"Childhood is a short season." - Helen Hayes
There's been lots of progress since my last post. Elise's persistent cough resolved, the stye she had in her eye resolved, and we got in to see a pediatric endocrinologist to address the suspected premature ovarian failure (POF).
The cough and stye seemed to resolve pretty quickly once she stared a 5-day Z-pack antibiotic. It could be coincidence, but I don't think so. Her eye was looking pretty bad and it took quite a while but it seems to be gone now. The cough she'd had for a month just seemed to turn off like a light switch about 2 days into the 5-day Z-pack treatment.
We ended up giving up on the pediatric endocrinologist at CHLA. We couldn't get in for first visit until late February. And worse, we received a letter saying that we should expect to wait 3-4 months for any necessary follow-up visits. They should have just given us a list of alternate providers. So I looked up who was available at UCLA and called. We had an appointment within days.
The endocrinologist ran several tests including bloodwork, an ultrasound and a x-ray to determine bone age. In the end, she confirmed the POF diagnosis and placed Elise on hormone replacement therapy which is essential a variety of birth control pills. The Dr said Elise should have a period again in a few weeks and things should even out pretty quickly. When we discussed the longer term the Dr said she really couldn't tell. Some women recover function and can go off HRT but others can't. Since the treatment is birth control the Dr. said that most women just take HRT until they decide to try to get pregnant and then take it from there.
We also discussed Elise's overall growth. She had been tracking just above the 10th percentile for height and then her growth stopped a little over a year ago. Now she's well below the 3rd percentile. The DR. couldn't say why this is so (probably has to do with colitis and all the meds she's taken), but the hand x-ray indicated that her "bone age" is about 13.5 years, so she's unlikely to grow much more than another inch. That means that Becky probably won't be the shortest one in the family anymore. On the other hand, she's eating well and there is anecdotal evidence that some people "catch up" so we'll just wait and watch.
The biggest news is pretty exciting for all of us: Elise is moving from biweekly visits to CHLA to monthly visits. Yeah! Her lab results continue to look better and better and so the Dr's feel that she doesn't need to come in as often. Additionally, she had been getting monthly pentamidine breathing treatments to prevent pneumonia; now she is transitioning to a oral antibiotic that she takes only on the weekend. Neither the frequent trips to CHLA nor the pentamidine treatments have been onerous, but it'll sure be nice to save the insurance copay, gas and time.
So all is well. We're looking forward to Spring and then Summer which will mark the 1 year post-transplant point.
