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Not Responding
“My child is being treated for a growth disorder, but he/she is not responding as well as I’d like.”
What might be happening?
If your child is being treated for a growth disorder and is not responding as well as you’d like, a number of things could be happening:
  • The problem is being addressed, and your child is responding as is to be expected, even though the response is not as great as you’d like (remember, reasonable expectations are key)
  • The problem is being addressed, but the results are not as good as they could be because the treatment plan is not being followed exactly or the dosing may be inadequate. Injection site care and rotating locations of the injections may help you get the best out of the treatment regimen. You may want to talk with your doctor or nurse if you have any problems with the injection sites while on a growth-promoting treatment. Following the treatment plan exactly and not missing any scheduled treatments—also known as compliance—is especially important when medication is involved
  • The problem is being addressed and the treatment plan followed, but for some reason, your child’s response is not as expected. Every child is different, and not every treatment plan works for every child
  • There may be another explanation for your child not achieving the desired result
What can I do about it?
If you find yourself in this situation, it is important that you are an advocate for your child and take whatever steps are necessary to become comfortable with his/her treatment plan and the response you’re seeing. There are a limited number of years in which your child can grow, and there are situations where waiting may eliminate certain treatment choices. Addressing a growth disorder with the most beneficial treatment plan as early as possible provides the best chance for your child to attain his/her best height potential.
The following is a list of steps you can take to ensure that your child is receiving the best possible treatment:
  • Learn all you can about growth disorders in general and the growth disorder your child has been diagnosed with in particular, including available treatment options and dosing regimens (this Web site is a good place to start; the MAGIC Foundation is also an excellent resource)
  • Discuss compliance strategies with your child’s doctor and/or nurse. You may also want to encourage your child to utilize the Way to Grow! "High Five" Program (PDF); in addition, Worksheet I: Compliance Calendar (PDF) may be helpful in this regard
  • Make sure all your questions have been answered (a follow-up visit is a good time to do this). Some questions that may be particularly important in this situation—as well as room to write out your own questions—are listed in Worksheet J: Questions to Ask When Your Child is Not Responding to Treatment as Well as You’d Like (PDF)
  • You may want to revisit the diagnosis with your physician
  • Talk to a trusted advocate (such as those working with the MAGIC Foundation) to obtain additional information on next steps you could take
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