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No Diagnosis
“We’ve been to see a doctor and have been told not to worry about my child’s growth, but I still suspect something is wrong.”
What might be happening?
If you are concerned about your child’s stature, yet a visit(s) to his/her doctor(s) do not result in a diagnosis and/or specific treatment plan that you are comfortable with, a number of things could be happening:
  • All appropriate tests have been run, and your child’s doctor has determined that nothing is out of the ordinary
  • All appropriate tests have been run, and your child has been categorized as having familial short stature or constitutional delay of growth. While children with such diagnoses are shorter than their peers, they may reach their full adult height potential without treatment. In other words, many of these children may get there, just a little bit later than normal. Talk to your doctor if you are concerned about any specific issues that your child may be facing (right now) because of his/her short stature
  • There may be another explanation for your child’s short stature
What can I do about it?
If you find yourself in this situation, it is important that you advocate for your child, and take whatever steps are necessary to become comfortable with his/her diagnosis (or lack thereof). The reason this is so important is there are a limited number of years in which your child can grow, and there are situations where waiting may eliminate certain treatment choices. In addition, addressing a potential growth disorder as early as possible provides the best chance for your child to attain his/her height potential.
The following is a list of steps you can take to ensure that your child has been properly diagnosed:
  • Learn all you can about growth and growth disorders (this Web site is a good place to start; the MAGIC Foundation is another excellent resource)
  • Make sure all your questions have been answered. This can be done via a phone call to your child’s doctor, during a follow-up appointment, or during an appointment scheduled just for this purpose. Worksheet G: Questions to Ask Your Doctor if You Are Concerned With Your Child’s Diagnosis/Lack of Diagnosis provides some questions that may be especially important in this situation, as well as room to add your own
  • If you have not yet been referred to a pediatric endocrinologist, ask if such a referral may be appropriate
  • The MAGIC Foundation, a national non-profit organization created to provide support services for families of children affected by a wide variety of growth disorders, is a good source for the name of a pediatric endocrinologist in your area
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