My 15 year old son, diagnosed when he was five, has always grown very slowly, and when he was younger, I asked both the experts at this site, and everyone in his diabetes team if his diabetes was a contributor to his slow growth. The answer was always — basically — wait until he hits puberty and he will probably grow. Well, he hit 12, 13 — no growth. There was a period of time when he did not grow at all — not a quarter inch — for fourteen months, and his weight has been the same (72-74 pounds) for the last two years.

Late last year, he had a low growth hormone was “low”, but the doctor said he was not a candidate for hormone injections. She said that he had not hit puberty yet and all we could do was wait.

For the last eight months, he has been living with his dad (who also has diabetes) because we thought having a male role model would be good for him now that he is in his teens. He has a new endocrinologist who had a bone age done, and his was 12 years. His height is more in line with someone who is ten.

Most of the men in my family are tall (over 6 feet) and most of the men in my son’s father’s family are medium height (around 5 feet 10 inches). I had a very early puberty and his father had a somewhat late puberty. My son had excellent (nearly) perfect blood sugar control from the ages of 6-12, terrible control from the ages of 12-13, and good control for this last year, edging into excellent again since this summer.

Do you think there is something going on that we are missing? I do not feel that I have ever received a conclusive or satisfactory answer to my questions about my son’s growth. I also feel that his lack of growth and the fact that he has diabetes are somehow related, but I also worry that he might have another condition that is being masked because of the diabetes.

Is there a certain kind of specialist that might know more about this (rather than an endocrinologist)? Is there a condition that you are aware of which inhibits growth? Are there other tests you could suggest? For over a decade I was told to “wait and see”, and now I definitely feel that the time for getting some solid answers is here.

Your son’s blood sugar control seems to have been excellent so that I don’t think that his diabetes is directly responsible for a body weight that is now significantly below the fifth percentile level with a retarded height and bone age. At the same time, he may have what has come to be called the Autoimmune Polyglandular Syndrome. What this means is that he may have another autoimmune condition besides his diabetes. By far the most likely explanation is hypothyroidism which can be very easily assessed by a blood TSH test and then treated, if needed, by small doses of thyroxine orally. Another less common possibility is that he might have celiac syndrome which is present in about 8% of Caucasian children with type�1A diabetes. The diagnostic test for this is the serum anti-transglutaminase antibody level.

There are of course other explanations for the growth problem, but if the above tests have not already been done I would certainly suggest talking to the doctor about arranging for them before starting on any more elaborate investigation.

DOB
Additional comments from Dr. David Schwartz:

The questions you ask are excellent and pertinent and deserve answers. Unfortunately, through this forum, I may not be able to give more complete explanations. It is very telling, if well documented, that your son grew by one-quarter of an inch in the past 14 months. Is he showing any signs of puberty? Is he followed by a pediatric endocrinologist? My bias is that most pediatric endocrinologist are very sensitive to growth issues.

The history of poor diabetes control for a bit may be pertinent as there is a condition associated with poorly controlled diabetes that is associated with poor growth. it also classically is associated with liver enlargement, poor pubertal development, and sometimes round cheeks. This is called Mauriac Syndrome and is reversible with good attention to diabetes control.

Growth issues are sensitive issues; there also can be family trends. For instance, was anyone in the family a “late bloomer?” Did his doctor perform an x-ray of the growth plates to determine his bone maturation or “how much time left” the child has to grow? This is called a “bone age” x-ray. The issue of “low growth hormone” levels is always confusing. Standard growth hormone testing is very involved, generally requiring what is called a “stimulation test” whereby an intravenous line is started, medications/hormones are given by mouth or through the IV, and then blood samples are withdrawn from the IV about every 15 minutes or so for a couple of hours. Did your son have that? A screening test for growth hormone is actually a test called “insulin-like growth factor (IGF). This is done in regular blood test. Sometimes people get confused and call this a growth hormone test, but it is not.

If your son is growth hormone deficient, then he may qualify for growth hormone therapy which is expensive, time consuming, and intricate (daily injections also). However, it may reek havoc on diabetes control.

I agree that other issues should be investigated (thyroid disease, celiac disease). You should feel comfortable asking your doctors for a referral for a second opinion. They will want to see growth data (heights, weights, and the dates measurements were taken), growth charts, previous lab tests, bone age films, etc.

DS