Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 susan, when is chip's surgery...that is coming up......right? how are both kids doing? anymore accidents for heather? update me! he he! cindy Re: my daughter > > > Hi > > Thank you for your e-mail. > > Sara didn't have any outward signs. After having a hard time potty training > her, we realized at age three that something was possibly wrong. She would > be playing normal and suddenly squat down to keep herself from having an > accident. After watching/working with her a little closer for a month, I > called her pediatrician. > > The doctor was baffled about the sudden urge to potty but > did find she had a bladder infection. That was the first infection of many > to come over the years. > > About six months of continuing to call the doctor about what I though was a > weak bladder, the doctor finally saw what I was talking about. Sara was > playing in the hallway as the doctor and I looked on and suddenly with NO > warning, Sara went down in a holding position and her face turned beet red > as she tried to prevent an accident. > The doctor thought because she was only 3 1/2 she was being a little lazy. > I then asked/insisted on having Sara see a urologist. > > Supposedly she was sent to a very experienced (older) pediatric urologist. > NO RESULTS, but anger and hurt on my part. > > 8 1/2 years later we are where we are now. I'm hoping that I've made the > right decision for her to have surgery. > I haven't read any success stories yet, so I'm getting a little concerned. > > Do you know of any success stories on children being dethered and not having > to have it done again? > > Her surgery is scheduled for 8/20 and I need all the information I can find. > > Thank you so much for sharing your experience. > Sincerely, > Connie > Sara's mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Hi Connie, What type of tethered cord does Sara have? I am guessing short or thickened filum? My daughter was diagnosed with Chiari first, then a few years later, thickened filum. (Chiari is at the brain end of the spinal cord). 's surgeon thinks these two anomalies often appear together. Or maybe it's just if a Chiari is found, a tethered cord should be investigated? (and not the other way around?) 's filum was released at the beginning of this year, she was almost 7 then. Her noticeable symptoms were right sided weakness -- so she walked like she'd had a small stroke -- and lots of constipation problems. It's been about 6 months and we've seen some wonderful improvement. There are a lot of wonderful people that respond on this board that are way more knowledgeable than I am. Just wanted to share our daughter's experience. It has been positive (but it didn't stop me from agonizing over the decision to go ahead with the surgery!) Best wishes, 's mom my daughter Hello, I am new to the group and am searching for information and support. My 12 yr old has recently been diagnosed with Spina Bifida Occulta and has a tethered cord. We realized she had problems shortly after turning three. We then began the long journey to find answers. We were first told she had behavioral problems....I knew better! This past spring, after many discussions with her pediatrian, I insisted she see another pediatric urologist. This one was very interested in what I had to say and then showed me her x-rays and guess what....I was right all along. We then saw the neurosurgeon who has been doing this kind of surgery for the past ten years. She seems to be right on top of everything. I have done a lot of research now, but I haven't found out too much about the surgery on children. She is scheduled to have surgery on August 20th. I'm hoping to find out more about the surgery etc. Thank you! Connie (my daughter is Sara) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Hi Connie, What type of tethered cord does Sara have? I am guessing short or thickened filum? My daughter was diagnosed with Chiari first, then a few years later, thickened filum. (Chiari is at the brain end of the spinal cord). 's surgeon thinks these two anomalies often appear together. Or maybe it's just if a Chiari is found, a tethered cord should be investigated? (and not the other way around?) 's filum was released at the beginning of this year, she was almost 7 then. Her noticeable symptoms were right sided weakness -- so she walked like she'd had a small stroke -- and lots of constipation problems. It's been about 6 months and we've seen some wonderful improvement. There are a lot of wonderful people that respond on this board that are way more knowledgeable than I am. Just wanted to share our daughter's experience. It has been positive (but it didn't stop me from agonizing over the decision to go ahead with the surgery!) Best wishes, 's mom my daughter Hello, I am new to the group and am searching for information and support. My 12 yr old has recently been diagnosed with Spina Bifida Occulta and has a tethered cord. We realized she had problems shortly after turning three. We then began the long