At some point in your journey to diagnosis for a chronic, rarely diagnosed, or “zebra” illness/disorder/syndrome, you start The Notebook. The Notebook will contain important information about your child’s (or your) health, medications, supplements, and more. Ours was a random pink binder that I had shoved under a desk. About five years in and several doctors later, I realized I had to be ‘that mom’; it was getting so stressful trying to remember every previous incidence, test and result. It was much easier to print and compile the previous doctor’s information to share with the next, or to look back on if I needed to. If you find that it’s time for you to compile a Notebook for yourself, here’s what I suggest you include:
- Your child’s growth charts
- Vaccination records
- Names and contact for any previous PCP or specialists
- Previous doctor visit summaries that are related to what you’re seeking help for
- Previous labs or testing done and findings
- Allergies
- Food/ behavioral/ sleep journals (whatever makes sense in your case)
- Personal notes- I ended up having to compile a month-by-month summary of the regression I was noticing in my child, adding to it as the months passed.
I think it’s important to add personal notes also because it’s easy to forget when things are hectic, you’re anxious, or the doctor is intimidating—because some of them are. Most of these are easily collected in the online charts widely available now, but if it’s not for you, then you can ask the front desk for your child’s records. If you’re late in the game, doing this can seem daunting, but trust me – and all the other Notebook Moms of the world – it makes things so much easier in the long run!
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