Febrile Infection-Related Epilepsy Syndrome (FIRES)

Over the past week, social distancing has become a topic of conversation. So many people aren't seeing the importance of practicing social distancing.  I made a video to explain what it means to OUR family when society practices social distancing, and to give a few tips to make your time at home with kids go a little more smoothly.  My son has a rare disease and his health is vulnerable even with just the common cold, so we practice social distancing on a regular basis.  My four main tips are- 1. Maintain a regular schedule and routine.   Life happens, so it doesn't have to be perfect, but it does help to abide by some sort of routine.  If you have something you do every day that helps you feel more like yourself, keep doing it.  2. Set reasonable (age-appropriate) goals for each day.  Don't overload the kids with work. 3. Keep up with cleaning the house as you go and get the kids to help- with everyone home things can get dirty fast!  4. Allow for frequent breaks, especially with elementary-aged kids- find something fun that they can look forward to during those breaks as an incentive.  

You can see the video here-
davidfightingfires.com/2020/03/19/social-distancing-video

#SocialDistancing   #FebrileInfectionRelatedEpilepsySyndrome  #Parenting

My son was diagnosed with a #RareDisease called FIRES (#FebrileInfectionRelatedEpilepsySyndrome) in January of 2017.  FIRES is a disease that causes intractable seizures, and at the onset, is so severe that the patient is put into a medically induced #Coma just to control the seizures.

Since my son’s diagnosis, I’ve made it my mission to advocate for him and spread awareness about this disease.  What I haven’t talked about though are the little, everyday things, that a normal person wouldn’t blink an eye at, that can instantly bring me to tears.

Last night I went to the mailbox to check the mail.  I brought the mail inside, sat on the couch, and started sifting through it.  There were local ads as well as coupons for fast food restaurants, so I decided to take a closer look at the coupons.  I said to my husband, “look, Babe- they have coupons for Subway.”  We made eye contact and then I burst into tears.

When my son was in the hospital- a full 65 days, we ate at Subway at least 4 to 5 times a week, because there was one located on the first floor of the hospital.  To this day, my husband and I refuse to eat at Subway.

This is just one example of normal everyday moments that can immediately bring me back to onset.   A glimpse of our life after the trauma. #RareDisease #MedicalPTSD #Trauma #FebrileInfectionRelatedEpilepsySyndrome