Febrile Seizures

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Febrile Seizures
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    Community Voices

    Hello everyone.

    CW: medical, pregnancy, C-section, cPTSD, DID, trauma

    I am struggling really hard right now. Normally I take CBD and Bupropin to help with my syptoms of cPTSD/DID. I just learned that I am about 4-5 weeks pregnant and while this is a good and planned for thing, I was not prepared for how hard the anxiety and pain would return when I stopped using CBD a few days ago, when I got a positive test.
    I will not take an SSRI, I had a horrible experience with them a few years ago and other than "well, just try a bubble bath" I can't find many safe options. (Even the SSRIs come with higher chance of risk than CBD, which is interesting since they are deemed safe to take while pregnant) I am not asking for suggestions as I knoe this is not the appropriate place to ask for medical advice, I just really need to get this off my chest.

    My first pregnancy and delivery were a complete nightmare. My doctor messed up and I wound up feeling everything during my emergency C-section (brought on by a seizure that happened because he put me on pitocin, knowing that I am prone to febrile seizures) and nerve damage in my back from their fumbled attempts to numb me. The excuse was that they proceeded as such due to me being Blackfoot (American Indian) and that I wouldn't feel it as much as other women due to my genetics. I doubt I have to tell most of you that's completely false, I feel pain just as much as a Black, White, Asian, or any other type of woman. So I am dealing with those anxieties added to the usual mix of cPTSD/DID symptoms.
    I am very fortunate to have an amazing partner who is so supportive and loving. He's doing everything he can and our older kiddo is 11 now, I refuse to burden them with all this, but they realize I am not 100% right now and are also being incredibly wonderful and helpful. I also have my service pitty Nike who never leaves my side and is laying with me and keeping me somewhat calm as I write this.
    I cannot turn to my parents or other family, we don't talk as they are the reason for my brain damage, chronic pain and cPTSD/DID.
    We already love this baby and want them so much, I just wish I knew how to better manage my symptoms. I have made an extra appointment with my psychiatrist to see if they can help.
    Thank you all so much for taking the time to read this. I appreciate y'all and everything I've been able to learn and share here.

    2 people are talking about this
    Masha C
    Masha C @bookmom1

    My Children's Febrile Seizures Affected My Mental and Physical Health

    My son was only 18 months when he had his first seizure. We were at the doctor’s office at the time and I remember leaning against the wall, hyperventilating and sobbing. We were fortunate to be at one of the safest places possible, but considering the situation, our fortune was pretty thin. I felt so little, so useless, and most of all scared. Wonderful medical staff tried consoling me and clearly explained more about febrile seizures, stressing they were harmless and wouldn’t pose any kind of a serious health problem. The truth is, I already knew a little about this condition because when I was younger, I had seizures, too. According to my parents, it was not pretty. Whenever my mom was questioned about my seizures, she would act nervous. “The worst time” she would utter. And then, she’d refuse to talk about it much more. “I don’t want to be reminded” she would cleverly end those attempts at conversation. The thought of my mom saying those things, who was not alive at the time I had my son, made me extremely paranoid and anxious. Every time my son would have a seizure, he’d stop breathing and required oxygen. It was a pretty scary ordeal that could at any given moment turn into an even bigger nightmare. I feared that more than anything. Thankfully, my son pulled through each and every time. He was a fighter and stronger than I ever imagined. When we welcomed our second child, a little girl, we were ecstatic. My happiness lasted for a moment, but it quickly faded when I found out my daughter had the same condition of complex febrile seizures. My mind got foggier by the minute and I lived in constant uneasiness and fear. I started developing all kinds of phobias. I feared playdates, dirty hands, germs, public play areas, museums, restaurants, farms, pools, swings, dogs and pretty much every little kid who came close to us. I examined our family friends studiously to make sure they didn’t look sick. I even made my dad wash hands while I watched. I disinfected our house daily and carried disinfectant wipes, gel and a lotion anywhere I went. Those who knew me well kept reassuring me that my kids would be fine and told me to relax a little. That was so easy for them to say, I thought. And at times, I was offended because my friends had no idea what our lives with seizures were like. They had no clue what it meant to be at the hospital biweekly or how helpless you’d feel after your child couldn’t breathe on their own, once again. How those long and multiple seizures could cause all kinds of permanent health issues. They couldn’t possibly understand what not sleeping seven plus days in a row meant, but still be a fully functioning mom, wife, friend, cousin, business partner — a broken woman. And what true desperation felt like: when you sense a cold or a virus coming and you start anticipating another seizure. Another hospital stay. Another week from hell. And you know it will happen, but you have no idea when. So you don’t sleep. You don’t eat. You just wait. And then you hustle. After each one of these episodes with both kids, I started having all kinds of health issues. Sometimes, I wouldn’t be able to get out of bed. At other times, I’d have debilitating back pain, excruciating migraines, stomach issues, insomnia, only to name a few. So when the kids were not at the hospital, I was. We took turns, and if it wasn’t so serious, it would be comical. After a few real deal health scares, I realized something has got to give. I finally acknowledged my anxiety has gotten the best of me. It was controlling my every emotion and every breath. I was tainted with panic and dizziness, with emptiness and lack of strength, with drainage of positivity and love. I was not myself any longer. But at least I managed to recognize my problem, so I could seek help. Eventually, I found many ways to force myself out of my own detrimental mind. I had to get up from the rock bottom and change the way I look at all things. I asked myself whether I wanted to live and see my children grow and I knew I did. I still had that yearning for life. I still had that drive to initiate a positive change in the present moment. I dreamt of simple things: watching sunsets, drinking coffee with friends, visiting vineyards, walking barefoot with my husband and kids on the beach. I was ready to fall in love with life once again, but in order to do that, I had to fall out of my illusive mind. I had to meet the world on the other side of fear where awareness and acceptance bring inner joy and peace. And after getting over many hurdles, I did that. The road still remains challenging and rocky, but every minute flows with more ease. I can feel life in every smile I see, I can find bits of beauty in all flaws and imperfections. Every chance I get, I try to practice stillness. I am unconstrained by anxieties and fears and I stand up proudly, because I feel finally free.

