Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Tina, I appreciate how difficult it can be to get our daughters to accept something once they have taken a serious dislike to it. Sometimes I can get mine to accept something by a lot of planned preparation, but once she takes against something, changing her mind is nearly impossible until she spontaneously decides on it herself. I don't remember if you are in the U.S.A. I know what I'm about to describe is a different situation, but I believe it illustrates that in some communities doctors find it acceptible to do fairly permanent and significant procedures when it is clear that a young woman will never be able to parent a child if she did bear one. We knew a family who have an adult daughter with challenges. She is not autistic, but is severely mentally challenged. The parents realized that their daughter would never be able to care for a child if she did have one, and that they would not always be there to care for her and any possible children, so they made the decision to have her tubes tied. I believe they may have had to apply to the courts to be named as her conservators to get it accomplished, because of U.S. law. It should be possible to get doctors somewhere to consider a permanent procedure for her sake. She sounds so unhappy, and the chance of long term side-effects after 30 years of non-stop hormone treatments ought to concern any prudent doctor. Sandi In a message dated 11/4/2011 12:46:26 A.M. Central Daylight Time, cuches@... writes: Hi, my daughter is 12 years old and has been getting her period for just over a year now. She is non-verbal and considered to be severe on the ASD spectrum. She can communicate via a Dynavox but cannot always tell us how she is feeling. She seems to be handling the period ok but REFUSES to wear a pad, she actually gets very upset and angry if I try to place it in her underware. She will rip it out and throw it away. She is usually a very loving and non-violent person but show her a pad and she is enraged. I have tried every trick in the book but she simply hates it. I even tried to show her how a tampon works but no dice. She also is CONSTANTLY wiping her vagina with toilet paper or anything she can get her hands on (like the bathroom towels)because she must feel she has urinated in her pants. All I do for the entire time is clean blood out of clothes, towels, carpets, bed linens etc... The school refuses to accept her if she won't wear the pad and I understand that but now she loses almost a week every month and that is unfair to my daughter. I took her to an OB/GYN and at first they refused to do anything due to her very young age, again, I understand but the circumstances are unique. They never dealt with a person who has autism. They had a team meeting to discuss our options at my request and the group of doctors came up with a prescription for Lybrel. I was and still am VERY nervous about any birth control pill due to the known side effects. We started the Lybrel 2 weeks ago and today I found out this medicine has been removed from the market....the doctor claims due to patent laws, not anything to due with harming women. They now have ordered seaonale. My question to the group is this: after 2 weeks on the Lybrel (which contains both estrogen and progesterone in low doses) she seems bloated and her breasts seem to have grown (both known side effects) She is CONSTANTLY touching and squeezing her breasts and lifting her shirt in public. I am trying to teach her time and place for touching herself but it seems as though maybe her breasts are tender and she is possibly massaging them to make them feel better? I gave her Motrin and it seemed to have helped. I am not sure if I should consider stopping the Seasonale but dealing with the period again scares us. I don't know what our options are at this point due to her young age. The doctors refuse to place an IUD such as Merena, or any surgical intervention such as uterine ablation. They say that they only due the ablation for women who are done having babies. I doubt my daughter will EVER have an opportunity to have a baby considering the severity of her autism. I think the ablation makes the most sense but they won't consider it. What else can I do if giving her the birth control pill fails???? Any advice would be so much appreciated!!! Thanks, Tina .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Thank you Sandy. Yes we are in the US, NY to be specific. It is so hard to see my daughter suffer for no reason. There is no way she could ever care for a baby when she cannot care for herself. These doctors are thinking of a typical 12 year old but when I explain the facts to them they continue to say how they only do those kinds of procedures on women who are done having children. But what about those who will never have children. To make my daughter go through this every month is cruel. I wish I could find a doctor who would understand. I hate the idea of giving her these hormones! Tina Re: Desperate for advice on stopping my daughters... To: Autism_in_Girls_and_Women > Tina, > > I appreciate how difficult it can be to get our daughters to > accept > something once they have taken a serious dislike to it. > Sometimes I can get mine > to accept something by a lot of planned preparation, but once > she takes > against something, changing her mind is nearly impossible until > she > spontaneously decides on it herself. > > I don't remember if you are in the U.S.A. I know what I'm about > to > describe is a different situation, but I believe it