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White Knuckling It..
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<blockquote data-quote="slsh" data-source="post: 103144" data-attributes="member: 8"><p>Oh my gosh - I'm so sorry your family is going through this.</p><p></p><p>When my son started having seizures, it took me 3 tries to find a neuro who would aggressively address it. I kid you not, I got virtually the *identical* garbage from the first 2 neuros: "Oh, your son has CP, of course he's going to have seizures, learn to live with it." </p><p></p><p>Uh, no. Absolutely not. It's almost like they think a lesser quality of life is ok because there's some other diagnosis in there (CP for Boo, Autism Spectrum Disorders (ASD) for your kiddo). Where do they get off? And how many seizures a day/week/month would be acceptable for *their* kid, especially when there might possibly be a medication combination that would control them?</p><p></p><p>I would strongly strongly *strongly* recommend that you find another neuro. I know that some seizures are very hard to control, but if I'm reading your son's medications right, he's only on 1 anti-seizure medication. That's just a half-hearted effort in my humble opinion. </p><p></p><p>It took firing 2 neuros, finding our current guy, and a stepwise progression of increasing doses and adding new medications, but Boo's been (knock on wood) seizure free for almost 4 years. He's been on a 3-medication combo for over 5 years. While he wasn't seizing as frequently as your son is, he did have status seizures and we never were able to handle them at home. For a while there, I knew all the local ER docs, village EMTs, and police officers by first name. </p><p></p><p>I really think that if you can find a doctor who is willing to work harder on seizure control, it would loosen up those white knuckles for you. We were blessed that Boo never has had behavior problems, but the seizures alone kept me in a state of terror for probably a solid 4 years. husband really didn't understand because he was *always* at work, though he would come and pick up the other kids while I stayed with- Boo. But I don't think he ever understood the stomach dropping fear... to this day, my stomach still lurches every time Boo's school calls even though he's been stable for so long.</p><p></p><p>Anyway - a gentle hug to you. You are *not* a failure, not by any stretch of the imagination.</p></blockquote><p></p>
[QUOTE="slsh, post: 103144, member: 8"] Oh my gosh - I'm so sorry your family is going through this. When my son started having seizures, it took me 3 tries to find a neuro who would aggressively address it. I kid you not, I got virtually the *identical* garbage from the first 2 neuros: "Oh, your son has CP, of course he's going to have seizures, learn to live with it." Uh, no. Absolutely not. It's almost like they think a lesser quality of life is ok because there's some other diagnosis in there (CP for Boo, Autism Spectrum Disorders (ASD) for your kiddo). Where do they get off? And how many seizures a day/week/month would be acceptable for *their* kid, especially when there might possibly be a medication combination that would control them? I would strongly strongly *strongly* recommend that you find another neuro. I know that some seizures are very hard to control, but if I'm reading your son's medications right, he's only on 1 anti-seizure medication. That's just a half-hearted effort in my humble opinion. It took firing 2 neuros, finding our current guy, and a stepwise progression of increasing doses and adding new medications, but Boo's been (knock on wood) seizure free for almost 4 years. He's been on a 3-medication combo for over 5 years. While he wasn't seizing as frequently as your son is, he did have status seizures and we never were able to handle them at home. For a while there, I knew all the local ER docs, village EMTs, and police officers by first name. I really think that if you can find a doctor who is willing to work harder on seizure control, it would loosen up those white knuckles for you. We were blessed that Boo never has had behavior problems, but the seizures alone kept me in a state of terror for probably a solid 4 years. husband really didn't understand because he was *always* at work, though he would come and pick up the other kids while I stayed with- Boo. But I don't think he ever understood the stomach dropping fear... to this day, my stomach still lurches every time Boo's school calls even though he's been stable for so long. Anyway - a gentle hug to you. You are *not* a failure, not by any stretch of the imagination. [/QUOTE]
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