Month: August 2009

What I find so interesting about Type 1 diabetes is that the only thing that is predictable about it is that it is truly unpredictable.

I check my son’s sugar a minimum of 10 times a day.  Before each check I do a mini run down of the day, last time he ate, last bolus of insulin, amount of activity and then I try to quickly determine the number that is going to be on the meter. If it has been a while since his last meal and last bolus I expect to see a number within range. That would mean to me that his insulin to carb ratio brought him into range after eating and his basal setting was correct thereby  keeping  him in range once he got there. Those are the numbers we like to see, predictably in range.

It’s the other numbers that floor me. If it has been a few hours since his last meal and insulin bolus and I check his sugar and he comes up 290. That is entirely too high for anytime, but especially when there is no more active insulin in his body. Unpredictably out of range.

Then there are the numbers that completely throw me for a loop. After an ordinary dinner of pasta and an ordinary bedtime snack of pudding cup, I  check my son two hours after he has received his last bolus and what I expect to see is a number around 160, but then in such the unpredictable fashion of diabetes, I may see a 32. Then I am sent scrambling through the house grabbing his fast acting drink and whispering him in his slumber to wake him up ever so slightly so that he will drink his liquid sugar and not slip into a seizure.

There is no resting on your laurels when it comes to Type 1 diabetes. At any given moment of anytime of day I can predict my son’s sugar level, and there is an equal chance that I will be right or wrong. I may be right on the money and predict what I hope to see, and then I can be so completely wrong that my son’s number will require immediate intervention of some sort. It is amazing.

I think this is one of the main reasons why Type 1 diabetes is so scary from a mom’s perspective. As my baby sleeps at night, I can only hope that all the settings in his pump are correct and they keep him as close to range as possible. In all honesty, I cannot rely on the predictability of Type 1 diabetes to know that his number will remain in range and keep him safe all night.

It is the certainty of this unpredictability that keeps me checking my son through the night when I am supposed to be sleeping. I need to stay one step ahead of the irrational behavior of his blood sugars to keep him safe and healthy.

I know the unpredictability will slow down as he finishes growing. Somewhere around 21. But until then it’s the certainty of the unpredictability that keeps me going…oh and very strong coffee.

Parents of children with Type 1 diabetes know the importance of logging blood glucose numbers. Many people outside of the world of Type 1 diabetes may not even realize what logging entails and the reasons behind logging.

While the specifics of logging blood glucose numbers is different for every person, I can explain what I do and why. I have a sheet of 8 days that is broken up into every single hour for 24 hours. The numbers go straight across the page from 12:00 am to 11:00 pm. Underneath each number is a column with 5 boxes. Each box represent the following areas: carbs, correction, bolus,  ketones and one empty box for small notes.

So every time I check my son’s sugar I write the number in the corresponding box. Then I simply place a check in any other appropriate box. If he is just eating carbs for a low, I check the carb box. If he is getting a correction for a high number, I check the correction box. If he is getting insulin to cover the carbs, I check the carb and the bolus box. And so forth and so on. For the ketone box, I only check it if ketones were checked for a reason and in that case I put a negative sign if there were no ketones, or I put the number on the ketone meter if he did indeed have ketones.

Why do I do this you may ask yourself. It certainly isn’t fun, but what part of having diabetes is fun. I choose to log my son’s numbers so that I can see the big picture of his diabetes. When I check his sugar and write the number down, while that one number may not mean much to me at the time, the big picture of numbers is what matters.

For instance, if every day before lunch my son’s number is on the higher side I will be able to see that by reviewing my logs. If I see a high number the same time every day for 2 or 3 days, I know that a change in his pump settings and insulin intake needs to be made. If I didn’t log the numbers I wouldn’t see any patterns and all the changes would be made like a shot in the dark.

It’s also for special events. My son loves to go to a bouncy place in town. Every time we go to the bouncy place I noticed that he was going low 4 hours after we were home. So the next time we went to the bouncy place I was prepared to catch the low because I had reviewed my logs from previous visits. I was able to give an uncovered carb snack to ward off the possible low. Didn’t work exactly like I had planned and my son still went low 4 hours after bouncing, but not as low as the previous times. I logged all of this, the free carbs and the glucose numbers, and I was able to be more prepared for the next time.

Logging is boring, yes, mind numbingly boring but necessary. It gives me insight to a disease which by all other accounts tries is hardest to keep me in the dark. While logging by no means puts me in control of diabetes, it does allow me the opportunity to predict a little to make some changes that helps keep my son’s glucose levels in some semblance of normal.

And that’s all I want, as much normal for my son as I can get him.

Many parents of children living with Type 1 Diabetes seek out and receive a 504 Plan for their child to ensure the child treated exactly like everyone else regardless of his diabetes.

According to the Office of Civil Rights a 504 Plan is as follows:

The Section 504 regulations require a school district to provide a “free appropriate public education” (FAPE) to each qualified student with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the disability. Under Section 504, FAPE consists of the provision of regular or special education and related aids and services designed to meet the student’s individual educational needs as adequately as the needs of non-disabled students are met.

While I am the first parent not to use the word disability and diabetes in the same sentence, I am sure of the fact that my son’s diabetes, IF not cared for properly, can impede on his ability learn. It is because of this, that I too am seeking out a 504 Plan for my son as he enters first grade.

I do not expect anything above and beyond the care that I provide in our home. Since diagnosis I have become painfully aware of how high and low blood sugars can affect my son’s ability to think clearly. Whether it is a physical symptom such as a headache or nausea from a high number to slurring his words from a low number, to the more emotional affects such as anger caused by a high number to weepy and overwhelmed that accompanies some lows I have learned to check his sugar first before making a plan of action. If his sugar is too high or too low, I know that I must make an adjustment for him, either insulin or sugar, to help him feel better and think more clearly. This is what I am asking for in my 504.

I am requesting that his sugar be tested before major tests so that he is afforded the same opportunity as every other child in that room that has a working pancreas. While testing his sugar does not make him smarter, it definitely allows him to perform his absolute best on the test if his sugar is in range at the beginning of the test.

In our home we carefully count my son’s carbs to ensure that he is getting the proper amount of insulin for the food he is eating to keep his sugar as level as possible. I am asking that this be done in school too. If his carb intake improperly matches his insulin intake he runs the risk of high sugars or low sugars which can lead to serious complications such as seizure or coma.

In our home we monitor my son’s sugar when he is playing outside or swimming. Excessive exercise can rapidly drop blood sugar, so we test to ensure that he stays in range. We treat with a small snack if we feel the number warrants it. I am asking that the school do the same. Before physical education a test can determine whether my son needs a snack to perform at his best in the class. A test and a snack, that’s all I ask.

I am not asking for much when I ask for this 504 Plan for my son. In a nutshell, or nut-free shell for my friends with allergies, I am asking that my son be cared for in the same manner at school that he is cared for at home.

Don’t all children deserve at least that when they go to school? I know my child does.