By: Cynthia Heintz
My husband and I have nine children. Elliott is our oldest and when he was diagnosed with type 1 at age 11 in 1996, we were blindsided. Neither my husband, nor I, nor anyone in our extended family had diabetes. Elliot had all of the classic symptoms: excessive thirst, frequent urination, uncontrollable hunger, occasional blurry vision, and (something I think a lot of parents don’t recognize as a sign) bedwetting.
The adjustment was extremely difficult. Elliott didn’t think it was fair that he had to eat only “his” food. It was so easy to be in denial about it all. I cried the first time I gave him a shot.
At the time, we (and others around us) had limited understanding of how to handle diabetes. We felt unable to keep him in public school and chose to home-school him. Looking back, I wish we had fought more for his rights. I remember doing an in-service for his teachers and having one of them object to his eating in his class. The physical education teacher refused to carry glucose tablets because he didn’t want the responsibility. One teacher asked, “He won’t do anything weird in my class, will he?”
Before long Elliott began to achieve greater control. We decided then it was time to look into insulin pumps. They were a relatively new concept, however, and it was impossible to get our insurance company to cover the cost. We gathered information from doctors, diabetes camps, pump companies, CDEs, and other people with diabetes, but we were still turned down.
We ended up spending our own money (yep! It was that important!) to get him started, and then we went after the insurance company to provide what we believed would extend Elliott’s life. We had a hearing and I presented our case.
We won! We received full reimbursement plus the coverage of all of his supplies. Elliott was the first kid in California under this medical coverage to be authorized for an insulin pump. Little did we know that we were paving the way for two more of our kids to receive insulin pumps.
We learned the hard way with Elliott that even if you have a pump, you still have to pay attention to how you feel. He had severe DKA (diabetic ketoacidosis) at the end of his senior year in high school. He knew he was sick, but he was in a play and he didn’t want to let the other cast members down. He would say his lines on stage, walk backstage to throw up, then go back onstage. By the time we realized what was happening and got him to the emergency room, he was comatose.
Our son Ean turned four in November of 2000. Yup, Diabetes Awareness Month! It was just like any other day except Ean kept running to get drinks and then to the bathroom. Recognizing a red flag, we decided to test his blood glucose. He was well over 200. Not too high, but not normal either. We took him to the pediatrician right away and he was started on Regular and NPH insulins. It sounds like a strange approach now, but at the time it was all we could do while we waited for an appointment with the endocrinologist.
Ean’s primary problem was not the shots or the food limitations–it was passing out. He had total hypoglycemia unawareness. It’s not uncommon in young children. I would be driving and glance back and he would be fine and then back again and he would be out. It was fortunate that he was still young enough that if we put a straw in his mouth he would suck, if he was not too far under.
Once Ean passed out at the dentist’s office, which was about an hour and a half from our house. We live in a very rural area. Glucagon and paramedics came into play. I had to tell the receptionist three times to call 911. She just couldn’t comprehend the severity of the situation. She thought the child on the floor was just taking a nap! All Ean remembers is waking up in the back of the ambulance. The memory kept him from sleeping for a couple of weeks. All his twin sister, Elizabeth, remembers is that she got to ride in the front of the ambulance and that she needed her shoe tied. When we arrived at the hospital, the driver came back, opened the doors, and said, “Your daughter needs her shoe tied.” It was that important.
Not long after this, the twins started kindergarten. I went to school with them every day. I had the luxury of being a stay-at-home mom, and it seemed necessary to watch out for lows and to help Ean test and treat when needed. He did have a couple of scary episodes of “getting dizzy” in the bathroom, so dizzy that he couldn’t come out and needed another child (we set it up so that someone always went with him) to come and tell us. Then there was the time that he came in through the back door of the classroom. I just happened to be talking with one of the teachers by the door when we both heard him hit the floor.
We home-schooled our four oldest children for four years, until we moved to a different school district. There was a night-and-day difference between the two districts. Our current district’s staff (Yreka District in Siskiyou County, Northern California) is very willing and able to cope with diabetes. All the teachers have glucotabs in their desks and are open to learning how to help students with diabetes. My advice is, don’t forget that all schools and districts are not the same. If you can’t effect change in your current district, you might have better luck with another one.
As the twins moved into the first grade, Ean started to become more aware and so did his sister. Elizabeth began to notice changes in her brother when he was getting low. He would look a little pale or she would walk past him and touch his back (to see if he was clammy), and she would tell the teacher, “Ean needs to test.” At first this annoyed him, but he began to realize how valuable she was to him. From then on it was “Listen to Elizabeth.”
Once Ean became more efficient at recognizing his symptoms, we began pursuing the pump for him. We had to prove that he was not too young, and at the time, six was young. We borrowed a saline pump and took pictures of Ean in every imaginable situation. Ean in class, at P.E., on the monkey bars, in the bathtub, and in bed; all with “his pump.” We obtained letters from teachers, nurses, and other school staff. We put everything into a scrapbook and gave it to his endocrinologist. It worked! Our doctor was convinced he was ready!
