A Mom's Thoughts on Diabetes

(1998)- My son, Michael, was born in 1985, beautiful, healthy, but big. He weighed 10 pounds even, at birth, and by his first birthday, he weighed 35 pounds. He was always in the 99 percentile at his well baby checks, and the doctors all were impressed with his size. I always got funny looks at the grocery store because there I was with a baby who looked like he was 2 years old, but who could barely walk!

In July of 1991, at age 5, Michael became very ill. He began drinking what seemed like gallons of water a day. Consequently, he began "peeing" much more than usual. I was concerned, but rationalized it out - it was July, he was hot, he was drinking more, so he was peeing more. No big deal. This went on for about 10 days. When he started coming in from playing in the early afternoon and taking voluntary naps, and I had to shake him to wake him for dinner, I knew something was wrong. "Probably just a kidney infection", I told myself. I took him to the clinic at the small army post where we were stationed in Germany, and the doctor took one look at Michael and ordered a urine specimen. After dipping a test strip in the urine, the doctor's face turned a ghostly white, he turned to me, and said, "I could make kool-aid out of this urine". I didn't know what that meant. "Diabetes", said the doctor. I refused to believe him, after all, no one on either side of the family had ever had diabetes.

We were sent to a large Army hospital in Stuttgart Germany, where Michael was admitted immediately. The staff took over, inserted IVs into just about all of his little veins, and I was literally in shock. There lay my baby boy, 5 years old, and I was informed that he was hours away from a diabetic coma. Basic functions were beyond me. I couldn't eat, I couldn't sleep, I couldn't even think. I went to call my parents (in the U.S.) and couldn't remember the phone number. I made a collect call from Germany to a wrong number at 3 in the morning!

I cried for 3 days straight, and whenever anyone as much as looked at me, I'd break down again. We were informed that upon admission, Michael's blood glucose level was 974. A level in a non-diabetic person should range from 80-130. All I could think of was, "I let him have too much kool-aid". The doctors assured me that it had nothing to do with what he did or didn't eat. After 2 weeks in the hospital, Michael was released. The first months at home were hell. I had to literally sit on him to give him his shots, and he cried every time he had to do a finger stick.

As I write this, Michael (age 13)is away at diabetes camp. This is his 4th year of going to this camp, and I cannot say enough good things about the people there. Michael gives his own shots now (3 a day) and is fairly responsible about watching what he eats. The holidays are the hardest, especially Easter and Halloween. School is always a challenge, with parties, snacks, and field trips. We've managed to make it so far! The 2am insulin reactions are beyond description of scariness. He averages about one a year, so I suppose we are lucky, but anyone who has witnessed anything like this knows what I mean. The seizures, the moaning, the vomiting....

I worry a lot about Michael, about when he goes to college, or just moves out on his own. I think that having diabetes has made him more mature in a lot of ways, but who will be there for him at 2 am if he has a reaction? How will he react when he's at a party and everyone is drinking beer? What if he is driving and goes into insulin shock? I worry. But you know what? We went to Riley Children's Hospital in Indianapolis for a 3 day class on diabetes. Walking through the lobby, seeing all of the terminally ill children, the babies with leukemia and their beautiful little heads, bald from chemotherapy....the baby I saw with some sort of sci-fi looking machine sticking right out of his chest, the babies with severe birth defects....these things made me appreciate diabetes. At least it is treatable, and hopefully curable.

I always wondered how Michael ended up with diabetes. First I was told it was because he was a big baby. Then I heard that if you give your baby cow's milk before they are a year old, that'll do it. I breast fed Michael until he was 6 months, then put him on cow's milk. Then I learned in the class at Riley that diabetes is an auto-immune disease. Evidently, for some reason, your body's immune system can "short circuit" and attack healthy tissue instead of doing its proper job. Guess who else has an auto-immune disease? Me. My whacked out immune system attacked my thyroid, "killing" it. I've been on synthetic thyroid medicine since age 11. So, evidently, my son can thank me for this wonderful disease that has ravaged his body. That's a lot for a mom to live with.

