Febrile Infection-Related Epilepsy Syndrome (FIRES)

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Febrile Infection-Related Epilepsy Syndrome (FIRES)
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Social Distancing- What it Means to Our Family and Tips!

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-

#SocialDistancing   #FebrileInfectionRelatedEpilepsySyndrome  #Parenting

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Three years ago!

3 years ago and today!!! We are so thankful to see how far he’s come! In the first picture, David was in the process of coming out of a pentobarbital coma. Today he is out of school as he’s been having seizures, but he is in good spirits! So thankful for change and progress! #FebrileInfectionRelatedEpilepsySyndrome #VNS #Epilepsy


Life After the Trauma

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

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#ChronicIllness #FebrileInfectionRelatedEpilepsySyndrome

Today I found some old photos from a Christmas party we went to in 2017. You can see them on the left. I never posted them, because it broke my heart to see how his illness just jumped out at me in these photos. The night before, he had had a seizure. He was on so many meds that I can’t even remember them all. The weight he gained was due to the meds, and you can tell by his skin color just how ill he was.
The picture on the right is from today. He had a seizure last night, like he did two and a half years ago, but instead of it being three minutes and him desatting, it was 30 seconds, and he breathed through it. It has been a long road, but I’m thankful that we are moving forward instead of backward. I’m thankful for God’s provision. And I’m thankful that David is more like himself every day. ♥️

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Zoo Time #Epilepsy #FebrileInfectionRelatedEpilepsySyndrome

Our family just moved to a new city for my husband’s job. Now we have to find a new PCM, Neurologist, Therapist, school- it can be a bit overwhelming. We’ve been unpacking all week, but today we decided to take a break and head to the zoo. Of course, this means bringing regular meds, rescue meds, and our VNS magnet just in case. Especially since we are currently weaning medication. We did have to leave earlier than planned, as our LO was getting too hot, and water just wasn’t cutting it for him. One of his anticonvulsants doesn’t allow him to sweat as much as he should, which can cause him to overheat and possibly lead to a seizure. Thankfully, we left early enough to prevent that from happening. No seizures. Overall though, we had a fun break.