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adrenal hyperplasia

By March 8, 2010 - 11:50am
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My daughter has AHC, she is 16 and living currently without her monthlys, and her body is not developing as quickly as her friends. Is there something that can be done by her mom and I, or is it all about the cortisol meds?

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Thanks for your time...

March 10, 2010 - 2:49pm
HERWriter Guide

I totally understand. (and what's wrong with intimidating the boys?!!). It might keep them for trying things on with her before time :)

If it's for her self-esteem, it must be her choice. I would let her make the decisions as any kind of treatment done for aesthetic reasons need to come from the person herself and no-one else. If she has brought it up to you, take her along to her doctor for a consult. If she has not mentioned it yet, then don't say anything. She needs to be the one to approach you. It may be the case that she may need a bit of a prod from you if she is shy, but if you bring it up before she does, you risk making her feel like there is something wrong with her. I totally agree that you want the best for her but a girl and her breasts are a very personal thing. She needs to take the lead here. If you do feel like she needs to be approached, it must come from her mom, not her dad.

How does this sound to you?

March 10, 2010 - 2:25pm

her self esteem only....She is beautiful, but she is very athletic, so athletic that sometimes it's intimidating to boys. I'm only wanting the best for her.

March 10, 2010 - 2:10pm
HERWriter Guide


I think you're probably correct in that both her youth, and a little bit of denial, make it hard for a 16 year old to have a solid grip on this. Dealing with this her whole life, she may be burning out.

You may not be rushing things but adding hormones to a child in puberty, who already has a tricky hormonal condition may be risky, and this is something only a specialist who knows your daughters in-depth medical history can help you with.

I'm sorry I can't provide a more definitive answer for you but she would need her own physician for help in this area.

It's worth talking to him, though, although he may prefer to leave things are they are. Small breasts aren't a major concern and she will have other options when an adult (getting implants or choosing formula over nursing if she has a problem in this area).

Are you nervous about her breast development for reasons of future fertility (as in, signs of a lack of) or for aesthetic reasons, for her own comfort/self-esteem?

March 10, 2010 - 1:17pm

I am ok with natures time, but I know if her inconsistent taking of meds adds to slow development, she would be more consistent. I really don't think she knows enough about her condition to look for herself, or maybe denial may play a part, In any case, we thought her deficincies may warrant extra estrogen...Is this a possibility, or are we just trying to rush things?

March 10, 2010 - 1:06pm
HERWriter Guide

Hi again z-man

I understand about the medications. It's hard to get any 16 year old to stay consistent on all she needs to do, and she may just feel like rebelling against the meds. I do hope you can help her understand than consistency is really important.

With regard to her breast size, there are three options to think about:

-She has small breasts due to her condition - adrenal conditions DO cause the under development of breasts.
-She is maturing slowly. Some young women don't develop quickly and don't really "get" their breasts until they are 17 or 18.
- She is naturally small breasted. Many adult women are a A cup, with little development. Some womens breasts are almost unnoticeable, even if just wearing a skinny tank top. There is nothing wrong or abnormal with them, they are just flat chested, like another person may have a large head or tiny hands. I am sure that genetics may play a part, also.

If you are concerned, talk to her specialist about her sexual development.

Does this help you? Are there any other questions you may have?

March 10, 2010 - 12:25pm

she was diagnosed at birth, and she hasn't been consistent with her meds. But she is underdeveloped from appearances....she is small busted. I would like to know if that is just part of the symptoms, or just waiting for nature?

March 8, 2010 - 3:45pm
HERWriter Guide

Dear z-man

Thank you for your question and for looking out for your daughter!

Empowher describes adrenal hyperplasia as "...an inherited disorder that causes the body to have insufficient amounts of certain adrenal hormones. Depending on the severity of the problem, the disorder can be life-threatening; however, most people diagnosed with CAH who receive proper treatment lead normal, healthy lives."

As you mentioned, cortisol is a widely used treatment for CAH but so is nutrition. Here is an extract from our CAH page:

Medications for Those Born With CAH
Most children born with CAH need to take cortisol and/or aldosterone replacement medications all of their lives. With constant monitoring, no side effects are expected because the goal of the treatment is to keep the body’s normal balance of hormones.

It is important to know that during stressful situations the dose of cortisol needs to be increased as directed by your physician.

Dietary Treatment
Those with the salt wasting illness usually require additional table salt in their formula. Replacement cortisol can increase appetite, which can lead to becoming overweight. Therefore, caloric intake should be followed closely in these individuals.

(You can take a look at our CAH page here : http://www.empowher.com/media/reference/congenital-adrenal-hyperplasia)

There is also some great information in this fairly extensive article, written by one of Empowher's writers - http://www.empowher.com/news/herarticle/2009/09/23/adrenal-gland-disorders-%E2%80%93-congenital-adrenal-hyperplasia

Z-man, mediation may have to be a part of your daughter's life forever but it can depend on her individual situation is. Do you know what kind of AHC your daughter has? Classic or non-classic? When was she diagnosed? Have you been in touch with the CARES Foundation?

If you answer a few questions, we'd be more than happy to help your further. We look forward to hearing back from you!

March 8, 2010 - 1:53pm
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