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Hello-
Just took my 4 1/2 year old to her endocrinologist. Still on the trail of a diagnosis, though the doctors are in a greater rush than we are to get there...They are pretty bull-ish about the whole thing...want us to "know" so that we can better anticipate her gender expression later on...I feel like, geez, she's just 4 1/2, and she is healthy, what's the rush? Anyway, had to be a real bear with them, and I was proud of myself for standing up to them. Phew.
We got some results of an ultrasound back...No uterus or tubes, but gonads (not streaks) low down in her abdomen. So, they are thinking CAIS, PAIS, 5-alpha reductase or some other sort of "biosynthetic error". - They are recommending two things, as next steps, and I would love your feedback on these recommendations.
First is ACTH Stimulation test - my understanding is that it is meant to try and stimulate her adrenal gland(?), and would mean about an hour with a needle in her arm...two injections into it.
Second would be an HCG Stimulation Test - to see how her body reacts to testosterone? And would mean shots every other day for a week...I am REALLY not into this one since the repeated shots would be very traumatic for my child.
Please give me your feedback on these recommendations. Has anyone been through these tests? How did they make you feel? Were they "worth it" in terms of help toward a diagnosis?
Thanks SO much.
Hi,
This may seem very elementary, but has anyone simply "asked" your child if there is a preference for one gender or the other? While medical tests can be performed, at the end of the day, they are but pieces in a larger puzzle. They are not the deciding factor. Only the person themselves can ultimately tell you how they feel and view themselves.
Now, while there are many reasons that a decision need not be rushed, from a purely medical side, there is a concern that the longer testicles are allowed to remain in the abdomen, there is reported a higher incidence of testicular cancer. In addition, abdominal testicles lack fertility. So, if your child were to choose to be male, there would be a need to externalize the testicles, if possible.
Not sure that what I have said is of any value, but I tend to consider highly the opinion of the child. After all, it is their life and not ours.
Respectfully, Meadow
Let me append my previous statement. There would most likely be a strong debate on whether a person 4 1/2 years old could adequately express which gender they view themselves. And I would agree that the answer may not be totally clear. But, in addition to asking them, observation of their behavour along with other indications should be taken into account. And again, this is another piece to the overall puzzle. I suppose that my vantage point consists more of considering a psychological evaluation over that of a physical one.
Meadow
@<hidden> megala: I’m not a medical professional and I think that you should ask another doctor for a second opinion. That said, I can tell you that a definitive diagnosis is very important for your child. You simply HAVE to know whether or not the body of your child will respond to androgens. I don’t know the case of your child and for that reason I can’t tell you which treatment is the best. Please, do your child a favour and ask an experienced medical professional for a second opinion.
@<hidden> meadow: Because of what you just said in your addendum it is of utmost importance that a child gets a correct diagnosis. If the child has a female gender identity and a condition like pais, 5ard or 17bhsd, the androgens start to work before the child can tell what his/her gender identity is.
Unlike children with a gender identity disorder, most children with an intersex condition are not able to tell their gender identity the way you expect from them. This, btw, is also true for people without an intersex condition. I guess you are a bit biased because of your own experiences, but most people don't care about their gender identity until they reach puberty.
Groeten, Miriam
Hi meg,
on the injection issues, there is some cream that can be applied to numb the site where the needle goes in. The name of it escapes me but I know it's mentioned often on the CAH.org board. I'm pretty sure it's only available through prescription. Hopefully that will help the trauma some.
> The name of it escapes me ....
EMLA
Miriam,
I absolutely agree with you. In fact, after my first post, I anticipated your response, and thus added the qualifiers in the second. See, I was listening to you even before you spoke!! I guess, because of my experience, I always will insist on inclusion of psychological considerations in addition to the medical ones. I feel that each and every piece are important parts of the overall puzzle.
I suppose some of my concern stems from a rather famous case in the 90's (please, someone correctly me if I'm wrong) where I believe a child was born with something, but in addition had one apparently good testicle. The child, even in a preschool setting, very much acted like a male. Yet, the surgeon removed his one good testicle on the basis that it was "cancerous". Histopathology from the lab reported that the testicle was absolutely normal with no cancer. The lesson I got from this case was the callous disregard by the doctors for the child's behavour. It is largely because of this case where I base my concerns. (NOT for what one might think about me!)
