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 Hi! My name is Denise de Reyna and I am the Division Consultant for Central Precocious Puberty.
To start everyone off, my personal story is listed. Members are allowed access to the restricted area for other personal stories and Q & A about this topic. Please send in your stories so that we can expand this very important area for CPP families. Thank you!
Our story: Emily, my very sweet, 7 year old, was diagnosed with Central Precocious Puberty (CPP) a little over a year ago. She has been on monthly injections of Lupron since September 2003.
It was when Emily was 4 ½ years old that she showed her first signs of Precocious Puberty. It was the fall of 2001 when I noticed that Emily was developing breasts. She was changing her shirt and I could see that her breasts were not the same size. I began examining them more closely and upon palpation could feel that one side was harder than the other. I wasn’t concerned at first, since she was slightly overweight, I thought this might be normal fatty tissue. I contacted my pediatrician who saw us the following day. He determined that she had a breast bud on her right side and immediately contacted an endocrinologist. He explained that the endocrinologist would order a series of tests to determine if Emily was, in fact, a precocious child. In the mean time, he gave us a prescription for a bone age. The bone age is an x ray of the wrist that estimates chronological age by bone development. As he explained it, it’s like cutting open a tree and counting its rings to estimate it’s age.
We had an appointment to see the endocrinologist 2 weeks later. Dr. Fort took a lot of background information on my husband, myself and our families. Adult height and age of puberty were of foremost importance. He examined Emily, took height and weight measurements, and reviewed the results of her bone age. Her bone age was not advanced and although her growth rate was above average, he felt that Emily did not have precocious puberty. He ordered a pelvic sonogram, a vaginal smear and based upon these results, possibly a stimulation test.
The is nothing I dislike more than waiting for tests, so I went home and scheduled the pelvic sonogram for as soon as I could get an appointment. The day of Emily’s pelvic sonogram, we had a 7:30am appointment, so I thought we would be in and out of the office relatively quickly. However, the receptionist who had given us our preparation orders told us that Emily would not have to drink water before her exam. When we went in to see the technician, he informed us otherwise. We then had to go back to the waiting room and begin the process. About 45 minutes later we were ready to be seen again. The technician was very thorough in his measurements and after about 15 minutes he brought the doctor in to take a look for himself. The technician and the doctor did some consulting and explained to us that Emily’s ovaries were slightly large for a child her age.
We promptly ran over to our pediatrician’s office. It was now 9 am and luckily, the pediatrician was in his office doing paperwork. We discussed radiology’s findings and I explained to him that my husband’s brother had been diagnosed with a pituitary tumor as a teenager. I was very concerned that Emily could possibly have a pituitary tumor and wanted an MRI as soon as possible. He immediately got on the telephone with both the endocrinologist and radiologist. Approximately an hour and a half later we were back at the radiology office for an MRI.
Since Emily was only 4 ½ at the time, we discussed with the doctor the possibility of her needing anesthesia in order to remain still for the test. We decided to try it without first and see how she did. The staff couldn’t have been nicer. There was a woman technician who told me that when her son had an MRI, she laid in the tube with him. I asked if I could do the same. She gave me the thumbs up, I threw myself on top of Emily and we went into the tube together. Amazingly enough, she was able to remain still without any anesthesia. I couldn’t have been more thrilled when the doctor came on the speaker after a few of the first pictures had been taken to inform us “everything looks great mom and dad”. By the end of the MRI, Emily was so exhausted by the morning’s events she was falling asleep while still in the tube. Before leaving, we were greeted by all of the staff and Emily was presented with a large x-ray picture of her brains for show and tell at school.
After this ordeal, the procedure of the stimulation test was a breeze. Emily was a champ! She didn’t whine or whimper. And perfectly enough, the results of that were prepubescent and it would be 6 months before we were to return to see Dr. Fort.
Emily proceeded to be monitored by Dr. Fort for the next year and a half. She had an annual bone age, pelvic sonogram and stimulation test.
In the spring of 2003 Emily’s bone age had become quite advanced. She had just turned 6 but had a bone age of 9. A stimulation test would have followed, had it not been for the lack of medication production. As many of you know, stimulation tests could no longer be performed because the company had put production of the necessary medication on hold. We now had to rely on a third generation blood test.
We attended our first MAGIC Foundation Conference in July 2003, just prior to receiving the results of Emily’s third generation blood test. I was so excited to meet other families who had the same questions, concerns and frustrations as I had. It really helped me to hear the stories and experiences of other families dealing with Central Precocious Puberty.
When we returned home, we received the results of Emily’s blood work. Although her levels were still prepubescent, they were borderline. Dr. Fort recommended that Emily have another MRI and begin receiving injections of Lupron every 4 weeks. Having attended the Conference, I now felt that I could make an informed decision. I’m not sure I would have felt that Lupron shots were the right thing to do if it hadn’t been for the MAGIC Foundation Conference.
Emily has been receiving Lupron shots every 4 weeks since September 2003. She’s a real trooper. We have our own little routine on “shot days”. We have a standing 7:00 am appointment with a nurse in the endocrinology department at Schneider Children’s Hospital. Emily and I leave her 2 younger sisters at home with their dad and travel a half an hour to the hospital. It is part of our routine that we park on the top level of the parking garage and take the elevator down. We are very thankful for our favorite nurse, Kathy, who greets us with a cheerful welcome at such an early hour. Emily barely even flinches when she gets her shot and seems to tell Kathy every month that this one wasn’t as painful as the last one. She’s either getting used to it, or the thought of the injection is worse than the injection itself. The most important part of our trip comes next. On our way out, we stop at the Au Bon Pain shop in the hospital for a Krispy Kreme donut, a bottle of cranberry juice and a little alone time.
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