Diet and Neurology Management

Last week I ripped my calf muscle and will be incapacitated all winter. I have a wrapped leg, boot and a walker to get around. Some days the muscle is in such spasm, I can barely move. As a result, our schedule has changed completely. I now do rehab in the pool very day for 60-90 mins, always with one of the kids while the other is in school. That is a very long time for a little body (theirs) to be in the pool. Yesterday, we unintentionally did an interesting experiment with food, partially due to our new schedule. I have always suspected that what Alex eats affects his neurological function, far beyond the sugar highs that parents recognize in their children when they eat sweets. Since Alex's first seizures, we have tried to keep him on a higher fat, lower carb diet. It is hard to attribute behavior changes to food intake, but observationally, the change in diet seems to work. Yesterday, we proved it further, this time with such certainty that I am now the world's greatest proponent of high fat diets in kids with brain injuries. Although I packed a healthy high fat diet for Alex's lunch, I also included popped chips and other high carb options. Throughout the day, he consumed mostly high carbs, low fat foods, and had spent over an hour swimming hard in the pool. Around 2pm, the minute we walked into the house, he started to melt down. The meltdown lasted a good 30 minutes and he was totally out of control. It was one of those meltdowns that appear neurological, as though Alex has lost all control of his brain. I thought about what he had eaten that day, and decided I better feed him some fat. I cooked two eggs in 2 tbs of butter, and added half an avocado with olive oil and salt. Still sniffling and fussing, he devoured the meal, along with a glass of whole milk. Within minutes, he returned to normal. Our sweet, peaceful Alex came back and he went on with his play. We didn't have a single other issue all day. I recently learned of a grant application with the NIH to examine the effect of exercise and nutrition in children with traumatic brain injuries. I hope the NIH funds this one, even though I feel any parent who has tried diet and exercise to improve physical and neurological function in their child with TBI needs no study to prove their positive discoveries. It would be nice to have a study to document the benefits of non-pharmaceutical therapies in children with neurological challenges. I wonder how that might change school lunch programs and PE, for all children.

Ironman Arizona and Ironkids Arizona

The Ironman went about as well as it possibly could have, given he bare minimum that Erik and I had trained for it. We finished, long after dark and into the cold, but we raced the entire race together. We had lots of time to catch up with each other on the run. Nothing like a 6 hour run to give you alone time with your spouse. Not all of the spouses racing together that day crossed the line holding hands, but Erik and I did. With hands held high and tears in our eyes, we crossed the line and listened as Mike Rielly announced our names and donned us an "Iron couple." Pretty moving, and one of those moments we will have to think about as we grow old and decrepit. The day before, Alex and Izzy participated in the Ironkids 1 miler. Tis is such as great race for the kids. We saw tremendous improvements in both of them over the Ironkids race they did in Utah in May. For one, Izzy participated this time. Ad second, Alex ran the entire race without walking, a sign of his increased endurance. As always, we tell our kids they won because they participated. They got awesome medals. Alex brought his to share day this week and had the chance to tell about his great race. What a confidence builder.

On to Arizona

So much has happened in the last two weeks, and here is a very slim recap. The Big Brad Ultra 50 Miler was BRUTAL! Only 10 people finished, which included 2 women (I was not one of them). The first woman hammered the race so hard, I am in complete awe and wonder what she eats for breakfast. When I hit mile 35, I was past the time limit for that stage and so was pulled off the 50 and entered in the 35 mile race, in which I took second, behind the woman who won the VT 100 last year. We both had gotten lost on the 50 mile course, repeatedly, and so she dropped out at 35. I barely hobbled across the line at 35, and had no intentions of going another step. Then Hurricane Sandy hit us hard, here on the CT shore. Our shoreline was crushed. Made the downpours during the Big Brad Ultra look like nothing. We were fine since we sit on 14 foot stilts. We are thankful, and respect our good fortune. Now we are headed to Ironman Arizona, most likely our last race of the season. This is Erik's first Ironman and we hope to finish, safe and sound, together. I am going into this race incredibly undertrained and will be just cruising on my happiness for simply being our there on a long course. Hopefully the legs will hold up with my good humor. Alex and Izzy will race the Ironkids one miler the day before, which is always a highlight of the weekend. Our values this week are Optimism and Determination. I believe we will need a heavy dose of both.

Rolfing to Increase CP Movement

While in Utah this spring, I was introduced to a deep tissue massage called Rolfing. The idea behind Rolfing is that you work an area from the origin of the problem. Rolfing has done a lot to reduce my pain and inflammation, while giving me greater range of motion in problem areas. Although Rolfing was not originally designed for children, I realized that much of Alex's uneven gait and limb difference comes from tight muscles and ligaments, and thought Alex might benefit from it. So, our beloved Sachi, an amazing Rolfer who finds pain where you had no idea pain existed, agreed to give Alex a shot. Alex, like most preemies, does not like massage. He loves hugs, but nothing that rubs his skin. But Sachi, working her magic, eased him into the idea and feeling of Rolfing, and now he can't wait to see her every week. He walks into her studio tight, and walks out very loose and feeling good. She has also taught me how to massage Alex's problem areas and with a little coaxing, he now allows me to give him a massage every night before bed. We work on elongating muscles in his back that shorten his leg length, loosening the areas around his spine which are pulling his spine out of place, and working his arms and hand which continue to be very tight and problematic. There is a visible difference at the end of every massage. Although Rolfing is expensive, it is worth it if you can afford it. For anyone who can not afford professional massage for a child with physical disabilities, slowing and gently introducing your child to your own hands may help. Massage has incredible healing powers. I am amazed at how it improves my body and mind, and continue to be impressed with the results we get with Alex.

