Guest guest Posted August 2, 2005 Report Share Posted August 2, 2005 Hi, I am a silent reader. Our daughter Cassie is 14 years old, we just had her in to see an opthamologist about her constant tearing, she has started wanting to wear a littel make-up and it is making a mess of that. We were told whenshe was younger that she did not have the tear ducts or any punctums, so our only option was to do J-Tubes.We didn't do it at the time, becuase we felt we would wait until she was old enough to make that decision and hopefully they would come up with something different. Well, we received the same answer J-Tubes, are these different from stents? How do the stents work? Cassie also has bladder control problems at night, she still wears pullups. Our Dr. told us she would grow out of it.(RIGHT???) Anyways we went to a urologist and we have tried the different medications for the past year and a half with no results. So,they brought up the idea of a Interstim Therapy Unit. It is made by Medtronic-they make heart pace makers. It works by putting the lead wire on the sacral nerve and you then have the battery pack implanted in your butt cheek. Has anyone had this done or is familiar with this? One more thing, I know awhile back someone was talking about puberty and taking premarin. Cassie also was not kicking into puberty on her own. We went to see a endo Dr. she told us that her body would never do it on her own and she did put her on Premarin, Cassie is now on the second to lowest dose. We are slowly seeing her body change. (Cassie would love for it go faster) I asked our Dr. if she thought a ultrsound would be beneficial to see if the ovaries and all the female parts are there, but she wasn't in a rush to do this? Does anyone have any input on this? I know that this is getting long, but to give a little light to all of you with younger CHARGERS. I have watched our daughter go from fighting to keep her balance just to stay upright(She had stitches a few times) to a beautiful successful teenager. SHe is at camp right now, it is a D/HH camp. Right before she left I asked her if she was positve this is what she wanted to do, becuase it is for 2 weeks. Her reply was mom.....if you do not ever take chances or do not do things because you are a little afraid, then you are in trouble becuase you will never get any where. Out of the mouth of my little babe.It was hard letting her go, she is our youngest child, and I have been there fighting for her all the way. It makes it harder to let go, but at the same time that is what we are fighting for, isn't it.To someday let them go and for them to be independent. Cheryl, Jim, Cassie momonamission@... wrote: Joanne - Aubrie had several tear duct probes in her first years. She finally had stents and now has no trouble with drainage. Until you mentioned it, I'd forgotten about the constant tearing. People used to think she was always crying. Michele W Aubrie's mom 7 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2005 Report Share Posted August 3, 2005 Cheryl, I haven't been on the list for a while. Though I would share some liknesses. Our (will be 21 in Sept.) had one eye with a blocked tear duct, they did surgery twice when she was an infant. It worked. I don't know what J-tubes are. had night time bladder control problems until she was about 16 years old. She slept so soundly she wouldn't wake up. She finally did out grow it on her one but has shared she still has occasional slight accidents. Again, I am not familiar with the therapy you mentioned. was placed on the pill at 16 years. It took them many years to decide if she had a uterus. Ultrasounds were inconclusive when she was small. She depends on the pill for her periods. She was born without a vagina, They made one. I can relate to many of you concerns. I understand your reluctance to " let go " . I felt the same way. told us the same thing Cassie told you. I encourage you to let go. The pay off is wonderful. Our has been on her own for two years now. I was a basket case at first but her dad and I are now used to the empty house. is our youngest too. She attends college (nursing program) an hour and a half away. and fought and continues to fight many health issues but she has won so many battles she doesn't know the word " can't " . Best wishes to you and your family. Lynn Mom to Tom 26, almost 21,cHARGE, and wife to Doug Re: Re: eye stuff Hi, I am a silent reader. Our daughter Cassie is 14 years old, we just had her in to see an opthamologist about her constant tearing, she has started wanting to wear a littel make-up and it is making a mess of that. We were told whenshe was younger that she did not have the tear ducts or any punctums, so our only option was to do J-Tubes.We didn't do it at the time, becuase we felt we would wait until she was old enough to make that decision and hopefully they would come up with something different. Well, we received the same answer J-Tubes, are these different from stents? How do the stents work? Cassie also has bladder control problems at night, she still wears pullups. Our Dr. told us she would grow out of it.(RIGHT???) Anyways we went to a urologist and we have tried the different medications for the past year and a half with no results. So,they brought up the idea of a Interstim Therapy Unit. It is made by Medtronic-they make heart pace makers. It works by putting the lead wire on the sacral nerve and you then have the battery pack implanted in your butt cheek. Has anyone had this done or is familiar with this? One more thing, I know awhile back someone was talking about puberty and taking premarin. Cassie also was not kicking into puberty on her own. We went to see a endo Dr. she told us that her body would never do it on her own and she did put her on Premarin, Cassie is now on the second to lowest dose. We are slowly seeing her body change. (Cassie would love for it go faster) I asked our Dr. if she thought a ultrsound would be beneficial to see if the ovaries and all the female parts are there, but she wasn't in a rush to do this? Does anyone have any input on this? I know that this is getting long, but to give a little light to all of you with younger CHARGERS. I have watched our daughter go from fighting to keep her balance just to stay upright(She had stitches a few times) to a beautiful successful teenager. SHe is at camp right now, it is a D/HH camp. Right before she left I asked her if she was positve this is what she wanted to do, becuase it is for 2 weeks. Her reply was mom.....if you do not ever take chances or do not do things because you are a little afraid, then you are in trouble becuase you will never get any where. Out of the mouth of my little babe.It was hard letting her go, she is our youngest child, and I have been there fighting for her all the way. It makes it harder to let go, but at the same time that is what we are fighting for, isn't it.To someday let them go and for them to be independent. Cheryl, Jim, Cassie momonamission@... wrote: Joanne - Aubrie had