T spent three days in the hospital at the beginning of this week. We had him go through a 36 hour fast under medical supervision in order to figure out why he keeps having low blood sugars.
The test went alright. He didn’t drop too badly. They monitored sugars and ketones. They wanted him to get down below 50 so that they could do more blood work. Instead he got high ketones which meant that they had to stop the testing before he reached 50. He was at 65 which is low but not dangerously low. But his ketones were at 3.3 when they stopped him and somewhere in the 4s when they finally were able to get the blood drawn an hour later.
The poor kid! He has veins like mine that don’t like to be available for blood draws. They kept seeing good veins but couldn’t get the blood out of them. It was so reminiscent, holding him, and having several nurses and residents trying to get blood out of him while he screamed, to what I went through a year ago with S when he was diagnosed with diabetes. I had tears streaming down my face because I couldn’t take it (Aaron had S at this time). But they finally were able to get all the blood that they needed.
We are still waiting results. But for now he has been diagnosed with ketotic hypoglycemia. Essentially he gets high ketones when he has low blood sugars. This means that when he is sick he can get in a very dangerous cycle. Let me explain a little.
All of us get ketones. When we don’t eat ketones are our body’s way of protecting ourselves. We start to eat our own fat and that causes ketones to be present. In small amounts this is not an issue. As a healthy individual it is possible to flush those ketones out of our bodies with insulin before it becomes an issue.
In a diabetic ketones are dangerous because the body is unable to flush them out without insulin. That means that we have to inject insulin into our diabetics in order to aid in the process of removing the ketones before they build up.
With hypoglycemia and ketones the insulin is already doing its job but it is not clearing the ketones. High ketones can lead to very dangerous consequences. The biggest issue though is vomiting. If a child like T has low blood sugars, can’t keep anything down, and has ketones present then the cycle keeps going. Ketones get higher, sugars get lower, and vomiting continues to make the process get worse. Its hard to understand, but essentially, the vomiting of the illness or the ketones makes the child extremely ill, landing them in the ER.
We have already gone through this twice with S. Low blood sugars, high ketones, vomiting and an inability to get him out of the cycle. Now we get to fight it with T.
So basically stomach viruses are very dangerous for my kiddos. Deadly serious. If they get a stomach virus we are more than likely going to end up in the hospital until they are clear of it. They will need to be hooked up to an iv to get fluids to help them get back on the right track and clear their system of the ketones, get their sugars back on track, and get them feeling better.
But its good to know this, and to be prepared. (So forgive me if I end up canceling on you if your kid is ill. Its nothing personal. I just have to be overly cautious.)
There is blood work still pending to see if anything else is going on. And we are keeping an eye on sugars because there is a suspicion that T is developing diabetes.
And sure enough the last two days his sugars have been climbing. Not dangerously high, but much higher than ever before. Its all a waiting game at this point.
But S would be thrilled it T got diabetes. He desperately wants his brother to have a pump like him. As a matter of fact, he is convinced that we were in the hospital because T has what he has and that we are going to go back sometime soon to get him a pump as well. Poor kid! He feels so alone in his diabetes.
Anyway, I don’t share this to be negative. I just share because it is what we are dealing with now. Also to give information to anyone who isn’t aware that this could be an issue. Keep in mind that blood sugars below 50 whether diabetic or not are very dangerous and can lead to seizures and a variety of other complications. They should not be ignored!
I am NOT a doctor. I don’t claim to know everything or to understand all of this. But before I was a d-mom, I knew very little. I am hoping that by spreading knowledge it will help other parents and family members to be sensitive to people who are dealing with sugar issues (high or low), and also to be weary with their own child when symptoms are present.
DON’T EVER IGNORE SYMPTOMS OF HIGH OR LOW BLOOD SUGARS.
If you think there is a problem, please get help immediately. Better to be overly cautious then to put your child in danger. As a mother who almost lost her child to this disease I pray that you NEVER EVER EVER have to go through that.
So for now, T gets to have his sugars checked any time he is ill, acting unusual, and first thing after he wakes up. Not too often, but often enough that we will hopefully be able to watch his trends and catch anything abnormal. Hopefully the blood results will give us some more answers and pinpoint which direction we are headed.
Unfortunately they still know so little about what causes diabetes or how it starts that we really have no way of either preventing it, prolonging it happening, or even knowing when it might happen (if it is going to happen). All we can do is be diligent and hope to catch it before it lands him in the ICU, if he does go from hypoglycemia to diabetes.
So that’s where we are right now. With one child’s pancreas not making insulin and another child’s pancreas making too much. How I hope and pray that baby number 3 comes out with a pancreas that is fully functioning and continues to function for all of his life!