I have a question for mothers out there of special needs girls

Vicki - posted on 04/28/2011

Heather,
Our daughter does have some cramps now with her periods and she too isn't always verbal with telling us what hurts (high tolerance for pain). She knows her older sisters go through periods too so it doesn't seem to bother her too badly. You are correct that no parent wishes for their child to go through any pain, discomfort, surgery or anything that we see as hurtful but in reality we all deal with unpleasantness at one time or another. Our daughter has been battling so much since before she was born that I hate to say it but it is just a part of her life. She just had thyroid ablation done earlier this week and is home recovering nicely. One day at a time always works the best and when we face difficult paths it is always good to have friends to lean on! Wishing you all the best!

Heather - posted on 04/27/2011

Thank you Caroline! I think with all the advice I am getting I won't shave her legs and the diapers will work just fine. I am so happy I asked and have gotten a lot of feedback.

Heather - posted on 04/27/2011

Vicki,
Thank you! Are they going to do anything about your daughter's periods? I really hate to put her through surgery, but she can't tell us if she ever hurts from cramps. She gets physical when she is in pain and I don't want her to hurt herself. I plan on keeping her in my home as long as I can, but in reality she may have to go into a home as my husband and I get older. I don't want anyone taking advantage of my daughter and her end up pregnant. I thought maybe the abliation would be a good idea, but not if there is a risk of her still being able to get pregnant. So glad you said that! I hope they can do the hysterectomy vaginally, that's what I had, and I was ready to go back to work in less than a week! What mother wants to put their child through pain and surgery though? It's hard, but I do want what's best for her and I don't ever want her pregnant!

Vicki - posted on 04/27/2011

Hey Heather,
Just wanted to tell you that my daughter started her periods at 10 and she started the pubic hair at 7 as well. We put pullups on her because she does not like the feeling of the pads with her panties. She is doing great with this. As for shaving, we don't shave her legs and she has no hair under her armpits. She is a blonde and I figured that so long as her hair on her legs is sparse and light we don't have to worry about it. For the ladies that had the question about the abliation, I had this done many years ago it is called nova sure and it works great for no periods but my doctor did tell me that if I were still ovulating that it could be dangerous because I still could get pregnant but the egg would probably try to develop in my tubes or it could try in my uterus and cause bad problems so I would highly recommend the removal of the uterus as planned. Hope that all goes well for you and your family!

Caroline - posted on 04/27/2011

My daughter is now 21,,,,she started her period at 9...We started with the pads and found them a nuisance ( They did not stay in place )...Diapers are fine.
As far as the legs...I do not shave.
I do however shave her underarms.
Have a Blessed Day!

Heather - posted on 04/26/2011

Thank all of you wonderful ladies for all your info! I am also glad we have helped each other out too! I might ask about the ablation instead of a partial hysterectomy. I would love to keep up with all of you if you don't mind, so I will be sending more requests out. If I miss you, please feel free to send me a request. Dionne...my daughter sticks her hands in her pants as well and if she doesn't have pants on, she always undoes her diaper! She also has the habit of when we changer her, her hands automatically go right there! Debbie...thank you for explaining the ablation to us!

Dionne - posted on 04/26/2011

I was going to suggest the endometrial ablation as well since it has already been brought up I will not. PLus I did not have that much information on it as she did. I will say I am glad I saw this posting since my daughter is 9 and I have been wondering what to do with her when this comes about for the past 2 years. I am going to be bringing it up to the development doctor to start discussing what to do as well. The family doctor usually gets the girls after these procedures are in place so my daughter will be the first she has had to figure out what to do. I am thinking I am going to push for the endometrial ablation for reasons I can not get into as of yet. Plus my daughter has a habit of sticking her hand in her pants, dont need it coming out with this on her fingers. I also have a friend who had this done to her daughter and it has benefited the girl. I am not planning on shaving my daughters legs if I dont have to. I dont think my daughter will be able to do either by herself. The arm pits will need to be done eventually but I figured I would use an electric razor, she is not one to sit for long. My friend's daughter does get spotting bleeding after she had this procedure but it is really minimal and the diaper handles what does come out in case you were wondering. But they can not get pregnant if something were to happen that way which is what I am after, mostly, plus I don't think she can handle a period. The other reason is my daughter does not swallow pills and she already has behavior issues so putting her on a shot or pill that would increase this does not sound like a smart thing to do for my daughter. I knnow this does not really help you but it has helped me with all the comments regarding this topic. Thanks

Cara - posted on 04/26/2011

I just wanted to say thank you Heather and everyone else who has posted! My daughter is still young, but because of her condition, will most likely go through puberty very early and it is a blessing to have a little knowledge and tricks of the trade beforehand!

