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Going to husband's neuro appointment today... wish us luck!
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<blockquote data-quote="gcvmom" data-source="post: 193113" data-attributes="member: 3444"><p>Well, it didn't go the way I thought it would. And I am SOOOO glad we didn't go through this hospital for his surgery because they act like a friggin' chop shop!</p><p> </p><p>husband is switching to Trileptal. Rationale: Neuro feels he has, at the very least, a sensitivity to Lamictal which could explain the intermittent rash -- it comes out every now and then when he's also exposed to perhaps another trigger. Who knows. Neuro also feels that the insomnia husband had on it would only get worse if he increases the dosage to address the breakthrough seizures. I'm not sure I agree with that, but he's the doctor.</p><p> </p><p>Neuro said as far as the mood issues go, he's not a psychiatrist and doesn't want to get into trying to treat two problems with one medication. So I declared to husband that if he starts to get grouchy again, I was going to book him with the psychiatrist to address that whole can of worms. No comment from husband, just a smile and a nod.</p><p> </p><p>So I'm going to go ahead and fill it through mail order (which buys me two more weeks of stability <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite8" alt=":D" title="Big Grin :D" loading="lazy" data-shortname=":D" />) . Then after he's been on it two weeks, if no seizures he's to gradually discontinue the Lamictal.</p><p> </p><p>Meanwhile, we get a call from the surgeon's office that they've finally, FINALLY scheduled his followup MRI and EEG -- for FRIDAY in Los Angeles (a 50-mile drive for us that takes one hour with no traffic and two hours+ with, and we'd be coming home in rush-hour traffic). So now I have to scramble and make arrangements for someone to pick the kids up from school. That was also the night his parents were going to come for dinner, so maybe we can get the to help out (since thankfully difficult child 2 is somewhat stable, I don't think I'll have to worry about mother in law slapping him again).</p><p> </p><p>Oh, and there's more! This idiot neuro starts to tell husband what the worst case scenario is if he doesn't respond to Trileptal... blah, blah, blah (husband is not the type of person you want to burden with stuff like this because he will just freak out internally) "If you fail two more seizure medications and are still having seizures, we'll probably just need to go in there and take out the whole hippocampus on the right side." What the blankety-blank-blank???!!!</p><p> </p><p>Okay, here's the problem I have with this guy. He treats epilepsy patients. The cause of epilepsy is really not always understood. So when they figure out which part of the brain is having the seizures, and it can't be controlled with medications, the take it out. </p><p> </p><p>In husband's case, we have a KNOWN structural ABNORMALITY that is causing his seizures. And we know that when they removed the last one, they found another tiny one not far from it. But they didn't want to mess with it because it was really small and in a more sensitive part of his temporal lobe. They weren't interested in just hacking out a huge chunk of brain. They went in to specifically remove only the offending part -- the size of a grape. So I have a problem when this other guy starts talking about removing a larger area of brain tissue just because that's the way they do things in his shop. Sheesh. It's akin to amputating for a mole, in my opinion.</p><p> </p><p>Soooo... husband is a little freaked about what the guy said. I reminded him that his surgeon has a different view. He can try the medication change, and I'll be ready to call the psychiatrist at the first sign of a mood swing!</p><p> </p><p>Sigh. I hope this isn't the beginning of the end, because things have been so calm and peaceful around here lately, I was actually starting to enjoy life.</p></blockquote><p></p>
[QUOTE="gcvmom, post: 193113, member: 3444"] Well, it didn't go the way I thought it would. And I am SOOOO glad we didn't go through this hospital for his surgery because they act like a friggin' chop shop! husband is switching to Trileptal. Rationale: Neuro feels he has, at the very least, a sensitivity to Lamictal which could explain the intermittent rash -- it comes out every now and then when he's also exposed to perhaps another trigger. Who knows. Neuro also feels that the insomnia husband had on it would only get worse if he increases the dosage to address the breakthrough seizures. I'm not sure I agree with that, but he's the doctor. Neuro said as far as the mood issues go, he's not a psychiatrist and doesn't want to get into trying to treat two problems with one medication. So I declared to husband that if he starts to get grouchy again, I was going to book him with the psychiatrist to address that whole can of worms. No comment from husband, just a smile and a nod. So I'm going to go ahead and fill it through mail order (which buys me two more weeks of stability :D) . Then after he's been on it two weeks, if no seizures he's to gradually discontinue the Lamictal. Meanwhile, we get a call from the surgeon's office that they've finally, FINALLY scheduled his followup MRI and EEG -- for FRIDAY in Los Angeles (a 50-mile drive for us that takes one hour with no traffic and two hours+ with, and we'd be coming home in rush-hour traffic). So now I have to scramble and make arrangements for someone to pick the kids up from school. That was also the night his parents were going to come for dinner, so maybe we can get the to help out (since thankfully difficult child 2 is somewhat stable, I don't think I'll have to worry about mother in law slapping him again). Oh, and there's more! This idiot neuro starts to tell husband what the worst case scenario is if he doesn't respond to Trileptal... blah, blah, blah (husband is not the type of person you want to burden with stuff like this because he will just freak out internally) "If you fail two more seizure medications and are still having seizures, we'll probably just need to go in there and take out the whole hippocampus on the right side." What the blankety-blank-blank???!!! Okay, here's the problem I have with this guy. He treats epilepsy patients. The cause of epilepsy is really not always understood. So when they figure out which part of the brain is having the seizures, and it can't be controlled with medications, the take it out. In husband's case, we have a KNOWN structural ABNORMALITY that is causing his seizures. And we know that when they removed the last one, they found another tiny one not far from it. But they didn't want to mess with it because it was really small and in a more sensitive part of his temporal lobe. They weren't interested in just hacking out a huge chunk of brain. They went in to specifically remove only the offending part -- the size of a grape. So I have a problem when this other guy starts talking about removing a larger area of brain tissue just because that's the way they do things in his shop. Sheesh. It's akin to amputating for a mole, in my opinion. Soooo... husband is a little freaked about what the guy said. I reminded him that his surgeon has a different view. He can try the medication change, and I'll be ready to call the psychiatrist at the first sign of a mood swing! Sigh. I hope this isn't the beginning of the end, because things have been so calm and peaceful around here lately, I was actually starting to enjoy life. [/QUOTE]
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Going to husband's neuro appointment today... wish us luck!
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