The other day, we hit up CHOA (Children's Healthcare of Atlanta) for Andi's yearly endocrinology appointment. As 'restriction of growth' is a part of CHARGE Syndrome, Andi is followed by endo. In the past, these appointments haven't produced anything of any value, but she's definitely short compared to her peers, and as such, we want to make sure we're doing everything we can and should be doing. I made the appointment several months prior, completely unaware that she'd already be back in school. Also, the location choices were slim and slimmer. I took the Egleston location, which is near Emory University. East of downtown, it is not convenient at all. 9:50 a.m. appointment, we were going to hit traffic. Therefore, our thought was, 'let's leave early so we aren't rushing. Plus, if we get there early, perhaps we can be seen early.' So, we left about 7:15 or 7:30 and arrived at 8:30 a.m. We walked right to the place we were supposed to be, and we checked in on an iPad. Then we sat and waited. And waited. And waited some more. By 10:05 a.m., I approached the desk and asked how much longer we would have to wait. A few minutes later, we were seen by the nurse. She took measurements (height, weight) and vitals. She said that they didn't have a room available yet, so we needed to go out and wait in the lobby some more. We returned to the lobby and sat there for another 20 - 30 minutes, until we were finally ushered into a room. We were seen by another nurse whom input more information and our desired outcome into the computer. After awhile, the Dr. arrived. She introduced herself, apologized for the lateness, said she understood that we saw her colleague in Marietta last year. Then she proceeded to ask why we were there. After awaiting in their lobby for this appointment for a good two hours, I was taken-back by this and must have had a puzzled look on my face for a good full minute. Then, I did my yearly schpeel. Andi has CHARGE Syndrome, and as such, a part of CHARGE is slow growth. That our concern is to make sure we're doing everything we should be doing for Andi. I mentioned that some families are administering HGH, and wondered if we should be doing that. I mentioned that we just returned from CHARGE conference, and yet again, I learned that we should have a bone density scan and a bone age scan. She said that CHOA has a bone Dr. whom specializes just in bones, so that she could consult her. I also said that I was trying to get better about giving her calcium supplements as kids with CHARGE typically should be given more than most. She looked at Andi's plots on their growth chart and said that Andi is keeping up with her growth curve. She said that the desired is 5cm per year and she was right under 5. So, that alleviated a lot in my mind. She excused herself to consult with the attending, and ended up bringing him in for a deeper discussion. He asked point blank, 'what's your goal?' I said that as Andi is a girl, I didn't mind her being smaller. Again, I reiterated, I just want to make sure we're doing everything we should be doing. We talked more about HGH and gathered that we didn't want to give it to her, unless it was needed or recommended. We talked about the referral to the bone Dr. and I let him know that at the CHARGE conference (our first one which was in Scottsdale, Arizona) I sat in on an Endocrinology session with a Dr. whom is pretty much the voice of endo for CHARGE Syndrome. I said he said that we should not only have a bone density scan (which we have yet to do), a bone age scan (which we have yet to do), and that he recommended that kids with CHARGE have double the amount of calcium supplements of typical children due to the prevalence of scoliosis and osteoporosis. The younger Dr. googled the CHARGE Foundation site and found Dr. Jeremy Kirk's name. The attending nodded and thanked me for educating them. We basically concluded that Andi is growing at her growth curve, her HGH level was normal last year, but they would confer with the bone specialist and be in touch if she felt we should move forward with those tests. The attending was talking to Andi when he paid me the best compliment (...snickering: that I've heard a few times!...) He said, 'Andi, you're a lucky girl to have a Mom that knows her stuff.' I did not however, leave with a trophy... but, I digress.
I was grateful to have them finally hear me, since previous appointments seemed to be a complete waste of time. With CHARGE Syndrome, you don't just see a pediatrician. Oh no, that's just not enough. There's the cardiologist, the audiologist, the ENT, the eye Dr., therapists galore, and more depending on the child's needs. It's a lot... and I know I'm missing listing a few. So, a few days went by and I received a call from the endocrinologist, stating that she spoke with the bone specialist and she definitely wants to schedule Andi for a bone age, bone density, blood work, and an ultrasound of her kidney's to make sure all that calcium isn't forming kidney stones. (I've slacked a lot on Andi's vitamins, so I do not have any concerns of this...) We are booked for next Friday afternoon. Very excited to finally have these scans done, so we at least have the data to add to next year's appointment.
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