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By Melissa Anne Benoit
Endocrinology nurse at the Hospital for Sick Children in Toronto, ON.
There may have been a lot of doctors’ appointments leading up to the diagnosis of growth hormone deficiency (GHD) and now that the diagnosis has been made, you and your child will start to see an endocrinologist on a regular basis.
An endocrinologist is a doctor who looks after hormones in the body and helps them get to the right levels. Hormones control everything about the body including regulation of metabolism, the immune system, reproduction, hunger, mood, sleep, and of course growth! Here’s what you can expect:
During the first appointment, you and your child will spend about one hour with the endocrinologist. You will be asked to share a full history of your child from pregnancy and birth to the present. You may also be asked about your own growth patterns and when you started puberty. The doctor may request that the child has a bone age x-ray during the visit and order blood work and special tests to rule out other causes of short stature.
Follow-up appointments are typically shorter and more routine because the clinic staff will likely know the child by then but still be prepared to be at the clinic for a few hours.
During the first year on growth hormone treatment, children are seen approximately every four months. After that, they typically see the endocrinologist every six months. When puberty starts, the child will go back every four months because so much change happens during this critical time.
A typical visit to the endocrinologist starts with a nurse’s assessment. The nurse will measure your child’s height and weight, review medications, and ask how injections are going. Next, the doctor will do a physical assessment, which includes listening to the heart and lungs, and assessing pubertal status. The endocrinologist will write a new prescription for growth hormone (GH) and talk about any side effects your child may be experiencing from the medication. If there are concerns about the child’s weight, a dietician might be called in. If the child has fears about blood work or injections, a child life specialist, psychologist or social worker can help.
The endocrinologist uses three types of assessments to help monitor GH levels.
Blood work is done as requested by your child’s doctor to measure IGF-1 levels. IGF stands for Insulin -like Growth Factor 1 and this measurement tells the endocrinologist if the GH level is appropriate and it can indicate whether or not the child is taking the medication.
A bone age x-ray is an x-ray of the left hand. It is done every 18 to 24 months (or as requested by the doctor) to assess how much growth potential is left in the bones. The bone age x-ray is especially important during puberty to determine how much longer to expect the child’s height to increase.
A puberty assessment helps the endocrinologist determine how far through puberty the child has gone.
When you’re heading off to see the endocrinologist, remember to bring these important items with you to help make your visit go smoothly and quickly:
Since every child is unique, it’s hard to know what to expect with GH therapy. That’s why it’s important to talk to your nurse and endocrinologist and be clear about what your treatment expectations are.
The nurses and doctors are there to make the journey easier, but they can’t do it if they don’t know what issues need to be addressed. Struggles with adherence – that is, taking the medication exactly when and how it’s been prescribed – can be difficult to talk about but know that the doctors and nurses are not casting judgment.