I need advice about daughter's cp and puberty.

[Missyb32641]

I don't know if this is the right forum or not but any advice would be very helpful.

My daughter is 12 years old and has c.p., she also has failure to thrive epilepsy and ADHD. She is starting to develope breast buds and pubic hair I am worried that she may have her first peorid at any time. She is cognitvely about four years old and she only weighs 64 pounds, not potty trained so she wears pull ups and she freaks out at the site of blood.

I would like to know if there is anything I or her Dr. could do to prevent this from happening. I have heard that Depo is unreliable in preventing mensturation. I have also heard that being underweight can delay mensturation.

If any one has any ideas please post I could not find any info on the web regarding this issue.

Thank you.

[leslie :-D]

missy,

i honestly do not know but wouldn't her pediatrician be able to intervene and give you the advice you need? best wishes to you and your young lady.

leslie

[NotReady4PrimeTime, RN]

Hmm. Yes, being underweight may delay or prevent menarche. Depo has side effects that I don't think I would be comfortable inflicting on my cognitively impaired daughter. (I don't have a delayed daughter, I have a son, and that's a whole other ballgame!) It is to your advantage that she isn't potty-trained. She won't have a need for sanitary pads, since she's diapered. It is possible to change a diaper (even a Pull-up... just tear the sides) without the wearer seeing what's in it. She wouldn't have to know she's bleeding if you use the front section of the diaper to do the majority of the cleanup, rolling it in on itself toward her bum, then follow up with some carefully palmed wipes that you tuck into her diaper for disposal. Your behaviour will set the tone for hers: if you get upset and make a production out of it, so will she. It is a good idea to keep a chart of her periods. Eventually you'll be able to predict their arrival and duration. Should she fail to menstruate within a few days of the expected date, you'd need to have her checked out, (not to scare you, but...) since she can't tell you what goes on when she's out of your sight. Best of luck.

[Missyb32641]

I wanted to get some information before i spoke to her doctor. Also with her diaper wouldn't i need to put a pad or something in it, I am also worried about her leaking thru.

Thanks again

[KRVRN, BSN, RN]

Well, let us know what the doctor says!

[NotReady4PrimeTime, RN]

Why would you need to put a pad inside the diaper? It would only make the diaper more bulky and could twist and be very uncomfortable. The volume of menstrual bleeding that would occur in the time between diaper changes would only be a fraction of the volume of urine she'd be peeing out. In my career as a pediatric ICU nurse, I've looked after many young women with severe developmental handicaps who had reached puberty; none of them wore pads inside their incontinence briefs, and none of them leaked out onto the bed.

Does your daughter attend school? Maybe there are other families with young ladies a bit older than your daughter right there in your community that you could talk to and get advice from. Of course, your pediatrician will be able to offer suggestions as well, especially if there are a number of special girls in his/her practice.

[hoolahan, ASN, RN]

I can't help youmuch except that I did a google search and these sites had reading lists...

http://www.med.umich.edu/1libr/yourchild/disabsex.htm

http://www.siecus.org/pubs/biblio/bibs0009.html

This site had some fairly useful info...

http://www.tsbvi.edu/Outreach/seehear/fall02/sexual-health.htm

And these 2 have links for forums where you may be able to find first-hand info and some support.

I know that puberty and menses in a teenage girl is hard, even for a "normal" child. I can only imagine your anxiety, and hope that you find something useful here...

http://groups.msn.com/TheDisabilitiesMeetingPlace/messageboard.msnw

http://www.specialchild.com/index.html