“In the event of a sudden loss of cabin pressure, oxygen masks will automatically descend from the ceiling. Grab the mask, and pull it over your face. Fasten your own mask before assisting others.”
I want to write about what the caretakers, the parents, the loved ones, feel when our children are affected by epilepsy. My goal here only to relay what it has been like for me, in the hopes it is helpful for someone. It seems each caretaker responds a bit differently to this situation. For me the experience has been, at its worst, highly emotional and exceptionally difficult. In the most difficult times, I greatly depended on hearing the perspective of others who struggled too.
Epilepsy is terrible. Seizures are terrible. They are frightening, disruptive, and can be dangerous. They are a demonstrative indication that something is wrong. Part of me hates them. I hate the way they look and sound. It connects to some very primitive part of my brain — probably the same part that recoils at the sight of blood, or a grotesque injury, or the macabre — that says “something is very wrong.”
Nora’s seizures were the most difficult thing I’ve ever dealt with. They triggered a primal response within me to defend her. I felt as though she was under attack, that there was a monster with her or within her. I would daydream that I could make the monster real, something I could see or touch, something I could pitch all of my fear, anger, and frustration against. But I couldn’t do anything for the seizures but wait and watch. So I took data; lots of it. I recorded the number of seizures she had in the morning, afternoon, and evening, as well as the medication dosages, how she slept the night before, whether or not she had a nap, what foods and supplements she had. I made models of pharmacokinetics to estimate how much medication she had in her blood at any hour of the day. I ran regression analyses to try to determine correlations to seizures with any of those factors, even including some time lag factors. At the end of each day I updated my plot of the number of seizures per day. Data keeping was a way for me to feel like I could do something.
One of the most challenging aspects of adapting to the new reality was that it was always changing. It was a roller coaster. First there was the shock of the initial tonic-clonics, then a period of hoping it was an isolated incident, then the disappointment of their recurrence, then the appearance of the myoclonics, again the hoping it was isolated, then learning about the terrible prognoses that myoclonics can signify, then an improvement in seizures as we changed medications, then a steady march of the myoclonics’ reappearance and worsening. Each brief period of relief and hope dashed with growing evidence that this was not going to be easy, that Nora may be impaired, that we will have to adapt to life as parents of a special needs child. I’m not a superstitious person, but I began to feel that to dare to hope or smile was just to invite the pain of falling when those hopes were dashed.
Mornings were the hardest. I woke up each day on the edge of tears. I would lay there in bed, waiting to hear Nora’s feet on the floor as she walked to our room to cuddle with us for the 15-30 minutes or so before we got up. The daily seizure count started almost immediately. As Nora laid with us, she would typically have 1 to 3 myoclonics. Time to get up. My feet felt leaden. “One foot in the front of the other” I told myself so many mornings. I trudged to the kitchen to put the tick marks on the refrigerator whiteboard, already anticipating if the daily seizure count would be above or below normal. If the trend was down, or up.
I was teaching a course that term — power electronics. I remember many mornings standing before my students as they chatted with each other in the minutes before the start of lecture. I would have my face down, pretending to read my course notes as I fought back tears. Take a deep breath. “OK class, let’s get started…”
I started to break under the constant pressure and stress. The first and only genuine panic attacks I’ve had in my life started coming. I remember one morning when she was a few weeks in on the switch from Keppra to Depakote. As we made the switch, her seizures dropped dramatically. She even had a few seizure free days. But then they started back. A little bit more each day. This was the most devastating time for me. There was no sugar-coating it: it was very bad news to have the myoclonics marching back through the new drug. This particular morning I was getting ready to leave and happened to glance over at her as she played near the couch, just in time to see a myoclonic. I felt the rush of hormones; the involuntary chemical cascade that tightened my chest and made me feel nauseous. I remember pacing back in forth in one spot and clenching and unclenching my hand. I felt like I was going to pass out. I felt uncomfortable in my skin.
