I share both your experience and your concern. My daughter, Ellie, who is now 9, was diagnosed at age 3. She was small then and remains small now, although she has consistently grown along the same percentiles for height and weight. She lost her first tooth at the age of seven, with her grown up front teeth only coming in at age eight. She seems very small in comparison to her friends and fits easily into a 6X.
She is hypothyroid, though this was picked up within the first year and her thyroid function tests have been normal since she has been taking thyroxin. Celiac disease was raised as a possibility because she has elevated IgA, a slightly abnormal immune profile and a history of constipation. She was tested, first through an endoscopic biopsy and then through a blood test for some specific celiac-related genes. The tests were both negative and, although reassuring, the possibility that she will, in the future, be definitively diagnosed with celiac disease cannot entirely be ruled out.
So, I’m in a similar boat, although her IGF has not been abnormal, and I’ve been asking similar questions to the staff at the Joslin Clinic in Boston. As far as I have been able to determine, there is no definite association recognized between Type I and small stature. The anectodal evidence is interesting, though, in my family. My father has been a Type I diabetic for 70 years, diagnosed at age 4. He was also very small in his youth (nicknamed, by his high school class, as the “Count of No Account” because of it). The good news is that he grew into a normal sized man. The even better news is that, having turned 75 two weeks ago, he has very few sequelae of diabetes (no kidney disease, no heart or peripheral artery disease and reasonable overall health).
I cringe sometimes when Ellie’s friends pick her up and fling her around (the small size invites that sometimes), but, thankfully, she’s comfortable with both her stature and her diagnosis (wearing her pump like some kind of a hip ipod like badge of honor). It may be that as she enters adolescence, it will become an issue, and I’m sure that societal pressures are greater on boys versus girls for kids your son’s age (the whole rough and tumble sports thing).
If Dominic has been diagnosed as “idiopathic” short stature, I would let go of any worries that is diabetes-related (which it still could be, although not yet a formal association). I would focus on your decision about whether or not to treat him with growth hormone. I am trained as a pediatric surgical subspecialist (with no expertise in the endocrine, GI, or other medical-related areas, so I share my perspectives with the disclaimer that I have zero credentials in these pediatric areas). In a handful of small stature kids (under my care for completely unrelated problems), I have witnessed the success of growth hormone in accelerating growth (treatment coordinated by my endocrinology colleagues).
I wouldn’t hesitate to ask your physicians for a formal endocrine opinion, so you can find a specialist you are comfortable with to discuss the risks and benefits of growth hormone therapy and whether there is a time window of recommended treatment. Bear in mind that Dominic may grow on his own, anyway. Could you start growth hormone when he is 14 with the same effects? (I have no idea). There are likely some good online non-diabetes-related parent communities addressing short stature and growth hormone therapy. Having extreme personal experience with a tight budget, the costs seem staggering. I’m sure that an endocrinologist might offer some perspective on possible ways to get your insurance to cover the costs. Also, definitely keep going your the food allergy explorations…low cost, correctable and possibly with good results (that you can share with the rest of us).
I just wanted to share that I’m a mom with similar concerns and that I think there are still alot of unanswered questions in the world of childhood diabetes. Even more, I wanted to let you know what brings me hope. On the days I feel overwhelmed by Ellie’s diabetes, engulfed by worry about her size/possible future diabetes complications/etc. and guilty that my genes in some way inflicted this on her, I look at my dad. In an era before pumps, CGM and synthetic insulin, he has successfully combined a full, happy, healthy and productive life with 70 years on insulin.
By the way, Ellie’s middle name is “Makana”, after the peak on Kauai, and in honor of the Hawaiian word for “gift”. Mahalo for sharing Dominic’s story.