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.

Casting Results

Poor little Alex wore his left leg cast for two weeks, and although it got wet, twice, and had sand and wood chips floating around inside by the time we got it off, he was a trooper about wearing it. The results were significant. His left foot had begun to turn inward so severely that it disabled his run. His left foot was hitting his right leg and even walking was made more difficult. The cast turned that around. He walks and runs well now, better than ever before. And that is after just 2 weeks with the cast. He now has a very stiff day brace and another night brace. We hope these will keep his muscles stretched out and growing as he grows. He grew an inch in 6 weeks, which may have been at the root of the overwhelming change in his left leg movement. With CP, muscles stay tight, and often don't grow at the same rate as the rest of the body. Wearing the cast fatigued his problematic muscles, stretched them and allowed the other muscles to gain strength. It was a plus all around.

Casting Lefty Leg

Last week, we made the tough decision to cast Alex's bad leg. Due to his growth, and possibly his seizures, Alex's left leg has gotten much worse. Last week, his leg had turned so far inward that it was striking his right leg with every step. Alex really could not run anymore. We did a gait analysis through CT Children's Medical Center and it showed that there is one very misbehaved muscle, quite deep and strong, that is not growing as he grows. It is tight, and as is the case with CP, does not relax when he moves. If we leave it as it is, he will lose his ability to walk and run with ease. It simply won't grow as he grows. So, we cast it, and once that cast comes off, he will spend day and night in a very stiff brace. We are hoping to avoid surgery down the road to lengthen the muscle. The poor kid is hot and tired, but he never complains. He runs on his cast as though it isn't there. On the way out of the doctor's office, he said to me, "Well, Mumma, we have to look on the bright side. At least I'm not on crutches."

Snow White the Therapy Dog

After much research, we discovered that Alex is too young for an official seizure dog. Most organizations require kids to be between the ages of 7-12, mostly because there is a lot involved in the owner training and managing the dog. We have done the next best thing, which is to locate a puppy with all the characteristics one might want in a seizure dog, and to train her ourselves through the obedience levels up to therapy dog, while using some of the techniques to train her to respond to a seizure. Frankly we hope Alex never has another seizure so she may not have a chance to get that training. Snow White, who is white as snow, with black spots as dark as ebony, including one that is shaped like a heart on her back, and a tongue the color of a rose, sort of, is the snuggliest puppy we have ever had. Part bloodhound, she also has the best nose on her of any dog we have ever seen. She seems to feel a natural pull toward Alex, which most dogs don't. She sleeps in his room and as she matures, we plan to transition her to his bed, although we may have to buy a bigger bed. Her paws are enormous. She is not the runner dog that Harry Potter is, and that is fine. Potter, who is an amazing caretaker, has begun to tip us off that Alex isn't feeling well. Three times he sniffed Alex all over on mornings when Alex wasn't well...we think he can smell the body changes. We hope Snowy will be as helpful. As far as therapy goes, Snowy is already proving her worth in dog food. When Alex is frustrated, he often goes into his room and reads to Snowy, or pats her "magic ears" which are as soft as velvet. If you have a child with special needs, I recommend you get a dog. There is nothing like the non-judgemental character of a dog, who will listen to anything and serve up a load of love, to ease a child's frustrations. Although I need to vacuum up dog hair every day, I feel Snow White is an investment in Alex's mental and physical health. In fact, she's been good for all of us. I often catch Erik snuggled up with her watching late night TV on the couch. I can handle the extra dog hair.

Breakthrough Seizures

Breakthrough seizures happen, despite medicine. Every so often, something happens that triggers the brain and it overpowers the dose of medicine someone is taking. Hopefully the medicine at least makes it a smaller seizure than it would have been. Alex had a breakthrough seizure last week. We had warning signs, but missed them at first. All weekend, he was cranky and agitated. That I noticed but I hoped he could just get extra sleep and feel better. But, he kept waking up at night, which has always been a sign that his brain was over active. On Monday I took him swimming, which I am realizing is not a good idea when I suspect his brain might be heating up. Something about swimming helps to trigger them. I can't decide if it is the chlorine, but it might be. Chlorine gives me a headache, so I think it might be antagonizing Alex's brain. Alex swam at least twice a day last summer without a single seizure--and he wasn't on drugs yet--until he got strep throat and then he had one. Then on Tuesday morning, he said he saw an orange glow around his dad. Minutes later, he got dizzy and then went through the usual motions of his seizures--vomiting, shaking, eye rolling. We had to give him valium and he slept for several hours. When he woke up, he had a migraine, which also seems to accompany the seizures. By early afternoon, he was finally able to wake up, talk and eat a little bit. He was talking very slowly for a few days, but after about a week, he seems to be back to his old self. We will continue to take it easy this week. We also upped his dose of medicine slightly, because he was on a very low dose, just barely within the therapeutic limits. Although I try to focus on today, and this year, and not get ahead of myself too much and ask myself, for example, who is going to give him rectal valium when he goes to college and has a seizure in his bed at 5am...but I am a huge planner and I usually have several plans in my pocket for every possible life scenario I might find myself in. When Alex had his seizure, Harry Potter knew what was happening. Alex is not particularly attached to Potter because he is Izzy's dog and Izzy won't share. Potter is also a bit rough for Alex who gets knocked over easily. But, he is a hound with a good sniffer and he spent the entire day pacing around Alex's bed whining and growling and trying to tell me that something was very wrong. This was all after the seizure, not before. But it gave me the idea of finding a therapy dog for Alex who would be trained to sense his seizures are coming, so that Alex will be able to take the necessary steps to protect himself. So, I'm hunting for just the right dog and just the right trainer. If anyone has any thoughts on this one, post a comment...I read and appreciate them all!