illustrates > that in some > communities doctors find it acceptible to do fairly permanent > and significant > procedures when it is clear that a young woman will never be > able to parent > a child if she did bear one. > > We knew a family who have an adult daughter with challenges. > She is not > autistic, but is severely mentally challenged. The parents > realized that > their daughter would never be able to care for a child if she > did have one, > and that they would not always be there to care for her and any > possible > children, so they made the decision to have her tubes tied. I > believe they > may have had to apply to the courts to be named as her > conservators to get it > accomplished, because of U.S. law. > > It should be possible to get doctors somewhere to consider a > permanent > procedure for her sake. She sounds so unhappy, and the chance > of long term > side-effects after 30 years of non-stop hormone treatments ought > to concern > any prudent doctor. > > Sandi > > > In a message dated 11/4/2011 12:46:26 A.M. Central Daylight > Time, > cuches@... writes: > > Hi, my daughter is 12 years old and has been getting her period > for just > over a year now. She is non-verbal and considered to be severe > on the ASD > spectrum. She can communicate via a Dynavox but cannot always > tell us how she > is feeling. She seems to be handling the period ok but REFUSES > to wear a > pad, she actually gets very upset and angry if I try to place > it in her > underware. She will rip it out and throw it away. She is > usually a very loving > and non-violent person but show her a pad and she is enraged. I > have tried > every trick in the book but she simply hates it. I even tried > to show her > how a tampon works but no dice. She also is CONSTANTLY wiping > her vagina > with toilet paper or anything she can get her hands on (like > the bathroom > towels)because she must feel she has urinated in her pants. All > I do for the > entire time is clean blood out of clothes, towels, carpets, bed > linens etc... > The school refuses to accept her if she won't wear the pad and > I > understand that but now she loses almost a week every month and > that is unfair to my > daughter. > > I took her to an OB/GYN and at first they refused to do > anything due to > her very young age, again, I understand but the circumstances > are unique. > They never dealt with a person who has autism. They had a team > meeting to > discuss our options at my request and the group of doctors came > up with a > prescription for Lybrel. I was and still am VERY nervous about > any birth control > pill due to the known side effects. We started the Lybrel 2 > weeks ago and > today I found out this medicine has been removed from the > market....the > doctor claims due to patent laws, not anything to due with > harming women. They > now have ordered seaonale. My question to the group is this: > after 2 weeks > on the Lybrel (which contains both estrogen and progesterone in > low doses) > she seems bloated and her breasts seem to have grown (both > known side > effects) She is CONSTANTLY touching and squeezing her breasts > and lifting her > shirt in public. I am trying to teach her time and place for > touching > herself but it seems as though maybe her breasts are tender and > she is possibly > massaging them to make them feel better? I gave her Motrin and > it seemed to > have helped. I am not sure if I should consider stopping the > Seasonale but > dealing with the period again scares us. I don't know what our > options are > at this point due to her young age. The doctors refuse to place > an IUD such > as Merena, or any surgical intervention such as uterine > ablation. They say > that they only due the ablation for women who are done having > babies. I > doubt my daughter will EVER have an opportunity to have a baby > considering > the severity of her autism. I think the ablation makes the most > sense but > they won't consider it. What else can I do if giving her the > birth control > pill fails???? > > Any advice would be so much appreciated!!! > > Thanks, > Tina > > > > > > > > . > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 Tina, Chances are, they are more worried about their liability than your daughter's quality of life. It's controversial, and they don't want picketers and bad publicity. If you don't give up, you may find a doctor who will still put the patient first.... Getting yourselves legally named conservators for life may help, it did for the folks I talked about. It showed the docs that the court legally recognized that this was a person who would never be a responsible adult. Sandi In a message dated 11/4/2011 4:12:14 A.M. Central Daylight Time, cuches@... writes: Thank you Sandy. Yes we are in the US, NY to be specific. It is so hard to see my daughter suffer for no reason. There is no way she could ever care for a baby when she cannot care for herself. These doctors are thinking of a typical 12 year old but when I explain the facts to them they continue to say how they only do those kinds of procedures on women who are done having children. But what about those who will never have children. To make my daughter go through this every month is cruel. I wish I could find a doctor who would understand. I hate the idea of giving her these hormones! Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 i feel for you Tina, it must be so very hard for you. i was always dreading when this time would come for my daughter, but things so far are ok..........yes, she has bad mood swings the week before, but the actualperiod isn't too bad yet. i'm in australia, so i have no idea who to advise you to go see. i would go to a paedrition, not sure in the US. Cheryl S [chez] To: Autism_in_Girls_and_Women From: cuches@... Date: Fri, 4 Nov 2011 09:12:01 +0000 Subject: Re: Desperate for advice on stopping my daughters... Thank you Sandy. Yes we are in the US, NY to be specific. It is so hard to see my daughter suffer for no reason. There is no way she could ever care for a baby when she cannot care for herself. These doctors are thinking of a typical 12 year old but when I explain the facts to them they continue to say how they only do those kinds of procedures on women who are done having children. But what about those who will never have children. To make my daughter go through this every month is cruel. I wish I could find a doctor who would understand. I hate the idea of giving her these hormones! Tina Re: Desperate for advice on stopping my daughters... To: Autism_in_Girls_and_Women > Tina, > > I appreciate how difficult it can be to get our daughters to > accept > something once they have taken a serious dislike to it. > Sometimes I can get mine > to accept something by a lot of planned preparation, but once > she takes > against something, changing her mind is nearly impossible until > she > spontaneously decides on it herself. > > I don't remember if you are in the U.S.A. I know what I'm about > to > describe is a different situation, but I believe it illustrates > that in some > communities doctors find it acceptible to do fairly permanent > and significant > procedures when it is clear that a young woman will never be > able to parent > a child if she did bear one. > > We knew a family who have an adult daughter with challenges. > She is not > autistic, but is severely mentally challenged. The parents > realized that > their daughter would never be able to care for a child if she > did have one, > and that they would not always be there to care for her and any > possible > children, so they made the decision to have her tubes tied. I > believe they > may have had to apply to the courts to be named as her > conservators to get it > accomplished, because of U.S. law. > > It should be possible to get doctors somewhere to consider a > permanent > procedure for her sake. She sounds so unhappy, and the chance > of long term > side-effects after 30 years of non-stop hormone treatments ought > to concern > any prudent doctor. > > Sandi > > > In a message dated 11/4/2011 12:46:26 A.M. Central Daylight > Time, > cuches@... writes: > > Hi, my daughter is 12 years old and has been getting her period > for just > over a year now. She is non-verbal and considered to be severe > on the ASD > spectrum. She can communicate via a Dynavox but cannot always > tell us how she > is feeling. She seems to be handling the period ok but REFUSES > to wear a > pad, she actually gets very upset and angry if I try to place > it in her > underware. She will rip it out and throw it away. She is > usually a very loving > and non-violent person but show her a pad and she is enraged. I > have tried > every trick in the book but she simply hates it. I even tried > to show her > how a tampon works but no dice. She also is CONSTANTLY wiping > her vagina > with toilet paper or anything she can get her hands on (like > the bathroom > towels)because she must feel she has urinated in her pants. All > I do for the > entire time is clean blood out of clothes, towels, carpets, bed > linens etc... > The school refuses to accept her if she won't wear the pad and > I > understand that but now she loses almost a week every month and > that is unfair to my > daughter. > > I took her to an OB/GYN and at first they refused to do > anything due to > her very young age, again, I understand but the circumstances > are unique. > They never dealt with a person who has autism. They had a team > meeting to > discuss our options at my request and the group of doctors came > up with a > prescription for Lybrel. I was and still am VERY nervous about > any birth control > pill due to the known side effects. We started the Lybrel 2 > weeks ago and > today I found out this medicine has been removed from the > market....the > doctor claims due to patent laws, not anything to due with > harming women. They > now have ordered seaonale. My question to the group is this: > after 2 weeks > on the Lybrel (which contains both estrogen and progesterone in > low doses) > she seems bloated and her breasts seem to have grown (both > known side > effects) She is CONSTANTLY touching and squeezing her breasts > and lifting her > shirt in public. I am trying to teach her time and place for > touching > herself but it seems as though maybe her breasts are tender and > she is possibly > massaging them to make them feel better? I gave her Motrin and > it seemed to > have helped. I am not sure if I should consider stopping the > Seasonale but > dealing with the period again scares us. I don't know what our > options are > at this point due to her young age. The doctors refuse to place > an IUD such > as Merena, or any surgical intervention such as uterine > ablation. They say > that they only due the ablation for women who are done having > babies. I > doubt my daughter will EVER have an opportunity to have a baby > considering > the severity of her autism. I think the ablation makes the most > sense but > they won't consider it. What else can I do if giving her the > birth control > pill fails???? > > Any advice would be so much appreciated!!! > > Thanks, > Tina > > > > > > > > . > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2011 Report Share Posted November 4, 2011 You have to keep looking! My friend's daughter who is DD is going to receive Lupron injections to stop her menses. She is 9 Y.O.!! HTH, Yvette PS: Sorry to jump in but I have had to seek more than 10 drs to treat just one of my daughter's conditions .. Goos luck Re: Desperate for advice on stopping > my daughters... > > To: Autism_in_Girls_and_Women > > > >> Tina, > >> > >> I appreciate how difficult it can be to get our daughters to > >> accept > >> something once they have taken a serious dislike to it. > >> Sometimes I can get mine > >> to accept something by a lot of planned preparation, but once > >> she takes > >> against something, changing her mind is nearly impossible until > >> she > >> spontaneously decides on it herself. > >> > >> I don't remember if you are in the U.S.A. I know what I'm about > >> to > >> describe is a different situation, but I believe it illustrates > >> that in some > >> communities doctors find it acceptible to do fairly permanent > >> and significant > >> procedures when it is clear that a young woman will never be > >> able to parent > >> a child if she did bear one. > >> > >> We knew a family who have an adult daughter with challenges. > >> She is not > >> autistic, but is severely mentally challenged. The parents > >> realized that > >> their daughter would never be able to care for a child if she > >> did have one, > >> and that they would not always be there to care for her and any > >> possible > >> children, so they made the decision to have her tubes tied. I > >> believe they > >> may have had to apply to the courts to be named as her > >> conservators to get it > >> accomplished, because of U.S. law. > >> > >> It should be possible to get doctors somewhere to consider a > >> permanent > >> procedure for her sake. She sounds so unhappy, and the chance > >> of long term > >> side-effects after 30 years of non-stop hormone treatments ought > >> to concern > >> any prudent doctor. > >> > >> Sandi > >> > >> > >> In a message dated 11/4/2011 12:46:26 A.M. Central Daylight > >> Time, > >> cuches@... writes: > >> > >> Hi, my daughter is 12 years old and has been getting her period > >> for just > >> over a year now. She is non-verbal and considered to be severe > >> on the ASD > >> spectrum. She can communicate via a Dynavox but cannot always > >> tell us how she > >> is feeling. She seems to be handling the period ok but REFUSES > >> to wear a > >> pad, she actually gets very upset and angry if I try to place > >> it in her > >> underware. She will rip it out and throw it away. She is > >> usually a very loving > >> and non-violent person but show her a pad and she is enraged. I > >> have tried > >> every trick in the book but she simply hates it. I even tried > >> to show her > >> how a tampon works but no dice. She also is CONSTANTLY wiping > >> her vagina > >> with toilet paper or anything she can get her hands on (like > >> the bathroom > >> towels)because she must feel she has urinated in her pants. All > >> I do for the > >> entire time is clean blood out of clothes, towels, carpets, bed > >> linens etc... > >> The school refuses to accept her if she won't wear the pad and > >> I > >> understand that but now she loses almost a week every month and > >> that is unfair to my > >> daughter. > >> > >> I took her to an OB/GYN and at first they refused to do > >> anything due to > >> her very young age, again, I understand but the circumstances > >> are unique. > >> They never dealt with a person who has autism. They had a team > >> meeting to > >> discuss our options at my request and the group of doctors came > >> up with a > >> prescription for Lybrel. I was and still am VERY nervous about > >> any birth control > >> pill due to the known side effects. We started the Lybrel 2 > >> weeks ago and > >> today I found out this medicine has been removed from the > >> market....the > >> doctor claims due to patent laws, not anything to due with > >> harming women. They > >> now have ordered seaonale. My question to the group is this: > >> after 2 weeks > >> on the Lybrel (which contains both estrogen and progesterone in > >> low doses) > >> she seems bloated and her breasts seem to have grown (both > >> known side > >> effects) She is CONSTANTLY touching and squeezing her breasts > >> and lifting her > >> shirt in public. I am trying to teach her time and place for > >> touching > >> herself but it seems as though maybe her breasts are tender and > >> she is possibly > >> massaging them to make them feel better? I gave her Motrin and > >> it seemed to > >> have helped. I am not sure if I should consider stopping the > >> Seasonale but > >> dealing with the period again scares us. I don't know what our > >> options are > >> at this point due to her young age. The doctors refuse to place > >> an IUD such > >> as Merena, or any surgical intervention such as uterine > >> ablation. They say > >> that they only due the ablation for women who are done having > >> babies. I > >> doubt my daughter will EVER have an opportunity to have a baby > >> considering > >> the severity of her autism. I think the ablation makes the most > >> sense but > >> they won't consider it. What else can I do if giving her the > >> birth control > >> pill fails???? > >> > >> Any advice would be so much appreciated!!! > >> > >> Thanks, > >> Tina > >> > >> > >> > >> > >> > >> > >> > >> . > >> > >> > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
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