    What It's Like When Your Child Has Epilepsy

    When your child has epilepsy, it’s a constant weight on your mind. Without fail, the moment that weight eases off, a seizure will happen – just to make sure you know it’s still there. It’s thoughtful like that. My son Brody had his first (six) seizures (that we know of) when he was 21 months old. It’s a hard time to forget — the week consisted of a house move, miscarriage, endometritis and the death of a close family member (thumbs up to the universe for that one). Until seizures entered our world, I knew little about them or just how many types there are. In fact, the first time Brody had a seizure we didn’t even realize. It started off with his arm twitching and his head tilting slightly to the side, and to be honest, we thought maybe he had a trapped nerve for a minute or two. It got progressively worse as the day went on though. After that godawful day and a few nights in hospital, we underwent an EEG and MRI. Both came back normal and that was that. I spent at least six months thinking I’d never be able to sleep again, and then I began to think it was all a one off. I was wrong of course. I naively relaxed. I was asleep one night heavily pregnant with Brody beside me. He started laughing hysterically. I turned over, and he started convulsing. There followed a year of seizures, a diagnosis (for once), a few ambulance rides and overnighters, sodium valproate, emergency meds and a care plan. Hello, epilepsy. Epilepsy makes me hold my breath until the seizure stops – the fear that he won’tcome out of it. Adrenaline at full pelt. Nervous shakes. Tears at standby for when it’s all over. Epilepsy makes me stumble for my phone to try and record seizure activity for our neurologist, while hating myself for videoing something so awful. Epilepsy makes me count the minutes, hoping it will all stop before we have toadminister emergency meds and call an ambulance. Epilepsy keeps me up at night, watching our son on his monitor every time hekicks his legs or laughs. Epilepsy makes me question memories. Was that laughter in his sleep as a baby a gelastic seizure? Did he have absence seizures and we didn’t notice? Is epilepsy the reason he has learning difficulties? Epilepsy affects our son’s already severely delayed development. It can take him weeks to get back to “normal” after seizures. Epilepsy makes me fear temperatures and febrile seizures. Eyes rolling, lips blue, shallow breath. The feeling like your child is literally dying in front of you and there is nothing you can do to stop it. They are quite frankly petrifying. Epilepsy makes me panic every time Brody randomly laughs – especially at night. Epilepsy makes me irrational. I have cried anxious tears when our baby daughterhas made any kind of strange movement, worrying that she could have it too. Even though I know epilepsy is common in undiagnosed children like Brody with global development delay. Epilepsy has no boundaries. And the truth is, compared to many people whose children have multiple seizuresdaily and go in to status epilepticus, we have it “easy.” Some people have it so much tougher. As I write, we have been seizure-free for five months. The longest time since January 2015. We are awaiting the results of a joyous (sense my sarcasm) video telemetry EEG, which will no doubt tell us nothing as our epileptic son –otherwise undiagnosed – is good at cheating tests. Despite having cognitive delaysand mobility problems. I feel myself starting to relax again… and that worries me. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.