The joys and sorrows of a stay-at-home mom, wife, home economist and woman.

Aurora’s Roller Coaster Ride

I thought it would be a good idea to give a recap of the whole journey we have been through thus far with Aurora’s Precocious Puberty symptoms. So here it is!

The last 2 1/2 months have been quite the roller coaster ride as we have been faced with the very real possibility that Aurora might have a condition called Precocious Puberty. Basically, it is the early (very, in her case) onset of puberty, including development of breasts and pubic hair, rapid growth, and other common signs of puberty. It is very rare to find this condition in an infant, particularly one Aurora’s age.

We noticed that she started growing breasts at around 5 months, and then around 6 months we found her first pubic hair. We figured it was probably nothing, but when we brought it up at Aurora’s 6 month check up in August, her pediatrician was very concerned. She was so concerned that she called a pediatric endocrinologist (Dr. Derosiers) and he fit us in the same day. Well, if we weren’t already worried, that certainly did it!

At our first visit, her health history was taken, and she was examined. After that exam, the doctor ordered an ultrasound of the pelvis and renals/adrenals, a bone age X-ray, and some blood work. Based on the results of that initial round of tests, the doctor counseled that we wait a little while to see if we continued to see progression of her symptoms before any further testing was done. Her initial results showed an accelerated bone age (roughly twice what it should be for her real age), completely normal hormone levels, and some enlargement of the uterus and thickening of follicles in the ovaries. I think the doctor was downplaying the test results a little in hopes that she would grow out of it, because in most cases infants do grow out of it fairly quickly.
We went ahead and scheduled a follow-up visit for 2 months later, with the understanding that if we saw progression of her symptoms we would call to get a sooner appointment and do a Stimulation test that would show if the pituitary gland was driving her symptoms. The way the test works, is they put in an IV and do an initial blood draw, and then inject something to stimulate the pituitary and take 3 or 4 follow-up blood draws to see the effect. The test takes about 2 hours, and would not be fun at all for a baby, which is why he suggested we wait to see if it was medically necessary. Well, we did see further progression: her breasts continued to increase in size, and we saw a lot more pubic hair. So we called to scheduled the Stim test for October 4, with a follow-up appointment with the doctor on October 15.

When the time came for the test, the nurses were unable to get an IV in our very strong and very wiggly little girl. After attempting in both arms, the nurses told the doctor they didn’t want to torture her any more. He agreed, did another physical exam and reviewed her previous test results, and felt that we should skip the Stim test and go straight to a brain MRI. This was the first time he actually said that he thought Aurora might have true Precocious Puberty.

Just before they were ready to start the Stim test.

The nurse checking Aurora’s vitals.

We were both pretty relieved that they weren’t going to try getting the IV in again.

We were obviously pretty shaken up at that point, and Aurora was pretty unhappy with the whole situation, too! Up to that point we had avoided doing any research on Precocious Puberty, because Benjamin and I both feel pretty strongly about not borrowing worry before we have to. But at this point, as we saw how concerned the doctor was, we were pretty scared and worried. There isn’t very much information about Precocious Puberty, and very little about the condition in infants (because it is incredibly rare.) We did find an organization called the MAGIC Foundation that offers support for people dealing with all kinds of growth disorders, and through that a Facebook support group for parents of children with PP. We learned that if she is diagnosed with PP that it is quite likely that Aurora would have to receive blood work and shots called Lupron to stop the growth every 3 months until it is time for her to reach true puberty (or receive a surgical implant annually). We learned that the doctor was ordering the MRI to look for lesions or tumors in the brain, bringing up the possibility of our baby girl needing to have brain surgery. We learned that if her condition is untreated that she would likely stop growing too soon and not reach her full stature (less than 4’11” in most cases) and have to deal with the psychological and social effects of going through puberty before she has the emotional vocabulary to deal with it.

We called and scheduled Aurora’s MRI at Arnold Palmer for the soonest available appointment, which wasn’t until 2:00 pm on October 30th. Because she would have to be sedated, she was going to have to fast from solid food and breast milk the entire day. Not the best situation for a 9 month old, but we went ahead and scheduled it and began praying for a cancellation of an early morning appointment for her. We were very happy to get the call that there was an 8:00 am appointment available on October 9. And because Aurora won’t take a bottle, I was allowed to nurse her until 2:00 am, so I woke up several times the night before to nurse Aurora so she wouldn’t miss out on too many calories.

Once we arrived at the hospital and registered, we met the nurse who would be with Aurora the whole time and spoke to the anesthesiologist. And then it was time. We prayed over our sweet girl, and gave her to the nurse in the MRI room, before leaving her and waiting for the test to be done and our little girl to wake up in the recovery room. It was pretty hard to leave her and wait. The nurse called us after they put her to sleep and got the IV in, and called the doctor’s office to see what blood work they wanted done since the IV was already in. It was about 1 1/2 hours until we were finally called back to go see her. She was pretty groggy and her head was really floppy, but she was wiggling around almost like normal. I sat down to nurse her, and even though she had a little trouble staying latched after the anesthesia, we both had the comfort of nursing. They did a final set of vitals and sent us home, saying that she would likely be pretty groggy and floppy the rest of the day. Not our girl! By the time we got home she was back to her very active and very mobile self.

In recovery after her MRI. She was pretty out of it.

They had trouble getting her last set of vitals because Aurora wouldn’t stay still!

Home from the hospital and completely back to normal!

We had a follow-up appointment on October 15 to receive the results of the MRI and discuss her condition. Early that morning they called saying that Dr. D had to cancel due to a family emergency. We went ahead and took an appointment with another doctor in the practice, Dr. Villar, so that at the very least we could learn her test results. Her MRI was clean- no tumors or lesions, and her blood work showed completely normal hormone levels. Because of this, she feels that she does not have Precocious Puberty, but the accelerated bone age and presence of pubic hair are still a cause for concern. (She wasn’t as concerned about the breast development.) She thought we might be looking at an issue with her adrenal system, so yet another round of blood work was ordered. Because we were right next to Arnold Palmer, we went ahead over and had them do the blood work right then.

At her last appointment with Dr. Villar.
And that is where we are. Tomorrow will be 1 week since her blood draw, so I will call in the morning to hopefully learn the results. We have another appointment scheduled with Dr. D on November 6th. So it seems at this point that true Precocious Puberty has been ruled out, and now we need to see if we can discover what underlying condition is mimicking the symptoms of PP without actually affecting her hormone levels. And once again, we are consciously not doing any googling until we have some more information. Just a whole lot of praying! And hoping that we can get off this crazy roller coaster ride soon and finally have some answers.

On a more fun note, Aurora is crawling (every where!), standing, cruising, babbling, teething, putting everything in her mouth, and really getting into her food! Except for everyone always remarking how tall she is, you would never know that she is anything but a very happy, healthy and completely normal 8 1/2 month old girl. Have you ever seen such an amazing smile?

Comments on: "Aurora’s Roller Coaster Ride" (4)

  1. Judy Atkinson said:

    Thank you so much for the update. I have been and will continue to be praying for Aurora and your whole family.
    She is darling!

  2. Judy Atkinson said:

    Thanks for the update. I have been and will continue to be praying for Aurora and your whole family. Aurora is darling!

  3. Jackie Panton said:

    It was good to see you this morning! Praying for wisdom, patience and perseverance as you travel these medical mysteries together! Aurora is so precious! And happy!

  4. Lois Strauss said:

    Wow! What a rollercoaster ride. Praying you will get answers soon.