What boundaries to set and how to do it?

[kayleighsmom]

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

[Betsy]

Hi Linda,

Welcome to Bodies. I'm happy you found us :sign16:

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.

[miriam]

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.

[kayleighsmom]

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

[Betsy]

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'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

[Wyn]

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.

[Butkus]

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

[kayleighsmom]

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

[Peter]

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

[miriam]

I came across something disturbing yesterday......

Only one way to find out... ASK YOUR DOCTOR! And ask him/her NOW.

Groeten, Miriam

[Dana Gold]

Hi and my belated welcome to BLO!

Usually labs will perform a repeat test if the initial results are questionable or "not as expected". Ask the clinician if such was done. In addition to Peter's suggestions, a false positive may have occured. Questions for your doctor/s: why and how was the assumption/conclusion made that Abby is "fine"....was an gene-specific AR test performed on her prior to the recent (same or different) test? Also, an explanation should be made as to what kind of "genetic test" was done to KayLeigh to dtermine CAIS (same as Abby's?) and why the phrase "does not match gender" applies in Abby's case.....this phrase was not there with KayLeigh?, I'm assuming.

I apologize, but the "Science Nerd" in me noticed that you mentioned your other children having health concerns...the boys, I assume....Abby as well?
Your doctors and your family do indeed have a lot on "your plates". You and your family ought to be commended for your courage and tenacity in dealing with all of this......so: :star:

Miriam is right, answers need to be addressed and lab errors (if any) need , well, submitted for re-test (insurance "merry-go-around").....and , having worked in pediatrics many years ago....I know kids (and the parents) hate having blood drawn :cry_smile or "samples taken":eek:

Good luck...confusion and uncertainity from not knowing the truth and "the road ahead" is nerve-wracking... :smash: :confused2 ...I wish all of you well.

Dana

[kayleighsmom]

I had the girls tested at the same time and the blood was sent off to some lab in California. I specifically asked that they be tested and their pedi didn't know anything about the disorder. I told him to just do a general blood test on them to determine XX or XY and that I would take it from there. So there really wasn't any social emergency except that I wanted to know so that I could best be prepared to parent my children.

Abby's paperwork says "Diagnosis 2578 is incompatible with the sex of the patient"

Kayleigh's says "please submit a more specific diagnosis code"

So I called the pedi's office today and was told to fax a copy of the EOB and they would put it on the drs desk and he would look over it when he comes in tomorrow. No matter what happens, I'm going to have to have them retested. For one, I won't trust the results and two, they can now tell if a person is a carrier of the gene just by a blood test! How interesting is that?! That's so exciting! They had a piece of my skin and blood work and clear up until 1991, they could not tell if I was a carrier until my daughters came along. So I would love to find out as much of this information as I can as I didn't have this much information available to me and my sisters.

I'll come back in a bit, the kids are starving.... so I must feed them before they eat the paper off the wall!

Linda

[Dana Gold]

Abby's paperwork says "Diagnosis 2578 is incompatible with the sex of the patient"

Abby's lab request form had her sex indicated as Female and the result may have been 46XY (male karyotype)....but it is odd that the statement specified "diagnosis" .....labs don't make diagnoses, neither do insurance companies....your (her) doctor should know the diagnosis code, as well as the insurance carrier/agency ....sometimes "rule out" and diagnostic codes are listed on the lab test request form (front or back).

Kayleigh's says "please submit a more specific diagnosis code"

I had a karyotype (listed initially as sex chromosome test) done about 3 yrs ago, and at first the lab told me they couldn't perform it unless the doctor specified a different code to tell them what to "look for" and the reason why....so after he (my Endo) recoded it to check for Klinefelters, and then they did it, but I had to come back another day for that separately.....coding is an insurance requirement... for them to determine "eligibillity of coverage"

I added this link under another thread...and yes, active and latent carriers, and variable forms of Androgen Insensitivity can be tested for.....it is awfully technical, though....but informational

Clicking on any of bolded items gives a quasi-pop-up definition:

http://www.geneclinics.org/profiles/androgen/details.html



Take care....make sure to feed yourself, too :coffee: :bowl:

PS: I'm sorry I wrote Kayleigh's name wrong (KayLeigh) in the previous post.

Dana

[kayleighsmom]

Hey Dana,

You guys are so awesome for responding so quickly. It's great to have people to bounce comments, concerns and ideas off of. What a blessing this place is!

