The Incredible Magical Egg

Through much trial and error, I have discovered the incredible, magical power of the egg. An egg-a simple gooey substance of stuff inside a hard outer shell-is our brain elixir. Before we understood that Alex was having constant seizure activity, and before we put him on seizure medicine to help control that activity, he would have meltdowns that lasted for hours. I was pulling out my hair, trying every behavioral tactic I could find to help him have some self-control. But he would repeat to me, "Mommy, make it stop. Make my brain stop!" These were the meltdowns that led to my insistence on an EEG to understand what was going on in that little brain. But before we discovered that Alex was having constant seizures, and the noise in his brain was making it impossible to function, I tried to solve for the meltdowns. I began to look at his meltdowns the way I look at my own emotional collapses during an ultra run. I always tell newbies ultra runners, as soon as you start having negative thoughts during your ultra runs, it's time to eat. So, when Alex started melting down, I started to feed him. Initially I chose popped chips and other easy to eat and digest foods. But those were all wrong. They made the problem worse. Lots of carbs and sugars, feeding the craziness in his brain. So, I looked around to see what we had that was high in fat. The only thing I could think of was an egg, scrambled in butter, with lots of salt to make it more yummy, and a glass of high fat milk or cream. The hard part was getting him to eat it while he was crying hysterically. But once he got one bite in, he wanted another and another and by the time he finished his egg, he had stopped crying. In fact, he returned to our old Alex. It was as though I had given him a sedative, without the negative side effects. Once he started seizure medicine, he no longer experienced these crazy meltdowns, but he still got upset and cranky over small things. My solution has become to feed him an egg in butter, every day. If he eats eggs in the morning, he is pretty even keeled all day, and if he is off his keel, then I feed him one as a snack in the afternoon. I mentioned this fact to our neurologist the other day and he said, yes, he has heard that eggs can work like this for the brain. But why? (and um, why didn't anyone mention this to me before?...) I suspect the egg has a perfect mixture of fat and protein, with Omega-3 fatty acids and other vitamins and minerals that make it the most amazing, magical brain food around. I have become the biggest proponent of a low sugar high fat diet, and truly believe in the magic of the egg. If you can get hold of free range, grass fed chicken eggs, the cholesterol is significantly lower.

The Mid-Year Grant Review

Every fall I meet with our grant recipients, either in person in their labs or via skype, to speak with them about their progress on research The Baby Alex Foundation is funding. We have given over $250,000 in seed grants since 2009, and the work we have funded is pretty incredible. Although brain injuries can be devastating, the field of pediatric brain injury research is one of the fields where research is making significant progress. If Alex had been born today, his life would have taken a different course. In just these past six years since Alex was born, his shunt has become outdated. Newer shunts on the market today have many fewer risks over a lifetime. Rather than having to undergo countless MRI's and CT scans with sedation, he would have had a simple helmet attached to his head and a peaceful room to rest in while the machine captured images. If he had been entered into one of the clinical trials underway, he might have been given one of the new drugs on the market which may have had the ability to arrest brain injury following an insult, and perhaps his cerebral palsy would have been milder. The research we fund does not help Alex today. That's okay, because someone somewhere conducted research on countless topics which helped Alex survive and thrive in ways he would not have if he had been born 12 years ago, or 50 years ago. So, when we meet the researchers who have spent their lives trying to improve the future for children, we are inspired and profoundly proud to be a part of it all. Both of the 2013 research projects are looking at ways that the brain reacts to insults, such as a lack of oxygen or an infection, and how early interventions might arrest injury to brain cells. In just six months, they have presented findings to national conferences and have written papers to be published in medical journals. And both plan to apply for larger grants from the NIH for further research and possible clinical trials. As we head into the winter and make plans for our next year of fundraising, we find renewed strength in our mission and efforts from following the progress of the research we fund. Alex sat in on one of the skype meetings. As much as the researchers inspire us, Alex inspires them. He brings a human element to the lab work. He serves as a model for what we all want for a child with brain damage, or any child for that matter--a happy, inquisitive kid. Our team at the Foundation is growing, and our reach is increasing and at these times, I feel we are improving the world.

