Here's what happened

February 5 - March 2

2018

We were at a school function on a Sunday morning, when he said he wasn’t feeling well. By the time we got home, his temperature had spiked to 103.7. We went to the doctor Monday morning, and he was diagnosed with Influenza A. Back home, we begin round the clock cool compresses and doses of Tylenol and Advil but could not break the fever. By Wednesday, he started coughing, we feared pneumonia and took him to the ER. 

 

Once in the ER, they determined his lungs were clear, but his sodium levels dropped to a dangerous level of 127. He was admitted into the hospital, quarantined for the Influenza A virus, and started immediately on fluid IVs, Tamiflu, and a steroid. The doctors determined he had another virus in addition to the flu. Through the constant cycle of nurses and doctors, he smiles, says “thank you”, and tries to joke with all who are caring for him. I don’t leave his side. By Thursday night, he was hallucinating and ripped his IVs out of his arms. It was terrifying. I laid at the foot of his hospital bed, holding his arms down for the rest of the night, talking him through the hallucinations, trying to soothe his fears. His night nurse and I determined that he was having adverse reactions to the Tamiflu medication and stopped the doses immediately. On Friday morning, he was alert and his sodium levels had recovered. We decided to remove all of the IV medications but remain in the hospital one more night for observation to see if he could maintain the sodium levels on his own. Saturday morning all was well, and he was discharged, seemingly recovered from the flu and mystery virus.

 

At home, he was extremely tired. Understandable, I thought, since we hadn’t slept through the night for the past 7 days. By Monday, his spirits were up, and he tried to eat. The vomiting began. Back to straight Gatorade and full bed rest. Tuesday he seemed better but still not right. He looked gaunt. He now weighs 124 pounds - down 13 pounds in 9 days. Although he was determined to go back to school, I made an appointment with our pediatrician for Wednesday morning, Valentine's Day. At check-in, his blood pressure was 80/59 and he was slightly dizzy and lethargic. He looked green. They took blood and urine right away and started running tests. His glucose levels were too high (286), and we were immediately sent to the pediatric endocrinologist with the preliminary diagnosis of Type 1 diabetes. At this point, I’m in shock and disbelief. My amazing husband rushed to the pediatrician’s office to give us hugs - my Valentine’s Day gift is his constant love and support. All three of us head to the endocrinologist. Blood tests show his A1C level is 6.6%. This A1C test looks at his glucose levels over the past 3 months. Some doctors say over 6% is diabetic, some say over 7%. He is borderline. 

 

Over the next few days, we start to learn about Type 1 diabetes and begin a new lifestyle. By that Saturday, things were rough. His blood sugar readings were low, and the vomiting began again. We called the doctor. She told us to increase his carb levels, and she wanted to look into something happening with his adrenal glands. On Sunday afternoon, she called and said she suspects Alex has an adrenal insufficiency (adrenal glands not producing enough cortisol) but is awaiting test results. She called in two prescriptions for us, and we started the medications right away. He seemed to be feeling better. 

 

On February 19, we were on our way to his high school to talk to teachers about his long absence and to figure out a plan for his makeup work. His doctor called and said to come to her office right away. They weighed him and took his blood pressure three times: while laying down, sitting, and standing. He’s lost 3 more pounds. She asked us to go to the ER and get his sodium levels checked again. She also ordered more blood work tests, specifically for his adrenal glands. So we went to the ER, and sure enough, his sodium had dropped once again to 127 - the same level when he was hospitalized last time. He was admitted back to the hospital and hooked up to an IV to bring his sodium levels back up. I can't leave his side. They started him on insulin, both long-acting and after each meal and have added a thyroid medication for hypothyroidism. He met with the diabetes nurse and learned how to calculate the carb ratios he will use to determine how much insulin to give. By evening, he is feeling better and eating like a champ.

 

The next day he was able to visit with family and friends in the hospital. The president of his school and two teachers also paid him a visit. He was so touched, and the visits really buoyed him. As he tells his story, you can tell he is starting to wrestle with the gravity of it all. He remembers his fever tremors but not the hallucinations from the Tamiflu. Something I wish I could forget. He remembers the pretty nurses that took care of him the first go around, and he is charming to those helping him now. When things are quiet, his analytical mind starts ticking away. The questions he asks the doctors are focusing on the gadgets that he will use to monitor his glucose levels and eventually distribute the insulin. He's learning about carbohydrate ratios and doing calculations in his head. Funnily enough, when asked if he was ready to go home, he said no. He said he wants to make sure they fix everything they need to, so he doesn’t come back to the hospital next week. Although I laughed when he said that to the doctor, I realized how hard it will be on him if we don’t find out the “why” behind all of this. So, they removed his IV, and he stayed in the hospital one more night. The doctors made sure his sodium levels had stabilized in the morning before discharging him.

On March 2, we are back at the doctor's office. The rest of the test results came in. Most of what we suspected has been proven true. He has Schmidt Syndrome, a rare combination of Type 1 diabetes (pancreas no longer producing insulin), Hashimoto's disease (immune system attacked thyroid), and Addison's Disease (adrenal glands no longer producing hormones to fight infections, also affects blood pressure, heart function, blood glucose levels and kidney function). Three autoimmune diseases brought on by a virus. Our new journey has begun.