Dallas - posted on 04/26/2011

Thanks for the great info Heather! I called one of my friends and she called it an ablation so we are on the same page. I'm grateful you have a wonderful PT--it can make such a difference!



Thank you Debbie for the detailed info on ablation!

Debbie - posted on 04/26/2011

The procedure that possibly lasers the lining of the uterus is probably an ablation, such as Endometrial ablation
Endometrial ablation is a procedure that destroys (ablates) the uterine lining, or endometrium. This procedure is used to treat dysfunctional or abnormal uterine bleeding. Sometimes a lighted viewing instrument (hysteroscope) is used to see inside the uterus. Endometrial ablation can be done by:

Laser beam (laser thermal ablation).
Heat (thermal ablation), using:
Radiofrequency.
A balloon filled with saline solution that has been heated to 85C (thermal balloon ablation).
Normal saline (heated free fluid).
Electricity, using a resectoscope with a loop or rolling ball electrode.
Freezing.
Microwave.
The endometrium heals by scarring, which usually reduces or prevents uterine bleeding. link -- http://women.webmd.com/endometrial-ablat...

Heather - posted on 04/26/2011

Melissa...I would see if you could get a referral to see a pediatric endocrinologist. This is the one we have been talking with about birth control and a partial hysterectomy. They want to leave her ovaries so she still has hormones and does got through menopause. They can do it vaginally which is safer and has a quicker recovery time. There will be 3 very small incisions with this type of procedure. I have also heard of the procedure Dallas is talking about, but not sure what it is either. I would definately recommend getting a referral for your daughter. They have specialists who deal with periods in young children and maybe your OB/GYN knows of one. Good luck!

Heather - posted on 04/26/2011

Dallas...I respect what your husband does tremendously! If it weren't for my daughter's PT we would have never known she had scoliosis! He is the one who noticed things looked different and had us look into it. It is getting more difficult dealing with her, because she is a heavy girl. We have a lift to help at home and my husband is still able to lift her as well. She is on growth hormones because she is basically producing none on her own. Her doctor says this will also help with the weight gain. They are concerned with health issues since she is so heavy. They want her to grow so she will then out. We are also seeing a nutritionist. I feel for you concerning the undiagnosis. All we know is that she has Xq deletion and have not been able to diagnose her real issues. No one else has been found anywhere like her. Good luck to you and thanks for the advice!

Dallas - posted on 04/26/2011

Leave her ovaries and remove her uterus. I just thought of something. I have no idea how this would work for a special needs daughter, but several of my friends have had a same day proceedure where the inside of their uterus was lasered. They no longer have periods! When you check with your OB, ask about that as well. I'm sorry I don't know the name of it.

Melissa - posted on 04/26/2011

When you ladies say "partial hysterectomy" what do you mean? What was removed? I broached this idea with DD's neuro who basically blew me off but I am going to take her to my amazingly awesome OB/GYN and discuss it with her.

Kristy - posted on 04/26/2011

HI Heather, my daughter is 11 and a half and she started her period when she was 10 and a half. I don't put pads in her pullups and we haven't had to many problems. I have used an electric razor to shave her under arms not because she noticed but that the hair was starting to get pretty long. She swings her arms a lot so I didn't even attempt to use a regular razor I went straight to an electric razor so that I could get it done quick. I haven't shaved her legs yet I have been waiting on that one. We haven't put our daughter on birth control yet because her pediatrician hasn't put her on it yet but we will eventually. You are going in the right direction with what you are doing. I think the ladies on here have given you some really great advice. Good luck.

Kristy Wilson

Dallas - posted on 04/26/2011

My husband is a physical therapist and has worked with many families who have girls with special needs. One of the issues many of them face is that as the parent/care giver gets older, taking care of their daughter's needs have gotten more difficult, especially as their ability to lift, help bath and dress, etc., decreases. Often times because of inactivity or other issues, their daughters have become overweight as well which adds complications in their care. Many have chosen to have partial hysterectomys while they are in their late teens, early 20's for a greater chance of healing quickly and having less complications. Others have used different types of birth control as an alternative and as several moms have mentioned. Another trick we have been told is to use feminine deoderant spray in the diapers to help with odors--it helps their daughters who are aware, not be so self conscious. I have 3 sons who have an undiagnosed condition which gives them high tone through their limbs and low tone through their central nervous system. We have a hard time extending their arms up enough to get a roll-on type deoderant on them and use a spray instead.