Power Moms

In Fortune Magazine this month, there is an article about the 50 most powerful women in business. Reading it makes me feel as small as I feel when I browse the pages of Pottery Barn Kids, and wonder if I've made my children's childhoods meaningless by depriving them of a boat bed with matching everything. How do these women do it, seriously? How are they mommy's and wives and superpowers all in one? How do they get away from their families long enough to make a difference in the world? Who takes care of their kids when they come down with pneumonia? Alex gets pneumonia at least once a winter, and he is, right now, lying in bed after 10 days of coughing out the pneumonia that settled into his right lung. Who would stand with him in the steam shower if I were out being powerful in the world? Who would open the Kleenex to examine the yellow gunk he coughs up between bites of bacon if I were not sitting at the breakfast table? I am in such demand these days that it took me three tries to get my flu shot at Costco. The first two times Alex's school called to tell me he was having a pre-seizure headache and I needed to drop everything and get over there. On the third try, I pretended to be related to the elderly man in front of me, snuck in front of him in line, and snagged his shot before racing off to retrieve one of the children. I could almost hear a sneer from the long flu shot line, "Soccer Moms, you are all the same!" Over the last six years, I have held an internal emotional battle with myself for feeling occasionally dissatisfied with being at home with the kids and not out being something else in the wider world. The other day Izzy said to me, "Really, you worked, Mommy? You really used to work?" Yes, yes I did, once. "What did you DO?" I thought about that one since I didn't really want to lie to the kids, but we don't exactly discuss my previous career. Alex was there too and he was equally as interested. "Mommy used to be Wonder Woman in her younger days, but I gave that all up to be your Mommy." Both kids burst out laughing, proud and completely convinced that I used to carry a golden rope that made everyone tell the truth (if ONLY!). I told them it's our secret, and so it is, and we don't tell anyone else about it. Once in a while they will ask me if I ever did this or that when I was Wonder Woman and of course, I did! The ultimate threat to my children when they misbehave is that I will go back to work and they will have to stay with a nanny. The idea of losing Mommy to the outside working world is simply unimaginable, a nightmare (or nightmirror, as Izzy says). I was feeling particularly argumentative with myself after browsing the Fortune Magazine article and I spent some time looking at the pictures of these women and wondering what it was that made them so powerful. It is hard to read that from a picture. And then last night, as I snuggled next to Alex at bedtime, he suddenly shot up and announced, "Mommy, wake up!" His sudden outburst sent a dozen scenarios racing through my mind. Was he having a seizure, about to vomit, having trouble breathing? "I won!" he shouted. Then I wondered if he had lost his mind. "I won, and you are right, kindergarten is like a game of chess." Then I remembered our conversation from that morning at breakfast. Alex has been very frustrated that his teachers harp on him in the morning to unpack his backpack. He's always the only one not ready for class to begin, because he sits there, bundled up in his mittens and hat, with his enormous backpack sitting in front of him blocking his view of the teacher. He sits and he waits, and he daydreams and eventually, his teachers get after him and he wants to cry. So, I suggested he preempt their admonitions by unpacking before they have a chance to get after him. "Kindergarten is like a game of chess," I explained to our little chess champ. "If you know what moves the other pieces are going to make, you can preempt those moves and go after the king and win." And so he did, and now he wins every morning, and there are no more tears, and in fact he has begun to apply the chess analogy to everyday life. I'm sure Sheryl Sandberg has put a few kings in check mate. I wonder how many she snagged from the kitchen table, in her pajamas. Well, she's a mom, so maybe she's snagged a few at breakfast, too.

Dancing

Today I read a story in the New Yorker about a woman who lost her baby at 19 weeks gestation. He was born on the bathroom floor of a hotel in Mongolia. The mother, a writer who was traveling on assignment, held him briefly, alive and wriggling, and hugged him as he slipped away in her arms. For one magical moment, she was a mother. This short life in her arms changed her, forever. She fell apart, her marriage crumbled, and her grief filled the quiet places of her solitude. Grief, like death, is suffered alone. Before I had children, I'm sure I would have felt very sorry for the mother. I would have said, as I always used to say about these kinds of things, "Well, it wasn't meant to be..." But so much has changed since I slipped my index finger into the palm of Alex's hand, just long enough to tell him, "Mommy's here, Alex, everything's going to be okay," before they swept him off, already intubated, into the dungeon of intensive care. I no longer believe that things were meant or not meant to be. I believe that there are times when the cosmos is off balance and things are not as they should have been. As I read the story, I could see where the tragedy was leading, and I kept thinking to myself, "No, no this isn't going to happen. The story is NOT going to end badly. There's going to be a happy ending. There must be." Watching the tragedy unfold was almost too much to read. In fact, I skipped parts. It was like watching the movie I replay in my head of the day I set out for a walk in the woods with our horse and the dogs. I want to skip parts, to believe it will end differently, to hope that if I just close the magazine, I won't have to get to the end, and I will never have to know what really happens. I won't have to feel the tug of the horse's lead line as he rears, or rethink the logic behind my letting go of the line so as not to be pulled to the ground, or listen to the sound of the hoof as it embeds itself into flesh and fluid, or experience again the instant panic when I knew our lives had changed forever. If I just close the magazine, the end will never come. I was reading the New Yorker piece today, sitting next to Izzy, who was watching the Nutcracker Ballet for the 100th time on the iPad. She is obsessed with her tiny mouse part which she will dance in her first performance this December. She dreams big, and her immense talent makes the dream seem less like a dream and more like a movie's opening scenes. She prances around the house with grace, leaps into my arms lightly, then lands and twirls. Alex joins in and he twirls and he leaps and he lands like a foal in my arms. His arms and legs flail and his dead weight strains my lower back, and I tell him he's awesome. I need to steady him for a few moments before I send him on his way around our kitchen island. If Alex had been born healthy, I would not be home with the kids in the late afternoons, to watch cotton candy sunsets settle over the marsh behind our house and dance the the dance of the Sugar Plum Fairies. No one chooses tragedy. But not all the bad is always bad, or only bad. I wonder if the writer of the New Yorker piece wrote with such depth before her tragedy. I wonder if I would be as in love with being my children's Mommy if we hadn't all suffered so much from the hoof of a horse, or the poor judgement of the Mommy. There's no part of my past more interesting or important than these afternoons, catching Alex and Izzy as they leap into my arms and twirl away and come back again. I can still feel them in my arms when I fall asleep.

