So Jake has been on Intuniv for a bit now. There is a definite difference from Jake un-medicated and Jake with medication. With Intuniv they make 1 mg, 2 mg, 3 mg, and 4 mg tablets. 4 mg is the maximum dosage daily. The last time we went to the doctor he was hopping down the hallway, climbing in the room, etc so they recommended we bump from 3 to 4mg, the max dose. With all the other increases there would be a couple days of sleepy Jake. With this one...nothing. So I called the doctor and reported what I had seen. She suggested it was time we try something new. I agree.
The next step was stimulants. I had A LOT of reservations about this step. I have always said I didn't want for him to be on anything like Ritalin or Adderall. I don't know why, just because I have heard so many negative things about them. For some kids they work wonders. Stimulants are just a huge step. But we agreed. So I had to go get the prescription for Metadate CD, 20 mg and take it to the pharmacist. They are a controlled substance so they can't just call them in. $50 copay later, after the insurance saved us $247.99, we have a new bottle of pills.
So Monday evening I didn't give him his usual Intuniv. Tuesday morning at 8 am, I gave him the first dose. Now, some of you may wonder why on Earth would they give a child with Severe ADHD a stimulant?! Well, it has the reverse effect on these kids; it is a calming effect normally. It didn't take too long before I started to notice things were amiss. He was not calming down, in fact it seems to be wiring him. Oh yes, yes it was. It had a stimulant effect. He was shaking all over, his eyes were dilated, he was talking 90 miles an hour. His thoughts were disconnected and scattered with no pause between topic change. It was insane.
I call the doctor and they say, "No, it shouldn't do that to him. Don't give him anymore. It will wear off, don't worry. " So I watch and wait. He throws up, several times, I believe 5. There is no getting him to slow down. It scares me. I just keep watching him, looking at his eyes and taking his pulse. (It is fine, by the way.) So the doctor says, let's try Vyvanse. It is a different stimulant, a more purified form. Go get that prescription and take to the pharmacy. Go back in 15 minutes and they say, "Nope, you can't have it. We need prior authorization from the doctor. " Well no joke, I just got a different prescription filled. All the while, he is still not calming down. Still all shaky, talking fast, eyes dilated.
The nurse says she will call and get the authorization. Do not give him the Metadate on Wednesday, just give him the Intuniv until we get it figured out.
7 PM-Tuesday---we start trying to get him into bed because we figure it will be a rough night. He doesn't sleep. He can't. The medicine still has not worn off. Allen tries to get him to go to sleep. He won't. It wasn't like the normal no sleep. He just couldn't do it. So Allen finally comes to bed way way later, like midnight or so. Charley and I are in my bed because there was no point putting him in their room, Jake wasn't being quiet enough for him to sleep there. Well, Allen thinks Jake is sleeping. But really, not so much. So we keep telling him to try to sleep and checking on him every half hour, I think. I was up a lot last night. He was such a good boy though. He didn't do anything bad all night long. He just didn't sleep. He watched cartoons and looked at books. But no sleeping.
7:30 AM Wednesday...he's still awake. I call and leave a voice mail telling the nurse we do not want another stimulant. Just give us the Intuniv back!! She calls me when they open and seemed to think we should try the other one, it is more purified. I don't care; it is still a stimulant, purified or not. She tells me at some point the Intuniv may stop working all together. I tell her we will cross that bridge when we get there, but for now I don't want him on another stimulant that has the potential to do this to him.
So finally at about 10:10 this morning he fell asleep. He was up for over 26 hours. I woke him up to eat lunch and he went back to sleep right afterward. He is still sleeping. No more stimulants. If it works for your kid, more power to ya! But it did not work for him. He may not be perfect on the Intuniv but the 24 hours that he was on the Metadate were the most horrible thing ever. I had to sit there and watch him, just make sure that he didn't hurt himself or Charley and be able to do nothing, knowing full well that he was acting that way because of the pill *I* gave him. That sucked, a lot.