Postponing An Ultra

The Grindstone 100 mile race starts tonight at 6pm. I have been training all summer and fall for the race, overcoming training interruptions such as illnesses and Alex's seizures, to get into shape to tackle this monster. On Wednesday, the morning of my departure for the race, Alex woke up having seizures, the first sign that we were all getting sick. One of the many drawbacks to having small children in school is that we spend much of the school year sick. Every year I think we will be less sick, and I plan races during the school year, and yet every year I have to bow out of some of them. Erik, worried that I would be terribly disappointed, graciously offered to tend the kids all weekend and support a 100 mile run, if I felt the need to complete the race plan this weekend. Supportive spouses are very important! But, I'm not disappointed. There are ALWAYS other races. I need to be here with Alex, who takes several days to recover from his seizures, and Izzy, who is also sick and needing her Mommy. I am an ultra distance runner, but I am Mommy first. I may sneak in a rather long trail run this weekend, though. Maybe just 25 miles or so...

Running Mt. Chocorua and Mt. Washington Presidential Range

Training in New Hampshire this summer, in preparation for the Grindstone 100 mile race, I had two excellent mountain runs which I highly recommend to anyone visiting the region. You may want to hike, not run, particularly the Presidential Range, but I''l share it with you from a runner's perspective. My husband, Erik, and I ran to the top of Mt. Chocorua, one extremely humid morning. The deer flies were thick, and the mosquitoes swarmed around our heads, even though we were drenched in bug spray. We let Harry Potter run off leash as there were few other hikers on the trail. The route we took was about 8 miles, and it quickly led us above the tree line. It's always fun to reach the tree line and to begin to breath in the scent of pine and take in views of the surrounding lakes and mountains. Harry Potter had no problem until we reached the sheer rock face. He probably would have been able to find a way up to the very tippy top, but as he was new to mountain running, we decided that I would sit with him while Erik ran to the top and back down to us. Potter put his head down and immediately fell asleep while waiting for Erik's return. He is an incredibly efficient runner. He runs, rests, cools his body in the streams, stays well-hydrated, and when resting, he falls asleep. I will try to remember all of this for the 100 miler, particularly the part about sleeping. Sometimes a short nap is all you need to get up and run another fifty miles. Later in the summer, I ran part of the Presidential Range, about 14 miles in total, alone with Potter. We started at the base of the Cog Railway, and ascended the Jewel Trail. Only about 4 miles long, this trail heads up, and up and up. You travel over 4000 feet in 4 miles, and at some point, I found myself hiking, no longer running, and wishing I had taken the longer, less rocky and less steep, Crawford Trail. Once we hit the top of Mt. Washington, we had a snack, then headed over to Mt. Jefferson, then on to Mt. Adams. About the time we had Adams in our sights, I decided it was time to check out Potter's paws. His pads were wearing thin, and concerned that they might crack and bleed and become too sore to run, we cut our trip short and turned around. This was a good move because by the time we returned to our car, after 6-7 hours of running/hiking, we were both tired and he was ready for a nap. In fact, he slept for the rest of the day, and all of the next day. He's a good, faithful dog. He has also taught me much about endurance running. Again, I will try to follow his instruction and get some sleep following my 100 miler.

Infection and Seizures

As it turns out, Alex's last seizures were caused by a strep throat. He had no throat pain, and no other symptoms except a bit of a headache and stomach ache. At the urgent care facility where we took him once he recuperated from the seizures, the doctor did not even recommend a strep test. But we insisted. We knew something had set off the seizures. Sure enough, he was positive. So, now we know that ear infections and strep will set off Alex's seizures. I suspect that the intensity of the seizure will be determined by how tired and run down he is. So, our best defense is sleep and rest. It also means that this year I will be spending even more time with my kids, because I can't leave Alex with a babysitter for a long period of time when there are so many variables concerning Alex's health. Erik met us last week where I have been training in NH, for a 2 week vacation. We have been altnating our training so that one of us is with the kids at all times. And, as I mentioned in my last blog, I ran many of my miles-40, in fact-in a 2 mile circle. Despite our difficulties, I managed to log my first 100 miles/week. I'll take 3 days to just swim and bike, and then hammer out the miles once again. Then we go home, summer over, training camps concluded, and we are back to preschool and mommy school and training at 4am and on weekends. Hopefully I will have done my homework for the Grindstone 100, which turns out to be a lot tougher than I had first thought. Only 7 women finished in the 38 hour time cutoff last year. Yikes.