Question from Simsbury, Connecticut, USA:

My six-year-old son has very high functioning autism. Last Tuesday, he wet his pants at school and started urinating frequently. He also wet his pants at home a couple of times, which is unusual for him. My first thought was that he could have a UTI. But then I noticed that he was going a large amount of dilute urine. He complained of feeling tired on Wednesday so he stayed home from school. The symptoms continued through the week but I didn’t notice him drinking a lot so I thought he was fine. I mentioned it to one of the doctors at work (I am a nurse and work in a hospital). She said that I should check his urine for ketones just in case. I checked them and there were small ketones but no glucose. So, I asked what I should do and she said I could check a sugar at home just to be safe but he’s probably fine. I expected his sugar to be completely negative. It was 110 mg/dl [6.1 mmol/L] before eating. I checked it fasting in the morning and it was 102 mg/dl [5.7 mmol/L]. Then, the next two days, his fasting blood sugar was 101 mg/dl [5.6 mmol/L]. Before dinner last night, it was 149 mg/dl [8.3 mmol/L]. I didn’t check it after dinner because I was worried it would be higher. He did have a snack after school about two hours before that. At bedtime, it has been 115 to 121 mg/dl [6.4 to 6,7 mmol/L]. It seems to be 110 to 130 mg/dl [6.1 to 7.3 mmol/L] most of the time. On Sunday, after school, he complained that he didn’t feel well. I checked his sugar and it was 90; once he ate, he was better. After school yesterday he also didn’t feel well and his sugar was 93. Again, once he ate, he felt better. Those are the only two times that his numbers have been in the 90s mg/dl [5.0 to 5.5 mmol/L]. It seems a little strange that he feels so lethargic when the 90s mg/dl [5.0 to 5.5 mmol/L] are a perfectly normal number. He has been having periods of lethargy and begging for food over the past couple of months but I just figured he was being impatient. His urinary frequency is gone now and he hasn’t wet his pants this week. He is having the periods of complaining that he’s very tired and those correlate to the blood sugars in the 90s mg/dl [5.0 to 5.5 mmol/L] perhaps by coincidence.

On a gluten free and milk free diet, my son became sick with some sort of virus last summer and, after that, his behavior was horrible, bad enough that his in-home service people (he gets autism services) recommended hospitalization. His neurologist wanted him on risperidone but I didn’t feel comfortable with that because of the health risks. Out of desperation, I took him to a naturopath who ran laboratory tests. He was low in Vitamin D, RBC Zinc, and B6. They ran celiac laboratory testing but the only one that was elevated was the antigliadin IgG which is least specific for celiac. Since he had five loose stools (and incontinence) daily, they said to try the gluten free diet and see if it helped. Within two months, his stomach issues were gone. He now has completely normal bowel movements, but if he gets exposed to gluten, the diarrhea returns that day. The naturopath feels that he has an intolerance to gluten, not celiac, which can be common in kids with autism. His behavior at home was much better once on the special diet with no need for psychiatric medication. He also has transient eczema but that has been much better lately. We do not have diabetes in the family. I am wondering if I should bother taking him to an endocrinologist or just watch for symptoms at home. I would rest easier if he weren’t having sugars in the 120s to 140s mg/dl [6.7 to 8.2 mmol/L] (sometimes before meals and sometimes after, the 149 mg/dl [8.3 mmol/L] was before dinner). Yet, I know that he doesn’t have diabetes with those numbers and there is really nothing that we can do to stop it if he is going to get it. He’s not overweight at all. His BMI is always around the 50%. My one hope for keeping an eye on it is to catch it before he gets really sick. I know of so many people that develop symptoms and by then are in DKA and need to be in the hospital. Then again, maybe his numbers just run a little higher and maybe it’s normal for him. I have been checking my own sugars this whole time just to compare (because I am eating the same things as him) and mine are almost always under 100 mg/dl [5.6 mmol/L], more like 80s mg/dl [4.5 to 4.9 mmol/L], never over 120 mg/dl [6.7 mmol/L]. Part of me wishes that I just ignored the whole thing, but I tend to do that a lot when he is sick (because they are never as sick as the patients I see) and he ended up needing nebulizer treatments last winter after I brushed off his symptoms for two weeks. He also wasn’t evaluated for autism until he was almost three because I was in denial over his symptoms even though several other people urged me to call early intervention. I was insistent that he was fine. Now I’m worried that I’m becoming paranoid. The good thing is that he likes getting his sugar checked. I don’t think I would have the heart to check it if he cried or protested.

At a more recent visit to the pediatrician, my son’s laboratory work showed small ketones, trace protein, and urobilinogen 2.0. He had blood drawn which was fine–WBC 4.2, RBC 4.32, H/H 11.1, 34.5. Creatinine 0.3, BUN 11. His glucose was 68 mg/dl [3.8 mmol/L], which was funny because he was eating tortillas and drank juice in the car on the way there. (this wasn’t fasting obviously). His LFTs (liver function tests) were all normal and they checked a Free T4 which was 1.08. Today, he had an HbA1c and it was 5.8%. His doctor wants him to see a nephrologist about the ketones. I would like him to see an endocrinologist and/or a gastrointestinal specialist (since he has stomach pain still and has a history of GI issues). My goal is to see as few doctors as possible and figure out what, if anything, is going on as soon as possible. At times, my son seems to feel great, and other times he is feeling really poorly. What do you think is going on?