Re: Surgery on girl raises ethical questions

[Guest guest]

What would I do? I would find another doctor. This is a totally different situation. It is a malfunction that needs attention. I'm no doctor, but I would think a hysterectomy would be justified I this situation. It reminds me of postpartum psychosis. I'm sure we can all agree that it would be wrong for me to hear this story and take my toddler for a hysterectomy so that this situation never happens to her.

On 1/6/07, Borkowski <julieborkowski@...> wrote:

i am not sure how I sit on this issue, because there is another woman on another board who is dealing with her daughter who has DS that just entered puberty. The poor girl who was very mild mannered has starting going into terrible rages, started to self mutilate herself, tries to twist off her breasts making them bloody and red. She has gotten violent, hitting kicking and biting her own mother trying to help. This mom has tried everything from BC pills, hormone injections, alternative and natural treatments etc. Now the doctors are telling her that it is a behavioral issue and they wont do anything.

What would you do?

Dinkins-Borkowski; Nolan(4) nocf, Phoebe(2) Ds & Cf

[Guest guest]

, this would be me I believe. Thanks for thinking of us! I appreciate it.

<<i am not sure how I sit on this issue, because there is another woman on another board who is dealing with her daughter who has DS that just entered puberty. The poor girl who was very mild mannered has starting going into terrible rages, started to self mutilate herself, tries to twist off her breasts making them bloody and red. She has gotten violent, hitting kicking and biting her own mother trying to help. This mom has tried everything from BC pills, hormone injections, alternative and natural treatments etc. Now the doctors are telling her that it is a behavioral issue and they wont do anything.>>

To be clear however got her period 7 years ago, and the one thing we have not, nor will try are hormone injections. She has reacted so badly to the pill I can't even imagine what would happen with a shot!

I just wanted to mention here that we did actually control 's size and growth....by omission. They thought she was going into precocious puberty at 8 and we were offered shots to delay puberty so that she would eventually reach a maximum height...something that most parents of "normal" DS children usually wish for, especially if the child is wanting to be tall like Dad or whatever. In 's case she doesn't know anyhting about being tall or short and could care less. We decided at that ime to forego treatment because she was already very difficult to handle, we were scared of the shots, and it didn't matter to her. She reached her full growth (supposedly) at at 15, started her period at a relatively normal 11 and she remains at 95 lb 4'6". We could possibly have intervened and got her up to 5' tall but we had no qualms about not doing so. Yes for our convenience! but also because we distrusted the treatment.

At the time we did this there was much talk online about growth hormone and supplementation to ensure maximum growth etc. I never talked about it much but truly, both dh and I agreed that we were having so much difficulty controlling her at her small size we didn't want to do anything to encourage growth artificially.

Is that denying her her "civil rights". I don't think so. But Autism is a whole new ballgame and I am watching these poor parents I know with severely affected Autistic children who have grown to 6'+ and hundreds of pounds and I am very grateful had DS to go along with the Autism. Many of them have to call the paramedics to handle the kids who have become violent, or not even meaning to have hurt their parents and siblings. It's so very sad.

There is absolutely no simple answer to this ethical dilemma and I respect 's right to be appalled and totally intolerant. But I do know there are many many discussions going on privately and behind the scenes with moms of girls who are looking for ways or have already had sterilizations performed for whatever reason. It is not as uncommon as one would think these days.

Sherry

[Guest guest]

<<What would I do? I would find another doctor. This is a totally differentsituation. It is a malfunction that needs attention. I'm no doctor, but Iwould think a hysterectomy would be justified I this situation. It remindsme of postpartum psychosis.

I'm sure we can all agree that it would be wrong for me to hear this storyand take my toddler for a hysterectomy so that this situation never happensto her.>>

Well, again you're talking about me here....I posted all of this on this board before the thing exploded. I posted all this just this week. I have no more inclination to have a hysterectomy performed on my 18 yo dtr than you do on your 3 yo dtr and she is NOT psychotic though the pain she is experiencing that doctors fail to acknowledge will certainly drive her to the point of psychosis if they keep refusing to help with pain. We've been to dozens and dozens of doctors. Find another doctor may sound like a simple solution to you but most of her doctors don't even want to deal with her extreme complications right now. Plus she is on medicaid and they are hard to find. Most of them want her on some sort of chemical restraint which I cannot accept. Certainly no one would expect you to sterilize your 3 yo because of what is happening to MY 18 yo. That's absurd.

