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update on difficult child from Buddy
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<blockquote data-quote="buddy" data-source="post: 472201" data-attributes="member: 12886"><p>Hi steely, thanks for the good questions. Yes, it would seem like the concerta at a high dose could cause that but the enzyme disorder is one that 6-7% of the population has and the paper is in my purse right now but there are very specific enzyme systems and the one he has very little of is one that helps digest and process medication. It is diagnosed through a blood test for liver enzymes. So the large dose of Concerta that goes in his mouth is not what becomes available for his brain to use, most is flushed out. In fact though, we all agree it is not like one can just keep increasing this with all the unknowns so the reason we even tried a new medication is because we have started decreasing the concerta and need to find something to help. The AP's are on the big NO WAY list for his type of enzyme disorder. We tried two before we knew...one at age 4 and one around 4th grade or so. Awful experience, just like this time but he was smaller and I could handle it all. Once off it for a couple of days, he was back to himself. So for the enzyme issue... his psychiatrist was actually someone who has studied this issue (by coincidence, it was diagnosis before we met her) at Mayo Clinic and she said there are some ways to dose that can maybe avoid the problems that happen but we would not do that out patient or during school SInce there are other options we may not even go there because it was so dangerous when two of them were tried before we knew. The other reason it is high is because dosing for a brain injury is different from ADHD, he can't be off of it or Ritalin whichever we use on a given day....for any of his awake time because he is far to impulsive to be safe. He does not even sit and eat when he is off Ritalin. It has made the difference between his living in an institution and not going to school to being in a home and having family to grow up with, go on vacations and to be in public school and make friends like this summer in our pool. It does work beautifully! Thank heaven. The Clonidine was used before he ever started Ritalin and then was d/c for many years. As he got bigger and stronger it was added because it helps his aggression so much. The aggression was there before Concerta so does not seem to be caused by it. But certainly it does take some of the happy go lucky kid away, I think it does increase his grumpiness. The lyrica was chosen because of his age and teh extreme headaches he got after seizures. Yes, he has not complained of seizure symptoms except for a few times (was daily...and they were recorded to be happening all day and all night on and off). His headaches were gone until the Lamictal was started, boo hoo. </p><p>Prozac and ssri's are on the no no list too, and the first time it was tried he got very depressed. Then they tried to start it in minute amounts and go up to a dose that helps. I agreed and it worked. not that it cleared up teh anxiety but he started saying he felt x, y, z and would tell me he loved me in a genuine way, gave gentle sweet hugs, etc. It was crazy how things changed for the good! I do question it because it was started in response to his seizure symtoms being misdiagnosed as depersonalization/derealization psychological symptoms. (lt sided temporal lobe can have these symptoms and obviously true since seizure medication worked and prozac never did help that issue).</p><p></p><p>SO, it is complicated and yes, I refused to let the admitting doctor start anything until old medication was out and all three docs consulted with the inpatent doctor. I have been on cell conversations and email all day with the neuro and she likes what I told admit doctor so whew, that helped. I also shared my concerns about them not understanding his brain injury and asked for her help in explaining it. </p><p>so the reason we started the lamictal was to see if we could reduce the concerta or at least not have to increase it anymore. It was chosen because there may still be seizure activity because of the sudden extreme behaviors that dont respond at times to any behavioral methods and then he gets tired and headaches again. it is much less now and he does't experience the symptoms (of feeling "fake") but the symptoms he can't identify we are concernd about. </p><p></p><p>Those are all great questions and unfortunately he just has that crazy kind of metabolism and I guess we are lucky to know about it. His pediatrician was the one wh figured it out. He actually had the MAX dose possible of an anesthesia when he was 3 for a sedated MRI...Never touched him. They couldn't believe it. Now we get it. </p><p></p><p>Oh, and you are right on...I did authorize ativan and it seemed to help a little bit. That is not on the no no list for him. I have always wondered if we just used a straight anti-anxiety medication if it would help. When he was younger they didn't want to but now???? I would love that they gave it, found it worked like a miracle and we could get rid of everything else but obviously that wont happen, sigh. One thing at a time.</p></blockquote><p></p>