After Ean was approved for a pump, we began doing audible blousing over the phone. Every parent has high praise for whoever invented that feature!
Another daughter, Eva, then eight, started to not feel well. Eva was a competitive gymnast and had broken her foot coming off a “flyaway” on the high bar. Great landing, no mat! She was on crutches the first half of second grade. When she got her cast off, she got right back into the game, but both her coach and her teacher mentioned that something seemed wrong.
At first we attributed it to her recovery and didn’t think too much. But when she refused to go to gymnastics because she was too tired, we knew something was up. We tested her BG, but it was normal. We ran every lab test known to man, from mononucleosis to lyme disease to rheumatoid arthritis. While we waited for the lab results, we noticed that she had started to wet the bed. Red flag!
One Saturday night I was in a chat room and Eva tested 371! One of the moms on the site said “Call the endocrinologist now!” We did and headed down to Sacramento, a six-hour drive from our rural Northern California home. It was Mother’s Day. I was pulled over for speeding, but the sympathetic officers took pity on a panicky mom and the little girl in the back seat whose life would never again be the same. They didn’t give me a ticket.
Eva was a dream patient and was caught very early on in the illness. She “honeymooned” for a year. She gave herself her first shot. She was focused and motivated and wasn’t going to let anyone stop her from doing what she wanted to do.
During this time Ean was a guest speaker at a pump class for kids just starting on the pump. Empowerment is what it is all about. Even though he was only seven, he wowed them with his knowledge.
Eva carved out a niche for herself. She continued gymnastics and finished on top the whole time with her pump taped to her thigh. She then went on to play volleyball and basketball. She belonged to a champion track and field team and set a state record in discus. She also plays the saxophone and was drum major last year.
Nothing stops her. Nothing has stopped any of these kids.
If there is one thing I have learned, it’s that the age of diagnosis makes a big difference in how the child copes. Elliott was eleven when he was diagnosed, old enough to get the gist of things but old enough to be a bit set in his ways, especially when it came to food. (This was when we were still doing food exchanges. Now we count carbs, bolus, and exercise.)
Eva was eight when she was diagnosed. A perfect age, if there can be one for dealing with a difficult disease. She was old enough to understand the basic concepts and still young enough to be open to something new. All of the materials that are sent out from the ADA “Wizdom Kit” and the JDRF “Bag of Hope” seem to be geared to an eight-year-old.
Ean was four when diagnosed. There isn’t much a four-year-old can do on his own. It was his job to put the strip in the meter. But he didn’t cry at shots and mostly ate what we told him to eat. The hardest part of being diagnosed so young is that they never really develop independence. They are so used to Mom and Dad doing everything for them. We are still working on independence for Ean and he is learning to separate his care from his twin. Elizabeth is learning to step back and allow Ean to take charge of his own health.
One thing that I know for certain is that every child with diabetes is different. Diabetes management is such a personalized issue. We have noticed that Elliott, who is now 25 and 14 years from diagnosis, is really paying closer attention to how he is taking care of himself. He has realized the importance of being a role model to his younger siblings, and they look up to him.
The kids use different insulin pumps, mostly to express their individuality. They were very discerning regarding the different features on each pump. Elliott has always been with Minimed and has no interest in changing. Eva liked the color screen and the outside colors of the new Animas 2020 (hers is “limelite” green). Ean needed a pump with a large cartridge, and he thought that the Deltec with the FreeStyle meter attached looked like a “Digivice” (think Digimon/Pokémon).
It really makes life interesting that all three kids have chosen a different brand of insulin pump. Different strokes! So, be it Animas, Cozmo, or Minimed, there will be an alert or alarm going off at any given time of the day or night. We just have to figure out whose it is. Kind of like trying to find that annoying little cricket that is deafening until you look for it.
Elliott , Eva, and Ean all have a mini-competition to see who can get the best A1c every three months. They compare insertion sites and the occasional pump bump. All nine kids know how to give glucagon. They all have cell phones (“for emergencies, Eva, not for texting!”) just in case.
It isn’t a life I would have chosen, but then again, it could be much worse. I have had people say things like “I could never do what you do!” All I can say is, “Nobody asked me.” There are reasons we are given what we have to deal with. Diabetes has shaped the futures of my children and turned me into an advocate. Elliott works in a pharmacy. Eva has definite plans to go to Stanford and become a pediatric endocrinologist. Ean plans to become a research scientist so that he can find a cure for diabetes.
We have met and been associated with some of the most amazing people in the world. From our diabetes camp, Camp McCumber (14 years now!) run by Dr. Logan, to Dr. Sheikholislam and Dr. Prakasam, to the nurses at the PENS team and the amazing distributors who make sure our kids get their supplies when they need them. It’s the people we see every day. It’s the pediatrician who is willing to pinch hit during a DKA episode. It’s the school nurse who is your right hand, eyes, and ears when you can’t be there. All of this is something good that has come from something awful.
Diabetes is a challenge, to be sure, but it’s life as we know it. I think that all of my kids are who they are because of the experiences that have touched them. I like the people that they have become.