However I am trying in several posts here to mention you specifically by name and afford you the respect you deserve for whatever opinion you hold. I hope you will do the same for me.

Sherry mom to jamie 17 (till tomorrow) DS/Autism

[Guest guest]

Yes, Sherry, I knew you were on this list as soon as 's problems were mentioned. I usually type one-handed because of the toddler in my lap. Nursing the baby is my only computer time. I don't usually respond because of this. I've been following your messages and was wonering a few things. Do you think she is engorged with milk from coming off the pill? How else would she get mastitis? Cabbage leaves inside a bra is a common cure for engorgement. What is chemical restraint? Could pain killers be used? You said she can be ok for a few hours with tylenol. Could you keep her constantly on that for a few days? I usually hate to use drugs, but one of my daughters has seizures triggered by falling asleep. We were all miserable for over a year until I started drugging her at bedtime. It is a seizure med, but the side effect is that she is totally asleep for 8 hours straight. I have lucked out with doctors. I like most of them better than the support staff. Although I remember no one would listen to me about Beth's sleep problems until she turned 2. An 18 month old that sleeps a total of 7 hours a day and never more than 3 in a row, but took 5-6 naps a day of 10 minutes after 90 minutes of soothing is not normal. ,mom to 3 typical kids 6, 9, 11and Beth, 3y8m, permanently 3 months old developmentally and blind with seizuresand Teri, 15m, DS, corrected AV CanalOn 1/6/07, gldcst <gldcst@...> wrote:

<<What would I do? I would find another doctor. This is a totally differentsituation. It is a malfunction that needs attention. I'm no doctor, but Iwould think a hysterectomy would be justified I this situation. It remindsme of postpartum psychosis.

I'm sure we can all agree that it would be wrong for me to hear this storyand take my toddler for a hysterectomy so that this situation never happensto her.>>

Well, again you're talking about me here....I posted all of this on this board before the thing exploded. I posted all this just this week. I have no more inclination to have a hysterectomy performed on my 18 yo dtr than you do on your 3 yo dtr and she is NOT psychotic though the pain she is experiencing that doctors fail to acknowledge will certainly drive her to the point of psychosis if they keep refusing to help with pain. We've been to dozens and dozens of doctors. Find another doctor may sound like a simple solution to you but most of her doctors don't even want to deal with her extreme complications right now. Plus she is on medicaid and they are hard to find. Most of them want her on some sort of chemical restraint which I cannot accept. Certainly no one would expect you to sterilize your 3 yo because of what is happening to MY 18 yo. That's absurd.

However I am trying in several posts here to mention you specifically by name and afford you the respect you deserve for whatever opinion you hold. I hope you will do the same for me.

Sherry mom to jamie 17 (till tomorrow) DS/Autism

[Guest guest]

Sherry,

You are so very right. I know this is an issue that many have, and will face, and most chose to do it quietly, and without making any waves about it. Then there are those who bring it to light, to facilitate discussion such as this. To make us all think, and get us talking.

Whether we have boys or girls, we all have to think about what we are and are not willing to do when it comes to decisions like these, and our kids futures. And our own. And our other childrens futures as well, since they will likely outlive us, and be raising our special needs kids at some point.

Hugs girl,

-- Re: Surgery on girl raises ethical questions

<snip>

There is absolutely no simple answer to this ethical dilemma and I respect 's right to be appalled and totally intolerant. But I do know there are many many discussions going on privately and behind the scenes with moms of girls who are looking for ways or have already had sterilizations performed for whatever reason. It is not as uncommon as one would think these days.

Sherry

[Guest guest]

I think I am confused, was this post directed toward me? I ment no harm if it was.

