We are at war. Make no mistake about it, inside our New England-style Cape Cod, just down the Potomac from the home of George Washington – the man who fought alongside brave and struggling men for freedom and the beginning of our new world – we are fighting the battle of a lifetime. The enemy? Epilepsy.
I have thrust myself into the epilepsy community. I have scoured the internet for support groups and blogs. I have bought and read several books. With this new knowledge and an acceptance that this is OUR fight now, we are trudging forward, feet already sore and tired from the long walk, but prepared, regardless, to fight until we win.
Our weapon of choice right now is the Modified Atkins Diet. It sounds familiar because it is. Skinny women everywhere have touted that their svelte bodies have come from the low-carb, high protein diet that Dr. Atkins made popular about a decade ago. The diet that Noah is on, however, is different. It is similar to the ketogenic diet – a diet so rigid that every gram must be weighed, each gram of food must be consumed, and most importantly, nearly all calories come from fat, with barely any carbs or protein. Think of that cheesecake you love to eat: so delicious, so full of fat and at least a week’s worth of guilt. Well, that cheesecake (sans the graham cracker crust and with Stevia instead of sugar) is a perfect example of a keto meal. Fat. Fat. Fat. The Modified Atkins Diet, like the keto diet, is mostly about fat, but with adequate protein and without the rigid weighing of food.
Noah is quite literally armed with fat. He now walks around the house wielding a bottle of heavy whipping cream. He doesn’t chug it like milk, because mo matter how much sweetener I put in it, no matter whether it’s chocolate and decadent, apparently it’s no match for good old-fashioned milk. But Noah will likely not see milk again for several years. Same goes for rice. And pasta. And bread – basically, all the foods that bring me utter pleasure.
I grieved for Noah before we put him on this diet. I cried at the idea of him not eating mashed potatoes. Oh God, it seemed so terrible. But is it? Really? No. What is much worse is watching Noah run up to me with a toothy grin, then watching, helpless, as his blonde head bobs in front of me. He loses his balance and teeters to the floor. I poke him and laugh. “Oops!” I say in a high-pitched, fun voice. He’ll look at me with those blue eyes, their sparkle disappearing from the anti-seizure meds, and he’ll smile back. Big, white teeth, and so damn cute it hurts. I feel so full of love, and yet so empty in those moments. Those moments have come between ten and 18 times a day for months, and months. His record for seizures in a day is 32.
Armed with oil, butter, mayo, and cream – and still that glimmer of hope – we are leading Noah through this war. We’ve seen such an improvement in him. For the most part, his seizures have decreased by about 50%. He’s brighter, happier, and more vocal. Unfortunately we’re also dealing with dehydration, which is a side affect of this diet and needs to be carefully managed. It’s a constant concern, unending stress. But just a small battle in this war against epilepsy, a war so many others are also fighting. Noah is at the front lines with an ear infection, a cold, and some mean, mean molars breaking through. But you know what? That amazing little boy is still smiling. Still laughing.
So, maybe we’re not leading Noah through this battle. We have his back, we are his protectors. But it seems that Noah is leading us, armed with a smile.
***For more information about the Ketogenic Diet or the Modified Atkins Diet, we have posted new links.
You all are amazing!! I feel that Noah will continue to surprise all of us in the years to come. Thank you for taking the time to tell this unfolding story of hope and triumph. Absolutely amazing….
We continue to cheer and pray for all of you!!
Hello! I don’t know how to contact you privately so I am sending you a message this way in hopes that you will contact me privately. My little one who is now 2 1/2 was born with a little something extra (down Syndrome) but our biggest battle has been a seizure disorder-diagnosed since age 10months. I would love for you to email privately as I would like to get together with you on your efforts for more awareness be brought about for epilepsy. I will say that word some times and people have no idea what I am talking about-so sad. I live in Maryland so fromm your story of your location I am not far from you. I would love to advocate with you to help not only our little ones but also all the little ones who will have to fight this battle. We started out with Infantile Spasms and now have atonic seizures (drop Seizures) and have been on what feels like a million medications and also the ketogenic diet. My email is nmills25@verizon.net. Look forward in hearing from you!! Take care of that sweet Noah and Atley!!! Nicole
I don’t have a way to send this privately so please forgive me but I have a friend who has three autistic children and fosters several other special needs children and she posted this on her facebook page:
He has been making a lot of improvements since February because of the hyperbaric chamber treatments and a whole lot of prayer, but the speech explosion we think is due to a new nutritional supplement I stumbled across online called NutriiVeda. It is marketed for weightloss, but is is helping a lot of autistic and apraxic kids and adults to start speaking and a lot of other things. So kids with siezure disorders have even been able to redure or come off their meds. They don’t even know how it is helping, but it is the best results we have ever seen (and we have tried nearly everything). Right now he is saying his numbers up to 10. He is very motivated
Her son was completely non-verbal for years. So it’s obviously a really big deal for them but the seizure disorder comment caught my eye and I thought it might be something for you all? Forgive the intrusion but I just wouldn’t feel right if I didn’t at least tell you about it.
I pray for you and your sweet family every day. My youngest two are the same age as your two wonderful blessings so I am constantly reminded of you.
Much love and hugs!
Scottie
Hi Erin,
WOW, I’m so thrilled for Noah! What an awesome job you and Mike are doing caring for him. I’m so glad to hear that he’s doing better and the seizures have improved.
I look forward to hearing how he’s doing all the time. Will & I still pray for him all the time.
Hang in there! You’re a wonderful mother!
Vickie Smith
You guys are awesome. I am glad the diet is helping Noah.
That is awesome that the diet seems to be working for Noah!!
I have a friend that I went to high school with who lives in Alexandria VA. She and her husband have a son with epilepsy. She is the one that made this http://seizuretracker.com . This is her blog http://medical-maze.blogspot.com/ and this is her email lisamoss99@aol.com . I was just thinking that since you live close and she has dealt with this terrible disease for awhile, she may be someone else you could talk to.
Still here with you. . . Noah is blessed to have parents who keep fighting the good fight for him. Your efforts will not be in vain.
Praying for health and healing for Noah and for strength for you and your husband to keep pressing on . . .
Go Noah you are a precious little one . . .
It is wonderful that you are working so hard for your sweet boy! I’m delighted you have discovered something that has reduced his seizures. May God continue on being with you and guiding you to provide him with the best life and thank you for educating us!
Have you looked into Vit D supplements? I’m trying that with my kids’ health issues. http://www.VitaminDCouncil.org