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Wednesday, March 21, 2012

Central Precocious Puberty ~ Say What?

Some things you just remember like they were yesterday. Things that are important are like that. Events that occur involving your children are probably the best examples.  

It was the middle of summer in 2003. My daughter’s caregiver called me at work to tell me she was concerned about Rachel. She quickly told me she wasn’t running temperature, she didn’t seem to be acting differently or in pain nor was there any apparent cause for the blood in her diaper. In fact she said, “it really just looks like she’s on her period” which is impossible but the only thing she could relate it to.

So while fighting down panic, I immediately go to my supervisor and tell them what is going on and that I’m calling the pediatrician next to see if they can work me in. At this point, I’m worried and scared by something that should not be happening especially to my child. The pediatrician tells me they can work me in so I go pick Rachel up and sit in the doctor’s waiting room with her until she can see us.

We go into the exam room and the pediatrician has me take her diaper off. She examines her and starts asking me all kinds of questions, none of them related to any type of actual physical illness. Mind you there was no bruising or cuts or abrasions that would indicate any type of abuse. I looked it up after I got home on the internet. If anyone had been abusing my daughter, we would have seen bruises and abrasion marks. So we get sent home with no reason whatsoever to put our minds at ease about our child bleeding unexplainedly.

I slept fitfully the next few nights with Rachel on my chest while I’m propped up in the corner of the couch. I didn’t trust having her away from me. Since we had no idea what was wrong, I was worried out of my mind that she would start bleeding worse and I kept checking her diaper to make sure nothing had changed from before. The next day there was no change. I called the pediatrician and had to go back in there and repeat the process of the day before. It was frustrating not knowing what was wrong and leaving without any peace of mind about how to treat the illness.  

Finally on the third day with no change, I called the pediatrician’s office and demanded to have whatever testing we needed done to rule out anything medical. The pediatrician never suggested any testing, I had to demand it and pretty much threaten to talk to the medical board if I had to so I could get to the bottom of what was wrong. The pediatrician sends us to get a sonogram at the radiology place. The technician was amazed once she started the sonogram. She was finished in less than 5 minutes and said that was the fastest she’d ever done one on a baby. Her comments to me were eye opening, because she said that Rachel’s female reproductive organs were adult size. I was in shock imagining adult sized organs in that tiny little body. Now the ‘colic’ and still only taking 2-3 ounces in a bottle (which  had all been documented and told to the pediatrician) made a lot more sense.

I drop Rachel off and explain to the caregiver what we’d found out. Before noon the pediatrician’s office calls me at work to tell me we are being referred to a pediatric endocrinologist who is specialized and trained to handle these types of issues. I feel relief finally that we are being taken seriously and being referred to someone who can tell us exactly what is wrong with our little girl. I call the specialist and get their next available appointment. My husband and I both take off that day for the morning to take her in.

The specialist has the sonogram film in front of her and examines Rachel. She says she has the classic symptoms of Central Precocious Puberty with breast tissue development and having a period. She explains that it is rare to see this in children as young as our daughter and often it’s in children who have had some sort of brain trauma or illness that affects the brain. Another side effect of this illness is the fact that her bones could fuse and stunt her growth because in puberty our bones fuse and complete our growth to full height etc. So she was stressing the importance of treating the illness which was never a question for us whether we would treat it or not. The treatment is a Lupron shot once a month until she is old enough where her body is supposed to go into puberty on it’s own. She told us probably anywhere between age 10 and 12 is what we would be looking at when the treatment would end. She would not have any issues having children. All will be normal once she starts puberty. We are just stopping what her body is trying to do now and make it happen at the normal time it should occur.

So we began treatment with shots every single month. They alternate the legs and it had to be administered in the muscular part of the upper thigh. It’s a painful shot but something we had to do. It’s not a cheap drug either. Luckily now they have a new treatment that involves inserting a small tube under the skin that releases small amounts for an entire year’s worth of treatment. Every year we go in and my daughter is a brave little soul who has day surgery and is awake while they administer a local injection to numb the area. They make a small incision, remove the old and insert the new. 2 stitches later and we are done. They keep her for about 20 minutes after to ensure she’s ok but then we get to leave.

Needless to say, we switched pediatricians after this incident. The pediatrician involved had the gall to send me bills for the 2nd and 3rd days visit/consults, which I called her and told her in no uncertain terms that they had been unnecessary. If she’d of attempted to rule out the medical issues the first day there would have been no 2nd/3rd visit or consult. I also told her that if she sent us to collections I would write a formal complaint documenting this entire incident to the medical board and make sure it ended up being as public as I could get it. The next statement that arrived showed these bills to be cleared off and she never apologized for all the stress she put us through unnecessarily.

Rachel is 9 now and thriving. She goes in for regular checkups and the endocrinologist has warned us that puberty could override this treatment at any time. When her body gets ready, it won’t matter, puberty will kick in. So we are in a holding pattern now waiting to see when that will happen. It’s time now to schedule appointments, get blood work done and get the next day surgery scheduled for mid-summer. I still am thankful every day that while we deal with all this, it could have been so much worse. We could have been dealing with a terminal illness or something disabling. We are extremely lucky as parents.

For more information on Central Precocious Puberty, click here.

Kathie Hitt
I say a prayer every so often for those who have children with illnesses. It’s hard to imagine if you have healthy children, what some parents deal with on a daily basis. We’ve seen some of these things when we’ve gone in for doctor visits and day surgery. I also say a prayer for those the nurses and doctors and surgeons that treat childhood illnesses. I feel it’s important to not only count one’s blessings but spread positive energy as well. The Power of Prayer is Unmatched.