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Lips Turn Blue Laying Down
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<blockquote data-quote="susiestar" data-source="post: 506487" data-attributes="member: 1233"><p>Janet, I am sorry. I meant to respond to your pm and got sidetracked. We have had the conversion diagnosis but here it does NOT mean the type of treatment dr. drew meant. Here it means "it is all in your head and you are crazy. Bye." LITERALLY. We have had the pediatrician say conversion, one neuro did, the neuropsychologist did BUT he refused to do ANY testing, clearly had NOT read ANYTHING in her file and gave this diagnosis after spending 20 min talking to me and saying that actually Jess had NO medical problems and the problems were that I have conversion and am causing her to think she has health problems. I am "talking her into them". I didn't post about this because it was just too much to handle and was the 3rd or 4th appointment in a day of disastrous ones. Conversion in Dr. Drew's world is NOT what it is here in OK, at least not in the children's hospital that we were seeing dr's at. </p><p></p><p>We are doing what we can, I have a pulse oximeter coming (amazon, the doctor wouldn't order one or oxygen because he had her lay down for ten seconds in his office and she was fine). </p><p></p><p>I have come to the conclusion that we have to work through what we can until she is 18 and then we will be able to see adult dr's (as we can afford them) and then maybe someone will take this all seriously.</p><p></p><p>I do see a lot of dystonia in her, but since the eeg showed "nothing", well, it jsut can't be that. Of course they didn't let her DO anything but sit there and it is when she is exhausted and has been moving around and doing things that she has more of the problems. Plus over 30 hours of the test was useless because the leads were loose and no one woudl come to fix them. The monitor looked like something Wiz drew when he was little and furious - all black scribbles - which they said was "muscle artifact" and meant that they were not getting any readings. </p><p></p><p>I read the epilepsy/movement disorder forums and hear all about how so many people had LOTS of eegs that showed no problems even when the person was having symptoms at that moment, and how their doctors said that sometimes they just can't measure the part of the brain having the problem and how medications are given even with-o the eeg showing things. But our docs have all sworn that there is NO WAY that the brain can have a seizure that the eeg cannot measure. even the movement disorder guy in Dallas told me that. </p><p></p><p>Plus she has been on anti seizure medications for EVERY eeg since the one seh had in 4th grade. Even this last one she was at 300 mgs of neurontin 3x per day but they SWORE that they would still see seizures even though the medications had stopped the absence seizures. I know it stopped them because she wasn't having "short days" (her term for days when she is doing soemthing and then suddenly it is ten min or three hours later). But the doctor said that wasn't possible (why? he wouldn't say) and he refused to take her off the medication. </p><p></p><p>The docs and techs all seem to believe that seizures will still show up in the brain and the medications just stop the seizure behavior so that it isn't a problem for the patient. </p><p></p><p>I <strong>KNOW</strong> that this makes no sense and is NOT what the medications do. I just cannot get any logic or common sense across to these people. The neuro even told us that as long as her lips "pink up" when we wake her up - and she does wake up - then the blue lips thing isn't a big deal. At one point he tried to say we should have her take her makeup off before she goes to sleep. I guess ALL teen girls wear blue lipstick all the time. How silly of me to not know that.</p><p></p><p>I am so tired and so scared and so angry and so sick of/from/with all of this. No one seems to listen to us, and they refuse to read the Parent Report, and I have done everything I can to try to help her. I feel like a total failure because my baby is in constant pain, has all these strange and scary things going on, and all the docs seem to think that it is for attention.</p><p></p><p>Well, except for the psychiatrists and tdocs. The psychiatrists think it is clearly a neuro problem and related to seizures or a movement disorder. The tdocs think she is handling things in a very healthy way (mad as hell, still fighting to do what she can even when it hurts like crazy and she knows she will end up in worse pain all night adn the next day) and is NOT showing signs of conversion or other therapist type problems except extreme frustration because no one will listen and do something. We have 2 different psychiatrist evaluations that say that this is NOT what the neuro said it was (neuro and family doctor sent letters, charts, notes before we saw the psychiatrists) and they see clear signs of seizures/movement disorders and she should be treated with medications for that even if the eegs show no problems - one letter even says that it is entirely possible for the seizure activity to be in a part of the brain that the eeg is unable to record. </p><p></p><p>So that is where we are now. still waiting for the doctor to call. Frustrated as all get out. And scared.</p><p></p><p>husband and I are the only ones who seem to give a hoot about her medical problems, at least other than y'all and my parents who don't know even 1/10th of them. mostly because I don't have a wonderful relationship with my mom and after she used a lot of the stuff with Wiz against me, well, fool me 2x shame on me. (Mom and I are trying, but I have put up a lot of walls for a reason.)</p></blockquote><p></p>
