Month: October 2009

As a mom I worry about my children getting sick. We take precautions when we are out and about. We wash our hands and use hand sanitizer at the drop of a hat. My daughter uses so much soap when she washes her hands that I am afraid she’ll slip down the drain. I wish that neither of my children would ever catch a cold or virus, but that’s not going to happen. And it’s when my son with Type 1 diabetes gets a virus or a cold that the ordinary illness becomes not so ordinary.

When Type 1 diabetes is thrown into the loop regular occurrences such as colds and virus become so much more. It becomes ketones and erratic blood sugars and lots and lots and lots of finger sticks. Sure we still have to watch the fever and treat the symptoms of stuffy noses and coughs, but it becomes so much more than that.

Ketones can kill, plain and simple.

In people with Type 1 diabetes ketones are mainly caused by lack of insulin. Ketones are when your body body burns stored fat for energy. In a nutshell, ketones are not good, EVER. Most times you can keep ketones away by providing the proper amount of insulin. But then of course, in times of illness, all bets are off. Ketones can appear at the first sign of illness. So along with fighting stuffy noses, and fever, people with Type 1 diabetes need to fight ketones as well. That is very very hard to do. It’s like fighting 2 completely different battles within the same body.

The way to get rid of ketones is to give more insulin. Most times they are not impossible to get rid of at home, but many times especially when they are stubbornly attached to an illness they have to be dealt with in the hospital. So it’s not the stuffy nose or fever that requires the trip to the ER, it’s the ketones. Remember ketones can kill, let’s not forget that.

Then there are the extra finger sticks. Don’t get me started. My boy already endures 10 or more finger sticks a day just to stay healthy on a regular day. Throw in an illness that causes high, erratic blood sugars and ketones and the finger sticks become exponential. During an illness it is not unheard of to check every hour on the hour. Do the math, that’s 24 finger sticks in one day.

My son only has 10 fingers just like most every other six year old.  Twenty four finger sticks in one day, plain and simple, hurt. They hurt one the actual finger and they hurt on the inside.Think about the last time you had the flu, or head cold. Now think if every hour on the hour someone was going to stab your finger with a needle just enough to make you bleed. Wears on you. Inside and out.

Why check so much you may be asking yourself. We check because it’s the only way to know what is going on inside my son’s body along with all the symptoms on the outside. Tylenol can help a fever, but it does nothing for high blood sugars, believe me I wish it would. The only way to tell if more insulin is needed is to to a finger stick. Insulin helps lower the blood sugar levels and helps rid the body of those ketones. Finger sticks are the window to my son’s blood.

And plain and simple during a time of ordinary illness it is not unheard of to see numbers of 300 or higher. All in the day in the life of a child with Type 1 diabetes when he is hit with the sniffles.

So the next time something seems ordinary to you take a moment to think how lucky you are. Ordinary is just that, ordinary, and that’s not so bad.

As a mom of a boy living with Type 1 diabetes there are times when I fear the most for his safety and life. Funny enough they are probably not when you think. They are not when he’s riding his bike, or at school, or even when he’s trying to be a superhero and fly.

It is when he is sleeping. It is when he is quiet. The dark of night and the silence of quiet time fill of pit of fear in my stomach that can only be explained by using the word terror.

When my son sleeps I already check his sugar one or two times a night. Usually I check around 2:00 am and sometimes at 5:00am depending on the 2:00am number.  Then I am usually good until his usual wake up time of 7:00am. It is on the weekends, though, when he is snuggled up tight with his dad and his body wants to sleep late that cause me the most anxiety.

I don’t know if my son is sleeping late because he is tired and cozy and loving every minute of his rest, or if he has dropped so low that his body is shutting down and he is unable to wake up even if he tried. I know I can go in there and test his sugar and sometimes I do just that. Sometimes I can work myself up into such a fear that I have no choice but to go in and check. That usually wakes him up and then I feel bad. I feel bad for disturbing him, I feel bad for overreacting, I feel bad he has to live with this awful disease.

Wow, what a way to start a morning.

Then there are the other times when my son is quietly watching TV in the downstairs room. While I relish in the quiet for a few minutes, after a moment or two I start to get nervous. I’ll nonchalantly call downstairs, “Buddy, whatcha watching?” No answer. “Hey buddy, whatcha doin’?” No answer. Until finally I am screaming for the whole neighborhood to hear, “Answer me!” and then I finally get, “I’m watching Johnny Test.”

Unfair, yes, to both of us. I should be happy when my extremely active and creative six year old wants some rare quiet time. I should be able to be at peace when he is calmly watching TV like most kids. Yet, that is one other thing that Type 1 diabetes has robbed me of, peace in the quiet.

Unfair to my little boy, because what six year old doesn’t want to sleep late and watch TV without his mom coming in and pricking his finger or screaming for him to answer.

Sleeping late and quiet time should not bring up a level of terror in me equivalent to a house fire or home invasion, but unfortunately Type 1 diabetes has done that to me. I fear times in my home that most people find the most relaxing.

I already know the answer to my original question. Will the fear go away? Not as long as Type 1 diabetes is still around.

Every parent of a child with Type 1 diabetes knows what a pediatric endocrinologist is AFTER their child is diagnosed. Before diagnosis the extent of my knowledge of doctors was dentist, OB/gyn, pediatrician and general practitioner.

I will never forget when I diagnosed my son by telling the pediatrician to check the sugar in his urine, she came back to tell me I was going to have to find a pediatric endocrinologist. She could have said, you have to find a Pachycephalosaurus, a type of dinosaur, as I knew the same about both. Absolutely nothing!

Now over two years into this, I am very aware of what a pediatric endocrinologist is and does. We are so familiar with the role of a pediatric endocrinologist that we have dropped the pediatric altogether and have subsequently chopped endocrinologist down to simply endo.

Endo is as common a word in our house as is school, or milk, or toothbrush. The endo is part of our diabetes team. While we only see the endo every few months for check ups, they are an integral part of our diabetes life. While I rarely (rather never) rely our on endo for the day to day decisions I do expect him to see eye to eye with me when he does make decisions regarding my son.

I need to know that our endo sees my son for what he is, a six year old boy with Type 1 diabetes and not just a diabetic. I need to know that our endo will help my son achieve his goals with regards to his diabetes, just as I do. I need to trust that my son’s endo will be there in my place when my son is 16 and wants no part of what his mom has to say to him.

After two years into this I am also aware that not all endos are the same. There are good endos and bad endos. The good ones support, listen, assist, and challenge. The bad ones do exactly the opposite. They tear down, ignore, judge and belittle. The hardest part is it takes a few visits to separate the good from the bad. A few visits with the wrong endo can do damage to both the health of the child with diabetes and the esteem of the main caregiver. Two things that must be nurtured to ensure the team is ready for the long haul of dealing with Type 1 diabetes.

In essence, the endo can make or break the team.

A good endo can help provide the building blocks for good decision making and a long life of successes of living with Type 1 diabetes, and a bad endo, well a bad endo can kill you.