm new to this group & just wanted to do a quick introduction of my > family. My name is Robin and I do not have Ehler's Danlos but my > husband and our daugther Hannah age 5 both do. I also have a > step-daughter age 8 with it who does not live w/us. My husband (Lee) > and I also have a son together but he is not effected with EDS. My > husband was skin tested and dx w/ type 1 classical. I joined this > group because there really isn't a great deal of information from the > physicians...esp our pediatrician. My husband was a foster child and > doesn't remember (or chooses not to) about his youth w/ regards to his > EDS. I know that he was hospitalized freq due to difficulty of > healing and that he has significant scarring. My daugther has very > fragile skin that needs repaired often and also freq gets large > hematomas from simple bumps. She was born w/ a club foot, (surgical > repair x2) umbilical hernia, (repaired) and severe nearsightedness > that she wears glasses for. She also has a mild hearing impairment a > diagnosis of mondini dysplasia. I didn't send her to school this yr > because I was afraid of her getting hurt. I chose to begin > homeschooling her so that she isnt too behind but I will allow her to > start K in the fall. Oh how I dread that day! She so very much wants > a friend. She talks about it every day. It breaks my heart. > Anyway...so that is us. I hope to learn alot from this group and > contribute whenever I can be of help to anyone. Thanks! > > Robin > > Maybe someone else has a young daugther that my daughter could write > to...(w/ my help of course)? They could be pen pals! > > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2004 Report Share Posted March 15, 2004 Robin I have not been on the computer lately and started reading my emails today....so welcome to the family. You will find alot of support & information from this list. I have EDS vascular and I have learned alot more here than from the docs. Betty (from Alberta Canada) New member > Hello, > > I'm new to this group & just wanted to do a quick introduction of my > family. My name is Robin and I do not have Ehler's Danlos but my > husband and our daugther Hannah age 5 both do. I also have a > step-daughter age 8 with it who does not live w/us. My husband (Lee) > and I also have a son together but he is not effected with EDS. My > husband was skin tested and dx w/ type 1 classical. I joined this > group because there really isn't a great deal of information from the > physicians...esp our pediatrician. My husband was a foster child and > doesn't remember (or chooses not to) about his youth w/ regards to his > EDS. I know that he was hospitalized freq due to difficulty of > healing and that he has significant scarring. My daugther has very > fragile skin that needs repaired often and also freq gets large > hematomas from simple bumps. She was born w/ a club foot, (surgical > repair x2) umbilical hernia, (repaired) and severe nearsightedness > that she wears glasses for. She also has a mild hearing impairment a > diagnosis of mondini dysplasia. I didn't send her to school this yr > because I was afraid of her getting hurt. I chose to begin > homeschooling her so that she isnt too behind but I will allow her to > start K in the fall. Oh how I dread that day! She so very much wants > a friend. She talks about it every day. It breaks my heart. > Anyway...so that is us. I hope to learn alot from this group and > contribute whenever I can be of help to anyone. Thanks! > > Robin > > Maybe someone else has a young daugther that my daughter could write > to...(w/ my help of course)? They could be pen pals! > > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Welcome to the list Robin! You will find lots of information and friends here. Hugs, Sue Ginley Buffalo, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Lori, welcome to the group. I agree with what Daiga said in her post. I don't think you have been seeing a ponseti trained doctor. My daughter Isabella was born almost 21 months ago with bilateral clubbed feet at a Military hospital. They wanted to treat her right after she was born but thank god I found the board while I was pregnant with her. I emailed Dr.Ponseti and he referred me to one of the doctors on his list of preferred doctors that does the ponseti method. We drove 3 hours every week until she got her her DBB. How long does your son wear the DBB? My daughter is in it nightly around 12-13 hours a day. She is running around like crazy and doing well. We now see Dr.Dobbs at St. Louis Shriners. He was on Dr.Ponseti's preferred doctors list. I would advice you to try to find a doctor on his list to get the proper treatment.Again, Welcome to the group. (Mommy to isabella 10-12-02 bilateral cf) > > I found this link thru Dr Ponsetti's website. > > > > We're kinda new to all this. My son, Elijah is 3.5 months old. > He's > > the youngest of four. Siblings are 12, 8 and almost 2. > > > > We are live in Mississippi and are being treated by a military Dr > > using Dr Posetti's techniques. > > > > Elijah was casted at 1.5 wks old. We had weekly castings until he > had > > the tendon release surgery done at 7 wks. They casted him after > that > > and by that night, he was bleeding thru the cast. We went back the > > next day for them to cut the cast off w/the cast saw and they put > > another on. That cast came off early b/c he was pulling his foot > out > > of the boot part of the cast which caused his foot to heal at a > > downward angle instead of upward. We got another cast and that one > > stayed on 3 wks but the damage was already done. The tendon release > > was basically a waste. He was fitted for shoes but due to the > angle > > of his