Thursday, December 19, 2013
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.
Wednesday, December 18, 2013
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.