Back to Children's

Today at E's endocrinologist appointment, they finally gave us the results of her genetic testing which showed no genetic abnormality causing her HI (this is a good thing).  The doctor thinks she might have transient HI which means it is temporary (caused by some sort of stress at birth) and could eventually go away.   In order to figure out more about her type of HI, the doctor wants to hospitalize E again to wean her off the medicine all the while closely monitoring her blood sugars.  Then when she's completely off the medicine, they would conduct a 12 hour fast to see how she performs.  My understanding of this process is basically to see if she still needs the medicine to maintain good blood sugars.  Sad she has to go back to the hospital, but it's the safest place to take her off the medicine.  She would not be in the NICU again rather she will be on the endocrinology floor where fasts like this take place quite often and the nurses are familiar with the procedure.

Overall the doctor is very happy with her blood sugar numbers. Instead of delaying things by continuing to give her medicine that she eventually outgrows in a few months due to weight gain, they want to investigate her condition further at this time with the hospitalization.  She also slept last night for five hours which made the doctor nervous since she hadn't eaten for 5 hours, but that is something a baby her age will start doing.  I did test her sugars after that 5 hour stretch and it was a 101 so it was fine.

I go back to work next week Friday, Sept 30th so the doctor is trying to get this process in and completed before I go back to work.  We don't have confirmed days yet but the average stay for this is around three days.

The only side effect E has experienced from the  medicine is the darkness of her hair and hair growth.  The doctor told us this would happen but it's pretty noticeable for a little baby which you can kind of see in the picture below.  She has it on her forehead, sides of her cheeks and a bit on her arms and legs.  Plus the doctor said the darkness of the hair on her head could also be effected by the medicine and could change if she ends up off the medicine.  The process of hair loss could take up to 5 months once she is weaned off diazoxide.  Thankfully this is the only side effect she's encountered since the other possible side effects can be pretty nasty.