From the USA:
Our 13 year old daughter saw a new endocrinologist a month ago who noted that she was in the 10th percentile for height and is barely showing any signs of puberty. I asked her if diabetes could slow down puberty, and she said it can go either way, but she wanted to look into it and she ordered a battery of blood tests.
The tests revealed that our daughter has premature ovarian failure due most likely to an autoimmune disorder. Her thyroid also has antibodies, which indicates she will more than likely be one of the 20% of people with type 1 diabetes whose thyroids have been hit by an autoimmune disorder. That's treatable, but the ovaries aren't. We spent the last 10 days waiting for the results of a chromosome study to come back to rule out Turner's syndrome. We were thankful that it wasn't because it presents other complications as well. So, we still don't know why she's not growing and are going for an IATT (insulin arginine tolerance test), and also the doctor will test for the antibodies she suspects are responsible for the ovarian failure.
I know we all share the same feelings regarding our children having to have diabetes. Many of your children also suffer from further problems such as asthma and other syndromes. How much do our children have to bear? Every day I get a little better about dealing with this, but in truth, it is breaking my heart. When and how do you tell a 13 year old girl that she's incapable of producing children?
There are some great psychology books, one called When Bad Things Happen to Good People, that you may want to read. Talking to your daughter's diabetes team, perhaps to the psychologist or social worker, or to the doctor or nurse with whom you have a good relationship, about your feelings of being overwhelmed may also help. There may be some support groups at the hospital or clinic that would allow you to meet with other parents. The local Juvenile Diabetes Research Foundation or American Diabetes Association may also run support groups. Many diabetes camp programs also offer family and parent support groups. All of these are options for you to consider to get some advice and support for all these problems.
The simple answer is that there is no right time or right answer. All depends upon what questions your daughter is asking. Your diabetes team would likely know you, your family and your daughter quite well so that they should be able to help structure how to go about answering such questions. They are always difficult sessions. My best advice is to be honest, do not provide excessive information but keep lines of communication open so that as your daughter matures she can feel comfortable not only with her parents but also with the health care team to discuss things in more depth.
Original posting 1 Oct 2001
Posted to Other Illnesses
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