several tear duct probes in her first years. She finally had stents and now has no trouble with drainage. Until you mentioned it, I'd forgotten about the constant tearing. People used to think she was always crying. Michele W Aubrie's mom 7 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2005 Report Share Posted August 3, 2005 Joanne, I haven't had any dealings with the he tearducts so good luck on that. Hope it works out well. I also haven't heard of the Interstim Therapy Unit. I have used a different unit with another child. She too was incontinent but was but was totally incontinent. It was a very small machine, about two inches by three inches, which were attached to electrodes we attached to the child's underwear. The instant the child urinated it would alarm and vibrate. That notified the child when she was urinating. We then had to do trip training. She was nonverbal so we used pictures as well. She didn't like it at first but after about two months she was totally trained. Could you use something like that first? As for the puberty, our daughter Patty went through puberty very late and finally they put her on orthotrycyclene to finish what her body wouldn't let her. During one of her ultrasounds to look at her kidneys they found she is missing one of her ovaries. This hasn't changed the way we do things for her, such as medications, etc., but it does help in understanding her menstrual cycle and it helps our/her piece of mind. As for the hormonal stuff, I think it does help when we understand our(their) bodies. I do have to say that we had to help Patty with her changing into an adult body not only for her health but for her emotional/social health. All the other girls had their period.... Cassie sounds like she is one determined person. How nice is it that she has that bravery to let go and try things on her own. Yes, it is what you all have been fighting for. Let us know how she is when she comes home. Bonnie, Mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2005 Report Share Posted August 3, 2005 nice to see you now i have to be carful to splell you name right lol course other wise id get you mixed up with sherryl wouldnt i sherryl i no she wouldnt mind if i did but still it would be confusing lol well im ellenhowe from aus it wear napys at night im 20 and my endo and other doctors think its just me they cant and dont do anything course im continant all the rest of the time ellen from aus > > Cheryl, > I haven't been on the list for a while. Though I would share some > liknesses. Our (will be 21 in Sept.) had one eye with a blocked tear > duct, they did surgery twice when she was an infant. It worked. I don't know > what J-tubes are. had night time bladder control problems until she > was about 16 years old. She slept so soundly she wouldn't wake up. She > finally did out grow it on her one but has shared she still has occasional > slight accidents. Again, I am not familiar with the therapy you mentioned. > was placed on the pill at 16 years. It took them many years to decide > if she had a uterus. Ultrasounds were inconclusive when she was small. She > depends on the pill for her periods. She was born without a vagina, They > made one. I can relate to many of you concerns. > I understand your reluctance to " let go " . I felt the same way. told > us the same thing Cassie told you. I encourage you to let go. The pay off is > wonderful. Our has been on her own for two years now. I was a basket > case at first but her dad and I are now used to the empty house. is > our youngest too. She attends college (nursing program) an hour and a half > away. > and fought and continues to fight many health issues but she has won > so many battles she doesn't know the word " can't " . > Best wishes to you and your family. > Lynn > Mom to Tom 26, almost 21,cHARGE, and wife to Doug > > Re: Re: eye stuff > > > Hi, I am a silent reader. Our daughter Cassie is 14 years old, we just had > her in to see an opthamologist about her constant tearing, she has started > wanting to wear a littel make-up and it is making a mess of that. We were > told whenshe was younger that she did not have the tear ducts or any > punctums, so our only option was to do J-Tubes.We didn't do it at the > time, becuase we felt we would wait until she was old enough to make that > decision and hopefully they would come up with something different. Well, we > received the same answer J-Tubes, are these different from stents? How do > the stents work? > > Cassie also has bladder control problems at night, she still wears > pullups. Our Dr. told us she would grow out of it.(RIGHT???) Anyways we went > to a urologist and we have tried the different medications for the past year > and a half with no results. So,they brought up the idea of a Interstim > Therapy Unit. It is made by Medtronic-they make heart pace makers. It works > by putting the lead wire on the sacral nerve and you then have the battery > pack implanted in your butt cheek. Has anyone had this done or is familiar > with this? > > One more thing, I know awhile back someone was talking about puberty and > taking premarin. Cassie also was not kicking into puberty on her own. We > went to see a endo Dr. she told us that her body would never do it on her > own and she did put her on Premarin, Cassie is now on the second to lowest > dose. We are slowly seeing her body change. (Cassie would love for it go > faster) I asked our Dr. if she thought a ultrsound would be beneficial to > see if the ovaries and all the female parts are there, but she wasn't in a > rush to do this? Does anyone have any input on this? > > I know that this is getting long, but to give a little light to all of you > with younger CHARGERS. I have watched our daughter go from fighting to keep > her balance just to stay upright(She had stitches a few times) to a > beautiful successful teenager. SHe is at camp right now, it is a D/HH > camp. Right before she left I asked her if she was positve this is what > she wanted to do, becuase it is for 2 weeks. Her reply was mom.....if you do > not ever take chances or do not do things because you are a little afraid, > then you are in trouble becuase you will never get any where. Out of the > mouth of my little babe.It was hard letting her go, she is our youngest > child, and I have been there fighting for her all the way. It makes it > harder to let go, but at the same time that is what we are fighting for, > isn't it.To someday let them go and for them to be independent. > Cheryl, Jim, Cassie > momonamission@... wrote: > Joanne - > Aubrie had several tear duct probes in her first years. She finally had > stents and now has no trouble with drainage. Until you mentioned it, I'd > forgotten about the constant tearing. People used to think she was always > crying. > > Michele W > Aubrie's mom 7 yrs > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > > > > Quote Link to comment Share on other sites More sharing options...
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