I started to find it hard to be around Nora. Of course I loved her as much as always, but I just couldn’t handle the seizures. I would eat dinner standing in the kitchen instead of sitting with Christy, Anders, and Nora at the dinner table, as the dinner table seemed to be a prime time for seizures. Christy started to feel the stress of my stress too. So I started to branch out. I got much help from my other family friends, and I also started going to see a professional counselor to help me with anxiety management. Another excellent resource that really helped me was Michael Koskie’s book “Diet for Seizures,” which discusses his family’s use of the Modified Atkins Diet for their daughter. He has a section in the book on the emotional impacts to the parents that was very helpful.
When we switched to the diet and Nora improved, it brought me the much needed time and space to heal. There are still times when I feel the anxiety and fear come back, particularly if Nora is twitchy in her sleep, or if she is sick. But on the whole I’ve gotten much better, although it has taken a lot of time and persistence.
So we want to say to those whose hearts ache for their children and the uncertainty of their well-being: it’s going to be OK. Even if you don’t see how right now. Trust me. You are going to be OK. Your little girl or boy is going to be OK. It might seem so hard and scary right now, but it is going to get better. That doesn’t mean there won’t be more challenges or more seizures, or that it won’t take a while more. But it will get better. Keep going. Breathe deeply and keep going.
Misc words of wisdom:
- Kids are really, really tough. They don’t feel sorry for themselves. They just keep going. Take inspiration from their energy and happiness even in the presence of seizures. I remember being with Nora in the emergency room between tonic-clonic seizures (she had one about an hour prior, and there was one coming in just a few minutes, although of course I didn’t know it) and she was examining my cell phone with such interest. I felt sad and scared, but she didn’t care that she had just had a seizure. She wasn’t sad or scared. She was being an inquisitive child, as always.
- Each hard moment you make it through is one less on your path. Your child is going to have X number of seizures between now and seizure freedom. Each seizure means there is X-1 left. Each day you make it through brings you and your child closer to better medical knowledge of epilepsy diagnoses, causes, and treatments.
- It’s OK to be angry, sad, and scared. Stop and cry and when you need to. When it is time to get going again, put one foot in front of the other. One day at a time, one hour at a time, one step at a time.
- Use your friends and family to give yourself breaks from epilepsy care. It doesn’t mean you won’t stop worrying or constantly checking your phone, but it will do you good to get out of the house and in the company of others (e.g., your work, your friends, your hobbies) for a while.
- Though it can be hard, be grateful for what you can. It can always be worse.
- If you have a partner or spouse, recognize that sometimes the stresses of epilepsy will stress your relationship too. Take care of each other.
- Go see a professional counselor. Your medical plan may cover it. A counselor will be able to hear you out and share specific stress management techniques that your partner may not. Counselors helped me with anxiety management.
- Your child’s condition is not your fault, nor anyone’s doing. Human physiology is complicated and messy and sometimes things go haywire. What’s happened has happened and that’s that. There is no meaning to it. Having kids is tough business. We have no guarantees on their safety and well-being. When we have kids we take our hearts and put them outside of our bodies, at the mercy of entropy and the unknown. All you can do is the best you can do to care for them and love them.
Keep going. Breathe and keep going.
Any words of wisdom from other parents and those affected by epilepsy are most welcome in the comments.
this is well written and thanks for writing to provide support. we felt the same with our daughter, we could almost guess when the seizure is going to happen and feel helpless. i always wondered why her and why us but knowing it could be worse is comforting in a way. i never leave a phone without my sight even for a sec when i was away from daughter and whenever i get a call from her caregiver during the time i am not with her, my heart will race 100 times faster.
Are things better for your daughter now?
They are. She went seizure free for almost 11 weeks and 2 of 6 weeks stretch prior. I think both times it is a mistake with carb count in addition to being sick or hot. Clearly it seems work especially when we cut down and eliminated all dairy but we are back on dairy because we are on huge power struggle and battle with her regarding food. She didn’t eat for the last few days and she ate cheese finally and now all she wants is cheese but straight up.!this diet and epilepsy is so hard and especially having 3 ur old understand the goodness of the diet.how is nora doing? Is she off the diet completely?
It is very hard. Hang in there. The battles are tough but it won’t last forever.
