Re: Desperate for advice on stopping my daughters periods....

November 4, 2011

Hi Tina, I've not had to deal with what you're going through, but I think if I were, I would look into other options for doctors, even if it means having to go outside of the area. I would want a doctor who has had patients with Autism before so they at least have some understanding of what is being dealt with.

The option of an IUD wouldn't really help you with what your dealing with anyway. They aren't known for stopping periods, although when I had mine, they were lighter, so could make dealing with them easier, but I know others who it had no significant change for and others still who dealt with even more bleeding after getting the IUD. The only benefit you could count on there is preventing pregnancy and I can understand the doctors not wanting to go to that option at this point even if there isn't any chance of your daughter being able to care for a child.

I know it may not be an option since she doesn't like the pads at all, but have you tried using adult diapers like depends that look like briefs or big kid pull ups (depending on her size they go pretty big) for those times of the month? If you've not tried them already, I'd give it a shot, they would be absorbent like a pad, but wouldn't be an additional insert in her underware that she had to put on or change etc. She could just take the whole thing off and toss it and put a new one on.

Then at least she should be able to attend school during her period and it could cut back on the amount of laundry you're having to do.I'd still look into finding a new doctor somewhere in the area or within a reasonable distance that has some experience, but maybe this can help in the mean time?

Best wishes,Theresa

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

November 4, 2011

I have a daughter too, though she's more on the moderate end than severe. Theresa gives some good recommendations. They do make adult diapers and I've actually seen some Aspies wearing them as they didn't want to deal with changing the pad. You can try that, and just toss as needed.

I too would definitely look into another doctor with experience in this, even if you have to go outside your area. I believe there are shots that can prevent periods all together. A good and experienced endocrinologist might be able to assist in this.

One thing you can try too is a reward system for keeping on the pad or diaper. When she doesn't have her period, tell her if she wears her pad for half an hour, she will get some type of reinforcement ( it has to be something that she really likes) once she can handle that for half an hour, increase the time of wearing the pad to eventually she has to sleep with it on. Again all with a reinforcement for successfully keeping the pad on.

It's a good idea to start this when she doesn't have her period, that way she can simply get use to having the pad without the additional burden of blood and mess. When she can handle that, then do it during the period. I did this with my daughter and that worked out well.

There are social stories out there on menstruation. Perhaps she is confused or scared and not sure what's going on. Maybe you can read it to her every day so she knows that this is normal and okay. I have one that I used for my daughter somewhere, if you need it just let me know and I'll look for it.

Hope this info helps. Good luck!

AP

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

November 4, 2011

I send panties in a bag to school with pads all ready in so she just has to change panties and they can send others home and you can discard. I didn't do the shots because if it doesn't agree with your child you can't stop or remove it and it last for 3 months. We choose a BC pill called Be Yaz with folio acid and this has limited her periods we are suppressing and we just get some spotting which is manageable. We are doing this for seizures primarily because she had them more at this time of the month. KathySent from my iPhone

I have a daughter too, though she's more on the moderate end than severe. Theresa gives some good recommendations. They do make adult diapers and I've actually seen some Aspies wearing them as they didn't want to deal with changing the pad. You can try that, and just toss as needed.

I too would definitely look into another doctor with experience in this, even if you have to go outside your area. I believe there are shots that can prevent periods all together. A good and experienced endocrinologist might be able to assist in this.

One thing you can try too is a reward system for keeping on the pad or diaper. When she doesn't have her period, tell her if she wears her pad for half an hour, she will get some type of reinforcement ( it has to be something that she really likes) once she can handle that for half an hour, increase the time of wearing the pad to eventually she has to sleep with it on. Again all with a reinforcement for successfully keeping the pad on.

It's a good idea to start this when she doesn't have her period, that way she can simply get use to having the pad without the additional burden of blood and mess. When she can handle that, then do it during the period. I did this with my daughter and that worked out well.

There are social stories out there on menstruation. Perhaps she is confused or scared and not sure what's going on. Maybe you can read it to her every day so she knows that this is normal and okay. I have one that I used for my daughter somewhere, if you need it just let me know and I'll look for it.

Hope this info helps. Good luck!

AP

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

November 5, 2011

Tina,

Here are some suggestions that might make things a little easier for you. The

depends underwear that you can put the pad between the bottom and top layer of

the fabric might be what you need. Sometimes it is a sensory issue w/ the pads.

If you don't want to buy the expensive depends underwear maybe velcro-ing a

disposable piece of fabric back and front over a pad would work for your

daughter (or simply wrapping the pad in a disposable piece of fabric or a men's

type handkerchief [which you could wash for re- use]). The pads may have an

uncomfortable feel against her body, and putting a piece of fabric over it may

make a difference. To save your bed linens you could use the disposable pads

like hospitals use under incontinent patients (or the pads that you can put down

for pets - the same thing only less expensive). Simple Green is a product that

works well on the stains, and if it is just a small stain left on furniture you

can use a cotton ball with peroxide on it to remove the stain. Taking vitamin C

may make the periods a little lighter. I WOULD NOT do this unless I consulted a

doctor or herbalist but there are a couple of herbal teas and/ or seed that can

stop someone from having a period without ill effect.

I hope this helps.

Glenda

>

> > **

> >

> > 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

> >

>

November 5, 2011

Hi Tina Look into the deprovera injection. My daughter uses this for birth control. With the injection, she only gets a period 4 times a year. My daughter has had no side effects from it. It has been only positive for her.You could try this in the meantime until you find a doctor who will help you with a more permanent solution. Good luckKarinSent from my iPad

Tina,

Here are some suggestions that might make things a little easier for you. The depends underwear that you can put the pad between the bottom and top layer of the fabric might be what you need. Sometimes it is a sensory issue w/ the pads. If you don't want to buy the expensive depends underwear maybe velcro-ing a disposable piece of fabric back and front over a pad would work for your daughter (or simply wrapping the pad in a disposable piece of fabric or a men's type handkerchief [which you could wash for re- use]). The pads may have an uncomfortable feel against her body, and putting a piece of fabric over it may make a difference. To save your bed linens you could use the disposable pads like hospitals use under incontinent patients (or the pads that you can put down for pets - the same thing only less expensive). Simple Green is a product that works well on the stains, and if it is just a small stain left on furniture you can use a cotton ball with peroxide on it to remove the stain. Taking vitamin C may make the periods a little lighter. I WOULD NOT do this unless I consulted a doctor or herbalist but there are a couple of herbal teas and/ or seed that can stop someone from having a period without ill effect.