Lately, this blog has centered on me. Sorry about that. Maybe it is me all the time that needs the most advocacy! LOL!
Today, I want to start giving the updates for everyone else in the house.
Let's start with the hubby. He's Stubborn. As you can see, he needs a capital S.
We have had the CPAP for three weeks now and do I not wake up every morning between 3am and 6am, because he is tossing, turning and NOT wearing the mask!
The first reason/excuse is that he keeps forgetting. The second one was it was suffocating him. Huh? How can something supplying oxygen to your lungs, brain and body suffocate you? He has a full face mask and anybody who has every seen these things knows they are huge. Not the thing to feel claustrophobic in.
I reminded him that he needs to wear it at least 4 hours a night for it to even be effective...
The third reason/excuse came after my speech. "Well," he said, "I must be doing at least 4 hours, so that's why it is off by the time I start waking you up."
You have to have been there to see my blank, staring face. "How can you have it on for 4 full hours, " I retorted, "if you don't go to bed until 12am or 1am!?!" "And, then start tossing by 3am!?!"
Do you know the old saying, "Charity starts at home?"So does advocacy.
So, we then had a good sit-down with the other two Hosers in my house and everyone contributed to the conversation. I sat in the corner like a determined arbitrator and advocate, armed with the computer ready to spew out the evils of untreated OSA. I really didn't need it. My two other Masketeers know first hand what can happen. By the time, they finished with him, he slunked away, like a properly admonished child and the next night, I slept until 7am!
I want to really celebrate, but this is not over. Why, with the amount of Depakote he takes is he still having breakthrough seizures at night? And, if he is feeling like he can't breathe, are they exacerbating his condition or because of it?
His neurologist told me, we may never get it where he is seizure free. Why? I think it is time for a follow-up and ask some hard questions.
As for the anxiety/depression disorder, he is AWOL on that, too. Hasn't seen the therapist in months. In his defense, we have been a little tight and the therapist cost $40.00 each visit. But he has also stopped the meds.
*Sigh*
To give him credit, he has not slipped back into the mood swings, which were surreal and dangerous to watch. But, he is also not advancing. He is battling this condition alone. Not good.
Here's where if anyone has suggestions, I am willing to listen. I still believe he has so much to offer, but is stuck. Like a broken record (remember those? No? Okay, like a scratched DVD) that can't get past a certain spot. Anything anyone thinks they can suggest, please do.
Tomorrow, I will discuss Andrew, the light of my life and I think, my greatest accomplishment.
Take care,
Judi
Showing posts with label seizures. Show all posts
Showing posts with label seizures. Show all posts
Saturday, January 31, 2009
Saturday, October 18, 2008
Looking Back...
April 2007. That was the month. The month that everything changed. And yet, it was the month that everything began to come together.
You know how you have a question in the back of your mind, nagging at you and never getting answered? That's what it was like for me.
My son had been born in 1996. Of course, like all mothers, I thought he was gorgeous. What was strange was that everywhere I went, so did other people. Women tripped across the street to gaze at him. At the babysitters, other mothers brushed past me AND their own kids, to say hello to him. Obviously, he had something. He had a superman curl, dimples and a cleft. OMG! I figured he was going to be a rake, and what was I going to do with him?
He was athletic too. He was the kind of child who didn't stop until he learned a thing. Learning to ride his two-wheeler didn't stop until nightfall. By then, he could speed up, stop on a dime, and turn in complete circles. Rollerblading met the same kind of determination. When he turned six, we began baseball. Too borring. The following year, soccer. Now, that was the sport! He could run all day, zigzagging up and down a field. I think he was in heaven! The following year, we added junior firefighters. He had wanted to be one since he was four, and now at eight, he meant to keep that promise.
So off we went to competitions with other fire houses and participated in parades, representing our neighborhood. I felt very proud. Because my first son had autism, I felt so blessed and redeemed to have my young son. Here was the child who was going to do things, and go places. He was outgoing and made more friends than I could keep up with. Everyone knew him, young and old. But more importantly, everyone liked him. He was generally considered a good kid.
And yet, there were questions. In hindsight, we put puzzle pieces together and say, hmmm...
He never could sleep well. After his first year of life, sleep became something of a battle. Either he needed to be near you or swaddled. He could not get himself to sleep. And you couldn't trick him, either, that smartypants! He could tell you were going to lay him down. If you thought he was in a deep sleep, those eyes would pop back open and stare at you. By two or three, there were no more naps during the day at all. And the energy was already off the chart.
