Are are any of your Type 1 children smaller than their peers?

Our son Dominic is 11 and was diagnosed one month after turning six. Since that time he has grown very little. He is 50 inches tall (about the size of a 7/8 year old). We have done numerous bone age scans, blood wok out of the kazoo. We even took him to the Barbara Davis center for answers. His IGF is off, his growth hormone is borderline. However the final diagnoses(after 5 years of pleading) is idiopathic short stature. Which basically means there is they (doctors) can’t find a reason.

We were told to start him on growth hormone (30,000 dollars a year)…I have always felt that his height is diabetes related but I get no help from the medical community. Basically put the kids on more synthetic drugs, and who cares what the actual problem is.Let’s just treat the symptom.

So what I really want to know is if any of your children have experienced this problem?

(Funny thing is…I had him tested for food sensitivities and Candida…he tested extremely positive for Candida and had 18 different foods that his blood reacted to.Since beginning treatment he has grown 1/2 an inch in a month.)

Please tell me that this simple answer has not been out there this whole time.
These tests were not done by his Endo or primary care physician…as a matter of fact they are extremely against me having him tested and treated.

Hi, my son was 3 when diagnosed and is now 7. Since birth, he has maintained the same growth curb (he is average height and weight), so no D has not affected his height.

Well controlled diabetics grow normally to their expected midparentral height and genetic make up.If a diabetic child does not have normal growth velocity for his age,he has to be evaluated for diabetes control,celiac disease,hypothyroidism,and generally.If his growth velocity/cm/year is normal,reassurance is the answer.

All the things you mentioned have been considered…celiac’s has been ruled out, his thyroid function is “normal” and his diabetes is under good control. Of course we have the same ups and downs as the rest of people battling this disease. We live in Hawaii and as a rule people here tend to be smaller than our “mainland” counterparts. That said, Dominic is only a 1/4 Asian. The rest is well from all over! Even here he is so much smaller than his peers, it’s crazy when we travel to the mainland then we can really see how small he is. His father and I are not vary tall but we grew along side our peers not below. As far as his growth velocity goes thats a joke! He was 46 inches when he was 7 and now at 11 he is 50 inches. If my gut told me that everything was normal I could let this go, but it doesn’t.

Boys in general slow their growth around 11-12y,a known phenomenon expressed in growth velocity chart.Was he growing more than 4c/y every year since diagnosis and in the last year he slowed down? what is his bone age? Do you have history of delayed puberty in your family?

His bone age was 11.5 yrs when the last one was taken and he was 9 yrs and 8 months. No we do not have a delayed growth issues in our family. Dominic stopped growing during his 6,7. and 8 years. Only recently has he changed from a size 6 to an 8.

My son Michael is still growing strong. But I always did wonder why they take such careful height measurments every three months, almost like they expect there to be problems. My older son, who is not diabetic, did experience the slower growth that is common for 9 or 10 year old boys.

I was a type 1 child and grew normally. Never known it to be an issue.

Hi there. I have to say my son was real poorly with very poor control for a couple of years. Mind you it’s not that much better now, but he did not grow at all for over a year and his brother who is 23 months younger than him over took. He then grew at a very slow pace. He was diagnosed at 8 and barely grew until mid way through 10. Then slowly progressed until 11 when he started eating everything in sight and from hitting 12 he’s growth has gone mad and he is now a head taller than his brother. I did have a stage of seriosly worrying!I hope this helps

Any thing helps! I feel incredibly responsible for everything Dominic goes through. I am searching for the answer…if there is one. I simply do not feel he is just destined to be short.

It sounds like you are having a low time at the moment and getting support from us people in a similar position does help! It is hard to watch a child go through so much and you are unable to change it. But you must realise that just by being there and supporting him through all the odds and the things that life throws at him is as much as you can ask of yourself. That is what a good parent does and Dominic will feel and sense that! As for worrying about his growth I truely believe if you feel something is wrong and it is making you unhappy, you need to wiegh out all the other possibilities. This way you will know for sure and you can put your mind to rest. I wish I could take Jay-Jay’s diabetes away from him sometimes and feel guilty that I can’t do that even though logically I know it’s not my fault! We find the best way forward is to be a positive about anything that arises as possible, do whatever we can to deal with whatever is happening and then go from there.

I’m curious, how was celiac “ruled out”? Sometimes the testing they use isn’t necessarily accurate if they’re focused solely on a single antibody. It might be worth cutting gluten out of his diet for a few months and see if you notice any differences, not just in his growth but in his overall health. Gluten intolerance and Type 1 have a tendency to co-occur, and while he may not have full-blown celiac (which is an auto-immune problem) it’s still possible that he is gluten sensitive, and the inflammation associated with that sensitivity may be causing difficulty in absorbing nutrients.

Kudos to you for being persistent in the face of medical opposition. Not many people would have thought to test their son for candidiasis, much less a full range of food allergies/sensitivities.

All the “test” were ordered and interpreted by our Endo and Primary…there was never any real conclusion. Of the 18 foods he is sensitive to the ones that rated the highest are wheat, oat, rice, rye, barley, egg, milk, and cheese…oh yeah and to his delight Asparagus! Needless to say most of the foods are NOT gluten free! We have been treating the Candida with amazing results! He was 49 inches in August 08 and as of mid November he was 51 1/2 inches tall. YAY! He began treatment in mid September. Not only has he grown but his stomach troubles are less persistent, his BM’s are less “interesting” smelling! And his endless cravings for sweets has diminished. After the holidays we are going to get real serious with cutting out all the foods on his list. This is going to get real tough for him, but the reward is better health and quality of life.


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.

Thank you for you well thought out reply…I too have a tremendous amount of weight filled with all those feelings you described. Dominic is my heart and I want so badly for him to have a long, healthy beautiful life. As much as I tell him he can do anything, be anything, there is a part me that just doesn’t know.

As far as the growth hormone goes, I have about 30,000 dollars worth sitting in my fridge. I cannot bring myself to give it to him. In a way I feel I would be telling him there is something wrong with him. If there is no “true” medical problem, what is there to fix? Do I pump him full of more synthetic medicine? If he is short because that is the way the cookie crumbled…then I will let it be. For his father and paternal grandfather Dominic’s stature is a huge issue. They believe his stature will affect his future (sports, career, even eventual love interests).

I laughed at your description of Ellie being tossed around! Dominic’s friends also pick him up and pat him on the head. Like he is a cute doll! That drives him crazy…

Have you ever seen the t.v. show Little People Big World on TLC? It features a family with two parents who are little and one of their three children is a little person. Dominic loves that show and he has decided even though he is not a “little person” he can do all of the things average size people do. There are much worse things than being short. If anything he recognizes that people sometimes have zero control over what they deal with. That you are dealt the hand you receive and what truly matters is how you play those cards. At the tender age of 11 he like your Ellie have faced more than most their age. So when I get overwhelmed with all the diabetes management and energy sapping worrying, I remember Dominic NEVER has a break. If he can do it then I have no excuse.

Knowing you father has lived a long life with Type 1 gives me hope. Hope that Dominic will live. Hope…what a concept.