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General Parenting
Thought I'd vent if anyone cares to read it...
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<blockquote data-quote="slsh" data-source="post: 382975" data-attributes="member: 8"><p>I can't tell you how many neurologists I've chewed out and then fired. A common line I've gotten re: my oldest is "Well, gee, he has CP, of *course* he's going to have seizures." And we're talking status seizures - life-threatening stuff. I usually ask the neuro if that would be an acceptable plan of care if it were his/her kid. If that doesn't snap them out of their God-complex, then they're history in my book.</p><p></p><p>And the really sad/wonderful thing is that once I found the right neuro who didn't accept frequent seizures as the norm and who aggressively attacked the problem with medication additions and tweaks, my kid's been comparatively seizure free (knock wood) for going on 6 years now. I think he's had maybe 5 seizures since 08/2004, when for the longest time it was 1 every 3 months. </p><p></p><p>These docs may have degrees out the ears and may have a broader generalized knowledge about neuro stuff than I do, but if they're not going to get with the program, they're not worth my time and money, and most certainly not worth risking my son's well-being and potentially his life.</p><p></p><p>A doctor who doesn't listen to a parent's concerns is just begging to be fired, in my humble opinion.</p><p></p><p>Edited to add: Diazepam is an interesting choice for a first medication. Boo has classic grand mal (tonic clonic) seizures. The first medication was Carbatrol (a form of tegretol). Didn't hold him. We added Topamax which did okay for about a year but then he had the seizure of all seizures, so then they added Keppra. He's on pretty high doses of all 3, but they hold him. We use Diastat (rectal diazepam) when he has a seizure to try and stop it - works on the tonic clonic stuff, but about half the time he then goes into a partial complex seizure (no movements aside from twitching eyes, but not aware or alert). </p><p></p><p>Another thought, since neuro was so kind as to freak your kid out about potential breathing issues - can you get a script for an oxygen tank? We keep one around, just in case. It originally was requested by one of his school nurses who got anxious about breathing during a sz, but there have been a couple of times here at home when I was real glad to have it handy.</p></blockquote><p></p>
[QUOTE="slsh, post: 382975, member: 8"] I can't tell you how many neurologists I've chewed out and then fired. A common line I've gotten re: my oldest is "Well, gee, he has CP, of *course* he's going to have seizures." And we're talking status seizures - life-threatening stuff. I usually ask the neuro if that would be an acceptable plan of care if it were his/her kid. If that doesn't snap them out of their God-complex, then they're history in my book. And the really sad/wonderful thing is that once I found the right neuro who didn't accept frequent seizures as the norm and who aggressively attacked the problem with medication additions and tweaks, my kid's been comparatively seizure free (knock wood) for going on 6 years now. I think he's had maybe 5 seizures since 08/2004, when for the longest time it was 1 every 3 months. These docs may have degrees out the ears and may have a broader generalized knowledge about neuro stuff than I do, but if they're not going to get with the program, they're not worth my time and money, and most certainly not worth risking my son's well-being and potentially his life. A doctor who doesn't listen to a parent's concerns is just begging to be fired, in my humble opinion. Edited to add: Diazepam is an interesting choice for a first medication. Boo has classic grand mal (tonic clonic) seizures. The first medication was Carbatrol (a form of tegretol). Didn't hold him. We added Topamax which did okay for about a year but then he had the seizure of all seizures, so then they added Keppra. He's on pretty high doses of all 3, but they hold him. We use Diastat (rectal diazepam) when he has a seizure to try and stop it - works on the tonic clonic stuff, but about half the time he then goes into a partial complex seizure (no movements aside from twitching eyes, but not aware or alert). Another thought, since neuro was so kind as to freak your kid out about potential breathing issues - can you get a script for an oxygen tank? We keep one around, just in case. It originally was requested by one of his school nurses who got anxious about breathing during a sz, but there have been a couple of times here at home when I was real glad to have it handy. [/QUOTE]
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Thought I'd vent if anyone cares to read it...
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