A few weeks ago, a fellow Diabetes Advocate made a request, send him your diagnosis stories. He felt that too many children were being misdiagnosed when a simple blood or urine test could have saved their family a lot of stress and perhaps even saved a child’s life. Tom Karlya is now working to gather stories of missed diagnosis and present them to leadership in medicine, health agencies, and government in the hopes that change occurs; the very least being the administration of a urine test (ideally a blood test).
My son’s diagnosis story sadly falls into Tom’s criteria. For some this story may be very familiar either because you have read it before or you have lived this yourself. Hopefully Tom and others, through “A Child’s Cry for Change” will see this change. In the meantime, I will take you back to the year 2000….
It was March. In our area it was also the season for colds and flu bugs. The snow was still on the ground but we all hoped it was leaving soon. I had a son who was now in kindergarten and germs were constantly being brought home so I really didn’t think much about it when my youngest son started to seem a little under the weather. He was also two and due to cut his two-year molars at any moment. Experience had told me that this could make him grouchy and out of sorts so his change in behavior set off no red flags.
As time went on he did not get better. He spent more and more time demanding that I hold him while he slept. If I put him down he would wake and cry. He was constantly soaking his diapers. We had never gone through so many at one time. I had to put blankets on our couch to protect it from his urine. I was concerned but he was constantly drinking so it was no wonder that his little bladder never stopped filling.
While he spent most of his time cuddled with me, making it difficult for me to deal with anyone or anything else in the house, he could manage to get up and around when he wanted. He was able to find the jug of apple juice in the fridge and drink it down when I wasn’t looking. He obviously was not quite as weak as he was pretending to be.
All of this behavior came to a head when he came out of his room with a dirty sock in his mouth. He had white spots on his tongue and was trying to wipe them off. Something was definitely wrong so we packed up my son and headed to our local emergency room one hour away.
My son was seen by a nurse first. She did the initial assessment. I told her of his occasional vomiting, his constant drinking, his clinginess, and wet diapers. She thought he might have the flu. The doctor looked him over and stated that he had an ear infection. When I asked about the vomiting and diapers, he asked me if my son was drinking? I said that that was all he did. The doctor said there was nothing to worry about and sent us home.
A few days later my son seemed worse. The antibiotics were not helping. Now he was constantly sleeping. He only woke to drink. His diapers were still soaked. I booked an appointment to see our family doctor. He would see us at 1:30 pm that day, the 17th of March.
Before our appointment, I bought some baby food. My son hadn’t been eating and I thought something simple like baby food might be easy for him to digest. We arrived at our appointment before our doctor had returned from his lunch. As we sat in the reception area, my son continued to sleep in my arms. His little body was cold despite the number of layers of clothing and socks that I had put on him. His breathing was now raspy and it was making me nervous.
It obviously made those around us nervous as well because the people with appointments before us refused to go in until my son was seen. When I went into the office with my son, the doctor only looked at him in my arms. He gently touched his face and told me to take him to the hospital immediately. The doctor would arrange for emergency blood work and x-rays but we had to leave now. He said that he was sure that my son had diabetes, ketoacidosis, maybe a lung infection.
I really didn’t know what the first two possibilities meant but I knew that they were bad. My son was only two. He had to simply have a lung infection. They would give him antibiotics and he would be fine. I packed him up again and we headed across to the local hospital.
My son never stirred when they poked him with needles. The technicians had a worried look on their faces. He never stirred when they did a chest x-ray. I held his small body upright while they took their pictures.
When we were done we went back to the doctor’s office to wait. We didn’t wait long. The doctor took me into his private office. He told me that we had to get my son to the next town now. He was a very sick little boy. A doctor would be waiting to see him. There was no time to delay. We had to leave now.
My son’s father drove. My oldest son sat in the front seat beside him. I sat in the backseat holding my baby. I could not put him in his car seat. I was now terrified. I held my little boy and willed him to live. I prayed and hoped that my breath would be enough for both of us. I willed my life into his. Each breath he took was a blessing. I didn’t see the ride to the hospital. I was told it was treacherous. There was snow storm brewing. It was not a time to be driving but this was the fastest way to the hospital. There was no choice.
When we arrived at the second hospital the paper work could not be done fast enough for me. The clerk must have sensed my stress because she personally took me to the ward where staff were waiting for my son. They tried to weigh him but he was too weak to stand. They put him on a baby scale and told me that he weighed 11.2 kg. I was scared. They hooked him up to a monitor to see how much oxygen was going into his blood. It was low. I didn’t how to fix this.
His new doctor examined him and ordered that he be moved into the Intensive Care Unit. We blindly followed. My son was now in amongst the elderly and dying. My mind could not take in what was happening. I was numb. We were soon asked to leave his room and they tried to put in what they called a “heart line”. It was a dangerous but necessary procedure.
As we waited to be allowed back in, the doctor came out to talk to us. He told us that our son had diabetes. He told us that he had twelve hours to live. If he survived after that then they would assess any damage that had been done and we would move forward. They had to be careful how much insulin they gave him or they risked giving him a heart attack or causing brain damage. For now we waited.
I nodded and went to a phone to begin to call family. When my mom answered the phone, my voice cracked and the tears began. I asked her to tell the rest of my family. I couldn’t speak to anyone else. I sat in that little room and cried.
Eventually I was allowed back in the cubicle with my youngest son. I sat with him all night. The next day he began to stir. He wanted the tubes removed. He would slowly come around. We would be in the hospital for two weeks. We would learn and get stronger as we prepared for this new journey in life with diabetes.
If you have a story that you would like to share with Tom, please email him at Tom Karlya, (aka DiabetesDad) at firstname.lastname@example.org. In the subject line please write: My Diagnosis Story. Thank you. Together we can make a difference.