Febrile Infection-Related Epilepsy Syndrome (FIRES)

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Febrile Infection-Related Epilepsy Syndrome (FIRES)
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    Community Voices

    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

    Community Voices

    Three years ago!

    <p>Three years ago!</p>
    4 people are talking about this
    Desirae Casas

    Parenting a Child With a Rare Disease and Having School Challenges

    In 2017, my son was diagnosed with a rare disease called febrile infection related epilepsy syndrome (FIRES). Many kids diagnosed with FIRES do not make it past onset, and those who do live a life constantly experimenting with anticonvulsants and other therapies in hopes of finding something that works. At onset, likes most FIRES patients, my son was put in a medically induced coma just to control his seizures. Since then, because his seizures are considered intractable (not controlled by first-line anticonvulsants), he has been on and off so many medications that I have lost count. Currently, he is taking five anticonvulsants, which translates to 19 pills plus liquid medication every day. Earlier this year, my son underwent vagus nerve stimulator (VNS) surgery. He now has an implant with a lead attached to his vagus nerve that sends a maintenance shock through the nerve to his brain every three minutes. This device has been so successful for my son that (under his neurologist’s supervision), he has been able to wean completely off one anticonvulsant and is almost finished weaning another one. This is a huge win in the FIRES world. Weaning medication, though, can cause complications. The medication we are currently weaning is Trokendi — an extended-release version of Topamax (Topiramate). The reason my husband and I really want our son off Trokendi is because it slows down cognitive processing, and we want him to be successful in school. He has had Topiramate in his system for over two years and is very sensitive to even slight changes in medication. So, although we are weaning slowly, it is causing him to experience withdrawal symptoms. My son has a withdrawal pattern. We’ve weaned so many medications over the past couple of years that by now, my husband and I are very familiar with his patterns. We usually decrease his dosage on a Friday. This means that by Monday, his body feels the drop, and his behavior is not the best. His behavior is ‘off’ for the next few days. By Thursday he may be a little unfocused, but is mostly back to normal. Then when Monday comes around again, he starts having withdrawal seizures. He’ll have one, sometimes two seizures a day for three to five days around the time that he would normally receive the medication. Since he takes Trokendi in the evenings only, the seizures usually happen around 8 p.m. After a few days, his implant finally catches on (the device learns the seizures patterns) and starts preventing the seizures. If the seizures have been mild, we drop again that Friday. If they have been severe, we give him another week to recover, then resume the wean. Rewind to two weeks ago. My son had his first week of school. It was great. His behavior was on point, which is saying a lot for a kid who is on five anticonvulsants twice a day. No complaints from his teachers whatsoever. At the end of the school week, that Friday, we decreased his Trokendi dose. So, when Monday rolled around, I wrote a note to his teacher explaining that we decreased my son’s dose. I wrote that he may be extra shaky and he may display withdrawal symptoms such as mood swings and anxiety, and although it’s not likely at this point, to just be cautious and look out for seizures. It turns out, he was extra shaky and had a hard time holding his pencil and writing. His teacher noticed he would get frustrated trying to write and was very encouraging. Apparently though, towards the end of the day in art class (with a different teacher) was when the mood swings and anxiety set in. When I picked him up in the car line, the teacher on duty told me that the principal wanted me to know my child was “acting out.” Acting out. I explained to the teacher on duty that my child was experiencing a drug withdrawal — that he was not “acting out.”  Educators Need to Show More Understanding to Kids Living With a Rare Disease It didn’t matter to her though. She had delivered her message. My son came home and cried himself to sleep in my arms. Thankfully, the next day was an already scheduled IEP meeting. That morning, I explained to everyone in the meeting that adults going through withdrawals have the luxury of rehab, but chronically ill children with rare diseases, who are constantly changing medication don’t get that option — because this is their way of life. I explained my son’s withdrawal pattern, and how they would be dealing with the behavior issues, but I would have to deal with the withdrawal seizures the next week. I explained that despite his behavior, my son was doing well for a 9-year-old experiencing withdrawals — that I had seen him experience much worse behavior due to withdrawals. I explained the difference between “acting out” and experiencing withdrawals, how the latter simply could not be helped. I also explained that treating him like he was “acting out” was damaging. I suggested there was a better way to handle things. I explained that a hug, an “I’m sorry you’re feeling this way” and a “this is not your fault” goes farther than discipline. That given what was happening to him, he may just need to feel reassuring arms wrapped around him and cry. In the end, they all seemed to understand. They saw the scared little boy, unsure of why he was feeling the way he was. They saw that this wasn’t his fault. They understood that going through this to get him off medication added to his quality of life. And they saw that this was nothing compared to what he had already been through. Now it is Monday again. His behavior is back to normal, but the withdrawals are not over. Tonight, I wait for the seizures, and hope the world is a little more understanding towards my child in the future.

