Most people are familiar with diabetes, Type 1, Type 2, and gestational.  I think we have stumbled on a new type, though, and no one seems to understand it.  OK, not literally, but it does make for interesting conversation.  “I have a Type 1 diabetic child….sort of.”

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JR, dressed up in period costume while volunteering at the local historical state park.

As you may know, 9-year-old JR was diagnosed with Type 1, or juvenile, diabetes back in March.  You can read more about that here.  He was discharged from the hospital on a standard-for-his-weight-regimen off 11 units of long-acting Lantus and 1 unit of short acting Novolog for every 15 grams of carbohydrate he ate.  Within about 2 days, he was battling chronic low blood sugars.  I called the doc, and was told to cut his Lantus by 1/3.  I could see he was still running low, though, so I also increased his Novolog ratio to 1 unit for every 20 carbs.  Still struggling with chronic and severe lows, including blood sugars in the 30’s and 40’s (normal levels are between 80-120), I decided to change him again.  I cut his Lantus by 2/3 of the original dose, and increased his Novolog ratio to 1 unit per 40 carbs.  This change helped a little, but he still had lows.  The poor child was sick of food, as he had to eat constantly to keep his blood sugar up.  I had to test him 1-2 times during the night, and often had to feed him a snack to hold him until morning.  He spent several evenings in tears, and often slept on the couch (close to our bedroom) or even with us because he was so afraid of getting too low during the night.  As soon as he awoke in the morning, he would check his meter to make sure I had tested him during the night (which meant I could never oversleep and skip a test I had promised!).  It was a stressful time.  Thankfully, a couple days later we had a follow-up appointment.  We discussed the issue.  The doctor was hesitant to make additional changes.  Her concern was that, if we reduced his insulin too much, he would assume he was cured and be devastated later.  I assured her that was not the case, he understood completely because he had grown up with me having the disease, and we were far more concerned about his chronic and dangerous lows.  She hesitated, and explained that it was very rare to have a child diagnosed in such early stages.  I agree that we were, indeed, blessed to be followed by the TRIGR study, so we knew to be watching for the symptoms at the time.  In any case, she gave me a plan of action, and we left.

Over the next week, we completely weaned JR off his Lantus–the long acting insulin that is designed to stabilize blood sugar levels throughout the day.  We also continued to reduce his Novolog–the short-acting insulin designed to stabilize sugar spikes at meal and snack times.  We monitored his patterns, and finally, one day, he took no insulin at all.  And he did really well.  He didn’t have a single low!  In fact, his sugar levels were perfect all day long!  That was back in April.  Since then, he has taken no Lantus at all, and he only takes 1 unit of Novolog for every 40 carbs, which, with our diet, only happens about 1-2 times per week.  That’s right, my Type 1 diabetic son only requires about 1 unit of insulin when we eat the Sunday buffet at our local restaurant, or have the occasional, high-carb pancakes and syrup for dinner.  That’s it.  He still tests his blood sugar level, but only does so about 2-3 times a day–and mainly for his own security.  Interestingly, the biggest struggle he continues to have is low blood sugars.  Despite the fact he takes no insulin most days, almost any type of play or other exertion will cause his sugar levels to drop as if he was on insulin.  As a result, he still has to carry his little kit with him, which contains his bg monitor, glucose, and snacks to treat his lows.  Lows now range between 50 and 70 though, rather than the previous 30’s and 40’s.  On rare occasion, a meal might cause his sugar to get into the 200’s, but we rarely treat it, as his body does pretty well bringing it down without assistance.  In fact, we’ve found additional treatment with insulin causes a severe low later, which is more dangerous than a rare high level.

As it turns out, no one seems to be able to explain what is going on with him.  Clearly, he is in what is known as the “Honeymoon Period,” where the pancreas is still producing some insulin, but is slowly killing its remaining islet (insulin) cells, and he will be fully insulin dependent in the not-too-distant future.  The doctor’s guess is, considering the early stage we caught him, and the fact his pancreas got a bit of a break with the help from insulin in those early weeks, he may have 12-18 months before he reaches that stage.  In the mean time, she has told us to enjoy the time we have.  What she, nor anyone else can tell us, is why he continues to battle low blood sugars.  It seems to be an anomaly, and even the TRIGR staff we have spoken with, who are experts in the field of Type 1 and pediatric diabetes, have never seen this before.  As best we can all surmise, his body just doesn’t really know how to “calibrate” his blood sugar levels anymore, and for whatever reason, errors on the side of overproducing insulin (causing low levels) rather than underproducing (which would cause highs).

As busy as we have been this spring, this development has been a true blessing, as it bought us a few months where I didn’t have to focus so much on his health.  Plus I was allowed to sleep, which is something I desperately need to get through the day.  It has also done a tremendous amount I’m sure in giving him time to adjust to the idea, without losing all his eating freedoms at once–not that he eats that unhealthy to begin with.  Probably even more of a blessing is the fact that those around him, folks who might be prone to panic at the idea of him eating the wrong thing or having a severe sugar level, have been able to relax knowing he is pretty independent and can be treated as “normal.”  They are able to watch him test, ask him questions (which he is very good at answering correctly), and generally this seems to put their mind at ease.  He is still looking forward to getting his alert dog, and we are hoping to later this summer or early fall.  I’m hoping the more stable blood sugars will actually help train the dog faster because it is easier to get the dog accustomed to his “normal” smells, so it is more aware of his low or high smells.  This is a huge bonus when training a new pup to these scents!

It will be interesting to see how things play out over the next year or so, but we certainly count our blessings.  JR does not take it for granted, and often comments about it.  He knows what his future holds, but this honeymoon time seems to have eased his fears somewhat, as he feels more in control, I guess. In the mean time, I’ll enjoy having a non-insulin-dependent Type 1 diabetic child.

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