Betty - posted on 04/26/2011

Hi: I have a 10 year old special needs daughter also. Let me know what you learn.

Heather - posted on 04/26/2011

Beverly and Kathy, thank you. I was worried about nicking her because she is very ticklish as well under her arms. I have to put deodorant on and thats a chore! She won't be able to help pick an electric razor out. That's a great idea! The depo did stop my periods as well, but when I went off of it my periods were long and horrible. Her doctor suggested that as well, but recommended the Lupron/Supprelin instead. He also said, hope I get this correct, that since she has an X deletion syndrome, her uterus or ovaries may not be there so she may not have a period anyway. We will do an ultra sound to find out a little later.

I appreciate all the feedback from you ladies!

Kathy - posted on 04/26/2011

A note on the depo shot. For me I had no period for 6 weeks then the next six weeks I had a constant on going period until I got the shot again. I had to go off of it because it mess to much with my hormones. It's different for every one.

Beverly - posted on 04/26/2011

My daughter will be 18 in 2 days, mental age is 2-3 yrs old tho.....When she hit puberty, we started her on the Depo-Provera shot to stop her periods & help the birth control issue at the pediatrician's advice.

As for the shaving issue........we never have shaved her legs but we did have to shave her arm pits. She is very ticklish there so we have to be very quick with the razor, lol. We get it the best we can as she tries to squirm away. I would definitely suggest an electric ladies razor as we have nicked her a few times when she squirmed. It is much easier with the electric razor.
Good luck with her & if she can, let her help pick out the razor she would like to use.

Beverly

Heather - posted on 04/26/2011

I never thought about Nair! Thanks for that idea! I know I am going to have to shave under her arms. She has a few hairs now, but I am going to wait. I know what you mean about hoping she would be your little girl forever! I freaked out when she started getting pubic hair at 7! That's how long we have been talking about what's best for her when she starts her periods! I have had 2 of her doctor's tell me to expect it within the next year and a half if not sooner. Everytime I change her now I am expecting her to start. I don't want her to grow up! LOL

Melissa - posted on 04/26/2011

As far as shaving goes, you could consider using Nair or something similar. I won't be shaving my daughter's legs unless she wants me to do it (but I don't think she will actually notice for quite some time). As far as her underarms, I have no idea what I will do about that. She is like a little clone of me and the hair on my legs and underarms is very sparse so I'm hoping her's will be, too! I'm still trying to decide what to do about all of this puberty stuff! I guess I was hoping she would be a little girl forever! lol

Heather - posted on 04/26/2011

Thank you ladies! Melissa, my daughter has been going through puberty since she was 7! We have discussed with her endocrinologist about what to do. She has to have atleast 1 period and then they will give her Lupron/Supprelin, which from what I understood is like a pill they put in the back of her arm and it will dissolved slowly. This will stop her periods. When she stops growing, around 16, they will do a partial hysterectomy. The reason for that is because of my family history and to prevent pregnancy. Julia, my daughter doesn't understand what razors would be for or how to use them. I thought if I didn't shave I wouldn't have to worry about it growing back darker and thicker. I just don't know. I really appreciate the input from you both!

Melissa - posted on 04/26/2011

My daughter is also 10 1/2, in diapers and started puberty over a year ago. For cleanliness and to prevent her from having to suffer through cramps (which she would not understand), she will be starting birth control pills with her first period. Both her neurologist AND my OB/GYN have recommended this. She would still get periods but they will be light so that there wouldn't be a mess with all the blood and so that she won't have to endure cramps. You might want to consider discussing that option with your daughter's pediatrician or specialists, as well.

Julia - posted on 04/22/2011

What a good question! I don't think she will need to wear pads because they will be absorbed in her urine. I can imagine how messy her diapers will be when her Aunt Flo visits her, but no worries (you probably will need to change her more often than usual). I recommend you to talk with her pediatrician about it. If she was my daughter, I probably would not put pads in her diaper. As for shaving, I started shaving when I was 10 (without my mom finding out) because I felt hairy and wanted to be a big girl because I hung out with older girls. She bought my first razor when I was 12 after my first period. I have a two-year-old daughter, I will probably give her her first razor when she seems to be self-conscious about her body. It also depends on how mature she is when she is between 10-12. If she did get her first period at 10 then I am okay with it. If she asked me if she could have my razor when she is 8 just because she hangs out with older girls, then no. (BTW, I have a 4 y/o son with special needs.) I hope this helped, and good luck! :)