journey to find answers. We were first told she had behavioral problems....I knew better! This past spring, after many discussions with her pediatrian, I insisted she see another pediatric urologist. This one was very interested in what I had to say and then showed me her x-rays and guess what....I was right all along. We then saw the neurosurgeon who has been doing this kind of surgery for the past ten years. She seems to be right on top of everything. I have done a lot of research now, but I haven't found out too much about the surgery on children. She is scheduled to have surgery on August 20th. I'm hoping to find out more about the surgery etc. Thank you! Connie (my daughter is Sara) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Hi Connie, What type of tethered cord does Sara have? I am guessing short or thickened filum? My daughter was diagnosed with Chiari first, then a few years later, thickened filum. (Chiari is at the brain end of the spinal cord). 's surgeon thinks these two anomalies often appear together. Or maybe it's just if a Chiari is found, a tethered cord should be investigated? (and not the other way around?) 's filum was released at the beginning of this year, she was almost 7 then. Her noticeable symptoms were right sided weakness -- so she walked like she'd had a small stroke -- and lots of constipation problems. It's been about 6 months and we've seen some wonderful improvement. There are a lot of wonderful people that respond on this board that are way more knowledgeable than I am. Just wanted to share our daughter's experience. It has been positive (but it didn't stop me from agonizing over the decision to go ahead with the surgery!) Best wishes, 's mom my daughter Hello, I am new to the group and am searching for information and support. My 12 yr old has recently been diagnosed with Spina Bifida Occulta and has a tethered cord. We realized she had problems shortly after turning three. We then began the long journey to find answers. We were first told she had behavioral problems....I knew better! This past spring, after many discussions with her pediatrian, I insisted she see another pediatric urologist. This one was very interested in what I had to say and then showed me her x-rays and guess what....I was right all along. We then saw the neurosurgeon who has been doing this kind of surgery for the past ten years. She seems to be right on top of everything. I have done a lot of research now, but I haven't found out too much about the surgery on children. She is scheduled to have surgery on August 20th. I'm hoping to find out more about the surgery etc. Thank you! Connie (my daughter is Sara) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Connie, Welcome to the group and you have come to the right place you will find other mothers in your same situation. I myself have SB occulta that was found at age six. I had my first detethering done at that time but it did not help my bladder issues and six months later was given an ostomy for the urine. I am now 40 and had four surgeries since for detetherings over the years most recent in March of this year. Mine were done at age 6,18,21 and 40. I did very well as a child between my surgeries. Until the last few years my main problems have been with kidney stones and uti's which have to do with the ostomy. I also have had 4 children. Which is probably the reason for some of my most recent trouble. They did tell me no more after the first two but I didn't listen well. LOL Sorry to here yet another mothers story of having to fight to find this. You will find others that have gone through the same thing on this list as did my mother. What outward signs did your daughter have if any. Dimple or patch of course hair? Mine was a big dimple on my tail bone with a patch of course hair next to it. They told my mother it was nothing. I hope some of this helps in making you feel so not alone. This group is wonderful I think you are going to like these people. Chris my daughter Hello, I am new to the group and am searching for information and support. My 12 yr old has recently been diagnosed with Spina Bifida Occulta and has a tethered cord. We realized she had problems shortly after turning three. We then began the long journey to find answers. We were first told she had behavioral problems....I knew better! This past spring, after many discussions with her pediatrian, I insisted she see another pediatric urologist. This one was very interested in what I had to say and then showed me her x-rays and guess what....I was right all along. We then saw the neurosurgeon who has been doing this kind of surgery for the past ten years. She seems to be right on top of everything. I have done a lot of research now, but I haven't found out too much about the surgery on children. She is scheduled to have surgery on August 20th. I'm hoping to find out more about the surgery etc. Thank you! Connie (my daughter is Sara) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Connie, Welcome to the group and you have come to the right