    Desirae Casas

    Things I Want My Chronically Ill Child's School to Know

    Yesterday as I was waiting in the car line at school to pick up my boys, a teacher with a clipboard stopped by my window. I rolled the window down and here’s how our short conversation went: “Did you send money with your kids for the book fair?” “No, I didn’t.” “Well, why not?  Today is the last day!” “Honestly, I forgot all about it.” She seemed appalled that I could’ve forgotten about the book fair.  Yes, the school sent flyers home and my kids brought catalogs home.  But the truth is that when you are parenting a child with a chronic illness, things like the book fair are the least of your concerns. My son had vagus nerve stimulation (VNS) surgery in January, which means that now he can survive without all of his anti-seizure meds. That’s great, right? But getting off all those medications is a long process. And because he is so sensitive to medication changes, he experiences legitimate drug withdrawals accompanied by withdrawal seizures. (Yes, the anticonvulsant weans are all under his neurologist’s supervision.) So, in addition to trying to keep my son alive through the withdrawal process, I have to keep up with countless doctor’s appointments, evaluations and therapy; not to mention parent/teacher conferences and IEP meetings, as well as keeping up with the house and helping with homework. Plus, Boy Scouts is on Tuesday nights. Pardon me if the book fair just happened to slip through the cracks. So to my child’s school, I’d like to say a few things: Please don’t judge me for forgetting about events like the book fair. I have so much on my plate that the book fair literally isn’t even on my radar. The important things like keeping my son alive and making sure he gets to doctor’s appointments and therapy are what matters most. It will probably happen again. This won’t be the first time I will forget. There are some events that I may choose not to attend. Not because I don’t want to be involved or don’t care about my child, but because if I’m going to stay sane, I need time for me. If there is something really important like sending money for a field trip, I may need a few reminders. Maybe even a phone call. I won’t see it is nagging. I will need the extra reminders. Be graceful with me. Understand that I have more on my plate than the average parent. Try to see things from my perspective. And lastly, I really do appreciate all you do for my child. I know it is difficult meeting all the needs of a child who is chronically ill. A student who may miss class sometimes for doctor’s appointments and therapies. I see the extra effort you put in to make sure my child’s needs are met, and it means the world to me. (We did end up back at the school for the book fair after the teacher’s reminder and the kids were able to purchase a few things.)

    Community Voices

    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

    Desirae Casas

    Why I Won't Hesitate to 'Fire' My Son's New Doctor

    Our family just relocated due to my husband’s job. Moving is normally a tedious process to begin with, but moving with a child who has a rare disease can make matters complicated. Last week we had an appointment with our son’s new primary care manager (PCM). My husband and I explained his illness, how the common cold can send him into status epilepticus if not treated right away, and why it was extremely important we get a referral to a neurologist as soon as possible. Because of our son’s illness, febrile infection related epilepsy syndrome (FIRES), he sees the neurologist and emergency room doctors more often than he sees his PCM. The common cold can literally lead to a life or death situation. But in order for him to even have an initial appointment with a new neurologist, we need that referral from his PCM. Today we called our insurance to see if the referral had gone through yet. It had been a week, and the doctor knew how important it was that our son see a neurologist soon, so of course we assumed they’d have sent the referral by now so we could schedule an appointment. When my husband contacted our insurance though, they had no referral on file. My husband and I discussed the situation. Up until this point, we had been extremely blessed with doctors who knew how urgent our calls were and were willing to do whatever was necessary for our son’s health. The bottom line was that a week for a referral was unacceptable, and if the doctor didn’t understand the fragility of our son’s condition, we’d have to find another PCM. When we contacted his PCM’s office, we were kind, but let them know that if they couldn’t meet our needs as far as immediate treatment and referrals go, that we would need to look for another PCM. Half an hour later, we got a phone call back that the referral went through. While I was thankful for the referral, it indicated they had been sitting on it for a week. We have an appointment to see another PCM next week. We explained over the phone how fragile our son’s health is, and they have promised they can handle the urgent appointments and referrals. Our experience was a wake-up call. Unfortunately, not all doctors have the patient’s best interest at heart. And those who do may not truly understand the severity of the situation. Either way, as parents, it is so important that we advocate for our children’s health and the care they receive. This was our first experience firing a PCM, and while I don’t think it will be the last, I certainly hope it will be.

