Day: June 23, 2009

People with Type 1 diabetes make changes to their insulin amounts as their needs change. You only get one chance a day to make a specific change and then you wait a full 24 hours to get to that ‘time’ again to see if the change worked. You can hear the tick tock of the clock as you wait.

Many people with Type 1 diabetes adjust their insulin needs as they see a pattern of higher or lower numbers over a course of a few days. For instance, if a person with Type 1 diabetes checks their sugar before lunch they will take note of the number. They hope for a number in range, which means their insulin dosage is matching their insulin needs. If that number appears too high for two or three days, the person will look to make an insulin dosage change to something before that meal.

They may need to change their basal rate (background insulin), their bolus ratio (insulin they get for each carb), or their correction factor (insulin they get for a high number). That’s where the change and wait pattern comes in. The waiting pattern can look something like this after the person has decided to make a change:

Day One: Change the breakfast ratio from 1 unit for every 20 carbs (1:20) to 1:18, check sugar before lunch, still to high.
Day Two: Change the breakfast ratio from 1:18 to 1:16, check sugar before lunch, still high, but very close to range.
Day Three: Change the breakfast ratio from 1:16 to 1:14, check sugar before lunch, too low number, well below range.
Day Four: Change breakfast ratio back to 1:16, increase the correction factor (ISF), check before lunch, high again, but close.
Day Five: Keep breakfast ratio at 1:16, return ISF back to original, increase basal 2 hours before lunch, check before lunch, high but in range.
Day Six: Keep the breakfast ratio at 1:16, maintain ISF, increase basal 2 hours before lunch, check before lunch, PERFECT!

SIX DAYS to get to a perfect number before lunch. That’s six separate times that you have to wait 24 hours between each change to test at the exact same time the following day to see how the change worked out. This is a very stressful waiting period especially when the numbers are really out of range.

My son was in range for 5 months after breakfast. He calls from school every day to tell me what his number is 2 hours after his breakfast bolus. For 5 months we were on a roll. Numbers were in range, my son was feeling great. For the last 2 weeks, his 2 hour number has been high. I have been making changes every single day for 2 weeks. Some of the changes did NOTHING, but I can’t do anything about it until the following day. Finally today I saw a reprieve and his numbers are ever so slightly coming down. We are no where near in range at this time of day, but I see a light at the end of this tunnel. The hard part is I cannot get too overzealous and make an extraordinary change, I must go step by step to avoid a serious low from too much insulin.

This is one of the hardest parts of being an external pancreas for my son. I have no idea what change is going to work. I have to methodically tick off change after change, and hopefully by using my knowledge I will eventually hit upon the change that works.

It is easy to see why Type 1 diabetes can become all consuming, we have no choice. We are not allowed to forget about it for even a minute, especially when we are working on changes. Time is too precious when making changes and forgetting about it won’t help anyone.

Each year more than 15,000 children are diagnosed with diabetes in the U.S. That’s 40 children per day. And to a person with Type 1 diabetes each one of these people are considered ‘family.’ This disease brings people together.

When my son was diagnosed I finally understood what it meant to be truly alone. I had no one. Sure I had my husband, my mom, my dad, my brother, my other baby, but in reality, I had no one. I was completely alone in this world. I was just told my oldest baby would die if I didn’t learn how to give him shots and monitor his food intake. This was like nothing else I had ever known.

I cried alot the first few days after diagnosis. I cried in the shower, I cried while reading every book I could about parenting a preschooler with Type 1 diabetes, I cried instead of sleeping, I cried in church, and I even cried in Shop Rite. I was crying because I was terrified. I was crying because I felt so helpless. I was crying because I was alone.

Then about 10 days after diagnosis, a friend mentioned to me that her neighbor had a little boy who also had Type 1 diabetes, AND she could give me the woman’s number so that I could call her. Now normally, calling strangers was the last thing in the world I am known for. I am not the person that talks to other people on line in the supermarket. I typically stay to myself. But, this day, I couldn’t hang up the phone fast enough to call a woman I have yet to meet just because we had this one major thing in common, we both had little ones with Type 1 diabetes.

I spoke with the woman. She directed me to a wonderful place on the internet called Type 1 Parents, www.type1parents.org, she said it was a place where parent’s of kids with Type 1 go to connect and chat on a bulletin board. I knew what a bulletin board was, I had joined a couple  for my children’s birth years, but this one was specific to Type 1 diabetes. I had never heard of such a thing. I joined immediately.

In one fell swoop, I wasn’t alone. I had 500 people at my fingertips that were going through the exact same thing I was going through. I was no longer alone. Although I had never met these people, and still 2 years later only met a handful in real life, little did I know that these people would become like a family to me.

It happens now in real life too. We went to family camp. It is a camp for kids with diabetes, Camp Nejeda in New Jersey, www.campnejeda.org. We met 13 other families that time at family camp. While I rarely talk to anyone from family camp, one of the families lives in my town. Both of us moms know that although we do not talk on the phone regularly, we are in a different kind of family together, and at any given moment if need be, I will be at her side. I am there for her if she needs supplies, or support, or even a babysitter. I am there for her in a hearbeat, because I know exactly what she is going through.

It happens in real life everywhere, not just at camp. On a cruise I met 2 young ladies ages 12 and 16 that both had Type 1. I knew because I saw their pumps. I walked right up to their mom, introduced myself and my son with Type 1, and we both hugged. I don’t even know this woman’s name or where she lives, but for those 8 days on the cruise we were family. We talked about the kids’ numbers when we saw each other, we offered advice, we hugged some more.

I heard through the town grapevine that there is a little boy just 1 year younger than my son who has been recently diagnosed. I don’t know the mom personally, but I left every possible way to reach me though another mom that knows her. I am aching for her to get in contact with me. Not for me, but for her. I am in an okay place with our diagnosis. To pat us on the back, I think we handle having Type 1 rather well. I want that for this mom and son too.

It is taking all of my strength not to call the mom that I know to see if she passed on my number. I want to make this new mom a member of my family too. I want her to know I am here for her. I can help with supplies, support, friendship, playdates, and most importantly, understanding. I understand to the core how life altering it is to have a child diagnosed with Type 1 diabetes. I want her to know she is not alone, she has a friend waiting for her.