place you will find other mothers in your same situation. I myself have SB occulta that was found at age six. I had my first detethering done at that time but it did not help my bladder issues and six months later was given an ostomy for the urine. I am now 40 and had four surgeries since for detetherings over the years most recent in March of this year. Mine were done at age 6,18,21 and 40. I did very well as a child between my surgeries. Until the last few years my main problems have been with kidney stones and uti's which have to do with the ostomy. I also have had 4 children. Which is probably the reason for some of my most recent trouble. They did tell me no more after the first two but I didn't listen well. LOL Sorry to here yet another mothers story of having to fight to find this. You will find others that have gone through the same thing on this list as did my mother. What outward signs did your daughter have if any. Dimple or patch of course hair? Mine was a big dimple on my tail bone with a patch of course hair next to it. They told my mother it was nothing. I hope some of this helps in making you feel so not alone. This group is wonderful I think you are going to like these people. Chris my daughter Hello, I am new to the group and am searching for information and support. My 12 yr old has recently been diagnosed with Spina Bifida Occulta and has a tethered cord. We realized she had problems shortly after turning three. We then began the long journey to find answers. We were first told she had behavioral problems....I knew better! This past spring, after many discussions with her pediatrian, I insisted she see another pediatric urologist. This one was very interested in what I had to say and then showed me her x-rays and guess what....I was right all along. We then saw the neurosurgeon who has been doing this kind of surgery for the past ten years. She seems to be right on top of everything. I have done a lot of research now, but I haven't found out too much about the surgery on children. She is scheduled to have surgery on August 20th. I'm hoping to find out more about the surgery etc. Thank you! Connie (my daughter is Sara) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Connie, Welcome to the group and you have come to the right place you will find other mothers in your same situation. I myself have SB occulta that was found at age six. I had my first detethering done at that time but it did not help my bladder issues and six months later was given an ostomy for the urine. I am now 40 and had four surgeries since for detetherings over the years most recent in March of this year. Mine were done at age 6,18,21 and 40. I did very well as a child between my surgeries. Until the last few years my main problems have been with kidney stones and uti's which have to do with the ostomy. I also have had 4 children. Which is probably the reason for some of my most recent trouble. They did tell me no more after the first two but I didn't listen well. LOL Sorry to here yet another mothers story of having to fight to find this. You will find others that have gone through the same thing on this list as did my mother. What outward signs did your daughter have if any. Dimple or patch of course hair? Mine was a big dimple on my tail bone with a patch of course hair next to it. They told my mother it was nothing. I hope some of this helps in making you feel so not alone. This group is wonderful I think you are going to like these people. Chris my daughter Hello, I am new to the group and am searching for information and support. My 12 yr old has recently been diagnosed with Spina Bifida Occulta and has a tethered cord. We realized she had problems shortly after turning three. We then began the long journey to find answers. We were first told she had behavioral problems....I knew better! This past spring, after many discussions with her pediatrian, I insisted she see another pediatric urologist. This one was very interested in what I had to say and then showed me her x-rays and guess what....I was right all along. We then saw the neurosurgeon who has been doing this kind of surgery for the past ten years. She seems to be right on top of everything. I have done a lot of research now, but I haven't found out too much about the surgery on children. She is scheduled to have surgery on August 20th. I'm hoping to find out more about the surgery etc. Thank you! Connie (my daughter is Sara) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Hi , I didn't know there were 'types' of tethered cord. I am going to call the neurosurgeon today and inquire about it. Sara's symptoms have mostly been bladder infections, and not knowing she has to potty until the very last second. We have noticed some bowel problems but she doesn't have any accidents. She also has pains in her knee(s), which they diagnosed as Juvenile Rheumatoid Arthritis when she was 5 1/2 yrs old. Now the neurologist is questioning if she really has JRT since knee aches are common with a tethered cord. We thought her legs