Sunday, November 2, 2014

Having a Child with Type 1 Diabetes

On Good Friday morning in 2010, my oldest child who had been vomiting on and off for weeks, was yelling in pain and on the floor saying his chest hurt, that it was burning. I had previously taken him to our pediatrician at the time who examined him saying he thought he was just getting over a stomach bug but if it got serious we might consider taking him to the ER. I knew in my mother's gut, something was not right though. My husband was home that day, and after a frantic discussion and a call to the local Urgent Care facility getting a recommendation we go straight to Le Bonheur, my husband ran upstairs, scooped him up, and took him to the car to go there. He called me about an hour later and told me he had been diagnosed with Diabetes Type 1. I was in a state of disbelief for several minutes. He reassured me that it could have been so much worse and that the nurse there when seeing my son all the way across the room coming in knew immediately what it was. Our son was in the right place.

When I arrived, they were trying to bring his blood sugar down and he was not allowed to drink water temporarily. I can't remember the exact number but his blood sugar was so high they were unable to read it (normal range is 80-120). He felt so thirsty and was constantly asking for water. He was also a little delirious and did not fully understand the situation. He kept asking for "kroger water" which we later understood he was referring to the huge filtered water jugs he would see at the front of the store. This boy was thirsty! (We later joked about the "kroger water" conversation, when we were able to laugh again) As a mother, it was one of the most difficult times I have been through, telling him he could not have water when he was asking desperately for it. Then it occurred to me, it's Good Friday. One of the many sufferings of Jesus on the cross was unquenchable thirst. I realized that the Lord had allowed us to have a small taste of his passion right there in the hospital room.

Being Educated in Diabetes

We spent the next several days being educated about his disease. We came to realize he had been showing some warning signs before he had reached ketoacidosis which is where he was when we took him to Le Bonheur. The "burning in his chest" he was feeling was from acid building up from ketoacidosis. We also learned that Diabetes Type 1 (his diagnosis) was different than Diabetes Type 2.

Here is a summary of the difference:

"Type 1 diabetes

Type 1 diabetes was formerly called "juvenile diabetes" or "insulin-dependent diabetes," because 70 percent of diagnoses occur before a person reaches the age of 30. However, it can be diagnosed at any age. Only 5 percent to 10 percent of those diagnosed with diabetes have this type. With type 1 diabetes, the pancreas produces little to no insulin.

If you have type 1 diabetes, you'll always need to take insulin, either through injections or through an insulin pump. Insulin, nutrition and activity (exercise) need to be kept in balance.

It's also key that you test your blood sugar level, generally four times a day or more, to avoid extremely high or low blood sugar.

Type 2 diabetes

This type of diabetes was previously called "adult onset diabetes." But according to the Centers for Disease Control and Prevention, type 2 diabetes has been reported among U.S. children and adolescents with increasing frequency over the past 20 years. Ninety percent of those with diabetes have type 2 diabetes. And approximately 80 percent of people with type 2 diabetes are overweight. With type 2 diabetes, your body either resists the effects of insulin or doesn't produce enough insulin to maintain a normal blood sugar level.

Symptoms of Type 2 diabetes, which are generally the same as symptoms of type 1, may come on gradually or not be noticed at all.

A healthy diet and exercise may not be enough to lower your blood sugar level to a satisfactory range. Oral or injectable medication may be needed to control your blood sugar level."

(taken from

The third type is Gestation Diabetes which occurs during pregnancy. I have not had this in any of my pregnancies thankfully.

Some of the warning signs he was showing were constant thirst, nausea and vomiting (in the last few weeks), frequent urination at all times of the day, and he had in the past 6 months or so, been growing a lot thinner. This is a picture of him age 10, right before he was diagnosed:

Looks pretty normal right? Except he was never a skinny nor overweight child. Just healthy. I can remember looking at him when he took his shirt off before bed and thinking "He looks emaciated!" His bones were protruding. But I dismissed it as a growing season, and to him being an active boy. This is a picture of him a few years earlier:

His face looks a little less like a skeleton in comparison to the above. This was actually December 2007.

What was happening as a result of his hyperglycemia (high blood sugar) is the following:

Frequent urination: The kidneys respond to high levels of glucose in the bloodstream by flushing out the extra glucose in urine. A child with diabetes who has hyperglycemia may need to pee more often and in larger volumes.
Extreme thirst: Kids with hyperglycemia who lose a lot of fluid from urinating often will become very thirsty and may drink a lot in an attempt to prevent dehydration.
Weight loss despite increased appetite: Without enough insulin to help the body use glucose, the body breaks down muscle and stored fat in an attempt to provide fuel to hungry cells.
Fatigue: Because the body can't use glucose for energy properly, kids with hyperglycemia may be unusually tired.

