Wednesday, May 20, 2015

Neurofibromatosis Clinic

These yearly appointments always overwhelm me.  They make for a long day...And the information we get is quick and concentrated.

Here is some advise on how to make the most of your NF Clinic Appointment.  I hope it helps!

  • Plan for a LONG appointment! These appointments can take a while....Mostly because you are seen by a number of different doctors.  This is GREAT...But can also make for a lot of waiting around.  Bring a book and activities for your child.  (and Food.  Bring Food!)
  • BE ON TIME!  Typically WE schedule our NF appointment a YEAR in advance....So be respectful - and know that there are other families that will be affected if you are late.
  • Write your questions down (and remember to bring them with you. *lol*)  Note ANY concerns that you may have...NO-MATTER-HOW-SMALL-THEY-ARE!  
    -You will see many doctors during this visit...So make sure you are covering any issues you would like to discuss.
    Take the time to write the answers you get down....I know for me...I am great at asking the questions....But LOUSY at remembering what the doctor actually said to me.

  • GET REFERRALS!  This is a GREAT time to let-it-all-out and get answers and referrals for your child!  At our appointment...We got referrals for: MRI, Sleep study, Medication changes, dietitian, pain management clinic, behavior clinic and psychiatry appnt....Don't be afraid to ask....and be open to suggestions!

    Our appointment was a little different than yours will be....After all, I had THREE kids being seen...But the general idea, is to be ready....And try not to get overwhelmed.  These appointments are to HELP guide you through this diagnosis.

    If you have any specific questions about your NF appointment...Please comment below and I will respond.

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