weren't as strong as they should be since she is very active. Soccer, swimming and gymnastics has helped a lot. She is playing select soccer and has good ball handling skills, but not a lot of strength in her kicks. We never thought in a million years there could be a reason for her problems. We knew something was wrong, but just couldn't get her doctor to listen to us. I don't want my daughter to know this, but after everything I'm reading, I'm a little scared of the impending surgery. I hope and pray that I'm not opening the door for a lot of medical problems down the road. From what I was told, her neurosurgeon has perfected this operation and has had great success rate the past 10 years. I hope so. I think I'm turning into a bundle of nerves. Thank you for sharing your situation with me. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Hi , I didn't know there were 'types' of tethered cord. I am going to call the neurosurgeon today and inquire about it. Sara's symptoms have mostly been bladder infections, and not knowing she has to potty until the very last second. We have noticed some bowel problems but she doesn't have any accidents. She also has pains in her knee(s), which they diagnosed as Juvenile Rheumatoid Arthritis when she was 5 1/2 yrs old. Now the neurologist is questioning if she really has JRT since knee aches are common with a tethered cord. We thought her legs weren't as strong as they should be since she is very active. Soccer, swimming and gymnastics has helped a lot. She is playing select soccer and has good ball handling skills, but not a lot of strength in her kicks. We never thought in a million years there could be a reason for her problems. We knew something was wrong, but just couldn't get her doctor to listen to us. I don't want my daughter to know this, but after everything I'm reading, I'm a little scared of the impending surgery. I hope and pray that I'm not opening the door for a lot of medical problems down the road. From what I was told, her neurosurgeon has perfected this operation and has had great success rate the past 10 years. I hope so. I think I'm turning into a bundle of nerves. Thank you for sharing your situation with me. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Hi , I didn't know there were 'types' of tethered cord. I am going to call the neurosurgeon today and inquire about it. Sara's symptoms have mostly been bladder infections, and not knowing she has to potty until the very last second. We have noticed some bowel problems but she doesn't have any accidents. She also has pains in her knee(s), which they diagnosed as Juvenile Rheumatoid Arthritis when she was 5 1/2 yrs old. Now the neurologist is questioning if she really has JRT since knee aches are common with a tethered cord. We thought her legs weren't as strong as they should be since she is very active. Soccer, swimming and gymnastics has helped a lot. She is playing select soccer and has good ball handling skills, but not a lot of strength in her kicks. We never thought in a million years there could be a reason for her problems. We knew something was wrong, but just couldn't get her doctor to listen to us. I don't want my daughter to know this, but after everything I'm reading, I'm a little scared of the impending surgery. I hope and pray that I'm not opening the door for a lot of medical problems down the road. From what I was told, her neurosurgeon has perfected this operation and has had great success rate the past 10 years. I hope so. I think I'm turning into a bundle of nerves. Thank you for sharing your situation with me. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Hi Connie, My daughter had her surgery when she was 12, too. She has done very well and has not required another surgery so far. Her symptoms were pain and numbness in her feet, legs, and back. She has been very fortunate not to have other symptoms or damage. We continue to deal with pain issues, but for the most part she's fine. If not for this group and the other one specifically for children, I'd have gone totally crazy. (of course, there are those who would say I waited too long!) Anyway-- since we're in Mississippi, I can't recommend anyone in Texas-- but I'm sure there are some great surgeons in the Houston area. You might try calling the Spina Bifida Association in Houston and ask them to recommend someone. Best of luck to you and your Sara-- and feel free to ask anything you need to here... JR, Mom to , 17 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Connie, My daughter had the surgery in 1/01 she was diagnosed 9/00 when she was 8 years old. My daughter had UTI after UTI since the age of 3 until she was finally diagnosed. She experienced the same sudden urges and would squat when she realized she had a sensation to urinate and it was almost too late (and sometimes it was). My daughter is now 10 1/2 and it has been 2 1/2 years since her surgery and we are just beginning to see the results. She has been UTI free for 9 months and only occasionally will I notice the blank