[QUOTE="susiestar, post: 506487, member: 1233"] Janet, I am sorry. I meant to respond to your pm and got sidetracked. We have had the conversion diagnosis but here it does NOT mean the type of treatment dr. drew meant. Here it means "it is all in your head and you are crazy. Bye." LITERALLY. We have had the pediatrician say conversion, one neuro did, the neuropsychologist did BUT he refused to do ANY testing, clearly had NOT read ANYTHING in her file and gave this diagnosis after spending 20 min talking to me and saying that actually Jess had NO medical problems and the problems were that I have conversion and am causing her to think she has health problems. I am "talking her into them". I didn't post about this because it was just too much to handle and was the 3rd or 4th appointment in a day of disastrous ones. Conversion in Dr. Drew's world is NOT what it is here in OK, at least not in the children's hospital that we were seeing dr's at. We are doing what we can, I have a pulse oximeter coming (amazon, the doctor wouldn't order one or oxygen because he had her lay down for ten seconds in his office and she was fine). I have come to the conclusion that we have to work through what we can until she is 18 and then we will be able to see adult dr's (as we can afford them) and then maybe someone will take this all seriously. I do see a lot of dystonia in her, but since the eeg showed "nothing", well, it jsut can't be that. Of course they didn't let her DO anything but sit there and it is when she is exhausted and has been moving around and doing things that she has more of the problems. Plus over 30 hours of the test was useless because the leads were loose and no one woudl come to fix them. The monitor looked like something Wiz drew when he was little and furious - all black scribbles - which they said was "muscle artifact" and meant that they were not getting any readings. I read the epilepsy/movement disorder forums and hear all about how so many people had LOTS of eegs that showed no problems even when the person was having symptoms at that moment, and how their doctors said that sometimes they just can't measure the part of the brain having the problem and how medications are given even with-o the eeg showing things. But our docs have all sworn that there is NO WAY that the brain can have a seizure that the eeg cannot measure. even the movement disorder guy in Dallas told me that. Plus she has been on anti seizure medications for EVERY eeg since the one seh had in 4th grade. Even this last one she was at 300 mgs of neurontin 3x per day but they SWORE that they would still see seizures even though the medications had stopped the absence seizures. I know it stopped them because she wasn't having "short days" (her term for days when she is doing soemthing and then suddenly it is ten min or three hours later). But the doctor said that wasn't possible (why? he wouldn't say) and he refused to take her off the medication. The docs and techs all seem to believe that seizures will still show up in the brain and the medications just stop the seizure behavior so that it isn't a problem for the patient. I [B]KNOW[/B] that this makes no sense and is NOT what the medications do. I just cannot get any logic or common sense across to these people. The neuro even told us that as long as her lips "pink up" when we wake her up - and she does wake up - then the blue lips thing isn't a big deal. At one point he tried to say we should have her take her makeup off before she goes to sleep. I guess ALL teen girls wear blue lipstick all the time. How silly of me to not know that. I am so tired and so scared and so angry and so sick of/from/with all of this. No one seems to listen to us, and they refuse to read the Parent Report, and I have done everything I can to try to help her. I feel like a total failure because my baby is in constant pain, has all these strange and scary things going on, and all the docs seem to think that it is for attention. Well, except for the psychiatrists and tdocs. The psychiatrists think it is clearly a neuro problem and related to seizures or a movement disorder. The tdocs think she is handling things in a very healthy way (mad as hell, still fighting to do what she can even when it hurts like crazy and she knows she will end up in worse pain all night adn the next day) and is NOT showing signs of conversion or other therapist type problems except extreme frustration because no one will listen and do something. We have 2 different psychiatrist evaluations that say that this is NOT what the neuro said it was (neuro and family doctor sent letters, charts, notes before we saw the psychiatrists) and they see clear signs of seizures/movement disorders and she should be treated with medications for that even if the eegs show no problems - one letter even says that it is entirely possible for the seizure activity to be in a part of the brain that the eeg is unable to record. So that is where we are now. still waiting for the doctor to call. Frustrated as all get out. And scared. husband and I are the only ones who seem to give a hoot about her medical problems, at least other than y'all and my parents who don't know even 1/10th of them. mostly because I don't have a wonderful relationship with my mom and after she used a lot of the stuff with Wiz against me, well, fool me 2x shame on me. (Mom and I are trying, but I have put up a lot of walls for a reason.) [/QUOTE]
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