There is nothing wrong with straight cheese. Nora still eats a ton of cheddar straight. Babybels are good too. Nice and fatty.
Nora is off the strict keto diet and is now on an Atkins or low-glycemic index diet. We generally eyeball portions and focus more on making meals balanced; which in this context means that a good amount of protein and fat is present in each meal or snack to balance the carbs. She’s doing great!
thanks , Glad to hear about the progress with Nora. thanks for the tips regarding cheese. we found out why my daughter was refusing food completely ( thrush in her mouth). after being on medication, she is starting to show interest in food. i am glad to have this personal connection with you and appreciate the support you provide. You too keep up the good work with Nora.
Thank you so much for writing this, Ted. I saw myself in much of what you wrote. I even had my husband read this just so he could understand better what it feels like for me (he processes all this quite differently). These are hard things to talk about, especially with friends whose kiddos haven’t faced significant adversity. Thanks for putting yourself out there!
Thanks Leslie. I agree, sometimes you just need someone who knows what you are feeling to sympathize.
I can 100% relate to this post. My husband passed away suddenly in 2013 leaving me to care for my 2 yr old twins. When Levi started having seizures a few months later I just couldn’t deal. Luckily, he was well controlled on meds for nearly a year. Then it went completely downhill. He was having so many seizures last fall that I thought I would lose him for good. He wasn’t there anymore. Luckily, he had a callosotomy and VNS implanted and that has made a huge difference (seizures come from where his right hand motor control is so no taking it out). He still has seizures and so despite being on a bunch of meds still we are doing modified Atkins to reduce his (nighttime only) seizures to zero (if possible) and to wean off the meds. Life is so much better than this time last year when I barely left the house with the kids and really, just wanted to drive far away from my life. It can still be hard to be around Levi from the PTSD, but it’s getting better. I’m on the diet too and am sleeping better. I’m an academic also and I’m getting more work done this semester than I anticipated. Life returns. Calm ensues. Love the blog….thanks for the recipes! G.
Oh my goodness Ginny, you really have your hands full. I’m so glad to hear it is better. We wish you the best; keep us posted.
What got me through the seriously dark times was being grateful for three things every day. Life couldn’t be so bleak if I could list jut three things (often on Facebook so that it was noted somewhere) – even a new haircut, a chocolate cookie, fewer seizures. Anything. It was very helpful. That, and talking to other parents. I realized through them that the doctors will keep trying to help you and will always try something else to find seizure management. I thought at some point they’d give up on us (seems completely crazy to me now to think that) but they didn’t and won’t. There is an incredible support network out there if you open up to it. Oh, and Prozac (for me) and tons of therapy!
By the way, I made a super low carb bread today with eggs, almond butter, whey protein powder, and baking powder. Levi loved it. I think he misses bread the most – but won’t eat much meat….so I have hesitated to pack his lunches with sandwiches as he’d blow his carbs in just one meal. At 0.5 g/slice this bread is great for sandwiches and I don’t worry so much anymore. http://www.lowcarbsosimple.com/simple-and-fluffy-glutenfree-lowcarb-bread/
That’s great advice Ginny. And it is also a great lesson in that you were so assertive in getting help for yourself.
Thank you for this website and sharing your story. Last year at this time I found it and read and read. I did send you an e-mail asking about the diet. My daughter started the diet on January 12th and she was seizure free until Thanksgiving when she had a breakthrough seizure. Her ratio was tweeted and so far so good. I can relate to so much of what you wrote. Epilepsy is scary. I tell my daughter every day that she and her brother are gifts from God. I am so grateful that I found your website and that you shared Nora’s story. I know we need to take this all one step at a time. My daughter has been weaned off her medications so the diet is her support to be seizure free.
Thank you again for you insights, recipes. I am glad Nora is doing well!
Thank you Maryann. We wish your daughter continued health.
