Dear Parents,

Craniosynostosis can be a difficult road to navigate.  It also requires follow up throughout childhood. You may relocate, change medical insurance or have additional questions.

As your child’s healthcare advocate and voice, it is important that you maintain your child’s health care records.

Time and time again we see families struggle to gather up what they need, when they need it.  It may be a scan from 2006, or an MRI from 2010.  What exactly did that report say?  Can you remember?

When your child is sent for an Xray, CT Scan, MRI, MRV, EEG, etc, you can simply request a copy of all images to be put on a CD for your records.  Typically the report will also be added to the disc. 

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After each encounter with a specialist, we recommend that you ask for a copy of the clinical notes.  They are usually sent to you within the week.

Keep a binder with all essential medical records.

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