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No ‘getting off’ insulin for us.

A person with Type 1 diabetes can never ‘get off’ or stop using insulin regardless of exercise and diet.

A few months after my son was diagnosed we were at a family party. I was really not used to him having Type 1, so I was really unprepared to have an educated conversation about it. The farthest any conversation had gotten up until this point since our diagnosis consisted of, “How are you?” and “How is your son?” No one had ever asked any questions that I might not have known the answer, until this party two months after diagnosis.

A friend of my cousin who was a nurse started to ask me what I was feeding my son for breakfast. I told her pancakes, and stuff like that. I could tell by the look on her face that she disapproved. In an attempt to understand Type 1 diabetes better, I engaged in what I thought was going to be an enlightening conversation. Well, it was enlightening alright, but for all the wrong reasons.

She started to yell at me, yes yell at me, that I would never be able to get my son off insulin if I continued to feed him carbs such as pancakes. I must have looked confused, I never really thought that I had to get him off insulin, so she continued. She said I needed to change his diet, cut out all carbs, so that I could get him off insulin once and for all.

I was so stunned and angry that I couldn’t even formulate a sentence. I was not angry at her (yet) I was angry at the hospital nursing staff because they had led me to believe that he needed insulin and carbs to live and grow. I felt like I had been misled.

Well, I came home, after crying the whole hour ride home and immediately posted what had happened on www.type1parents.org. I cried and cried as I typed asking the parents that had become my support system exactly what I was doing wrong, should I be trying to get my son off insulin as this person had suggested (yelled) to me.

Do you know what they wrote back to me? A very simple statement, that still sticks in my thoughts today. They wrote, “Insulin is like air to your son, without it he will die.” Seriously, he will die without it. Could you imagine the consequences if I had believed this woman, and started to feed my 4 year old a carb free diet so that I could try to get him off insulin. First he would stop growing from lack of carbs, which give the body energy, then he would eventually die from lack of insulin.

Everyone needs insulin to live. People without Type 1 diabetes don’t have to think one second if their body is producing insulin. People without Type 1 have a steady stream of insulin flowing through their body keeping their blood sugar level automtatically. When the pancreas works, by providing insulin, it’s a very handy organ. The brain is even smart enough to tell a person’s pancreas without diabetes that a piece of very rich creamy chocolate cake is coming down the pipe soon, so insulin production is increased even before the first bite is swallowed to ensure the blood glucose levels remain consistent. Very nice system, when it works.

People with Type 1 diabetes don’t have the luxury of a working pancreas that puts out insulin. There is no insulin being produced…ever. Not for meals, and not for just simple living. Because of this people with Type 1 need to rely on two methods of insulin delivery every day. One type that gets taken every 24 hours is called a BASAL insulin. It takes the place of the BASE insulin that everyone else has coursing through their blood without any effort on their part. It keeps their blood glucose steady during times when they are not eating.

Now, the second method of insulin delivery that must be administered with every carb ingested is called the fast acting insulin, or BOLUS. This bolus (fast acting insulin) can be taken as many times a day as the person eats carbs. Some people take as few as 3 shots a day of fast acting, and some people can take as many as 10 shots a day. Let me explain. A four year old boy, as my son was at diagnosis, asks for milk. He has to get a shot to cover that milk. Then he asks for lunch, maybe a PB & J sandwich and some carrots. He has to get a shot to cover the carbs in the jelly and the bread, and even the carrots. Do you see where this is going? Think about another 4 or 5 year old that you may know. Eating and growing go hand in hand. Everytime my son eats, he has to get insulin. A bolus of insulin is also given if the blood glucose goes higher than the appropriate range for that particular person.

So, ‘getting off’ insulin is by no means any option for people with Type 1 diabetes. They have the basal insulin to keep them steady and the bolus of fast acting to cover their carbs when they eat and to treat high blood glucose. While a healty diet and exercise are wonderful ways of life, they will not cure Type 1 diabetes, and they will never replace the insulin that their bodies no longer make.

I look forward to the next family party when I may see this person again. Now I am ready to have that educated conversation. Except this time, it would be me doing the educating.

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Parenting.

Parenting is tough. When you are a parent of a child with Type 1 diabetes, there is the fine line you must not cross where you switch from parenting your child to parenting the diabetes.

Parenting is tough. Diabetes is tough. Put them together and sometimes you get a combustible combination that with the proper fuel can explode in your face.

Let me explain. Most days in our home we just truck along life every other family. Of course we have the added dimension of counting carbs, checking blood sugar, giving insulin, reviewing blood glucose logs, but all in all, we are a pretty regular family who does pretty regular things.  But then there are the moments in our days that define our relationship as parent/child/Type 1 diabetes.

When my son sits down to eat, I immediately check his sugar. Then before giving anyone their food, I weigh the carbs on my son’s plate. Immediately after I give him his food, I grab his pump remote and bolus (give insulin) for about 1/2 of the carbs on his plate. This is a decision that I have made for our family and it seems to work. Let me explain why I have chosen to do this and why I think it ensures that I am parenting my child and not the diabetes.

If my son starts to eat his meal, and then halfway through decides that he would prefer more meat (zero carbs=no insulin) and less of the carb on his plate, by only giving 1/2 of his insulin up front I am able to allow this to happen. As long as my son eats a good portion of his dinner and he is full, I am pleased.  I can remain parent of child, and not parent of diabetes.

On the other hand, if I were to give all of his insulin before the meal, for every carb on his plate, he would not be allowed to stop eating any portion of anything. He would have to finish every carb because if he doesn’t then he will go low, and probably seriously low because he gets insulin for and eats about 60 carbs per dinner.  So then I have a almost 6 year old full of insulin, not wanting to finish the carb portion of his dinner. This could be disastrous.

So I would have to try to get him to eat the carbs, and I would have to think of another way to cover the insulin that is already working in his body. I could offer milk, juice, skittles, bread, anything that has the equivalent amount of carbs that I already bolused for. I could even demand that he finish all the food on his plate, but that is not my parenting style. STOP. This is what I call parenting the diabetes.  Because my son would have received all the insulin up front, my main concern with this scenario would be to cover the insulin, not whether my son, who is a fantastic eater, was satiated. I would worry about the diabetes, not the boy.

Parenting the diabetes does not only present itself when eating. It rears it’s head with discipline too. When my son is acting out of character: rude, whiny, whatever, it is my first and foremost responsibility to find out his blood sugar. I have no choice in that matter. However, when the meter beeps with a number, I then have a choice to parent the child or the diabetes. If the number is low, treat, discuss behavior and move on. If the number is on target, deal with the behavior immediately. Delaying any response to the behavior because you had to stop time and check the sugar would be just parenting the diabetes. Same goes for if the number is high, treat accordingly, calm the situation and move on.

Some parents of children with Type 1 diabetes brush the inappropriate behavior off as a side effect of a high or low number. I choose not to do this. If my son displays inappropriate behavior because of high or low blood sugar, he is still removed from the situation until he is feeling himself again. I certainly don’t punish for behaviors related to blood sugar, but I also don’t let it continue. I don’t parent the diabetes and let him act anyway he wants and use his number as an excuse.

Now why I am writing about this tonight. Not to shout out other parent’s of children with Type 1 to say they are doing it wrong, but to say, this is HARD. This is a difficult battle that we deal with everyday. We have to remain true to our own parenting style without letting diabetes rule the roost. Dealing with the attitudes and behaviors associated with high or low blood sugar is like dealing with a toddler. You have to stay cool, calm and collected. Keep your wits, and handle the situation. It is not fun…it is parenting.