Thank you so much for writing this. My 5 year old daughter started having tonic clonics when she was 3. She would have one or two about every 5-6 months and they lasted 10-15 minutes. Then she started having absence seizures, many daily. So scary. She got on meds which controlled it for awhile. Now we’re experimenting with meds and dosage with the neurologist. The meds really scare me with possible side effects. I’ve been thinking about trying the ketogenic diet or modified Atkins diet. It just seems like it will be so hard to adhere to, since I have 5 other older children that will being continuing to eat breads and sweets, etc in front of her. But if these medications fail us, I will probably be desperate enough to try it. Your post about the caregivers brought me to tears. I identified with all of it. It felt so good to hear of someone who understands and has gone through the same thing. And I was super encouraged by you saying it will all be ok, and that our child will be ok. Also, that every day, every seizure is one step closer to seizure freedom. Also, that kids are tough and don’t feel the weight of it all like we do. That all encouraged me so much. Thank you. Thank you. Thank you!
Stacy, thank you for the kind feedback. Being the parent of an epileptic child is so difficult and we all need to support each other.
There is no doubt that the keto or MAD diets have challenges. But know that if you do decide to go that you route, you CAN do it. Certainly there are adjustments to life with diet restrictions, but the parent of an epileptic child is already in a hard situation. All that is left is to choose the best of the hard situations.
Let us know if there is anything we can do to help. You are not alone.
Thank you for this. We are new to this. My 14 year old daughter started having seizures about 6 weeks ago and there doesn’t appear to be any understanding of why. MRI was normal. I’m trying to educate myself on diet and saw this site. I’m encouraged as I read. We were only diagnosed 2 days ago so I’m still trying to wrap my head around how this can be happening. I’m trying hard not to let fear consume me and stay focused. I look forward to trying these recipes and reading more on here. Thank you. I’m glad you are finding some peace for your family.
Christina,
The development of seizures is scary and uncertain, but you and your daughter will make it through. Have you seen a neurologist yet? Has she started any medications?
Ted
Love love love your blog! My 7 month old daughter starting having seizures at 2 months old and we’ve tried every medication without much luck. Next week we go in to start the keto diet. I know it’s going to be challenging, but hearing your stories and words of encouragement mean so much. Feel free to send any tips, book suggestions my way. We’ll need all the help we can get.
Hi Gina,
I have so much hope that the keto diet will help your daughter. She is so little, so they will probably have some keto formula for you, which will be easier than trying to change a big kid’s diet! Avocados will be a great food to introduce, it’s perfect for the diet. We will be thinking of you, and feel free to ask questions and keep us updated!
Christy
We are now about 8 months into our own seizure journey with our 4 yo daughter. We are starting to get our feet under us again as we transition to the MAD diet.
I remember somehow stumbling onto your blog very early on as I was frantically googling things like ‘myoclonic seizures’ late at night…this post brought tears to my eyes. At a time when I felt so horribly alone, all of a sudden I felt incredibly understood and not alone any more when I read your words.
(I was also terribly intimated at time that we might one day have to do dietary therapy, but now we are here and it is not so bad. Maybe, dare I say it aloud, it is starting to help.)
Anyway, I came back here to find some recipe ideas, and gravitated to this post again. Again I find myself tearing up. Everything rings just as true as before. Thank you.
A bittersweet corollary to your rule that ‘Each hard moment you make it through is one less on your path’ I have learned is to accept that a good day is a good day. I try very hard not to worry whether a good day will be followed by a bad day. I just try to be grateful that we are having a good day and to hug my child and savor all the parts of her that are sometimes otherwise eclipsed by her epilepsy.
I am truly happy for Nora and your family, and grateful that you continue to maintain this genuine, supportive, and helpful blog.
Hi Katie, your comment is bringing tears to my eyes too! I’m so grateful that we can connect to help others feel less alone on this journey. We also found with MAD that there were good and bad days, and even when we transitioned to a more strict keto diet and saw more improvement there were breakthrough seizures for awhile. So you are absolutely right–embrace the good days, and let them be a sweet reminder that your hard work is paying off.
Please let us know if you have questions or just want support, I’m happy to be in touch via email (I have your email from the post, I won’t share it publicly).
We will keep you in our thoughts!
Christy
Katie, I’m happy this post was helpful. Don’t hesitate to reach out if there is anything we can help with.
I think your observation that a good day is a good day is very wise.
Ted