stare when she has to use the restroom. She has begun to experience more sensation sooner when having to urinate in the last 9 months. I am a firm believer in the surgery knowing first hand how it has improved my daughters condition. In my daughters case it has taken alot of patients and time to see the results. The body has to learn to react differently and the child needs to learn how to adjust to the new sensations and then you will see the results. Good luck!!!!! Denenne's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 connie, this is EXACTLY my daughter's situation. except because of her brother's birth, we found hers in january, 2003. please call me at home, . so we can talk and not tie up the board w/ my situation. my daughter's name is heather and she had surgery in march, 2003. my son chip, has it also. my name is susan. thanks a lot. i know exactly how you feel. Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 connie, this is EXACTLY my daughter's situation. except because of her brother's birth, we found hers in january, 2003. please call me at home, . so we can talk and not tie up the board w/ my situation. my daughter's name is heather and she had surgery in march, 2003. my son chip, has it also. my name is susan. thanks a lot. i know exactly how you feel. Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 connie, this is EXACTLY my daughter's situation. except because of her brother's birth, we found hers in january, 2003. please call me at home, . so we can talk and not tie up the board w/ my situation. my daughter's name is heather and she had surgery in march, 2003. my son chip, has it also. my name is susan. thanks a lot. i know exactly how you feel. Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Connie, I had my first surgery done like I said at age six and was told at that time that when my body was done growing I would most likely have to have it done again and you will find this is the case with many of us that were caught early. My bladder issues were not reversible and this is something else you will find on this list is very few don't have bladder trouble even after surgery. Most end up using a catheter to empty there bladders three to five times a day. Your daughter is still young and may be one of the lucky ones if her symptoms are not that severe as of yet. There is a lot of new stuff out there if you find the right doctors that are willing to try it. She obviously needs a decent urologist and because TC and bladder trouble seem to go together maybe your NSG can help you find a good one. I did need my second detethering at age 18 when I was done growing. And I'm guessing on this but if I hadn't had my children I would not of needed further surgery. But I would not give up one of them. LOL So I was a success up until 5 years ago. My surgeries as a child kept me walking and mobile for a good part of my life. Even my most recent has made my mobility problems a lot less to deal with so I have benefited from all four surgeries. I wish these pediatricians would learn to look for TC and SB when urinary track problems arrise. I believe if they did they could catch this stuff a whole lot sooner. I really could understand it back 40 years ago when I was born but give me a break these days things should be different. I'm sure you will here other success stories from people on this list. You will also here the other side that isn't quite so pretty but the choice in the end is yours. My doctors always said it like this " Things can get better , worse or stay the same " There is No guarantees with this surgery. Kids seem to handle this surgery a whole lot better then us adults any way. I didn't have trouble with the surgeries when I was young but this last one kind of kicked my butt. I was 16 days in the hospital because of a CSF leak that they had to fix. So everyone is different. Hope this helps . Chris Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 chris, i agree w/ you about everything that you said. by the way, i have been busy w/ out of town company and a funeral. i only read the last 10 posts. so, i don't know about how your pain is or not resolving. i hope that your pain is calming down. i felt for you post op. my child's pediatricians now refer all children w/ markers or symptoms for mri's. all kind of tethered cords are coming up. they are doing this because of me and my children. like connie, they blew off heather's benign urinary symptoms because she is so active. after chip and then finding heather's, they have changed their attitude towards markers never being anything. at least that is some very small corner of the world that has changed. they are very good pediatricians, i believe that the real changes need to coming in re-educating current medical professionals and changing the neuro content in school a bit. i am now on a mission to see that all new babies in louisville, ky get a neuro assessment in the hospital. i will branch out from there to the rest of the country.i asked my peds if they do one, they said yes, but