foot, he couldnt wear them so he went back into casts for 2 > > wks. > > Upon taking that cast off and adjusting the FAB to a 5 degree pitch > > vice the 15 degree pitch, he was able to wear the shoes. > > So here we are at 3.5 months, waiting for Daddy to come home from a > 6 > > month deployment so we can schedule another tendon release. > > > > I look forward to reading your personal accounts and finding hope > in > > your success stories. > > > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 I could be wrong, but I think also another reason to avoid the knee-high casts is that the heel isn't able to maintain it's position/stretch as well as it does in the full-length casts. s. Re: New Member Lori, welcome to you and Elijah! I'm sorry that he's had such a rough time of it. You'll find that this group is extremely supportive and knowledgeable about the Ponseti Method of treatment. If you have any questions at all, ask away! I just wanted to ask though, were Elijah's casts toe to groin casts or were they toe to knee? I ask because with the toe to groin casts, if applied properly, it is very rare that we hear of babies slipping in them...although, it is common in the toe to knee casts. Because of this, Dr. Ponseti's Method calls for toe to groin casts. Also, it is absolutely normal (and expected) for the heel of the post-tenotomy cast to become discoloured (with blood) within the first day or so. Qualified Ponseti doctors are aware of this and let parents know so that they don't become alarmed when they see it. By the time the cast comes off 3 weeks later, the incision is fully healed beneath the cast and all is well. I hate to say it but it doesn't sound like Elijah's doctor has had much experience with the Ponseti Method - as such, Elijah's care is being compromised. There are a number of doctors who will tell you that they are using the Ponseti Method when in fact, they are only using bits and pieces. These doctors are also not seeing the 90-95% success rate that the Method boasts. On Dr. Ponseti's site, there is a list of doctors qualified in the method. Is there any way that you could get Elijah to one of these doctors for a second opinion? There are many resources available for those wishing to take that leap. Daiga and Owen, 02/04/03 Unilateral LCF, FAB 14/24 > I found this link thru Dr Ponsetti's website. > > We're kinda new to all this. My son, Elijah is 3.5 months old. He's > the youngest of four. Siblings are 12, 8 and almost 2. > > We are live in Mississippi and are being treated by a military Dr > using Dr Posetti's techniques. > > Elijah was casted at 1.5 wks old. We had weekly castings until he had > the tendon release surgery done at 7 wks. They casted him after that > and by that night, he was bleeding thru the cast. We went back the > next day for them to cut the cast off w/the cast saw and they put > another on. That cast came off early b/c he was pulling his foot out > of the boot part of the cast which caused his foot to heal at a > downward angle instead of upward. We got another cast and that one > stayed on 3 wks but the damage was already done. The tendon release > was basically a waste. He was fitted for shoes but due to the angle > of his foot, he couldnt wear them so he went back into casts for 2 > wks. > Upon taking that cast off and adjusting the FAB to a 5 degree pitch > vice the 15 degree pitch, he was able to wear the shoes. > So here we are at 3.5 months, waiting for Daddy to come home from a 6 > month deployment so we can schedule another tendon release. > > I look forward to reading your personal accounts and finding hope in > your success stories. > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Thanks for the welcome! I appreciate all the comments and IM's last night! Elijah's casts have always been toe to groin. I was there when they put the post surg. cast on and best I can tell, it was done perfectly. In fact, we all commented that it was the best one yet at the time. The problem is that his foot is so tiny *Triple 0 Newborn* and as he gets older hes able to twist,turn and kick more. Since his little foot is so pliable anyway, it makes it easy for him to pull his foot out of the boot portion of the cast. In fact, he's almost pulled out of every cast since. I had to watch him closely and get him in for a cast change whenever his toes start slipping back. " I hate to say it but it doesn't sound like Elijah's doctor has had > much experience with the Ponseti Method - as such, Elijah's care is > being compromised. There are a number of doctors who will tell you > that they are using the Ponseti Method when in fact, they are only > using bits and pieces. These doctors are also not seeing the 90- 95% > success rate that the Method boasts. > > On Dr. Ponseti's site, there is a list of doctors qualified in the > method. Is there any way that you could get Elijah to one of these > doctors for a second opinion? There are many resources available for > those wishing to take that leap. " Thank you for your opinion but there has been alot more go on with his treatment than what has been discussed by me.. or could be discussed by me in just a couple posts. I appreciate the concern but Im very happy and very confident in the Dr. we have. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 OOPPPPS Please ignore this email - I meant to post it to the pics group Kori mentioned - so sorry for the mix up, Tamsin > Hi, > I just found out about this site from Kori on the nosurgery4clubfoot site. My son Jasper is > 16 weeks old and in DBB. We would like to join this list. > Tamsin > Sydney Quote Link to comment Share on other sites More sharing options...
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