Wednesday, May 25, 2011

Anorchia Fan Page on Facebook

We finally have a Facebook Fan Page for Anorchia. It is called: "The Circle of Invisible Friends", and it has been created to provide an open space to everybody who has been impacted by Anorchia in one way or another.

It is very important to have a united group so we can spread the word and help making this condition more visible and also to start the path to find the cure.

The mission of "The Circle of Invisible Friends" is to support and strengthen the Anorchia awareness movement to become a powerful voice and advocate on behalf of Anorchia patients in the Us and beyond.

Monday, May 16, 2011

Congenital Anorchia: My Son's Supportformyson

My son was born with congenital anorchia. I was 1st told that he had undecended testicles and they would come down on their own. After a few months, I went to another pediatrician for a 2nd opinion. I was then sent to a pediatric endocrinologist. I am very blessed to have such a wonderful doctor who has treated patients just like my son. Only 5% of boys are born with this condition and my son was the Dr's 3rd patient. He knew exactly how to treat, what info to give me, and how to handle the future.

At 5 months old, my son had an ultrasound done on his abdomen. This was done for 2 reasons: 1. To be sure that he had male sex organs and not both male and female and 2. To look and see if the testes were indeed in the abdomen. 

Yes, my son is "all boy" he has male sex organs but no testicles. The news was devastating to me, I felt I did something wrong. My doctor assured me this had nothing to do with me, it was mother nature and I could have in no way made this happen to my son. I guess as a Mother you feel guilt when you find out something is wrong with your child. At 5 months old, my son had surgery. Exploratory abdominal surgery and testicular implants. 

He then started low doses of testosterone after surgery. Injections every week to every other week. He had regular xrays to check bone growth/age. He also saw the pediatric endo. every year. As a baby, the injections were not long term, just enough for growth and to get levels in his body. 
At the time of diagnosis, my son had no testosterone in his system! 

My son is now 11 years old. The doctor and I talked with him about his condition when he was 9 years old. He understands but it was heartbreaking, I stayed strong for my son but let it all out that night after he went to bed. He will see his doctor in June and begin testosterone therapy-it will be forever now. The therapy begins when puberty is present. I was told that testosterone isn't what kicks starts puberty, it's the adrenal gland. My son will grow hair, get a deeper voice, etc all w/o testosterone. He will need the hormone for muscle growth and genital growth. My son also has the option of having another surgery to put in bigger implants if he chooses. 

I am very happy there is a support group available for us. I have searched the Internet for years and all I've found is sites that make you pay which is ridiculous. I am glad I can share my son's story, read about other people's experiences and ask questions. I am a single Mom raising my son, he is my only child. Not only does he have a fabulous doctor but my son and I have a very open relationship and he is able to ask me anything when it comes to his condition. 

I am glad that my son knows and trusts that he can ask me anything and I will help him in any way possible, If I don't a have an answer, I simply tell him that and then contact his Doctor and we work through it. I look forward to reading others stories and know that with all of us supporting one another, we will raise awareness and a cure will soon be found! I have a page on facebook that I invite you to join and place information or experiences on the wall for others to see, it is my hope that maybe a health care professional or (fingers crossed) a physician comes across the page and it piques their curiosity to research anorchia and one day find a cure or just give us more answers as to why.

Friday, May 13, 2011

Testosterone shots for my Newborn

As you all know, I was fighting to find an endocrinologist who was willing to give my son the testosterone treatment that will allow him to have an average size penis.

He was born with a 2.5 cm long penis and in our opinion it was a little too close to what it is considered a micropenis: 2 cm.

Average length for his age is 4 cm.

We found an article on the internet that talks about a study conducted in 25 kids with anorchia at different ages, and pretty much all of them got results after getting 50 mg on a monthly basis for a total of three months.

At Children's Hospital in D.C., we found a great endocrinologist that prescribed the shots, although he prescribed 25 mg, apparently the amount does not make any difference.
They worked! Now we are looking for a doctor that can put implants in our baby.