At first, we thought, well he is just all boy. But, he snored. Like an old man with loose dentures. Everyone thought it was cure and told me, "how can you worry about a boy, so handsome, energetic and bright?" He was off the growth charts and never got sick.
But something else began to happen. He began to throw tantrums. He became easily frustrated. The problems in school began with being kicked out of pre-school. My darling little superboy had kicked a kid in the head and proceeded to destroy a room. I was appalled.
The tantrums continued. When he got to kindergarten, I stopped working full-time for good. My own disabilitiies were making it difficult anyway, and I needed to be there when the phone rang. And rang it did. By first grade, he was not concentrating anymore. He couldn't keep his attention on what was being taught. He was daydreaming all the time. By second grade, his grades began to slip. He couldn't keep a morning routine, even if you tatooed it on his arm. Even at home, I began to notice the bad memory. The joke was that if the dog depended on him for food, it would starve. All this with an energy drive that drove his brother and I crazy!
And yet, the sports began to suffer. It seemed like he couldn't sustain the energy needed for the field. He was constantly being pulled out of the game. He was not making plays like he had in the beginning. He was missing perfectly good shots and becoming clumsy with his moves. In fact, we noticed it at home. He was always falling, scraping and hurting himself. At firefighter meetings, he began to fall asleep. And memorizing the rules and procedures left him completely confused.
Then third grade began. Here, the social worker was brought in. He was becoming a "problem child." Disruptive and seemingly noncaring, he began to exhibit signs of depression. The social worker wanted to put him in a peer group she had started, but she began to notice something. My son would disappear. While sitting there, he would just stop moving and be gone. Then he might shake himself and he would be back. She suspected seizures.
Thus began the doctors. I still have her note to me requesting his first EEG. When the results were normal, everyone changed their minds and began to say he had ADHD. It covered some things, but not all. I fought it from day one.
Years ealier, my first son had been misdiagnosed with ADHD. I suspected more was going on with my second son, especially with the poor memory. It was not that he wasn't concentrating or paying attention. He literally could NOT remember. No one paid me any mind at all.
Try the meds they said. No difference, except he now had insomnia. And the depression worsened. He began to know something was wrong, but he couldn't tell me what it was. And I couldn't tell him what it was either. I began to feel we were losing him. He became fearful and apprehensive.
We tried therapy and finally natural remedies. There, we began to see a small improvement, especially in his schoolwork, though his memory was inconsistent. Fourth grade was the best year he ever had in school. On the herbals, he made honor roll three times that year. He made student of the month twice and I though, okay, I can deal with this. He just needs some supplements.
He was still clumsy though. That year we saw a sprained right ankle, a fractured inside and outside left ankle, and a bone chip from his left foot. With all the sitting around after those accidents, he began to gain weight and he left that school year in a boot cast.
But we were sure he was coming back. His grades were wonderful. The school staff thought he was just the greatest. He volunteered to teach kindergarteners about school and help them with their activities. Fifth grade started out on top of the world. Due to a move, he had to go to a different school, but I assured him he would still see a lot of his old friends, and since he was such a whip at making new ones, by the time he got to middle school, he would know twice as many people.
Well, as the saying goes, Didn't happen.
The problems came back with a vengeance. The calls began again. His temper; he is being rude to teachers. He is unreasonable, won't cooperate. Classwork is atrocious, and manners are even worse. As I cried inside, I headed up to the school. Here we go again. What is going on? I really can't take this. Where is my happy-go-lucky little man? What is robbing him of his innocence, making him someone I don't even know. What is happening to his memories? Why is his mood so miserable?
These are the questions that swirled in my mind when the month of April 2007 began. So, the day he asked to go out and play, it was a glimpse of a child that was disappearing. A boy whose happy childhood was about to enter the world of chronic illness.
You know how you have a question in the back of your mind, nagging at you and never getting answered? That's what it was like for me.
My son had been born in 1996. Of course, like all mothers, I thought he was gorgeous. What was strange was that everywhere I went, so did other people. Women tripped across the street to gaze at him. At the babysitters, other mothers brushed past me AND their own kids, to say hello to him. Obviously, he had something. He had a superman curl, dimples and a cleft. OMG! I figured he was going to be a rake, and what was I going to do with him?
He was athletic too. He was the kind of child who didn't stop until he learned a thing. Learning to ride his two-wheeler didn't stop until nightfall. By then, he could speed up, stop on a dime, and turn in complete circles. Rollerblading met the same kind of determination. When he turned six, we began baseball. Too borring. The following year, soccer. Now, that was the sport! He could run all day, zigzagging up and down a field. I think he was in heaven! The following year, we added junior firefighters. He had wanted to be one since he was four, and now at eight, he meant to keep that promise.
