Justin Delgado is husband to Kacie Doyle-Delgado, diagnosed at age 11. After more than a decade together, he considers himself to be an expert carb counter and Dexcom inserter. He graduated with his Master of Science in Finance from the University of Utah in 2013 and has been working in commercial banking since then. He attended his first Friends for Life conference in 2015 and is looking forward to volunteering with the teens.
September 8, 2003
Diagnosis and Symptoms
Question from Concord, North Carolina, USA:
My 14 year old daughter, who up until about nine months ago was in excellent health (high level gymnasts for the past four years), presented with lower abdominal cramping that was a constant type colicky pain with occasional pounding pain. It was also noted that she had wine-colored urine frequently and even when her urine was yellow, with a dipstick it showed gross hematuria [blood in the urine]. At this time also, she seemed to get every illness that passed through the gym and school. She then had oral surgery, bone removed from each side of the jaw and removal of wisdom teeth, which took taken three times the amount of time to heal according to the surgeon. Ultrasound and CAT scan showed normal kidneys with no sites of stones, 24 hour urines show high amounts of calcium, blood and oxalate. She decreased amount of hours in gym in half but progressively got increased muscle weakness, increased dizziness, lightheadedness, nausea, thirsty, hungry, tachycardia (with the feeling her heart was going to burst out of her body), insomnia, and tiredness to the point at which she felt like she was going to pass out just walking through the grocery store. Further looking at her labs, hypoglycemia was suspected, doctors asked us to do blood sugars, and we found that often she would wake up with a blood sugar below 40 mg/dl [2.2 mmol/L]. They put put her on a high protein, no sugar diet only to find that after eating a high protein diet and then exercising for about an hour, she would get rosy cheeks and dizzy and lightheaded. Her blood sugar would be very low (20s mg/dl, 1.1mmol/L), and sometimes the monitor would show "LO"). At this point no matter what she eats, then sometimes with or without exercise her blood sugar drops rapidly below 40 mg/dl [2.2 mmol/L]. She was just admitted to the hospital for the fasting test, was NPO for over 30 hours, and her blood sugar never dropped below 59 mg/dl [3.3 mmol/L]. The labs at this point have come back normal from that test, although I don't think they have gotten back the growth hormone or cortisol levels yet. They now are basically telling us that they just don't know why her blood sugar drops so rapidly (in the hospital 15 minutes after eating her blood sugar was 18 9mg/dl [10.5 mmol/L] and an hour later, lying in bed it dropped to 83 mg/dl [4.6 mmol/L], then an hour later to 65 mg/dl [3.6 mmol/L]). They they suggest a strict diet and for her to quit gymnastics and that it may be related to her kidney problem. My frustration is -- what can or could have caused an healthy high-level athlete that one day could work out with barely breaking a sweat for five to six hours a day and in a matter of less than six months, be barely able to walk through a grocery store without feeling shaky, and feeling poorly daily? We have had her evaluated by gynecology, assessed her psychology, and she is seen by nephrologist and endocrinologist. She just "wants to feel good at least for one day again", if that is giving up something she loves the she is willing to do so, but as her mom, I too just want to know what could have caused this, the unknown is so frustrating. Thanks for listening!
From this remove, your daughter’s clinical story seems to fall into two parts. First, there is the episode(s) of abdominal pain with hematuria and increased levels of calcium and oxalate in the urine, but without radiological evidence of renal calculi. This is a fairly typical story for oxalate or oxalate and uric acid crystalluria. You should talk to the urologist about possibly starting potassium citrate (Urocit-K 10meq) three times a day to alkalinise the urine and solubilise the oxalates.
The hypoglycemia seems more complicated. To be honest, my first assumption would be that the stress of the kidney problems had precipitated and appetite disorder in which carbohydrate deprivation led to hypoglycemia which of course a high protein diet would not help even though it was probably initiated to exclude reactive hypoglycemia, but this would characteristically lead to ketones in the urine, and you make no mention of this.
I am also struck by the fact that once when she was admitted to hospital after a fast she did not develop hypoglycemia, so that I wonder who is actually measuring the blood sugars and whether they are being done correctly. After this, there is a long litany of possibilities which have to worked through. The growth hormone and serum cortisol levels should be a key to an endocrinopathy, and if these are negative an inborn metabolic error of organic acid metabolism might be considered as it sometimes develops later in childhood. type 1A (autoimmune) diabetes can sometimes present with hypoglycemia as the islet cells still produce insulin though this is delayed until after the peak postprandial glucose rise.
Celiac disease which is an associated condition can also not only produce abdominal pain but give rise to hypoglycemia. After that, there are the conditions like insulinomas which produce excess insulin.
One of her doctors must have considered all this, nonetheless, and that was why she was seen by a psychologist with nothing detected. In my own experience, a medical social worker who is really experienced with this age group may be more successful than a psychologist or a psychiatrist in uncovering this sort of problem, and if there is an opportunity to get such help, I would suggest taking it.
This is not the end of the list, but I hope it will help you to be a little more informed as you discuss the problem with your daughter’s doctors.