Perspective: Type 1 Diabetes

Our experiences in the months since Casey's diagnosis have been incredibly difficult. (Courtesy Photo)

My 6-year-old son Casey almost died of Type 1 diabetes last March. After that scare, I became intent on doing my very best, not just for my son, but also for others who have or help manage this complex chronic disease. Perhaps this is because our experiences in the months since his diagnosis have been incredibly difficult.

I’m not clear why it is acceptable practice for parents to go through a crash course on a lifetime disease during a traumatic hospital stay and then be flung into the world mostly on their own. As you try to catch up intellectually and emotionally to your family’s suddenly transformed reality, life races on. Managing normal life day-to-day can be hectic, but add to that becoming a barely trained clinician trying to manage your child’s life-threatening disease, and you now carry the weight of the world. That weight becomes crushing when you think you’re failing despite your best attempts. No doctors or nurses called us in the months after Casey’s diagnosis to ask if we had questions or problems, such as puzzling episodes of out-of-range blood glucose (BG) levels (many), difficulty getting essential diabetes supplies (absolutely), or simply being overwhelmed (definitely). At least this was our experience.

We had nerve-wracking hyperglycemic and hypoglycemic moments. We couldn’t figure out why Casey’s blood sugar was like a rollercoaster at times. We nervously questioned what to do if mistakes happened. We did call the emergency number once and spoke to the doctor on call for a scary overdosing error. One time, with great frustration, we asked a nurse to explain to us in a virtual visit how to use a syringe—a one-unit syringe, no less—to withdraw insulin from Casey’s newly prescribed one-unit insulin pen, because insurance wouldn’t approve pediatric pens or syringes that dose in the half units that children often need. Yes, you read that right. And once punctured, those very convenient pens can no longer be used as pens.

It would have made a huge difference had we been assigned a diabetes educator or a nurse from the beginning to call weekly and ask, “How can I help?” Without such help during our first half year, we had to rely on our own wits and knowledgeable friends, family, and other parents of children with diabetes to help us navigate these rough and uncertain waters. We’re so thankful to all of them! They buoyed us up when we were tough on ourselves or confronted scary situations. This disease constantly makes you question if you are doing the right thing. It’s as if the disease were designed to undermine your self-confidence.

Perhaps I wouldn’t feel this way if diabetes education, support and feedback had continued after leaving the hospital. We first met Casey’s medical care team in late April, almost two months after his hospitalization at initial diagnosis. After that introductory visit, according to standard protocol, his follow-up appointment was scheduled for three months later toward the end of July. At that April visit, I expressed how nervous I was to go three more months without any appointments, especially considering Casey’s daily routine would change significantly in June, which affects BG levels. He would be physically active for eight hours a day at our summer camp. Diabetes education classes were not offered at this April appointment, nor were they even available to patients and patient guardians at this location. So three months of rollercoaster BG readings later and I was beyond frustrated. At his July appointment, I insisted on scheduling diabetes education classes ASAP. As I explain later, that request would save Casey’s life, again. Staff check-ins with new patients, even virtual visits, should be more frequent, perhaps every two weeks and at least monthly for the first few months.

More frequent check-ins can also prevent deadly errors by both patients and doctors. As the patient or patient’s guardian, you must understand everything about safely managing this disease, while you live a busy life with many distractions and other obligations. You must have emotional support to prevent burnout and fatigue, which can lead to doing things wrong or not doing them at all. I often wonder about the single parent or patient doing all this on their own. As for health care providers, they need to regularly monitor a patient’s blood glucose levels, diet, physical activities and emotional adjustment to tailor advice and adjust treatment regimens. Familiarity improves quality of care and reduces risk of medical error.

We had been frustrated for weeks before Casey’s follow-up appointment in July by not understanding why his blood sugar kept going too high and too low. When I told his doctor this, he asked to review Casey’s Dexcom continuous glucose monitor (CGM) stats before Casey and I met with him. His staff sent me directions to upload them that didn’t work because they assumed that Casey uses a cellphone. They then sent me directions to use the Dexcom Clarity Software. I needed to create an account and then upload Casey’s CGM data from his receiver. This would enable them to log into my account and see his stats. I’m not tech savvy. My mind shut down when I saw how many steps that would involve. I called to explain this so they arranged for a nurse to call and walk me through it. It took a while, but that was helpful and I felt supported. I wished support like that were the norm, not the exception.

At Casey’s appointment the next day, we looked at the graph of his Dexcom blood glucose readings from the last two weeks. I explained how anxiety provoking it is to try to keep Casey’s BG under control when it’s not clear how to deal with many of the influences on it. For example, Casey was in summer camp and physical activity affects blood glucose levels. I expressed urgent interest in further diabetes education and having someone to consult more frequently. The doctor said he would increase Casey’s insulin to combat the high BG readings the Dexcom was showing for certain times of day. The nurse and doctor left the room and returned with a new insulin dosing chart. I noticed the insulin to carb ratio was different. Casey would now get more insulin for the same number of carbs and current level of BG, but I knew they were trying to bring down his high blood sugars. I left the appointment hoping I would now feel more effective and confident managing Casey’s care. But his blood sugar would soon crash.