Dinkins-Borkowski; Nolan(4) nocf, Phoebe(2) Ds & Cf

Phoebe's Video: http://www.active.com/donate/buddywalk2006/phight4phoebe

Get Phoebe-Chic: http://www.cafepress.com/phoebesphight

Re: Surgery on girl raises ethical questions

<<What would I do? I would find another doctor. This is a totally differentsituation. It is a malfunction that needs attention. I'm no doctor, but Iwould think a hysterectomy would be justified I this situation. It remindsme of postpartum psychosis.

I'm sure we can all agree that it would be wrong for me to hear this storyand take my toddler for a hysterectomy so that this situation never happensto her.>>

Well, again you're talking about me here....I posted all of this on this board before the thing exploded. I posted all this just this week. I have no more inclination to have a hysterectomy performed on my 18 yo dtr than you do on your 3 yo dtr and she is NOT psychotic though the pain she is experiencing that doctors fail to acknowledge will certainly drive her to the point of psychosis if they keep refusing to help with pain. We've been to dozens and dozens of doctors. Find another doctor may sound like a simple solution to you but most of her doctors don't even want to deal with her extreme complications right now. Plus she is on medicaid and they are hard to find. Most of them want her on some sort of chemical restraint which I cannot accept. Certainly no one would expect you to sterilize your 3 yo because of what is happening to MY 18 yo. That's absurd.

However I am trying in several posts here to mention you specifically by name and afford you the respect you deserve for whatever opinion you hold. I hope you will do the same for me.

Sherry mom to jamie 17 (till tomorrow) DS/Autism

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[Guest guest]

No problem, sorry if i got some of it wrong.

Peace,

Dinkins-Borkowski; Nolan(4) nocf, Phoebe(2) Ds & Cf

Phoebe's Video: http://www.active.com/donate/buddywalk2006/phight4phoebe

Get Phoebe-Chic: http://www.cafepress.com/phoebesphight

Re: Surgery on girl raises ethical questions

, this would be me I believe. Thanks for thinking of us! I appreciate it.

<<i am not sure how I sit on this issue, because there is another woman on another board who is dealing with her daughter who has DS that just entered puberty. The poor girl who was very mild mannered has starting going into terrible rages, started to self mutilate herself, tries to twist off her breasts making them bloody and red. She has gotten violent, hitting kicking and biting her own mother trying to help. This mom has tried everything from BC pills, hormone injections, alternative and natural treatments etc. Now the doctors are telling her that it is a behavioral issue and they wont do anything.>>

To be clear however got her period 7 years ago, and the one thing we have not, nor will try are hormone injections. She has reacted so badly to the pill I can't even imagine what would happen with a shot!

I just wanted to mention here that we did actually control 's size and growth....by omission. They thought she was going into precocious puberty at 8 and we were offered shots to delay puberty so that she would eventually reach a maximum height...something that most parents of "normal" DS children usually wish for, especially if the child is wanting to be tall like Dad or whatever. In 's case she doesn't know anyhting about being tall or short and could care less. We decided at that ime to forego treatment because she was already very difficult to handle, we were scared of the shots, and it didn't matter to her. She reached her full growth (supposedly) at at 15, started her period at a relatively normal 11 and she remains at 95 lb 4'6". We could possibly have intervened and got her up to 5' tall but we had no qualms about not doing so. Yes for our convenience! but also because we distrusted the treatment.

At the time we did this there was much talk online about growth hormone and supplementation to ensure maximum growth etc. I never talked about it much but truly, both dh and I agreed that we were having so much difficulty controlling her at her small size we didn't want to do anything to encourage growth artificially.

Is that denying her her "civil rights". I don't think so. But Autism is a whole new ballgame and I am watching these poor parents I know with severely affected Autistic children who have grown to 6'+ and hundreds of pounds and I am very grateful had DS to go along with the Autism. Many of them have to call the paramedics to handle the kids who have become violent, or not even meaning to have hurt their parents and siblings. It's so very sad.

There is absolutely no simple answer to this ethical dilemma and I respect 's right to be appalled and totally intolerant. But I do know there are many many discussions going on privately and behind the scenes with moms of girls who are looking for ways or have already had sterilizations performed for whatever reason. It is not as uncommon as one would think these days.

Sherry

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