School and Seizures

As the start of school approached this week, I was in a panic. Alex's episodes of pre-seizure headaches have increased to at least once a week and if something isn't done about them, they turn into seizures. I know that Alex gets tired with noise and chaos, and this often brings on these headaches. So, how was he possibly going to handle school? After many discussions with his school principal, nurse, social worker and original kindergarten teacher, I realized we needed a second set of eyes in the classroom. How was one teacher going to manage 18 other kindergarteners and recognize that Alex wasn't well, soon enough to get him to the nurse safely? The night before school, I had a final conversation with his principal who has been incredibly understanding, and he changed Alex's room assignment to a smaller, special ed inclusion room that has a second teacher. This second teacher has had experience with children with CP and epilepsy. We finally met both teachers a few minutes before school started, and decided this was a much better fit. I think we are all thankful of the joint effort to make these changes, because later that day, on the first afternoon of class, Alex started feeling sick. The special ed teacher recognized right off that he needed to go to the nurse. In the nurse's office, he felt better, but when I picked him up, I knew he wasn't doing well. Within 5 minutes of being in the car, he had a seizure. By sending Alex to the quiet and cool office of the nurse, she likely saved Alex from having a seizure right there in the classroom. She bought him some time. I was able to do the pressure point massage and within 8 minutes, the seizure passed. No Valium. We learned many lessons from this first day of school, one of which is that Alex can only handle a half day of school for the immediate future. Maybe he will work up to a full day by the end of the year, but he might not. He will have a 504 plan to state what accommodations he gets and we will revise it as necessary. Mommy School this year is simplified, although it is actually much more academically focused. We cover math, language, reading, writing, art, and many fine and gross motor skills through three activities: IXL (online) math (Khan Academy supplemental when necessary); reading with a world geography focus (such as the amazing Geronimo Stilton series) and art (through an in-depth study of the artists). The schedule looks like this: 7:30 20 minutes of reading with Mommy, (Geronimo Stilton and the Mystery in Venice), which inspires 20 minutes of artwork depicting something that the story inspired, and then we get ready to leave for school. At 1:30, with everyone back from school, we work on IXL math for an hour (30 mins each child). The child not doing IXL is working on an art project. We decided to study Van Gogh this fall. We did Matisse last spring and Jackson Pollock over the summer. But the kids think it's amazing that Van Gogh cut off his own ear, and Izzy is in love with Sunflowers, so the kids quickly decided on Van Gogh. I feel like I have been pulling all nighters at exam time, except that I am 20 years older and don't get to catch up on sleep when the exams are over, but I am hopeful that things are on track for a good year and those all nighters will have been worth it.

