Samson's diagnosis story

TiaG
Sun, 30 Apr 2017 00:21:33 +0000
My Story

Samson was diagnosed on St. Patrick’s day in 2016. He was not quite 2 years old.
Prior to that:

In November the year prior he got a bad case of hand, foot and mouth disease – so bad that his fingernails fell off. About a month before diagnosis he got a bad fever and stomach bug combo, with some throat symptoms as well. No idea if this is related but some part of me suspects it is.

But just prior to diagnosis, for about a week and a half we had noticed that my son had been actually drinking the water we gave him at breakfast. Normally he’d stick his hand in it, toss it over and drink very little, which was exasperating. So I had attributed this extra water drinking as developing maturity, or perhaps a compensation for his liquid intake as we’d been trying to cut back from 4 to 2 bottles of milk a day. He also had slimmed down just a touch; he did not look sickly or emaciated and we thought he was just aging out of his toddler chub.

My husband had gone to Switzerland for work and it was just me and the kids all week. The first day of the week was Pi Day, so I had made a sweet potato pie. That night, Samson woke up crying twice saying he was very thirsty. This was extremely unusual; he usually slept through the night and was not a big water drinker in general. I found it disturbing but wasn’t sure what to think.

The next morning his diaper was soaked and had fallen off. His bed was wet but it smelled vaguely sweet, not like urine, more like cotton candy. I was puzzled by the smell but thought perhaps it was spilled juice, or perhaps our cat had peed on the bed.

But later on that day, I started thinking about the sickly sweet wet bed, the soaked diaper, and the unusual thirst the night before, and started to get a sinking feeling in my chest. My dad is diabetic, and I remember vividly the months before he wound up in the hospital for triple bypass and was diagnosed; we would go to the movies and he would have to use the restrooms before, during and after the movie, and again when we came home.

I typed in the symptoms and had an even worse sense of foreboding. There were really only a few diseases with the same set of symptoms, and most were much rarer and did not perfectly fit with Samson’s set of symptoms. I called the nurse at our peds office but it was too late at that point; the doctor’s office was going to close before I could bring him in. But I heard the sharp pause when I described his symptoms. She recommended either making an appointment first thing the next day, or even taking him into the night clinic to be seen.

Because I was all alone with the kids I didn’t want to trek out to the night clinic; i was worried enough that if he was diagnosed at night we would be forced to stay all night in an emergency room, with my other son who is just two years older. I reasoned to myself that he didn’t look that sick; my past experience with diabetes was my dad, who is type 2 and who likely had the disease festering for years, so I rationalized that it was not an emergency that required going in that very minute. That night I fed him something very low in carbs and sugar. I was scared the food was poison to him.

So the next day I walked with Samson to the pediatrician’s office, the doctor checked his ears, noted he was in good spirits, and we made small talk. They put something in his diaper to collect urine. He refused to drink water so I bought him a juice at the corner store, then brought him back once he had filled his diaper.

As soon as the dip test came back, it was 3+ (the range was 0,1,2,3,3+) and the doctor’s demeanor changed. She told me that I was right, and that the good news is that I caught it early and Samson was still totally healthy, her exact words were “I’ve seen kids come in with this who are sick as s***” at diagnosis. I was in shock – my beautiful wild, rambunctious boy had a lifelong, life-threatening disease. I kept thinking guiltily of that juice I made him drink for the test, and how horrible it must have been for his body.

I told her that I was alone and was worried about who would care for my older son if I was in the hospital. She called the best pediatric clinic in the city and said Samson was most probably not in DKA and she was hoping we could be seen in several intensive office visits rather than staying in the hospital, but because all of the endocrinologists were at a conference, they had no one in office and said we had to go to the emergency room. My other son was still at daycare and because I had walked, we didn’t have a car seat. We took an Uber and he sat on my lap, with my heart sinking the whole way. Thankfully the driver didn’t object.

My other son was at daycare and we had no family in town; I called a friend who drove in from an hour away to pick Zane up from daycare and spend the night till my husband’s sister could fly in. My husband scheduled the earliest flight out of Switzerland but could only come in the next day.

Luckily the peds emergency room was not crowded, and they took us right in. Having to hold him down for the blood tests was traumatic, but we were relieved to find out that though his blood sugar level was 400 mg/DL, he had no ketones and his A1C was 7.2. They admitted us so that we could learn about insulin therapy, though he did not need to receive any other kind of treatment.

Based on his test results, the endo said it was likely he’d had the disease for about 2 weeks to a month and had at least a decent amount of residual beta cell function. His antibody levels were through the roof though, which made the next four months till honeymoon ended especially heartbreaking. I suspected his honeymoon would be short-lived and indeed it was almost non-existent, despite the early diagnosis.

That first night in the hospital was lonely and heartbreaking, just watching my precious little boy sleeping so peacefully, and knowing how much was in store for him. For weeks I would cry by myself in my room every single day, reading about the complications, the shortened life expectancy, and thinking about all the pin-cushion treatments he had to face daily. Gradually my crying jags decreased to every other day, then once a week, and now I would say it hits me once every month or two. The grief comes in waves but I can’t imagine ever getting over the wish for him to be cured, to be free from this burden. I console myself knowing that all of us having travails and suffering in life, and that he will just know what one of his struggles is from an early age. But I do wish I could take the disease on instead of him. I also know his future is going to be so much brighter than those of the brave people who were diagnosed earlier (well, assuming he doesn’t mess up his life in other various ways ) I know for sure that in 10 or 15 years, treatment will be much less burdensome and that this travail will make our family stronger.

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