i am going to ask exactly what do they do? because chip completely flunked mine and this particular ped dr. is saying that he passed. i would blow it off to the fact that symptoms can be intermittent, but when i did the assessment in front of her she acknowledged it. but, now she is saying that he didn't do that in front of her. it really doesn't matter to me at all, but, she brought it up last week, when i took my children in for bronchitis. i wanted to say, " could you please stop making excuses because i am not blaming, i am just thankful that both were found at all. " but, then as i write this, i feel that maybe she feels guilty and she is trying to say sorry or not take the blame, and maybe if we had known sooner w/ heather and had surgery 2-3 years earlier like we will w/ chip, then her night time incontinence would be resolved. and i know that is such a minor thing, that i should be grateful, and i am. yak, yak, yak. sorry to be so boring. susan fenley. Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 Dear Connie, I hated to read about your very long road with your daughter Sara. My daughter, Jordan, was born with a tethered spinal cord, which was repaired with surgery at 4 months of age. Since then, she has been symptom free, with no deficits whatsoever. Her " bathroom issues " started surfacing in the last year or so, with recurrent UTI's, and we are currently seeing doctors to determine whether or not she's retethered. We were hoping to never have to face this, as she has been so healthy since infancy. Her neurosurgeon told us early on that he would monitor her yearly until she's full grown (around age 18), in particular during growth spurt times. Apparently, since that's the time when nerves need to stretch the most, symptoms may start to appear if something's wrong . . .? Our neurosurgeon told us just recently that some doctors now say that tethered cords will retether 100% of the time, while others say they may never have a problem with it again. We're finding more and more that there are no certainties with the surgery being done, and it's anguishing, as a parent, to make that decision. Jordan is 10 now, and is feeling very " different " because of her condition. By reading your e-mail, I figured that your daughter may be close in age to Jordan, and they could possibly help each other better deal with their respective situations. Jordan and I have talked over the years about how nice it would be to have someone her own age to talk to who can relate. If Sara would be willing to write to Jordan, our personal e-mail address is jjenkins@.... I know it helps me to talk to other moms! Hope to hear from you, Jordan's mom Washington, MO Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Hi , It is good to here from you again. I'm glad you finally got through to one pediatrician. Maybe from one it will turn into more. I think I am going to have a talk with mine also about this fact of checking these children for the markers. I realize not all have the small outward signs. I had amnios with my children because of my SB and nothing showed in them but don't think I didn't check my babies from head to toe after they were born. I still wonder if something could have been missed because now I realize that some have no signs or outward markings. Mine all seem to be healthy other than what my 15 year old went through the last few weeks with his strep and the kidney thing. You can read about what happened if you go back and read Bad week posted last week by me. What a nightmare that was. I so feel for those of you that have children that have chronic health problems. As a mother it just drives you crazy. It is one thing to have my kidneys shut down it is totally another to have it happen to your child. Do you know why you have two children with the TC? I'm sorry if I missed that explanation. Do they have just TC or Do they have SB too? I will have that talk with my peds doctor and let you know what he has to say about if he knows to check for the markers or if he has ever had a child with it come through his care. I know he told me that he had never seen what my son went through happen but he was very good about knowing what it was and getting to the right specialist on time. Well talk to you soon. Chris Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Hi , It is good to here from you again. I'm glad you finally got through to one pediatrician. Maybe from one it will turn into more. I think I am going to have a talk with mine also about this fact of checking these children for the markers. I realize not all have the small outward signs. I had amnios with my children because of my SB and nothing showed in them but don't think I didn't check my babies from head to toe after they were born. I still wonder if something could have been missed because now I realize that some have no signs or outward markings. Mine all seem to be healthy other than what my 15 year old went through the last few weeks with his strep and the kidney thing. You can read about what happened if you go