Here is the question this raised in me...If stimulants are supposed to calm children with ADHD and it didn't with Jake...it wired the poor kid for a full 24 hours with one pill....is their diagnosis right? How consistently does it calm these kids? If he is ADHD, shouldn't it have calmed him?? All I know is he will never take that pill again and I flushed the remaining 59 of them down the toilet. I didn't want them in the cabinet!
Wednesday, April 11, 2012
Thursday, April 5, 2012
The Whirlwind that is Our Life
I know, it has been forever since I posted. I'm sorry. Call me a slacker; I'm cool with it. In all actuality, my life seems insane these days. I don't even do something magnificent daily, it just is...yeah...breathing isn't optional or I'd cut it out to save time.
We went to the doctor a couple months ago and she put us on Intuniv. Started at 1 mg and have now worked up to the max dosage at 4 mg daily. If this doesn't work our next step is stimulants, Ritalin and the like. I have huge reservations about these. Before we go that route the doctor said she will check his heart over and make sure it is okay, because stimulants are bad if you have heart issues. As my mother has an irregular heartbeat, I will be sure they check it well. The Intuniv has been working well until his body gets used to it, then we transition back to crazy.
He seems to be having more and more night terrors; I hate night terrors. We have had to limit his television watching. He can no longer watch Finding Bigfoot or Animal Cops. Some might say, "Those aren't children friendly shows anyway." Well, you tell that to Jake! He loved them. But one night while he was sleeping Bigfoot bit his fingers. No more Finding Bigfoot. Another night he had a screaming fit on his aunt while he was spending the night. He was struggling to take a collar that was embedded in a dog's neck from being too tight for too long. No more Animal Cops. He caught a few minutes of Criminal Minds by accident one night. That night he was up on his knees in his bed, doing something to the wall. When my husband went to check on him, he was saying, "I gotta get him! NO! I gotta get that bad guy!!"
If left to his own devices he would never sleep. I'm not joking even a little bit. Read the previous post, No Sleep Ever. He is this way always. I don't understand how a child can convince their body that it doesn't need sleep. Jake doesn't sleep and his little brother, Charley, doesn't eat. I kinda think they may be the next step on the evolutionary ladder. I'm not going all religious. People adapt, that's all I'm sayin. Maybe they are super-humans. They have figured out a way to convince their bodies that it doesn't need basic necessities. I wish I could do this. I require food and sleep. I don't get enough of the sleep, but I cope.
Anyway...my life is boring and crazy, all at the same time. My days are monotonous. Get up, feed boys, get boys dressed, entertain boys until time for Jake to go to preschool. Put Jake on bus. Clean. Usually go see my mom. (She is my adult contact that keeps me sane most days.) Go get Jake off bus. Clean. Dinner. Baths. Bed. Do it again. Somewhere in there I check Jake's backpack for random things he cabbages onto. Today it is a little pocket full of tiny paper trimmings. Why? Who freakin knows. There are boys on the bus that take things to school with them. Either they are very giving children or Jake is manipulative. I say this because weekly I have to send something BACK on the bus and make him give it back to these boys. They give him things and he takes them. I have told him countless times to politely decline, that their mommies might get mad if they don't bring things home. Nope. They gave them to him so they must be his. I have sent back cars, school work, a blue man, marbles, sunglasses, pictures, etc. Then he tries to sneak things to school with him! He feels the need to take these boys something back. I have to check his backpack before school and after. He gets mad at me daily. "JUST STAY OUT OF MY BACKPACK! I DIDN'T PUT ANYTHING IN IT!" But low and behold, something always finds its way into one of the pockets.