    Community Voices
    Desirae Casas

    What to Know About Febrile Infection Related Epilepsy Syndrome

    It wasn’t until 2017, when my son diagnosed, that I heard about FIRES. You see, up until that point my son had been perfectly healthy, happy, and developmentally on target. He was 6 years old, and in my completely biased opinion, the perfect kid. Now, he was lying in the hospital bed, in a medically induced coma. We were told that if he kept having seizures at this rate, either his heart would stop, or he would live the rest of his life in a vegetative state. Febrile infection related epilepsy syndrome (FIRES) is known to appear after a previously healthy child gets a virus. In my son’s case, the only viral infections doctors could detect were rhinovirus (the common cold), and enterovirus (a respiratory illness). Two weeks prior to my son’s hospitalization, I took him to the doctor because he was coughing and had a runny nose. The doctor prescribed cough syrup, and we went on our way thinking he must have a cold. My son seemed to be getting better until two weeks later when he threw up. The next morning, I found him in the fetal position. He wouldn’t open his eyes. When he finally did open them, he acted like he didn’t know who I was — like he didn’t even know his own mom. He was frightened, and so was I. I immediately took him to the ER where he had a grand mal seizure in the waiting room, and I was told he must have had a seizure that morning. Unfortunately, with FIRES, the seizures don’t stop with traditional anticonvulsant medications. Patients go into status epilepticus — basically prolonged seizures without any recovery time in between. My son was put into several medically induced comas in an attempt to stop the seizures. Finally, we agreed to a double-blind clinical trial, and although we don’t know if he received the actual medication or a placebo, he was successfully brought out of the last coma with controlled seizures. (We recently found out that the trial drug was not approved by the FDA for use on patients with status epilepticus.) It was a long recovery. My son was in the hospital for 65 days and left on 37 pills a day (not including liquid medication). These included anticonvulsant medications and drugs like Strattera and Clonidine to help fight the behavioral side effects of all the anticonvulsants he was on. And at that point, because he made it through the acute phase, was still verbal, showed no signs of brain damage, and had controlled seizures, he was considered a best-case scenario. Thankfully our story hasn’t followed the norm. My son underwent VNS surgery in January, and we were able to wean off one anticonvulsant, as well as Strattera and Clonidine. Instead of 37 pills a day, we are down to 19. We will begin weaning another anticonvulsant within the next couple of weeks. Every step forward gives us a clearer glimpse of the kid we knew before FIRES. As of now, doctors don’t know the etiology of FIRES, and there is no cure.  Many believe FIRES could be an autoimmune reaction, but more research is required. In the meantime, families of those living with FIRES have become a community. We are all still waiting, still fighting, and always hoping.

