Question from Snohomish, Washington, USA:

My nine-year-old son has been getting ill very often and it is getting worse. The symptoms did not all come on at once but they first started late summer and early fall. To date, he has had frequent illness, ear infections, etc., abdominal pain on a regular basis, frequent thirst, especially for water, occasional bed wetting again, constant multiple cold sores, headaches, and a really, really bad frequent need to urinate (he will go a full amount several times within 10 minutes, at times). When he is not feeling well, he gets very irritable. Some days, he has an appetite like I have never seen before. Some mornings, he will get up, complain he is not feeling well, eat cold cereal, continue to complain of not feeling well – stomach ache, headache – then, in the car on the way to school, he will say it seems like I am driving too fast and it is making him dizzy. At the same time, he complains that he is very, very hungry and thirsty even though he already ate. Some days, he will be playing at a friend’s, having fun and call because, all of a sudden, he feels too ill to walk home. Sometimes we will be shopping and he will become miserable and cranky. So, it is not just associated with going to school. We have been to the doctor numerous times and have gotten no answers. He has been to a rheumatologist and has a referral to gastroenterologist.

My father is type 1 diabetic and we have several family members on both mine and his father’s side of the family who have diabetes. Right before Thanksgiving, I was talking to my parents who pointed out that it sounds a lot like the symptoms of diabetes. My father brought me a new glucose monitor he had and calibrated it for me and we started monitoring my son’s glucose. He has had sporadic results in the morning. Before food, they usually run between 95 mg/dl [5.3 mmol/L] to 100 mg/dl [5.6 mmol/L], although he had one morning blood sugar of 115 mg/dl [6.4 mmol/L]. He has had random tests of 95 mg/dl [5.3 mmol/L], 111 mg/dl [6.2 mmol/L], 131 mg/dl [7.3 mmol/L], 151 mg/dl [8.4 mmol/L], 166 mg/dl [9.2 mmol/L], and as high as 242 mg/dl [13.4 mmol/L].

On Monday, when my father saw his endocrinologist, he asked about my son. The doctor explained that because the pancreas does not shut down right away, it can take a while before you see high fasting blood sugars or consistently high random blood sugars, but with the symptoms and the highs, (readings over 130 mg/dl [7.2 mmol/L], he felt type 1 diabetes was likely the case and said that I should take him to a pediatric endocrinologist, not a family doctor, to get a diagnosis. Well, I had just seen his family doctor earlier that day and he’d ordered a fasting blood glucose and A1c test even though he did not seem that there was really a reason for it and did not understand why I was even testing his blood sugar. He had these tests yesterday. I started looking for a pediatric endocrinologist in my area, but I had a hard time finding one. The only one near me was not taking patients and they only others are at the Children’s Hospital and they require a referral and I am not sure my regular doctor will give me one and even if the he did, I feel they will not like me asking. I finally found an endocrinologist who does not typically take children, only teens and adults, but said he would see him about a diagnosis and, if he found diabetes, would try to get him in with the pediatric endocrinologist who is not currently taking patients. He went to see him today. He only looked at the blood tests the regular doctor already ordered and did not do any additional testing or even check for ketones.

My understanding, although it could be wrong, is that the fasting glucose and the A1c in early type 1 in children may not be that conclusive and there is better testing that can be done. The endocrinologist said today that he did not feel his symptoms indicate diabetes and that since his one fasting blood glucose was normal and his A1c was normal at 5.4, my son probably does not have type 1 diabetes. He said that for the frequent urination, he may have diabetes insipidus or a rare pituitary gland disorder and, with regard to his other symptoms, they are out of his realm of expertise.

So, does this sound like I should push for another doctor to do further diabetic testing? Do you have any further suggestions? I am at my wits’ end. He has so many days that he does not feel well so he has missed a lot of school and had a lot of late days. The school is getting mad at me and frustrated with him. They treat him like he is faking everything and other family members are acting as though they think he is fine and blow him off when he does not feel well.