Caring for an epileptic child is extremely stressful. Not only do you have the immediate stress of not knowing when the next seizure hits, but you have the long-term stress of uncertainty about your child’s prognosis and development. I’ve written a bit about this before (http://blogs.oregonstate.edu/oregonketokids/2015/08/16/caring-for-the-caretakers/) and today I’d like to add a few more specific steps you can take.
First, understand that you are not alone. There are millions of people in the world dealing with epilepsy. Somewhere in the world a child had their first seizure today, and the parents and caretakers are freaked out. Somewhere in the world there are parents and caretakers that are worn down, stressed out, and sick with worry. It’s OK to feel that way.
If you have an epileptic child, let me say I am so sorry. I am sorry you have this uncertainty and stress in your life, and that you are so worried about your child. We hear your pain because we feel it too. We are with you. We can walk this road together.
Second, practice breathing exercises to keep your stress in check. When I was really, really struggling with Nora’s epilepsy, I started experiencing panic attacks. I went to see a counselor and she showed me that, by breathing deeply and making an effort to relax my body, I could actually make it impossible for my body to develop a panic response. By breathing deeply and slowly, you are forcing your heart rate to stay down; you are manually intervening in what would otherwise be an autonomic response. That doesn’t mean you are not upset, or sad, or angry, but at least it keeps you in control of your body.
You don’t need any fancy books or videos to learn how to breathe. The technique that works best for me is to draw in a breath, and release that breath in twice the time. For example, start with drawing in a breath for a count of 4 seconds, then count to 8 seconds as you exhale (for a total of 12 seconds). If this feels comfortable, go to a 5 second inhale and a 10 second exhale. Keeping adding 1 second to the inhale and 2 seconds to the exhale until you reach a level that feels very comfortable; you don’t need to push it or make yourself uncomfortable. (Pro tip: the breathing doesn’t need to be even. I like to inhale evenly with a sharp full inhale at the end to top-off my lungs, and the same on the exhale, evenly, with a strong final push to clear my lungs before the inhale. This trick uses the full lung capacity regardless of the breath time.) Keep breathing this way for 5 minutes or so. This simple technique will keep your heart rate and blood pressure down, thus actively interrupting your flight-or-fight response. It’s not going to make you feel happy if you are sad, but it will put your body at peace so that you can think clearly.
Third, practice cognitive therapy techniques. (I studied this method to actually help me with another, unrelated chronic problem I have: tinnitus.) We experience some stimulus A (e.g., a child’s seizure), and then we experience a response C (e.g., worry, panic, etc.). The cognitive therapy method is to mindfully interject a new step B between A and C. The new step B should acknowledge and validate A, but help us to arrive at a new C. For example, our child has a seizure. We recognize this and we interject by very actively telling ourselves “I’m really stressed about this seizure, I don’t like it, it makes me upset, BUT we will get past this and we will keep working and there will be better times ahead.” The key to this is to keep using it, and after much practice, we start to re-train ourselves how to think and feel about something. We eventually learn to associate A with a new and hopefully better C. We can also use the same technique to reinforce a positive thought. For example, event A could be something good and encouraging. We can then interject step B that helps us to recognize and value the event, thus building a stronger connection between our ability to notice these good events and how they make us feel.
(And please let me note that the idea here is not to interrupt grieving, which is extremely important. We all need to feel sad sometimes and we shouldn’t always be too quick to try to shake it off. Sometimes we need grieving before healing. The cognitive therapy method is instead to be applied to recurring thought patterns that we’d like to change.)
So in summary:
- Understand you are not alone in your feelings.
- Use mindful breathing to gain control of your body, to help your mind.
- Use cognitive therapy techniques: interject a step B between event A and feeling C to help train yourself for new thought patterns.
Great post, Ted. I appreciate your concrete suggestions and also recognize and validate the feelings we experience as parents coping with epilepsy. Thank you for sharing your experience and wisdom.
Thank you Fawn! Thanks for being part of our community.
Fawn I have just posted a reply to Ted below but just wanted to say your blog was also a fantastic support to us while our son was on the diet! Thank you! Beth
Thanks, Ted, for this, and thank you for all your thoughtful posts. I just wanted to let you all know that our son Henry has had a great response to Epidiolex, which was approved by the FDA yesterday. We tried hard to make the keto/MAD diets work for him for two years, but they didn’t seem to be enough on their own. Henry has now been on Epidiolex for nearly two years (through a compassionate access scheme organised by the New South Wales government here in Australia) and he is going longer and longer stretches seizure free (fingers crossed!) in conjunction with some other epilepsy drugs. Anyway, thank you again for all your family’s help with us on our epilepsy journey. Your posts have been a fantastic support. Beth
That’s great news Beth! We’re here for you.
Thanks for the information concerning childhood seizures. My son was born having seizures, multiple times a day. He barely walked by his 3rd birthday. He has been on medication for 2 years and has had no change. We recently got a call to try the ketogenic diet or M.A.D . I’m concerned about how he will do on it. He doesn’t really talk but communicates in his own way with us.
I am sorry to hear about this difficult situation you have. The good news about MAD or keto is that you don’t really risk anything to try it.
Let us know if we can help.