back and read Bad week posted last week by me. What a nightmare that was. I so feel for those of you that have children that have chronic health problems. As a mother it just drives you crazy. It is one thing to have my kidneys shut down it is totally another to have it happen to your child. Do you know why you have two children with the TC? I'm sorry if I missed that explanation. Do they have just TC or Do they have SB too? I will have that talk with my peds doctor and let you know what he has to say about if he knows to check for the markers or if he has ever had a child with it come through his care. I know he told me that he had never seen what my son went through happen but he was very good about knowing what it was and getting to the right specialist on time. Well talk to you soon. Chris Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Hi , It is good to here from you again. I'm glad you finally got through to one pediatrician. Maybe from one it will turn into more. I think I am going to have a talk with mine also about this fact of checking these children for the markers. I realize not all have the small outward signs. I had amnios with my children because of my SB and nothing showed in them but don't think I didn't check my babies from head to toe after they were born. I still wonder if something could have been missed because now I realize that some have no signs or outward markings. Mine all seem to be healthy other than what my 15 year old went through the last few weeks with his strep and the kidney thing. You can read about what happened if you go back and read Bad week posted last week by me. What a nightmare that was. I so feel for those of you that have children that have chronic health problems. As a mother it just drives you crazy. It is one thing to have my kidneys shut down it is totally another to have it happen to your child. Do you know why you have two children with the TC? I'm sorry if I missed that explanation. Do they have just TC or Do they have SB too? I will have that talk with my peds doctor and let you know what he has to say about if he knows to check for the markers or if he has ever had a child with it come through his care. I know he told me that he had never seen what my son went through happen but he was very good about knowing what it was and getting to the right specialist on time. Well talk to you soon. Chris Re: my daughter Hi Thank you for your e-mail. Sara didn't have any outward signs. After having a hard time potty training her, we realized at age three that something was possibly wrong. She would be playing normal and suddenly squat down to keep herself from having an accident. After watching/working with her a little closer for a month, I called her pediatrician. The doctor was baffled about the sudden urge to potty but did find she had a bladder infection. That was the first infection of many to come over the years. About six months of continuing to call the doctor about what I though was a weak bladder, the doctor finally saw what I was talking about. Sara was playing in the hallway as the doctor and I looked on and suddenly with NO warning, Sara went down in a holding position and her face turned beet red as she tried to prevent an accident. The doctor thought because she was only 3 1/2 she was being a little lazy. I then asked/insisted on having Sara see a urologist. Supposedly she was sent to a very experienced (older) pediatric urologist. NO RESULTS, but anger and hurt on my part. 8 1/2 years later we are where we are now. I'm hoping that I've made the right decision for her to have surgery. I haven't read any success stories yet, so I'm getting a little concerned. Do you know of any success stories on children being dethered and not having to have it done again? Her surgery is scheduled for 8/20 and I need all the information I can find. Thank you so much for sharing your experience. Sincerely, Connie Sara's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2012 Report Share Posted July 3, 2012 My 15 year old daughter has been suffering with EN for 3 months. I'm hoping she's almost through it. Her fevers are gone. Her cough is gone. Her legs look great. She is still having some swelling in her ankles and feet though not nearly as much as she had. She did have a biopsy of one of the lumps last week (still waiting for the results) and she had an MRI on Friday. They wanted to check her gastrointestinal system for inflamation. She'd been having some gastro issues recently (of course she's been taking 600mg of ibuprofen every six hours for weeks). Does any of this sound familiar to anyone? Does it sound like she's close to the end of this? It has been so informational and comforting to read everyone's stories. It is so important to know you are not alone in this. Thank you to everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2012 Report Share Posted July 3, 2012 I wish I could say that EN was just a one time thing, but unless you find the problem, she will still have it. Because EN is an 'auto-immune' disease, it