Managing the Symptoms and Side Effects of Diabetes and Medications
There's little doubt that living with diabetes brings surprises almost every day, particularly its physical side effects and impacts, ranging from the calloused fingers of daily BG testing to the longer term-side effects like eye and kidney damage. Yet nothing prepared our family for the unusual and difficult-to-diagnose side effect that diabetes has rained down upon my son during the last five months.
In mid-September, as my son was trying to acclimate to his freshman year in high school, he began complaining of intense itching attacks that started at his feet and spread throughout his entire body, including his scalp. The "itches" as we have come to call these attacks occurred whenever his body temperature was elevated, like when he was in PhysEd, or when he became nervous or stressed (which is often in the life of a teenager), or if he was sitting in the direct sunlight. According to my son, the itches felt "like a million bees swarming under my skin and stinging me."
His only relief? Time and some vigorous scratching.
The first physician's visit in what turned out to be a very long journey was to our primary care doctor, who, in reality, came closest to the actual issue before we had it diagnosed. Our doctor felt the symptoms were a systemic reaction caused by some allergen, possibly due in part to my son's diabetes.
We had routine blood tests done and made an appointment with an allergist. While at the allergist, my son was tested for tens of every-day allergens, which netted us this good news: we got to keep our cats and dog. However, the bad news: no diagnosis for a root cause of the "itches" beyond a possible case of scabies (which proved naught).
As the weeks passed and my son tried to carry on the normal life of a high schooler, his symptoms continued to increase in severity and frequency. Our next focal point was a potential allergy or intolerance to insulin. Working with our CDE and primary care doctor, my son went off the pump and switched from Novalog to pen injections of Lantus and Apidra. The results were some very crazy BG readings and but continued and increasing itching.
Things turned terrifying in early November when my son texted me from his first period English class saying that the "itches" were so bad that he could barely walk.
Thank goodness that our primary care doctor is available by phone even when he's on vacation. He ordered more blood tests and a chest X-ray, and we began chasing down some of the more scary causes that have systemic itching as a symptom, starting with Non-Hodgkin's Lymphoma. A trip to a pediatric hematologist oncologist and more blood work offered us a welcome reprieve: no signs of blood cancer.
However, the itching attacks continued with heightened ferocity, forcing my son often to leave in the middle of his classes to get some relief. Fortunately, because of his Type 1 Diabetes, he is able to exit class fairly freely and most of his teachers and the administrative staff were exceptionally supportive.
The next diagnosis we began exploring were carcinoid tumors. It was at this point that I began to believe that something truly sinister had a stranglehold on my son and I was unable to wrest him free. As a mom of a child managing Type 1, I often envision myself as a Medieval warrior, decked head-to-toe in chain mail and armed with swords, fighting a three-headed fire breathing dragon. With this new threat, I found myself standing ready, armor on, but this time I couldn't see the threat. Instead I was facing a dark, stealthy foe, one that seemed to strike without warning or reason, much like the Angel of Death in the movie The Ten Commandments of Charlton Heston fame.
Thankfully, we ruled out carcinoids tumors when we went back to our endocrinologist, who felt that the issue was immunological. Our endo was able to get us an appointment with a much respected immunologist the following week.
Within two minutes of our first visit with the immunologist, we had a diagnosis. Bottom line: my son has heat induced subcutaneous cholinergic urticaria caused in part by the stress to his immune system by his diabetes. What's that in plain English? He has heat hives that are under his skin that cannot be seen and occur whenever his body temperature elevates.
He's managing the symptoms now with the antihistamine Xyzal ( the generic of this is Zyrtec). His symptoms are now manageable, whereby the frequency and severity of his attacks are now at a 5 of 10 versus a 10 of 10 a few months ago. Time will tell if this will be our continued path of management or if we will need to explore other options.
Will he have this condition for the rest of his life? Unlike his Type 1, there is a very good chance that his "itches" attacks will subside over time - but he must be aware that they could reappear at any time, particularly if he is experiencing high levels of stress.
What a wild ride it's been.