[QUOTE="buddy, post: 472201, member: 12886"] Hi steely, thanks for the good questions. Yes, it would seem like the concerta at a high dose could cause that but the enzyme disorder is one that 6-7% of the population has and the paper is in my purse right now but there are very specific enzyme systems and the one he has very little of is one that helps digest and process medication. It is diagnosed through a blood test for liver enzymes. So the large dose of Concerta that goes in his mouth is not what becomes available for his brain to use, most is flushed out. In fact though, we all agree it is not like one can just keep increasing this with all the unknowns so the reason we even tried a new medication is because we have started decreasing the concerta and need to find something to help. The AP's are on the big NO WAY list for his type of enzyme disorder. We tried two before we knew...one at age 4 and one around 4th grade or so. Awful experience, just like this time but he was smaller and I could handle it all. Once off it for a couple of days, he was back to himself. So for the enzyme issue... his psychiatrist was actually someone who has studied this issue (by coincidence, it was diagnosis before we met her) at Mayo Clinic and she said there are some ways to dose that can maybe avoid the problems that happen but we would not do that out patient or during school SInce there are other options we may not even go there because it was so dangerous when two of them were tried before we knew. The other reason it is high is because dosing for a brain injury is different from ADHD, he can't be off of it or Ritalin whichever we use on a given day....for any of his awake time because he is far to impulsive to be safe. He does not even sit and eat when he is off Ritalin. It has made the difference between his living in an institution and not going to school to being in a home and having family to grow up with, go on vacations and to be in public school and make friends like this summer in our pool. It does work beautifully! Thank heaven. The Clonidine was used before he ever started Ritalin and then was d/c for many years. As he got bigger and stronger it was added because it helps his aggression so much. The aggression was there before Concerta so does not seem to be caused by it. But certainly it does take some of the happy go lucky kid away, I think it does increase his grumpiness. The lyrica was chosen because of his age and teh extreme headaches he got after seizures. Yes, he has not complained of seizure symptoms except for a few times (was daily...and they were recorded to be happening all day and all night on and off). His headaches were gone until the Lamictal was started, boo hoo. Prozac and ssri's are on the no no list too, and the first time it was tried he got very depressed. Then they tried to start it in minute amounts and go up to a dose that helps. I agreed and it worked. not that it cleared up teh anxiety but he started saying he felt x, y, z and would tell me he loved me in a genuine way, gave gentle sweet hugs, etc. It was crazy how things changed for the good! I do question it because it was started in response to his seizure symtoms being misdiagnosed as depersonalization/derealization psychological symptoms. (lt sided temporal lobe can have these symptoms and obviously true since seizure medication worked and prozac never did help that issue). SO, it is complicated and yes, I refused to let the admitting doctor start anything until old medication was out and all three docs consulted with the inpatent doctor. I have been on cell conversations and email all day with the neuro and she likes what I told admit doctor so whew, that helped. I also shared my concerns about them not understanding his brain injury and asked for her help in explaining it. so the reason we started the lamictal was to see if we could reduce the concerta or at least not have to increase it anymore. It was chosen because there may still be seizure activity because of the sudden extreme behaviors that dont respond at times to any behavioral methods and then he gets tired and headaches again. it is much less now and he does't experience the symptoms (of feeling "fake") but the symptoms he can't identify we are concernd about. Those are all great questions and unfortunately he just has that crazy kind of metabolism and I guess we are lucky to know about it. His pediatrician was the one wh figured it out. He actually had the MAX dose possible of an anesthesia when he was 3 for a sedated MRI...Never touched him. They couldn't believe it. Now we get it. Oh, and you are right on...I did authorize ativan and it seemed to help a little bit. That is not on the no no list for him. I have always wondered if we just used a straight anti-anxiety medication if it would help. When he was younger they didn't want to but now???? I would love that they gave it, found it worked like a miracle and we could get rid of everything else but obviously that wont happen, sigh. One thing at a time. [/QUOTE]
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