So off we went to competitions with other fire houses and participated in parades, representing our neighborhood. I felt very proud. Because my first son had autism, I felt so blessed and redeemed to have my young son. Here was the child who was going to do things, and go places. He was outgoing and made more friends than I could keep up with. Everyone knew him, young and old. But more importantly, everyone liked him. He was generally considered a good kid.
And yet, there were questions. In hindsight, we put puzzle pieces together and say, hmmm...
He never could sleep well. After his first year of life, sleep became something of a battle. Either he needed to be near you or swaddled. He could not get himself to sleep. And you couldn't trick him, either, that smartypants! He could tell you were going to lay him down. If you thought he was in a deep sleep, those eyes would pop back open and stare at you. By two or three, there were no more naps during the day at all. And the energy was already off the chart.
At first, we thought, well he is just all boy. But, he snored. Like an old man with loose dentures. Everyone thought it was cure and told me, "how can you worry about a boy, so handsome, energetic and bright?" He was off the growth charts and never got sick.
But something else began to happen. He began to throw tantrums. He became easily frustrated. The problems in school began with being kicked out of pre-school. My darling little superboy had kicked a kid in the head and proceeded to destroy a room. I was appalled.
The tantrums continued. When he got to kindergarten, I stopped working full-time for good. My own disabilitiies were making it difficult anyway, and I needed to be there when the phone rang. And rang it did. By first grade, he was not concentrating anymore. He couldn't keep his attention on what was being taught. He was daydreaming all the time. By second grade, his grades began to slip. He couldn't keep a morning routine, even if you tatooed it on his arm. Even at home, I began to notice the bad memory. The joke was that if the dog depended on him for food, it would starve. All this with an energy drive that drove his brother and I crazy!
And yet, the sports began to suffer. It seemed like he couldn't sustain the energy needed for the field. He was constantly being pulled out of the game. He was not making plays like he had in the beginning. He was missing perfectly good shots and becoming clumsy with his moves. In fact, we noticed it at home. He was always falling, scraping and hurting himself. At firefighter meetings, he began to fall asleep. And memorizing the rules and procedures left him completely confused.
Then third grade began. Here, the social worker was brought in. He was becoming a "problem child." Disruptive and seemingly noncaring, he began to exhibit signs of depression. The social worker wanted to put him in a peer group she had started, but she began to notice something. My son would disappear. While sitting there, he would just stop moving and be gone. Then he might shake himself and he would be back. She suspected seizures.
Thus began the doctors. I still have her note to me requesting his first EEG. When the results were normal, everyone changed their minds and began to say he had ADHD. It covered some things, but not all. I fought it from day one.
Years ealier, my first son had been misdiagnosed with ADHD. I suspected more was going on with my second son, especially with the poor memory. It was not that he wasn't concentrating or paying attention. He literally could NOT remember. No one paid me any mind at all.
Try the meds they said. No difference, except he now had insomnia. And the depression worsened. He began to know something was wrong, but he couldn't tell me what it was. And I couldn't tell him what it was either. I began to feel we were losing him. He became fearful and apprehensive.
We tried therapy and finally natural remedies. There, we began to see a small improvement, especially in his schoolwork, though his memory was inconsistent. Fourth grade was the best year he ever had in school. On the herbals, he made honor roll three times that year. He made student of the month twice and I though, okay, I can deal with this. He just needs some supplements.
He was still clumsy though. That year we saw a sprained right ankle, a fractured inside and outside left ankle, and a bone chip from his left foot. With all the sitting around after those accidents, he began to gain weight and he left that school year in a boot cast.
But we were sure he was coming back. His grades were wonderful. The school staff thought he was just the greatest. He volunteered to teach kindergarteners about school and help them with their activities. Fifth grade started out on top of the world. Due to a move, he had to go to a different school, but I assured him he would still see a lot of his old friends, and since he was such a whip at making new ones, by the time he got to middle school, he would know twice as many people.
Well, as the saying goes, Didn't happen.
The problems came back with a vengeance. The calls began again. His temper; he is being rude to teachers. He is unreasonable, won't cooperate. Classwork is atrocious, and manners are even worse. As I cried inside, I headed up to the school. Here we go again. What is going on? I really can't take this. Where is my happy-go-lucky little man? What is robbing him of his innocence, making him someone I don't even know. What is happening to his memories? Why is his mood so miserable?
These are the questions that swirled in my mind when the month of April 2007 began. So, the day he asked to go out and play, it was a glimpse of a child that was disappearing. A boy whose happy childhood was about to enter the world of chronic illness.
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