Monday, April 29, 2013
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!
Thursday, April 18, 2013
For the past two days, I have been teaching kindness to Alex and Izzy's preschool classes. Following the workshops, someone told me that the public school teachers complain constantly that all they do is discipline their students and that kids are just not kind to each other. I specifically designed my value-based language arts curriculum to address these problems with discipline, which boils down to a lack of character. I firmly believe that if the schools spent the first part of every school day teaching values, they would significantly reduce their discipline problems and increase the acts of kindness they witness on a daily basis. Students who live by good values create a strong and self-reliant character, and do not need to bully. Our quote for kindness comes from Plato, "Be kind, for everyone you meet is fighting a harder battle." Our classwork includes role playing, where one student has a problem and the other student shows support and kindness. In the end, they are required to make physical contact, whether it is by means of a handshake, hug or pat on the back. The kids connect, and they love it. I have been immensely impressed with my little 3, 4 and 5 year olds. They participate wholeheartedly and go home with an understanding of the values I teach. The homework for kindness requires the students to perform at least one deliberate act of kindness (hugs for Mommy, a love letter to Daddy, a nice deed for a neighbor) and then to draw a picture of themselves doing this good deed. If they can write, they may add text. Many people comment about how kind Alex and Izzy are to each other. They hug and kiss, they say "I love you" multiple times a day, they give out compliments to each other. People ask me how I ended up with such kind children. I always respond, "I force them to be kind". Even a small act of un-kindness gets discipline. I pick my battles and this one is a battle I fight. Values--all of them--are learned. In the beginning, they may be a bit forced, because they may not come naturally to children, but in the end (like when your kids go off to college), the values will be a part of their character, and living by these values will be as natural as if your children had been born knowing them. Spend a few minutes each day reinforcing the importance of kindness this week with your children. Seeing them do something nice for someone else may give you some comfort from the events of the past week. We are all mourning for Boston. As my grandmother, Mimi, use to say when she was feeling sad, "It's time to do something nice for someone." Show kindness and help your children grow into kind human beings.
Friday, April 5, 2013
Alex's left has has not progressed as fast as we had thought it would. He still has very limited control over it, despite our best efforts at yoga, strength training, karate, etc. Much to his frustration, we decided to cast his good hand and make that lefty work. When he was about three, we did this constraint induced therapy for about three weeks, with excellent results. The minute you cast the good hand, the brain switches and starts to focus on the weak hand. This is especially important because Alex's right hand has become very strong and capable of acting without his lefty, and so we need to take that side out of the picture for a while and encourage the right side of his brain to work. In the past, we have added a few shots of botox to the muscles most affected by the CP in his left arm. Botox incapacitates those muscles, which then relax and allow the other muscles to work harder and become stronger. After about three months, the botox wears off and the other muscles have had a chance to grow stronger, and the whole arm and hand function better. We did not do the botox this time, because we were not at the clinic that offers it, but may consider another round of botox before we head into the summer. Alex also got a brace for his left foot, which straightens it out as he walks and runs, and forces his heal down so that he walks heal-toe, which will lengthen that large muscle of the calf (the same one I ripped apart this fall), as it is not growing as fast as the other muscle of the calf. The tight calf muscle is therefore restricting his leg movement and makes the leg appear shorter. A long day for Alex yesterday (and for Mommy and Izzy). Fortunately, the cast on his arm is waterproof, and can be submerged in water-in fact, you can even swim in it-because around 9pm, Alex got hit with the stomach bug and threw up all over himself and right down into the hand of his cast. Yuck. Nothing like having a stiff, hot plaster around your hand and arm over slippery brown vomit. After a long bath, and much soaking, we finally got the cast clean. I tried to blow dry it to speed up the drying process. This morning it was dry. We may have to remove a bit earlier than planned.
If you have a child who demands a lot of attention, chances are your other children may feel left out, and in fact, they are probably correct in feeling this way. Although we have tried hard to give equal attention to Izzy, the fact of the situation is that Alex needs a lot more help and support than she does. At times, she acts out to get attention. Since Alex has started on the trileptol, he hasn't had a single meltdown. The reason we took him for the EEG was because he was having these strange meltdowns and he would tell me that he couldn't control his brain. Our neurologist is very good, and I am so thankful that he listened to me. Sure enough, Alex was having constant spikes in electrical activity, which resulted in an out of control brain, even when he wasn't have obvious seizures. It is amazing that Alex was able to articulate that to me. Izzy has never had a meltdown. She gets mad and slams doors and tells us all not to look at her and to leave her alone, but she gets over it quickly and she always remains in control. Fortunately, she doesn't imitate Alex's meltdowns to get attention. But, she has her own way of pushing everyone's buttons and there are times when I want to sent her to boarding school and then I realize what she really needs is a big hug. This winter has been particularly challenging for many reasons, and Izzy has shown the stress in her behavior. So, last weekend, I took her for a girls' overnight in NYC and we stayed with two of her favorite people on earth, who are like surrogate grandparents to her. When we attended the Matisse exhibit a few weeks ago, Izzy decided she loves NYC. So, that's where we went when I realized she needed some individual and focused attention with Mommy. She loves everything about the city, the noise, the cabs, the tall buildings, the fashion and she especially loves her surrogate grandparents and their apartment which she announced, after inspecting the bathroom, was "perfect!" The two of us went to the zoo, saw a real polar bear, visited the Plaza, had ice cream, fed the horses who pull carriages just like Cinderella's carriage, and ate pizza in the train station. We were zonked on the return trip on the train. She was a new kid the next day. Even more grown up that usual, all smiles, full of stories. She is old enough now to remember that trip. She talks about it all the time. If you have children who sometimes get the short end of the stick, plan a day alone with one at a time, on a regular basis. I remember my Dad used to do this with us. Every year, he took us individually on a special trip, right up until the year he passed away. The last conversation I had with him on the phone, when I was in Indonesia and he was at home getting ready for Christmas, was that he planned to take me to the Plaza for brunch to celebrate my 24th birthday when I came home from my extended trip. He died on my birthday that year, and we never had a chance to have that brunch. When Izzy turns five, we'll make up for it, and celebrate at the Plaza, over brunch, a special day for both of us.