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| Starting Treatment |
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| “My child has been diagnosed with a growth disorder, and is just now starting treatment.” |
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| What should I know about my child’s treatment? |
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| The treatment plan recommended for your child’s growth disorder will depend on the diagnosis. For example, if your child’s growth disorder is due to a hormonal issue, hormone replacement therapy may be recommended. Correctly diagnosing the specific hormone deficiency (e.g., growth hormone, IGF-1, thyroid hormone) is key to determining which hormone replacement therapy is appropriate for your child. |
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| Instead of recommending an established treatment, your doctor may talk to you about participation in a clinical study/trial. If this is suggested, it is important that you find out everything you can about the study and make sure you understand the risks and benefits. Sometimes, after starting on a growth promoting treatment, you may be asked to enroll your child in a post-marketing surveillance study. This is an observational study and is used to monitor the long-term effects of treatment on large numbers of children, so that future generations of patients may benefit from the information collected. Clinical studies and post-marketing studies both require your permission to participate; you should read the consent form carefully, and ask your doctor to explain anything you do not understand. |
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| Regardless of what sort of treatment plan your child’s doctor recommends, the more you know about the treatment, the more you can support your child! |
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| How can I get the information I need? |
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| There are a number of resources available that you can take advantage of in order to obtain the treatment-related information you need. These include: |
- Web sites, articles, magazine, books
- The MAGIC Foundation is an especially good resource
- Care should be taken when obtaining information from the Internet,
as some of what you read can be inaccurate or misleading. As a general rule, it is good to try and obtain information only from reputable sources, and to confirm the information through multiple sources
- Product-related support materials (these product-specific resources are available for most treatments)
- Your child’s pediatrician and/or pediatric endocrinologist
- Your child’s nurse(s). Nurses are a valuable resource—they will make sure you and your child receive the information and injection training that you need
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| What questions should I be asking my child’s doctor(s)/nurse(s)? |
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| Worksheet H: Questions to Ask Regarding Your Child’s Treatment (PDF) contains questions intended to help you understand the treatment plan recommended for your child, as well as space to write in questions of your own. |
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What else can I do to help support the process?
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| In addition to learning all you can about your child’s treatment plan, there are other things you can do to help optimize treatment goals. These include: |
- Making sure your expectations are reasonable (your child’s doctor will help you with what to expect)
- Ensuring that you/your child follow treatment instructions exactly, including taking any medications exactly as prescribed
- Making sure your child is eating well (that his/her nutritional needs are met) and is getting adequate rest
- Talking with your child about
- The importance of treatment
- Reasonable expectations
- Compliance, or making sure the treatment plan is followed exactly, including not missing scheduled treatments
- Addressing any self-esteem/psychosocial issues your child may have in relation to his/her height
- Staying positive and optimistic, and helping your child to do the same
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