Understanding Your Child's Diagnosis


Understanding your child's diagnosis can be challenging, especially when you may be experiencing shock or denial.  It is important to take in as much information as you can about your child's diagnosis, however, because the more you know, the more you can advocate for your child, take steps for their comfort, and, most importantly, understand what is happening and when you need to alert your child's medical team to problems.

   Step-By-Step Guide


  1. Take notes during your child's doctor and specialist appointments.  You will want to write down the name of the diagnosis and any information about the diagnosis that you can, including statistics, prognosis, treatment options.  You will also want to write down where and when the treatments will take place.  
  2. Go to the website, MedlinePlus.  This site is by the National Library of Medicine and the National Institutes of Health. 
  3. Search the site for your child's diagnosis.  Go to the main page for this diagnosis.  Note:  Start by searching the broadest category - i.e. 'Congenital Heart Defects,' or 'Genetic Disorders,' and see if your child's diagnosis is listed on that main page -  search for the sub-category of your child's specific diagnosis if you don't see it listed. 
  4. Bookmark the page with your child's diagnosis.  Go through it piece by piece, including the explanation, treatment options, symptoms, articles, organizations connected to the diagnosis (i.e. Autism Society for the diagnosis of autism), alternative treatments (when available), articles, studies and more.  This comprehensive site is your best resource for understanding your child's diagnosis.
  5. Start a new Bookmarks folder for the diagnosis to keep your research in one place and easily accessible.
  6. Bookmark the other sites, articles and information you pull up from the main page on MedlinePlus.
  7. If treatment takes place in another city and travel will be involved, include the hospital or treatment center's website in your folder.  
  8. Start your child's Care Notebook.  Get a three ring binder, a pack of dividers and a pack of sheet protectors.  Start your notebook by printing out information on your child's diagnosis, treatment options, prognosis, place of treatment, etc.  Hole punch or put this information in the sheet protectors - put your notes from the doctor's office here, as well.  Place a divider in the notebook labeled "Diagnosis Info." - or use the specific name of your child's diagnosis (i.e. Autism Info.).


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