is just her body responding to a bigger problem. EN is just her bodies response to the problem, not the actual problem, so 'treating' the EN will never fix the problem. You have to treat the bigger problem. To give you an example, most Americans are dehydrated... so when we get a headache (which is a symptom of dehydration) we take a tylenol or advil to dull the pain, instead of drinking more water to fix the dehydration, which in turn removes all the symptoms which includes the headache!I got EN after getting the Hep B vaccine when I was 17. That was 13 years ago. I'm finally coming to this realization about allopathic medicine (treat the symptoms of the problem) vs. naturopathy (treat the bigger problem, prevent recurrences). Start by doing cleanses to make the body as toxin-free as possible, so that the body can heal itself. Make sure that it is receiving lots of nutrient dense foods! It does take a little more work and effort, but it will NOT have the damaging effects that years of prescription drugs will, nor will it have the nasty side-effects.For the remaining years of high-school and all of my college years, I went from specialist to specialist (all over Massachusetts and Virginia), had 2 biopsies, at one point was told that I had 6 months to live, had lots of X-Rays, took a ton of liver destroying drugs (Prednisone, steroids, SSKI solution, prescription strength advil and tylenol... I took EVERY EN drug they recommended and NOTHING worked!!!) and cost my parents over ten thousand dollars! I felt like a human guinea pig and became very disenfranchised with the medical industry because they couldn't fix me and couldn't even answer my questions. No to mention all the other specialists I had to see to make sure I wasn't having side-effects of the drugs: seeing a ophthalmologist to make sure I wasn't developing glaucoma or going blind and having monthly blood draws to make sure my liver wasn't failing from the high dose pain-killers and prednisone.After I got married and we got pregnant with our first child (and I couldn't take ANY EN drugs) we decided to try and go the natural route. The problem was I has spent the previous 6 years on prescription drugs. So I was pretty toxic. Now that we are done having children (and I'm no longer pregnant or nursing) I'm going to start doing some cleanses (mainly Liver, as that is where vaccines are metabolized) to prepare my body for healing.I encourage you to look into natural alternatives. ML has had amazing success with her naturopathic doctor and has been EN free for a year now! It took her some diligence, but after I suffered for 13 years of pain and trying to me a good mom, while at the same time having to keep your children at arm's length for fear of pain, I am willing to make any changes necessary to be done with EN! I just weaned my daughter last month and will be starting a cleanse, so I will try to keep you posted as to how it works! Adamo To: erythema_nodosum_Group From: jerif02@...Date: Tue, 3 Jul 2012 08:29:31 -0700Subject: My daughter My 15 year old daughter has been suffering with EN for 3 months. I'm hoping she's almost through it. Her fevers are gone. Her cough is gone. Her legs look great. She is still having some swelling in her ankles and feet though not nearly as much as she had. She did have a biopsy of one of the lumps last week (still waiting for the results) and she had an MRI on Friday. They wanted to check her gastrointestinal system for inflamation. She'd been having some gastro issues recently (of course she's been taking 600mg of ibuprofen every six hours for weeks). Does any of this sound familiar to anyone? Does it sound like she's close to the end of this? It has been so informational and comforting to read everyone's stories. It is so important to know you are not alone in this. Thank you to everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2012 Report Share Posted July 4, 2012 I'm sorry to hear about your daughter - I don't have EN but my sister has PG so I sometimes lurk and learn on the board. I also have Rheumatoid Arthritis so I want to caution you about the ibuprofen. I was put on the same amount of ibuprofen as your daughter is on now. After about 3 weeks I ended up in the hospital with GI bleeding, caused by the ibuprofen. Please get her checked out as there are many people who can't take any of the NSAIDS (non-steroidal anti-inflammatory drugs) due to stomach/intestinal issues. Unfortunately there is really no way of knowing who will have problems with NSAIDS until it happens but if your daughter is having ulcer-like pain or upper gastric distress I'd consider whether or not the ibuprofen is the culprit. If it is, you'll have to be careful with other similar drugs and your daughter should let any doctor know that she has this problem. I hope that y'all will be able to learn on the board as I have and these folks are all very helpful sharing information. Good Luck! Quote Link to comment Share on other sites More sharing options...
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