Goodbye Cheerios: The Atkins Diet for Seizure Control

Have you ever documented what your children eat, for even one day? You might be shocked to learn that they are consuming WAY more starch and sugar than you imagined. In my search for non-medical means of controlling Alex's seizures, I stumbled (why I had to stumble, I am not sure...we should have been driven in this direction when his seizures first started...) upon The Johns Hopkins Epilepsy Center and their Ketogenic Diet. The Ketogenic Diet allows for just 10 grams of carbs in a child's daily diet. It is extremely strict and difficult to maintain for some families but it has incredible results in limiting or completely stopping seizures in children with difficult to control epilepsy. In the recent edition of Ketogenic Diets: Treatments for Epilepsy and Other Disorders, there is also a review of the Modified Atkins Diet (MOD) for epilepsy. We decided to start with the MOD, because we are able to do it without a hospital stay and we wanted to see if we got results without such a strict diet. We aim for 50 grams carbs/day. These days, a lot of people are on these kinds of diets, and mostly people get great results, so we were all for making a change. The first step was to clean out the cupboards (GOODBYE CHEERIOS)and stock up on healthy foods. The second step was to come up with some healthy recipes, enter them into www.myfitnesspass.com to see how they stack up on the health scale. The last step was to sit down as a family and discuss our new diet. We are all committed to eating a better diet, eliminating sugar and starchy foods, and to support Alex by not indulging (as in having an ice cream cone) in front of him. We committed. I feel as though I need to cook a lot more than I used to, and I need to think creatively about how to get my kids to increase their veggie intake, but the results have been awesome. We ALL feel better. Alex's personality is much more stable, and he does not have sugar lows. The one day this summer that he consumed white sugar in the form of candy given to him while we were out and about, he came home, had a meltdown, went to bed, woke up in the night repeatedly, woke up looking pale, and had a seizure by lunchtime. Yuck, white sugar! Fortunately, Alex is totally on board with our new diet and he helps me count carbs every meal. He likes to know his total carb intake before bed. He often tells people wise things like, "No thank you, I don't want any s'mores. I can't eat that much sugar." After this last sugar-induced seizure, he gets how dangerous white sugar is, and I feel pretty confident that he will turn candy down in the future if offered while I am not around. Getting him involved has been crucial. And now that we are getting used to our new diet, we don't miss the sweet stuff. Even yogurt seems too sweet for us, and sugary cereals are just disgusting. We should have made this change a long time ago. As a runner, I thought I needed my pasta and oatmeal bread...but my 30 mile runs haven't been affected in any negative way.

Good dog! Seizure Detect Dogs a MUST for Anyone with Epilepsy

Our little seizure dog, Snowy, only 6 months old and still learning basic obedience (and only recently house broken) is a natural seizure detect dog. That means that when Alex is not feeling well, even though he may look completely fine, she smells a change in his body, and she lets us know. Mostly, she sniffs him feverishly from head to toe. Interestingly, she sniffs mostly around his neck and head, and jumps around. Potter, now 18 months old and not adopted as a seizure dog, is also a natural seizure detect dog, although we have no intention of training him to become a response dog. Now we have a double alarm system. Alex has had one seizure this summer. He has also had one pre-seizure headache, and we were able to act to prevent that from turning into a seizure. HOURS before both incidences, the dogs predicted them. For this last one, not only did Potter sniff him all over, Potter gave me his "I'm alarmed!" intense dog look with ears up, which means something is very wrong. So, now we grapple with the question of what to do when we know Alex isn't well, according to our natural alarm system. Sending him to his usual activities is not an option, as within a few hours he is suffering a migraine which then becomes a seizure. We will get that figured out this fall. For now, we pay a lot of attention to the dogs. This morning, like most mornings, neither dog gave Alex any attention. They ate their breakfast and played and when they got tired, Snowy lay down at Alex's feet and Potter got into his bed. How do you find a seizure detect dog? They are born, not bred. They need to have a good disposition and an excellent nose. Both of our dogs have hound in them--Snowy is part Bloodhound and Potter is part Coonhound. Probably getting them as puppies helped, because they have grown up with our kids and know what we smell like normally, so that if there is a change in smell, they detect it. They also sleep with our kids, usually on their dog beds, but at times, right up there on our kids' pillows. When Alex has a seizure, we put Snowy next to him and she stays there until he is awake and well again. A good dog also has a good owner who pays attention everyday. I know what normal good morning sniffing looks like, and now I know what an alarm looks like. I keep track of it all in Alex's seizure journal. Alex knows what it looks like now too. Even he recognized yesterday that Potter and Snowy were telling him he was sick. He looked at me and said, "Well, Mom, it looks like the dogs think I don't feel well this morning." When he work up from his migraine, he said, "So, I guess you need to just ask the dogs, Mom, if you want to know how I'm feeling." Seizure dogs are not just for the patient, they are for the whole family. I don't know if they will predict Alex's seizures 100% of the time, but I know if they think something is wrong, I need to take it seriously. They help me relax with my morning coffee, and give me plenty of time to make a plan for Alex.