    Desirae Casas

    How to Support Friends Who Have Children With FIRES

    Being a parent can be demanding. From laundry and preparing meals, to playing chauffeur and therapist during a single car ride home, we find ourselves starring in many different roles. We endure sleepless and showerless nights, early mornings, and somehow still manage to keep it together. But what about those of us who aren’t just parents (who are already superstars in their own right), but parents to chronically ill children? The ones who aren’t simply doing laundry and preparing meals for the family, but are also taking it back and forth to the hospital? The ones who regularly spend sleepless nights checking monitors and medication, and wake up praying that their child made it through the night? I see you. Because I am one of you. I see the tears that others don’t. I see you worrying about your child’s future, about your future. I see you wishing you could have a break. Not because you are ungrateful — no, you know how far your child has come and are so very thankful that it isn’t that bad. You just need a break because you are a human being and exhausted. And you know what? That’s OK! You are allowed to need a break. I’d go as far as to say that you highly deserve that break. On top of being Mom to a chronically ill child, I’m a military wife, which means I literally have no family around to help. When my son was first diagnosed with febrile infection-related epilepsy syndrome (FIRES) (a horrible, horrible epilepsy disorder that unfortunately does not have a positive prognosis), my parents flew out and stayed for a couple of months here and there, and my sister was able to fly out and help as well. But they can’t just hop on a plane every time my son is in the hospital. We’ve had more hospital stays than I can count. Thankfully, I have an amazing church family and great friends who have really gone above and beyond for my family. We had a friend who picked up our younger son from school on a regular basis while my oldest was in the hospital, other friends who cooked for us, some who brought food to the hospital — I could go on and on. All of this was done without me asking, and mostly, without them asking. They knew we needed help, and they just stepped up and did it. At the time I didn’t realize it, but for them to just do those things without asking was huge. I wouldn’t have known what to tell them I needed. I didn’t know what I needed. Now that we are no longer in crisis mode, I often find friends asking me what they can do to help out. But when they ask, I have so many things going through my mind that I can’t even pinpoint one! It’s like my mind just freezes thinking of all the things that need to be done — how can I pick one that’s appropriate to ask a friend to do? Based on my own experiences, I’ve come up with a list of Dos and Don’ts, a sort of guide, for those who want to support friends with chronically ill children. Do: • Learn about the child’s condition. Do research. Ask the parents. In my son’s case, it’s seizures. Ask what they look like. As odd as it may seem, my husband and I actually have videos of our son’s seizures on our phones because we need to time the seizures and then describe them to his neurologist. The most efficient way to capture all of that information is by pulling out our phones. Do not: • Try to give medical advice. Unless your child has the same illness, or you are a specialist, to put it frankly, you are wasting my time and yours. Yes, it is great to learn about the child’s condition and do research — but I can guarantee that no matter how much research you’ve done, I’ve done more. That popular diet you’ve heard is helping others — I knew about it before it was a fad. That new medication? Because my child’s illness is more complicated than the “norm,” it won’t do squat for him. After explaining to about 50 well-meaning friends on 50 separate occasions why my child is not on the keto diet, I’ve hit my limit. Don’t push your poor friend to that point. Do: • Get to know and love the child. Some seem afraid to become close to chronically ill children. It’s understandable. It’s scary to love someone that is chronically ill. It’s a roller coaster. But I can guarantee you it is worth it and will change your life for the better. Do not: • Be standoffish and awkward. Children, whether chronically ill or not, have so much love to give and deserve even more love in return. Don’t make them feel worse about their condition by being weird about it. Do: • Offer to take care of the children. If you’ve gone through the first two “dos” and have a good relationship with the parents, then chances are, you are one of the few the parents will actually trust with their child. Thankfully, I have several people I can count on to watch my children. My husband and I have been able to go on date nights knowing that our children were safe, and in good hands if anything were to happen. Don’t limit it to date nights. Maybe your friend just needs a shower or a nap. Maybe she needs to go work out because that is her only stress relief. But offer. Do not: • Think your friend is a superhero who never needs a break just because she doesn’t ask for it. Whether it’s date night or quiet time, we always need a break. Our lives are so consumed with taking care of others that often our most important relationships, and our own self-care, goes neglected out of necessity. Also, it’s hard to ask for help. Not because we’re being prideful but because sometimes we just don’t realize we need it or can’t pinpoint what we need. So offer. Do: • Realize that if both parents work, their allotted days off will not last them the year. Parents of chronically ill children save their vacation days in case anything happens to their child. If you are blessed enough to have no obligations during the day, offer to take care of the children for the less serious illnesses (for example, the stomach bug or a cold) so parents don’t have to take off work. Instead, they’ll be able to use their days off for the more critical issues that result in hospital stays. This is one of those things I wouldn’t dream of asking anyone who isn’t family but would take in a heartbeat if offered. Do not: • Assume your friend has it all figured out. The only reason we “make it look easy” is because we don’t have any other option but to do what is necessary. Either we do our best, or our child goes downhill fast. Some days that may mean that we are rocking this parenting thing, and other days it means we’re barely making it by the skin of our teeth. Do: • Occasionally offer to bring/make food for the family. Whether we are in crisis mode or are having an out of the blue easy week, we are still busy and very appreciative of a meal we don’t have to prepare ourselves. We still have 100 things to do. We have doctors appointments, therapies, prescription pickups, and that block of time we specifically set aside to harass the insurance company, on top of normal parenting responsibilities (which we already know are numerous). We are not going to turn down a meal. Do not: • Forget about us because we are no longer in crisis mode. We often still feel like we’re drowning. Do: • Realize we are exhausted. There are so many events that I just don’t have the energy to attend. Whether it’s a church event or ladies night out, I only have so much I can give. Because I just gave it all to my cute little munchkin. Because that’s what I do. Do not: • Stop the invites. As much as I value my alone time these days, sometimes I need human interaction that doesn’t involve talking about my son. It makes me feel like “me” rather than “the lady with the sick kid.” It is important that I don’t lose myself in all of the chaos. Do: • Offer encouragement. Let me know you’re praying for my family. Tell me often. It gives me hope and blesses my soul. Do not: • Tell me to pray harder. Don’t tell me I don’t have enough faith. Both are insulting and make you look bad. One of the things  I personally hate hearing is “Have faith.” To me, that sounds like you’re assuming I don’t, which isn’t true. With all my family has faced, faith has been the only thing we could stand on. So those who tell me to have faith are showing me how little they know me. Do: • Above all, continue being an amazing friend, shoulder to cry on, and a vital part of my girl squad. We are friends for a reason, and I love that you have persevered with me on this journey. I will always need you to just be you.