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Wednesday, November 18, 2009

An Update about Jane

Jane saw her pediatric endocrinologist today, and even though there was nothing in particular that shouted out to us a new revelation, I did come away feeling encouraged that we're on the right track.

It had been four months since her last endo appt. Six and a half weeks ago, we had an overnight sleep study done. We still haven't gotten the official report on the sleep study--the doctor who ordered it at our request, and who said up front that we weren't going to see anything out of the ordinary on it, found exactly what he had predetermined to find: nothing out of the ordinary. However, he has been unwilling to sign his name to that report and release it to me or to the other doctors at this time. So, the pediatric endocrinologist went next door and asked to see his notes and the reader's summary prior to our appointment.

Her interpretation was really valuable. While nothing on the study was outside of the broad range of what's called normal, it was clear that Jane has more frequent periods of light sleep than the average child. Not enough to signal an alarm, but enough to put together with her other issues to suggest that deeper, more consistent sleep could improve her other issues.

We've been addressing the suspected sleep problem since July 24 with bedtime doses of melatonin and Benadryl. And since that time, she has had no headaches, no vomiting, and only one difficult school day. Additionally, she has grown 1.9 cm. If that rate of growth were to keep up for a year, then she would actually achieve a growth rate that falls in the "normal" range for the first time in three years.

All this seems to fit together well enough to suggest we're on the right track. So the recommendation now is to just keep doing what we're doing for the next four months and then check back again. If she is still growing and having no headaches or vomiting, then we are to try a placebo for the bedtime meds for one month. If any symptoms return, the endocrinologist says she would accept that as proof that her problems are sleep related.

Additionally, Jane had her second bone-age evaluation done this summer, and the results this time did suggest a small growth delay in bone development. Though that sounds bad, it's actually very good news. It means that it is very likely that there will be a growth spurt later in life, so she may be able to catch up an inch or so, but it will most likely happen a year or more later than her peers. Again, very encouraging news.

She'll always be petite, and there is nothing in the world wrong with that. For now we are just so very thankful to be managing her headaches and other sickness and to see her doing so well in her schoolwork. We are thankful for all of you who have prayed for her and expressed concern, given encouragement and resources, and helped me to stay focused on what's best for her. In particular, I am thankful for concerned doctor/nurse friends (Rob and Bonnie--where would we be without your input and medical sleuthing skills?) who gave me the courage to take additional information and theories to our pediatrician and specialist to give them a nudge in what seems to be the right direction!

Good news all around. We are blessed!

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