Hyperinsulinism

Some days feel unmanageable. Not that I can't get through the day. Getting through each day isn't a problem. It's the anxiety, the not knowing, the not knowing how long it's going to go on like this. So much anxiety and worry. My son, Calvin, one of the most adorable toddlers you will ever meet, has hyperinsulinism. It's extremely rare. There's only one hospital in the country that deals with his condition, Children's Hospital of Philadelphia, or CHOP. He overproduces insulin and that causes his blood sugar to drop. I check his blood sugar 7-10 times per day and give him bolus feeds through his g-tube 5 or 6 times per day. Needing to have so much equipment and having to do frequent checks has impacted our lives. We don't travel far from home. It takes me at least an hour to get ready to go anywhere. Before Calvin had his seizure I was contemplating going back to work, now I worry about Calvin's blood sugar and I won't even consider putting him in daycare. There are only a few people in my family who have enough know how to be able to take care of Calvin for more than a couple of hours. But like I was started out saying, taking care of Calvin is intense. I want it to get easier. His pancreas should mature and stop overproducing insulin if we can just wait for him to grow. How long will that be? Will it get easier when he can talk and communicate better with us? He's not talking yet. He has a speech delay. He is otherwise developmentally on target and similar to other 2 year olds. Will it get easier when he can take over some of the responsibility for his own care? Today was one of those days where I spent the day feeling like I can't wait for it to get easier. And then today my wife (Yes, I'm a lesbian. We'll talk about that in other posts.) reminded me that we had been planning to leave CHOP on a continuous dextrose pump. There were even more intense options and lengths that we were (and still are) willing to go to in order to save our son's pancreas. There are very few options for controlling Calvin's insulin production. Drug therapy didn't work. Removing nearly all of his pancreas was/is an option that we will try to avoid at all costs. Just trying to exhaust all possibilities we tried a blood product infusion and steroids and it has worked for us so far. However, steroids aren't without their cost. The long term effects of steroids are no good so the wife and I have been trying to wean him off of them. I think this is why his sugars have been lower lately and hence the increase in my anxiety and worry.