Also, I would not disagree with someone who might state that gender identity is settled in puberty. I'll part ways with many by stating that I feel that many with GID only say that they "knew" their gender disorder as very young children because they have rewritten their own history only to satisfy a therapist and justify their condition to themselves. (For the sake of honesty, I will clearly state that my issues began as a result of puberty). But, none the less, I will have continued concerns over gender expression, as I can state that it can be absolute hell when things don't match.
Respectfully yours, Meadow
I agree with the recommendation that a second opinion be sought. I think that it is a good idea to have the recommended tests done. These tests do not have an irreversible impact on the child, and I am sure you will take every step to minimize your child's fear and pain. When I was seven years old, my mother told me that, although I was being raised as a boy, that there was the possibility that I might not masculinize at puberty. Leaving aside issues of gender identity, I spent many hours thinking about her remarks. If, at the present time, doctors can get a better idea of an intersex child’s possible developmental future, I am all in favor of it. I agree that psychological issues involving gender identity are important, but it is also important to recognize the great stress both in the family and intersex child (either consciously or unconsciously) caused by incomplete medical information about an intersex child's possible future development.
Peter
Thank you thank you for all of your thoughtful posts. I am thinking that we should proceed with the ACTH at least since it requires only one or two injections...and one visit to the doctor...and wait a bit for the HCG stimulation test...I think she would understand it better, and be less afraid if we waited a year. And she will only be 5 1/2 by then, so no risks of hormones kicking in with unwanted affects yet, I think. I'm glad to hear that these tests don't have long-term affects to be concerned about.
And thanks for telling me your concerns about psychological issues, too. It's hard to know what the right thing is to do...but we are trying to be aware and sensitive. Just so you know a bit more where we are coming from as parents with our child...we are being very open and honest with her...currently talking with her about being an "intersex girl" - a special kind of girl which means that she has a little boy in her too... She is currently very identified with "being a girl"- important to pre-schoolers, I guess, though not something we have encouraged...neither of us parents are very typical of our gender...but we tell her that sometimes people grow up to be a different gender than they are as children... (Different situation, but I have an aunt who was born male). I think she just barely grasps gender...what it means...
The next thing to talk about is why they did surgery on her genitals before we adopted her...Ugh.
I am also concerned about the psychological affects of stressful tests on her at this age...thoughts on this? I advocate strongly against too many people looking at her genitals, and let her say no when we can...Re. the second opinion, I'm not sure who else I could go to here in San Francisco...currently seeing Dr. Felix Conte at UCSF -he is blustery and pushy, talks about being an expert, but underneath all that, he has shown me that he really does care about my child, and backs down from his positions when I am really in his face with my concerns. I would be willing to travel, and think I heard of a good dco in Minnesota? (I have my notes at home with the name.)
Anyway, they are doing urine screening right now that may help narrow the field -- re. 5 alpha reductase, and one other...geez this medical terminology gets confusing to a newbie like me! And the doctors talk SO fast (as I am scribbling my notes, and trying to entertain my daughter simultaneously :))
THANK YOU AGAIN for being so responsive, and thoughtful. I welcome any further thoughts/ideas/comments.
Meg
>I suppose some of my concern stems from a rather famous case in the 90's (please, someone correctly me if I'm wrong) where I believe a child was born with something, but in addition had one apparently good testicle. The child, even in a preschool setting, very much acted like a male. Yet, the surgeon removed his one good testicle on the basis that it was "cancerous". Histopathology from the lab reported that the testicle was absolutely normal with no cancer. The lesson I got from this case was the callous disregard by the doctors for the child's behavour. It is largely because of this case where I base my concerns. (NOT for what one might think about me!)<
If I'm not mistaken, that is the story of a little boy named Patrick as seen on the Learning Channel's "Is it a Boy or is it a Girl?". . .or was it Discovery Channel's "Gender: Unknown". Either of these were very helpful, by the way.
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