I heard recently that Pfizer has developed an insulin inhaler to replace injections. I hope and wish every day that this gets FDA approval FAST. I also heard a few years ago that in Japan they have developed a cure for diabetes, by coating healthy beta cells with a synthetic substance that the body can't destroy. These cells can then safely transport the insulin as needed. Kind of like an armored car for beta cells :-) I believe that the person has to go once or twice a year for a new injection of healthy cells. If anyone knows anything about either of these studies, PLEASE let me know! I would especially like to learn more about the Japanese "cure". I'm basically a cynic,and I firmly believe that the big pharmaceutical companies like Lilly, Becton-Dickenson, and Boringer-Manheim (I know I probably spelled those names wrong) make SO much money off of diabetic supplies, that they are preventing these treatments from gaining FDA approval. I know how powerful lobbying in Washington D.C. is.

(September 2000)
I can't believe that it has been 2 years since I wrote this page. How time flies!
Michael is now 15 years old, and doing well. In September of 1999, his endocrinologist put him on an insulin infusion pump. This has been a Godsend. I can't say enough good things about the pump, and the people at Mini-Med. Also, I am thankful that I have excellent insurance where I work, because the pump is very expensive.
In case you don't know, the insulin pump is a beeper sized device minimed insulin pump

that holds a syringe full of insulin. There is a very thin tube that runs from the pump directly into the injection site of the person using it. Michael prefers it in his stomach. The tube has a small "cannula", or catheter that is injected into the body. It really is tiny! The tube also has a "quick disconnect", which is a junction between the cannula and the rest of the tube, that can be disconnected, for whatever reason. The user programs into the pump how much insulin to receive per hour, and the pump does its thing. The continuous, or on going dose is called the basal rate. You can program an endless number of basal rates, for example, from 6 pm until 10 pm, Michael receives one dose, then from 10 pm until 5 am, he is on a lower dose (this is his prime time for reactions). The pump automatically changes doses to whatever you have programmed in.
When it's time to eat a meal, you have to count the carbohydrates in your meal and do a little math to get your pre-meal, or bolus, dose. For Michael, one unit of insulin takes care of one carbohydrate (13 grams). Most of his meals figure out to be about 8 units of insulin. He justs dials in the dose on his pump, and he's ready to eat.
The freedom the pump has given Michael is wonderful. No more carrying around syringes and vials. If he wants to go swimming, he just uses the quick disconnect, takes the pump off and leaves the cannula in. The cannula has to be changed every 3 days, due to risk of infection. There is an automatic inserter that is used to put a new tube in. Michael says it doesn't hurt too badly, and that it is definitely better than receiving 4 or 5 shots a day! If he does a blood test (blood tests are critical for successful use of the pump) and his sugar is a bit high, he just dials in however many units he needs to get his level down. There again, he has to use a little math. For him, one unit of insulin will bring down his sugar by 40. No more shots!
There is one main thing to watch when using the pump. The cannula can get crimped or come out, once it is inserted. This is usually the result of some kind of athletic activity. If this happens, the insulin cannot get through, and it doesn't take long to go into DKA, (diabetic ketoacidosis). There is a security feature built into the pump, which will send an audible beeping alarm, along with a message alarm that says, "No Delivery". Michal knows that if he gets this alarm, that he had better get a new cannula inserted, fast, or he will have problems. A couple of times he has ingnored the message, and he ended up in the emergency room on an IV. He has learned to pay attention!
Michael went to camp again this year, and it was interesting to see the kids with pumps. Last year they said they had 4 kids on pumps, this year they had 15!
The people at MiniMed now have a glucose checking device similar to the pump - no more finger sticks! We don't have that yet. The ideal (short of a cure) set up would be to have a device that would check glucose, and automatically give insulin based on that check. I think this is possible. The fine doctors that run the diabetes camp talked about it, but their opinion is, this will never come to fruition due to the risk of lawsuits (gotta love those blood sucking lawyers). If you think about it, if the unit malfunctioned, and gave the wrong dose, and the person died, there'd be hell to pay.
The pump is not a cure, but it has certainly made life better for my son. I still hate diabetes, and I wish they would find a cure.

Thanks for taking the time to read this.