I just recently found out that my baby girl Kayleigh has CAIS. She is third generation in my family and we have a genetic counseling place that we have gone to since 1974. My main concern is protecting her from feeling weird or invaded upon. (I hope I'm explaining that right?)

My sister has gone through all this since she also has CAIS, so I've ask her to help me get my thoughts together on this. I just really feel that boundaries need to be set. For instance, I don't want my daughter to be naked with her legs spread open while a bunch of interns parade around in front of her. Is it reasonable for me to have a sort of check list that says something like:

1. no more than 2 drs in the room at a time
2. what phrases are and are not allowed in front of my daughter AND my other children
3. no video recordings (they already asked if they could record her)

It would really help if you guys could help me put this into perspective (and even add to my list)!

Thanks in advance,

Linda

Hi Linda,

Welcome to Bodies. I'm happy you found us

You need to be your daughter's own best advocate. If it doesn't feel right to you, follow that. Put yourself in her shoes and ask yourself how you would feel being her. I would recommend that no one except those specifically and directly involved in her care be allowed in any exams and only exams that are specifically necessary (ask why and what they hope to find) Don't be afraid or intimidated into not asking questions and if you need to ask several times or ask them to answers in real english that you can understand, ask again and again until you are satisfied you understand the answer.

You are right-on with the no photos/video. There's so much available and many of those photographs end up on line as teaching tools or scarier for those with the ability to find them (it's not that hard if you know where to look for them)

Ask them to explain in terms of why it is in her best interest...

And it is neither your responsibility nor your daughter's responsibility to be a teaching tool or experiment for anyone---seasoned docs nor residents.

Hope that helps some,

Betsy

PS...those mysterious medical records...if they discourage you from reading them, feel free to remind them they belong to your daughter and thus you as her parent and advocate. You have a right to read those and to know what is in them.

__________________
Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell

http://www.isna.org/pdf/parenttips.pdf

Many of the tips in the ISNA brochure are not very usefull with a kid with CAIS, but some of them are. Especially the tips # 2, 3, 4, 11 and 12 may help you a bit further.

Groeten, Miriam.

__________________
The Truth, The Whole Truth, and Nothing But The Truth.

Wow y'all are fast! Thanks for the responses. Kayleigh is my fourth child, and my other children have various health concerns so I've learned over the years not to let the drs intimidate me and how to ask questions.

I guess I just want to make sure I have it all thought out in my head what I feel is ok and what is not ok before our appointment in January because sometimes you are caught off guard with something, ya know? Like they already asked me if they could videotape her and I had to tell them that I would get back to them on it because I wasn't sure how I felt about it.

The other thing that I do not want happening is for some insensitive health professional to make some sort of remark that could hurt her self-esteem. I know she is only 2, but she is smart! Plus, the other children will be involved. We are sharing everything with them on an age appropriate level, of course.

Anyway, i would love to hear any more comments y'all might have. I love this forum!!

Linda

I'm not sure you can protect her from bone-headed people. Unfortunately, I think that is something to be prepared for and be reactive on.

Betsy

__________________
Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell

kayleighsmom - I think you are right about worrying about those things that might be said. To be sure, Betsy is also right that you won't be able to control the 'boneheads'. But, I would try to make sure that you are there EVERY step of the way with her, particularly until the age of consent. That's your right, and I think, your obligation as a parent. Don't let your guard up for a Second! If necessary, have a trusted family member to help you, like if you need to relieve yourself at an inopportune time.

I know from Personal experiance, children remember a great deal, even from a very young age. I'd suggest that they remember Everything, but certain items can become more prominent than others.

As an asside, I am currently going thru my own Remembering and Discoveries - nearly 50 years after the fact! Some of them have proven to be quite debilitating.

I'm glad that you have the resources of BLO, and the absolutely wonderful people here, to help you and Kayleigh. Please know that her safety and wellbeing are in my mind and heart, as I'm sure the same goes for others here.

All My Best to both of you.

__________________
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.

Hi Linda,

I am also the mother of a CAIS baby. Our daughter is 17 months. How insane that you have to worry about these things when your biggest wish is the healthy physical/emotional development of your darling child.

I can't offer any good advice about dealing with the medical "professionals", as we live in Switzerland, and the doctor's here are very concerned with privacy and preserving the rights of the patients. I didn't realize how lucky we are until I read your post and saw your concerns. I think you have gotten some very good advice from the members here and I applaud you for looking into this (what other choice, as a concerned mother, do you have?). The only problem that we have experienced thus far is a doctor that is hesistant to share everything with us. Apparently he has dealt with some parents that, after hearing the full story about their child, failed to bond with their child. I discussed this with my OB/GYN, with whom I have a very good relationship, and he advised me to be more understanding, as he felt we were one of the few exceptions to that rule. Since then we have had a good talk with her doctor and now all of us are on the same wave length, with the same objective in mind: to raise a happy, healthy human being.

I wish you the best. Feel free to contact me, I think it would be interesting and perhaps helpful to both of us to share ideas/concerns.

Looking forward to hearing more,

Butkus

Thank you guys so much for your feedback and I'm always heartbroken to hear when someone has suffered for being like us. I consider myself in the "group" because I'm the carrier of the gene.

I came across something disturbing yesterday......
you know those insurance forms where they pay benefits and they send the insured a copy of what they have paid?? The genetic test for my OTHER daughter (the one that is supposed to be "fine") said something like "test results do not match gender of patient". Is it possible (geez we all know it is POSSIBLE!!) that the lab messed up and know I'll have to have my daughters re-tested? and again I won't know WHICH one is CAIS?? What a frickin nightmare!!!!

Ack! I'll let you guys know.

Thanks for listening...

Linda

__________________
Mommy to 4 great kids!

Nick (12) Jake (7) Abby (4) and Kayleigh (2 CAIS)

Hi Linda,

I have been thinking about your last post. Several possibilities come to my mind. One possibility is that if you had both daughters tested for CAIS around the same time, the results could very well be mixed up. What a nightmare. It might be possible that your four year old daughter and not your two year old daughter has CAIS. Which brings a question to mind: If the doctors got the two daughters mixed up, and you never knew that the older daughter was possibly the one with CAIS, why are the doctors in such a rush to investigate and film the younger daughter, who might very well not have CAIS? What is the "social emergency" that is prompting all the perhaps misdirected attention?
Another possibility is that your older daughter, as well as your younger daughter both have CAIS, but that it is only now that your older daughter is 4 years old that you are learning of the fact. That your older daughter possibly went for years without being diagnosed as CAIS (and still might not have CAIS, due to bad lab work) does not appear to have harmed her.
On setting boundaries with doctors, and other issues, you might want to take a look at Sharon Preves' book "Intersex and Identity", which although not CAIS specific was largely based upon interviews with AIS women, and quotes them extensively. Good luck on getting the medical information sorted out.

Peter