Oh, wow, I really got off onto a tangent on that one. Anyway, the doctor said we needed to see the Ear, nose and throat doctor about his ear tubes, the dentist about his teeth and the pediatric ophthalmologist because of his lazy eye. He has always had a sleepy eye, since birth. He was a pirate, argh and things. But as of late we have noticed that in most pictures he has his head tilted back; I think it is because the lid droops too much. So we get to have that checked out and surgery may be in our future. Part of his sensory issue is texture. Things in his mouth that feel funny make him throw up. Because of this, he has thrown up A LOT in his 5 1/2 years of life. He has caused the enamel on his teeth to thin. Also, he hates to brush his teeth, another sensory thing. (If you haven't ever read about or experienced Sensory Processing Disorder or Sensory Integration Disorder, do it.) It is the craziest thing ever. It makes no sense and total sense all at once. It explains the totally off the wall things he does. It frustrates the hell out of me. SPD overlaps immensely with Autism. Things he does are classically autistic. He stims. He verbally stims like a madman. He makes loud, inappropriate noises all the time. For an hour at a time sometimes he is a siren. He isn't really a siren, that's just what is sounds like to me. To him it is calming. To me it is annoying. He does it in Walmart. You get evil looks from people when your kid is sitting in the cart rocking making the siren noise. Bite me, people, bite me. I have asked him if humming does the same thing for his body and he says no, it does not. So we are loud. That's an autistic thing. But he has been tested and they say he is NOT autistic. It's apparently all just sensory. Well, that overlap is so frustrating to me. How do you tell what's SPD and what isn't? When should I get concerned and start demanding something different? Do I just take their diagnosis and be okay with it or spend more money to find someone that says something different? And this is why I don't sleep! THAT'S HOW MY MIND IS! I just constantly worry that I don't do enough. That I'm missing something. That he isn't getting what he needs from me and can't tell me what it is he is missing because he doesn't know either.
I've come to realize that it's a daily battle. Maybe outward one day. Maybe he is on one and I have to physically restrain him to keep him from hurting himself or breaking something. Or to keep him from hurting me. He's super strong. Or maybe it's a battle that's completely inward. Maybe I'm just questioning everything. Everything that led to this point, everything we still face. We are lucky, I'm so aware of this. He's healthy. We are all healthy. My child does not have cancer or a life threatening illness. But he is different. I accept his differences and don't or won't write him off as a lost cause. But I know there will be people that are quick to do so. And that's where my job comes in. It's my job to refuse to let them do so. He isn't just a 'bad kid,' he can't help the things he does. I REALLY, to the core of my very being, believe this. I have had conversations with him. He has told me that he doesn't like to be bad, that he doesn't like to be in trouble, that he doesn't know why he does bad things, and that he is sorry. So, I believe him. He's my baby. I have to.
I don't know the point of this entry. Maybe just to vent. We all need to do so on occasion. And to catch everyone up. So I'm sorry this was so all-over-the-place. That's how my mind works. It's an exhausting place. Welcome to it!
We went to the doctor a couple months ago and she put us on Intuniv. Started at 1 mg and have now worked up to the max dosage at 4 mg daily. If this doesn't work our next step is stimulants, Ritalin and the like. I have huge reservations about these. Before we go that route the doctor said she will check his heart over and make sure it is okay, because stimulants are bad if you have heart issues. As my mother has an irregular heartbeat, I will be sure they check it well. The Intuniv has been working well until his body gets used to it, then we transition back to crazy.
He seems to be having more and more night terrors; I hate night terrors. We have had to limit his television watching. He can no longer watch Finding Bigfoot or Animal Cops. Some might say, "Those aren't children friendly shows anyway." Well, you tell that to Jake! He loved them. But one night while he was sleeping Bigfoot bit his fingers. No more Finding Bigfoot. Another night he had a screaming fit on his aunt while he was spending the night. He was struggling to take a collar that was embedded in a dog's neck from being too tight for too long. No more Animal Cops. He caught a few minutes of Criminal Minds by accident one night. That night he was up on his knees in his bed, doing something to the wall. When my husband went to check on him, he was saying, "I gotta get him! NO! I gotta get that bad guy!!"
If left to his own devices he would never sleep. I'm not joking even a little bit. Read the previous post, No Sleep Ever. He is this way always. I don't understand how a child can convince their body that it doesn't need sleep. Jake doesn't sleep and his little brother, Charley, doesn't eat. I kinda think they may be the next step on the evolutionary ladder. I'm not going all religious. People adapt, that's all I'm sayin. Maybe they are super-humans. They have figured out a way to convince their bodies that it doesn't need basic necessities. I wish I could do this. I require food and sleep. I don't get enough of the sleep, but I cope.
