Saturday, May 23, 2009

Hannah's endocrinologist appointment was very long but very informative. I really like this doctor, he takes the time to explain everything, answered all of my questions (even the ones I found online) and took as much time as was needed.

He thinks the scan is off on it's readings. It's complicated, but the radiologist has to draw around Hannah's bones to set up the computer for the bone density calculation. If they don't outline it exactly, or make the outline exactly like the last time, the results will be skewed. We think that is what happened. It's very clear on a part of the scan that it wasn't outlined as precisely as last time, and the computer therefore measured some blank areas. Of course, that would register as zero bone density, affecting the outcome of the reading.

He also told us that the scan we had done had a pediatric scale for the spine, but not for the hip. So, the hip reading is really irrelevant because they are comparing Hannah's bone density to that of a young adult. He does believe that the results probably show a similar reading to the last scale, or possibly down just a hair. He wants us to have it redone at a different hospital that has better pediatric readings for both hip and spine.

Hannah's blood work did show low Vitamin D and regular (even on the high end) Vitamin C levels. Her other blood results also indicated that she does not have any thyroid issues, or other endocrine issues which would prevent absorption or creation of those vitamins. So, we are now supplementing Hannah's diet with a Vitamin C/Vitamin D combination vitamin. He still wanted to supplement with Vitamin C because Hannah isn't taking in enough calcium each day.

Also, Hannah's blood work showed that her pituitary gland has been damaged by the radiation she had and is not producing enough growth hormone. This is why she is only growing at half the normal rate of a child her age and most of the growth is coming from her legs and not her spine (which also received full radiation.) It's really obvious if you see her in person. Her torso area is filling out, but not getting any longer so she is starting to look more filled out than before. She really doesn't like this and mentions it to me once in a while. The doctor wants to start giving her growth hormone after she reaches the 2 year mark-2 years out from end of chemo, which will be December 2009. This is the point they feel more comfortable giving her the hormone without spurring the growth of the tumor again. Some doctors believe it will cause a recurrence, and others say there is no evidence. Sure wish we didn't have to do it, but I know they will monitor her closely. Unfortunately, this means daily injections with a device somewhat like an epi-pen. She still isn't thrilled, but we have some time to work up to it.

So there's the scoop. I told the doctor I thought endocrinology is very complicated. It's all tied together-the IGF, PTH, TSH, HGB A1C, Free T4, T-uptake, activated and non-activated calcium, I-25D, 25D, osteoclasts, parathyroid, thyroid, phosphorus, CA2t, EGFR, hyperthyroidism, hypothyroidism, hyperparathyroidism, pseudohypoparathyroid, non-pth hypercalcemia, ceruloplasmin, insulin like GF bind prot 3, bmd, and how all of these things interact with the liver, gut, blood, colon, bones, etc. etc. Want me to go on?

The doctor also wants Hannah to be seen by an orthopedist for her foot pain. He thinks she is at high risk for stress fractures, and she may have some in her feet already. Today she hurt her foot again while she and Colby were outside playing (oh, I mean helping us open the pool!) She said this time is hurts worse than usual. She won't walk on it at all. We'll see what tomorrow brings.

Next week I have to set up an appointment with her orthopedist and wait for the doctor to call about where we should go for the pediatric dexa scan. On a positive note, the last few days have brought a few less stomach aches (crossing my fingers that the tide is turning.)

Off to do more luminaries with the girls, it's fun!

♥Kim