I dropped Casey off at camp, picked up his older brother Jaiden, and ran some errands before Jaiden’s eye appointment. I told my husband Sam that Casey had a new insulin dosing chart and, because Casey didn’t want lunch, I asked Sam to check on him after a while. His blood sugar was at a reasonable level so he went to play. While at the eye doctor, four hours after Casey’s appointment, I received a panicked call from a nurse at the institution’s central location telling me not to use the new insulin dosing chart! She didn’t say why, but I sensed something was terribly wrong. I told her my husband had probably used it already since it had been four hours. She told me to call him and find out, and she would call me back in 10 minutes.

I called Sam. He had used the new chart to dose Casey an hour earlier for high blood sugar. I told Sam to immediately test him manually after I learned simultaneously from Casey’s camp counselor that he had just been in the pool. His Dexcom CGM stops sending BG readings to the Dexcom’s receiver when he is in the pool and can take up to 30 minutes or more to send any again. On top of that, blood sugar levels drop quicker when swimming. Before going into the pool 30 minutes earlier, Casey’s blood glucose had been 214 mg/dL. By the time he got out of the pool, his BG had plunged by almost 200 to 26—near coma level. It’s no wonder Casey was crying and clinging to the hand rail for dear life as he attempted to climb the stairs to our home. Sam immediately had him chug juice, but we both were scared. I wasn’t even there. Our son could have blacked out in the pool or on the playing field, and died, had that nurse not recognized the prescribing doctor’s error when she did. We weren’t sure if and when Casey would recover from such a low blood sugar, but luckily he did. He could have died by an injection from our own hand. When I left Casey’s doctor’s office earlier that day, I left holding a death sentence. Compared to the old dosing scale, the new one would have us give Casey twice as much insulin for eating the same number of carbs as well as 2.5 times as much insulin to bring down his BG level if elevated. That meant we would sometimes be injecting our small child with at least five times as much insulin.

When the nurse who had alerted me to the prescribing error called me back later, I related everything to her. Her exact words were, “Oh no.” She immediately asked for Sam’s cellphone number and called him to check on Casey, whose blood sugar had eventually risen to 71, just barely out of hypoglycemia. She later called me with a new dosing chart. I asked her how this error happened. She said, “I don’t know.” I asked how she caught the error, and she replied that after doing some calculations, the chart didn’t make sense. I told her I wasn’t going to lie, that I was completely traumatized. She said, “Yes, I know, and so is your husband.” I had laid my full trust in Casey’s medical staff, and by doing so had put my son in danger. She kept apologizing, saying, “I’m so sorry,” telling me this was their fault. She told me to throw away the mistaken chart and make sure it’s in the trash. She said the doctor would call me. I would learn three months later that she had discovered the error that afternoon only because she had just received my request for more education and help understanding the chart.

When the doctor called me, I relayed everything to him. He apologized saying it was their fault. He told me the nurse took the wrong chart from a binder. He would be having a serious conversation with her and Casey’s care would be under a different nurse from here forward. He told me what to do in the next few hours to make sure Casey was OK. That overdose of insulin would keep lowering Casey’s blood sugar until it wore off so it needed to be countered both by inactivity and giving him carbs. In my eyes, the entire medical staff in that office had failed us. How this chart passed the doctor’s eyes or didn’t, the end result was the same.

I got through the night by focusing on making sure Casey was recovering from this error, but my heart physically hurt. It all hit me the next day. I sat in my office and cried. My son could have died. I realized in that moment that Sam and I are 100 percent responsible for Casey’s diabetes care. As a friend put it, “100 percent responsibility for his welfare is staggering.” We had relied on his doctor, a specialist who is supposed to know far more than us and guide us on this difficult journey. I felt more lost than ever. Instead of gaining self-confidence following Casey’s appointment, I had lost confidence in his medical care. People we told were outraged by such a potentially fatal error. We now understood we must question everything. But I also felt I had to advocate for other people dealing with diabetes. Their experiences should not have to be as hard as ours have been.

Only recently, at Casey’s second three-month follow-up visit in October, did we experience the care patients deserve. It was at a different location with a different medical team, but included the nurse who had caught the error and probably saved Casey’s life. They took the time to hear our experiences, answer our questions, teach us information we didn’t know, double-check what information we said we knew, help us navigate problems we have confronted in our journey, praise us for doing a hard job well and get us critical pediatric supplies that insurance wouldn’t provide.

Just the night before, I had been despondent that I was failing as Casey’s DIY doctor. So I almost cried, happy tears, when the nurse said that her team never sees numbers so good as Casey’s for a 6-year-old. He has already reached his A1C (BG average in last three months) target of seven, down from 14 at diagnosis. That is hard won success that Sam and I needed to hear, because keeping those numbers good will always be a challenging job. We are grateful for the incredible support team for us back home that helped us stay resilient and reach this milestone. I hope that by sharing our own experiences, others who are caring for a child with a difficult chronic disease will know they are not alone. Nor need they accept inadequate medical assistance in caring for their precious child.

Lisa Seitles

Hammonton

Lisa and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.