Three Days In A Row

Macayla's day mirrored yesterday. She started with a grand mal at 6 a.m. along with a bunch small seizures. She got diastat but did not react. She continued to be agitated all morning. We took her to see the endocrinologist to day to see what, if anything, could be done to lessen puberty's painful effects for her. Throughout lunch and the waiting room, Macayla kept having seizure-like actions and it became difficult to determine if they were petit mal or grand mal seizures. Her grand mal seizures do not usually cause massive convulsions like they would in others. So, she got another dose of diastat but it still did not knock her out. Just like yesterday, she had a rough morning but then on her own she settled down in the afternoon. I'm hoping she's done for the week.

I will post more on the endocrinology visit on the Uncommon Needs blog later. I have some research to do for that, but the gist is that Macayla is at a Tanner 4 according to the doctor. She could start menses sometime between two months to a year from now. Of course this brings with it discomfort, cramping and pain. None of which Macayla will be able to communicate with us. So there is a drug called Lupron that can be used to stop her periods completely. It is an injection given every three months according to the doctor. He also advised us that long-term use causes osteoporosis and is not advisable in most children. But Macayla's life span is short enough that this should not be a problem for her. We are going to research some articles the doctor recommended to us and then decide. He said that if we choose to use the medication, then we would be advised to wait until the first menses occurs. We are also aware of the ethical concerns of this approach. That is why we want to research and pray over it. Unfortunately, the medical community has not done much to look into these issues to help families make these decisions. So, research it is.