So Orlaith has been off the Diazoxide (a medicine which reduces the insulin production in the beta cells) for about 13/14 weeks now and I'm beginning to notice the lack of body hair... Finally!
I know it could take a while but it's such a horrible side effect for any baby/child/teen to go through so I'm pleased it's beginning to fall out. Hair growth is a big side effect of this medication and of course, the most dreaded too! Orlaith wasn't like a monkey or anything like that but she did sport hair on her forehead, upper and lower back and on her legs too. I know it can cause confidence issues in the older patients, especially those entering their teen years so I'm pleased Orlaith was distinguished as diazoxide-unresponsive sooner rather than later.
Below I've put together some of the obvious forehead hair pictures from birth until now (well narrowed them down so you can see):
Orlaith is diazoxide-unresponsive - this means pretty much that, diazoxide did not have any effect on her. On admittance to GOSH, Orlaith required up to 20% dextrose (this increased to 50% and a 30% top up from that, so effectively 80%!?) with confirmed paternal heterozygous mutation in the ABCC8 gene and her PET scan indicated diffuse congenital hyperinsulinism.
After reading up on and researching as much as I can on hyperinsulinism - I'm pretty much obsessed - here's some more information which completely makes sense to me; it's interesting to read that opposed to the normal divide of focal/diffuse in HI; a different way of looking at the condition is diazoxide-responsive and diazoxide-unresponsive. In most cases, diazoxide-responsive patients tend to be diffuse but have no known genetic cause. However, the majority of diazoxide-unresponsive patients are focal but quite a compelling amount are diffuse and a significant amount have a genetic cause. Most cases of congenital hyperinsulinism are transient - a patient is diagnosed by the amount of dextrose their bodies require. Then of course the stages of diagnosis by blood tests and PET scan if required. If patients respond to diazoxide then, from what I've experienced, they rarely go on to have the scan and can remain good levels of normoglycemia. I've also read up that there are 7 known genes to cause this condition... it's interesting to see where Orlaith fits in and how much this makes sense of her condition.
Is your child on diazoxide? How are you finding it?
Hi Limara... My daughter is on diazoxide. She almost 4 months old. Doctors think she has stress-induced HI... meaning it was caused by the trauma of her birth (she was premature and very sick) and they expect it to go away within a year. The diazoxide does seem to work as long as we continue to feed her every 3-4 hours. She's been on the diazoxide for about 7 weeks. Her eyebrows are out of control and her forehead is beginning to grow hair. It's kind of stressing me out. I just feel like it's going to get so much worse and look really weird. Do you have any suggestions?
ReplyDeleteHi Heather! What hospital/team is your daughter under?
DeleteI hope it does become transient for you within a year like they have already suggested & I'm glad she is diazoxide responsive, there is nothing worse than trialling medication and all the stresses that it can bring. My daughter still has hair on her forehead and other areas on the body, which is still falling out - it won't get to out of control but I can understand why it would stress you out... It may look different to others and weird as it's new to you but it is what your daughter needs for her to remain well and keep her blood sugar levels where they need to be. I never let the hair growth get me down or stress me out... I saw it as my child needed this medicine to remain stable and that is all that mattered. Hair growth is such a scary thought, especially as a side effect but it won't grow out of control; my daughter was on it for around 14 weeks, and the above pictures show the progression throughout that time so I hope that it helps to give your some understanding of another child that was on diazoxide; although every child is different. Please don't stress yourself out about it, it won't grow out of control. I wish your daughter all the best in her journey through HI...My email is limarabanks@gmail.com, please feel free to email me I if there I is anything I can ever help you with or if you ever need some support - I find talking to someone who is going through the same thing is a huge help
Limara x
Dear Limara!
ReplyDeleteI'm sorry to bother you, but unfortunately there is no one to turn to the problem. Unfortunately I do not speak English (but no other chance.
I have a 4-month-old son, who hyperinsulinemic since the birth, saying the doctor. But unfortunately they are not familiar with this disease. All over the country we could not find even one of these sick children. No one to turn to our questions. We are taking a medicine containing diazoxide, the name proglycem. The remedy can not be anything. We only see the side effects: ((too much hair on the hands, feet, forehead) I have questions for us, but there is no one to ask.
Your little daughter is already one year old, you know what to do. Can I ask you a few questions?
Please!
Hi Marianna. I would be happy to help with any questions you may have. Please feel free to email me directly at limarabanks@gmail.com
DeleteLimara