Tonight I felt inspired by a woman in one of the groups I follow on Facebook. She has her own blog to describe her daughters life dealing with this condition and I thought I would get out my blog and write down a few of the things we have dealt with.
In 2013 During the second last week of the term (I am a teacher), My mum messaged me to say that she had found some blood in Alice's nappy. At this date Alice was was 16 months old. I was was freaked out by this and went and picked her up immediately and too her to the doctor. Alice would not let him look down there properly so he just assumed it was some kind of infection and gave us antibiotics. After three days on these antibiotics I saw no improvements, I saw a different doctor who instructed us to go to the John Hunter Hospital in Newcastle.
We saw many doctors during this week, it is a whirlwind just trying to remember as i was around 20 weeks pregnant at this stage as well. We had x-ray, ultrasound, blood tests, all pointing towards puberty. I was scared as heck. I'm sure you know the feeling of "What did I do? How could I have prevented this?". Our last procedure was the MRI and a week after wards we went down and heard that Alice has a small lesion on her pituitary gland.
Hearing this was terribly hard, as i had done my research, and 95% of precocious puberty cases are for unknown reasons, why did we have to lay in that 5%. Following this Alice had a stimulation test which showed her hormone levels and how the treatment would effect her (zoladex).
Following this we had zoladex every 12 weeks to stop the puberty. It was working well for stopping the menstrual cycle but Alice continued to grow rapidly.
Recently we have transferred over to Lucrin which has improved her growth rate dramatically. she handles the injection much better than the zoladex and we can also get it administered at our local GP.
Over the next few weeks I will post more about her symptoms and what its like living with a beautiful little girl that has to deal with things much too advanced for her body.