Anyway...my life is boring and crazy, all at the same time. My days are monotonous. Get up, feed boys, get boys dressed, entertain boys until time for Jake to go to preschool. Put Jake on bus. Clean. Usually go see my mom. (She is my adult contact that keeps me sane most days.) Go get Jake off bus. Clean. Dinner. Baths. Bed. Do it again. Somewhere in there I check Jake's backpack for random things he cabbages onto. Today it is a little pocket full of tiny paper trimmings. Why? Who freakin knows. There are boys on the bus that take things to school with them. Either they are very giving children or Jake is manipulative. I say this because weekly I have to send something BACK on the bus and make him give it back to these boys. They give him things and he takes them. I have told him countless times to politely decline, that their mommies might get mad if they don't bring things home. Nope. They gave them to him so they must be his. I have sent back cars, school work, a blue man, marbles, sunglasses, pictures, etc. Then he tries to sneak things to school with him! He feels the need to take these boys something back. I have to check his backpack before school and after. He gets mad at me daily. "JUST STAY OUT OF MY BACKPACK! I DIDN'T PUT ANYTHING IN IT!" But low and behold, something always finds its way into one of the pockets.
Oh, wow, I really got off onto a tangent on that one. Anyway, the doctor said we needed to see the Ear, nose and throat doctor about his ear tubes, the dentist about his teeth and the pediatric ophthalmologist because of his lazy eye. He has always had a sleepy eye, since birth. He was a pirate, argh and things. But as of late we have noticed that in most pictures he has his head tilted back; I think it is because the lid droops too much. So we get to have that checked out and surgery may be in our future. Part of his sensory issue is texture. Things in his mouth that feel funny make him throw up. Because of this, he has thrown up A LOT in his 5 1/2 years of life. He has caused the enamel on his teeth to thin. Also, he hates to brush his teeth, another sensory thing. (If you haven't ever read about or experienced Sensory Processing Disorder or Sensory Integration Disorder, do it.) It is the craziest thing ever. It makes no sense and total sense all at once. It explains the totally off the wall things he does. It frustrates the hell out of me. SPD overlaps immensely with Autism. Things he does are classically autistic. He stims. He verbally stims like a madman. He makes loud, inappropriate noises all the time. For an hour at a time sometimes he is a siren. He isn't really a siren, that's just what is sounds like to me. To him it is calming. To me it is annoying. He does it in Walmart. You get evil looks from people when your kid is sitting in the cart rocking making the siren noise. Bite me, people, bite me. I have asked him if humming does the same thing for his body and he says no, it does not. So we are loud. That's an autistic thing. But he has been tested and they say he is NOT autistic. It's apparently all just sensory. Well, that overlap is so frustrating to me. How do you tell what's SPD and what isn't? When should I get concerned and start demanding something different? Do I just take their diagnosis and be okay with it or spend more money to find someone that says something different? And this is why I don't sleep! THAT'S HOW MY MIND IS! I just constantly worry that I don't do enough. That I'm missing something. That he isn't getting what he needs from me and can't tell me what it is he is missing because he doesn't know either.
I've come to realize that it's a daily battle. Maybe outward one day. Maybe he is on one and I have to physically restrain him to keep him from hurting himself or breaking something. Or to keep him from hurting me. He's super strong. Or maybe it's a battle that's completely inward. Maybe I'm just questioning everything. Everything that led to this point, everything we still face. We are lucky, I'm so aware of this. He's healthy. We are all healthy. My child does not have cancer or a life threatening illness. But he is different. I accept his differences and don't or won't write him off as a lost cause. But I know there will be people that are quick to do so. And that's where my job comes in. It's my job to refuse to let them do so. He isn't just a 'bad kid,' he can't help the things he does. I REALLY, to the core of my very being, believe this. I have had conversations with him. He has told me that he doesn't like to be bad, that he doesn't like to be in trouble, that he doesn't know why he does bad things, and that he is sorry. So, I believe him. He's my baby. I have to.
I don't know the point of this entry. Maybe just to vent. We all need to do so on occasion. And to catch everyone up. So I'm sorry this was so all-over-the-place. That's how my mind works. It's an exhausting place. Welcome to it!
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