Anyway, that's the thing Abby was the one that was supposed to be "fine". When I got the results of the test it was Kayleigh that was supposed to be the one that came back with the XY genes. Sooooooooo....... I would have understood it had it been on Kayleigh's paperwork, but when I saw that on Abby's I'm thoroughly confused. See what I mean?

Hopefully I'll hear from the dr ASAP and he'll say something to put my mind at ease. Thanks for the link. Don't have a lot of time or brain power to look at it just yet, but I'll check it out in the A.M. when I'm more fresh.

Thanks again and I'll keep everyone posted!

Linda Kaye

[Kailana]

Hello there.
First of all let me say i am so glad that you came here to this board. I hope that you read this because so far noone has mentioned it. Please for your children get copies of all there medical tests and save them for your daughters. I am 34 and have known i am intersexed since 22, Backinjury led to a MRI, led to alot of blood work, and lab results, XY/XO also have CAH, Right Adrenal gland was removed at some point. When i was 12 my family docor told me i was female. But he wouldn't tell me how and i asked. I was a boy i thought. But i have always had gender issues. My parents and doctor wouldnt tell me anything. it was military doctors and German Doctors who told me when i wa serving in Germany, in the military. I was an infantry, i am a Dessert Storm Veteran as well. and finding out at 22 what i am exactly and what additional gear i have inside was very hard. The Doctors over seas treated me with respect. Although they didnt seem to have that much knowledge when it came to intersexed issues at least they were honest. Since then I hav had so much trouble gettiing any medical records. from my childhood. What i do have just barely hints at being a little different, there are a alot of shes instead of hes, statements Like" Physically she looks like a boy with a little extra fat on him", Or "she appears to be developing as a boy and is fine for sports". or worse yet i have stuff like Mar 19, 1971 Laparoscopy was performed" But there are no results. So if you can Gt all of your childrens Records for them now. And save them for them. They may not want to know untill they are much older, i really didnt start wanting to know everything untill i hit 30. And now i cant get them. I have tried so many times. Sometimes i have ben told that i have no records then a few years later something pops up in my records that wasnt in them before. When they start asking for them, the records that is if you have them ready they will appreciate it.
As for some of your questions?
Photos-thats a nono
No films either
And kick out anybody out of the examining room that shouldnt be there. Yes the medical staff would like to have there interns see whats there. As that would help them in there own profession but the medical Community still is unaware of the amount of trauma and harm that it will cause. Your children will feel like freaks if they are subject. There will always be this overwelming doubt that they are normal. And they will wonder why.
So if you can make it as easy on them as you can. And my last advise tell them that no matter what you love them and will always love them. You may think that im being callous here but im not trying too be. They will need the support that you provide. So far It is my understanding that you have 2 sons and 2 daughters, be prepared that even though you raise your children as boys or girls, there is a higher possibility of gender identity issues with intersexed children. In the end only your children will be able to tell you what they are. My best advice is raise your sons as sons, raise your daughters as daughters. But should they start having serious issues about there gender, then listen to them. not doctors, not other members of your family. Please listen to your children. Your children are young still, there are other issues too that no one has mentioned, Homosexuality is another thing that is also more common among intersexed. As your children get older teens and 20's be prepared( i dont know if that is the right word) for your children to really start questioning who and what they are. Particularly with CAIS if they know they are genetically male, how will they behave knowing they have a female body. Will they wonder if they are cursed? Why did god do this to them? They will need a lot of help. And alot of support. While Complete androgen insensitivity Syndrome is rare they need to know that they are not alone. and that there are many other people just like them in the world. They honestly shouldnt need any counselling untill you start noticing theres a problem. Counseling alone can also be traumatising. And if is just your girls make sure you find a female therapist. So far i have found that Male Psychologists are very pig headed. Women are much more open minded and sincere then men. That goes for doctors too. It would be easier on them, i think then to deal with a man. im 34 CAH,XY/XO mixed gonadal sysgenisis. Every male doctor i have had and psychologist are very opinionated, they have a weakness, consider the male psyche to be the stronger, the male body to be stronger, its not though. there Egos shatter easier, Im sure that they have told you that its best to raise your daughters as girls as the CAIS wont allow for Testosterone supplements. which is true. but what if when your daughters are 16 or 22 or 27 and decide they arent female. And are Genetically men. If they do, dont question it, be there for them. Support them. What ever decision they decide to make concerning there lives support them. There is no person on this earth who can tell you what is best for your children, only your children can do that. In the end its your childrens voices you need to listen too.