( on hyperglycemia)

Coping with the Stress of the Disease

After we became educated on what was causing his disease then we learned how to deal with it. We learned the art of counting carbs, and calculating proper amounts of insulin. I had already been making stuff from scratch because of food sensitivities, now I had to calculate carbs for everything I made, and figure out what a "serving" would be for him. We learned different doses for 2 types of insulin, one for long acting (overall coverage throughout the day) and quick acting for when he was unusually high or eating carbs. We learned how to give him shots. We learned what to do when his blood sugar was below normal, and what to do when he was above normal. We learned about emergency glucagon shots in case he was so low he passed out. After about 6 months we learned about using an insulin pump, and in a sense had to learn everything all over in a new way. We had to set aside normal daily life, schoolwork for this adjustment.

The emotional side of it was daunting. For the first few years at least I would say, it brought tremendous stress on our family life and our marriage. Suddenly my husband and I were summoned as our son's daily nurse/doctor overnight. Neither of us had any past experience of this kind. We lived with the fear of him not waking up in the morning every night. I was reminded of our anxiety as new parents with him, our firstborn, and sneaking in to his bedroom and leaning over just to hear him still breathing. We had to put his diabetic needs before many things, including his siblings sometimes. They had to learn to accept and adjust as well and dealt with the stress in their own way. We cried, freaked out, lost our " cool", and dealt with this newfound stress in many different ways.

We had to watch our little boy, who already had challenges because of ADD and food sensitivities, become even less, normal. When his friends were running to play, he was testing his blood sugar and taking insulin, or waiting on a low blood sugar to come up (as you cannot be active until it does). He was woken up in the middle of the night for testing and insulin doses. His diet had to change even more, trying to maintain better blood sugar levels. We found over time and experience, that dairy products and higher carb foods with sugar were not good choices for him. Eventually we switched to a completely sugar free diet.

Trials Turned to Gold

But in trials are buried treasures, and lessons taught that otherwise go unlearned. I saw my husband be a true hero in my eyes several times and it made me love him all the more. When he was in intensive care in the beginning, my husband stayed with him all night sitting in a chair checking on him, being there for him, though the staff assured him he would be fine. I remember the conversation so vividly. I said "you are going to be so exhausted!" He simply said "I'm not leaving my son." When my son gets sick especially with a fever, and when his blood sugar is high because of illness, he usually vomits. Vomiting can be a scary thing when you are diabetic because it becomes even more challenging to control blood sugars and often you can end up in the ER. On several occasions when my son got sick my husband slept with him in the same room 24 hrs a day until he recovered, vigilant with testing him, making sure he was getting fluids, testing key tones. We learned to forgive each other and allow each other to make mistakes. Like the time I accidentally gave him the wrong type of insulin in the beginning with the other dose, causing him to drop dramatically and have to eat large amounts of carb heavy food and eventually a glucagon shot to bring it back to normal. We have had many late nights, and all nighters, trying to keep him alive, but I have often laid there at night looking at him sleeping peacefully after his blood sugar finally got to normal feeling such a supreme sense of peace and satisfaction myself, and confidence that we were all in God's hands.

A few years later our close friends' son was also diagnosed. My son was able to take theirs "under his wing" so to speak and reach out to him, diabetic brother to diabetic brother. We were able to help them get adjusted some and answer questions. It has brought home to my son and all of us even more that what you put in your mouth matters and affects your health for good or bad.

Each new phase in his life adds a new element of challenge. He is currently a teenager and wants to be "normal" more than ever. He wants to eat without taking insulin, eat what others are eating, and go on with his daily life like everyone else. But until there is a cure, he won't be able to be like everyone else. We struggle with the desire to help him become independent as eventually he will not be living with us, and of course the desire to keep him healthy and alive. It is a daily challenge to make sure we are not asking too much, or too little, and constantly second guessing ourselves.

I believe all things happen for a reason, and that trials are given to us to form us, to give us character, to help us grow in compassion for others and reach out to them when we would otherwise not care. My son may feel weak sometimes and different, but in the long run this trial will make him stronger, will soften his heart for the sufferings of others. I have already seen him capable of things most young boys don't even have to think about. He has been giving himself shots since age 11 or 12? and knows much about his disease. He dealt with the trauma really so much better than his parents. His attitude astounded me. Every challenge life has thrown him, he has remained an upbeat, relatively positive individual. I am also so grateful for the medical community that has helped us through this countless times, the doctors and nurses that have been on the phone with us in the middle of the night or all through the day. May God bless them richly! God has also blessed us through a dear friend we have known since college but who was diagnosed as an adult after we lost touch for a time. We have since reconnected and she has become yet another source of consolation for us and him, making him feel he is not alone, buying a pump skin for him to make him feel special (see below pictures for explanation of "pump skin"), answering my crazy texts about diabetes sometimes, because I still don't know everything there is to know about it, and never will. Here is a picture of him the Christmas after his diagnosis, healthy rosy cheeks, thanks be to God:

And a few years ago, while changing his site with his pump:

And a current picture of him, excited to put a new "skin" on his pump (a way of personalizing it) His skin of choice this time, from his favorite show "Ben Ten" :

If you or someone you know has been given this diagnosis, be patient with yourself or them, and believe that you will get through it in time, and be stronger for it in the end. Please share the above mentioned symptoms with anyone you suspect may have a child or themselves may have any or all of them, you could save their life. God bless you!

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