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Furious and trying not to cry because i am so da.mn mad
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<blockquote data-quote="susiestar" data-source="post: 391232" data-attributes="member: 1233"><p>I have zero doubts that she will need help repeatedly over her life for the issues with Wiz. My strong doubts in this case are because she had therapy for many years when we discovered it (almost 3) and then again for about 9 mos after the first doctor said this was anxiety and depression. She works well with the therapists and the psychiatrist, always is their "favorite patient" even back when she was screaming and crying over what Wiz did and how we didn't stop it. There has been absolutely NO response of either worsening or easing her symptoms and pain. She has worked HARD because she wants to get better and wants to go back to school, back to doing stuff with her friends, wants her mind to work and wants her body to work properly. She delights in playing soccer, going to school, and doing all the typical things a kid her age does. </p><p> </p><p>I DID feel that the pediatrician who said it was anxiety was off her nut. NOT for saying that THIS issue is anxiety but for saying strep, acne, colds, and the flu were SOLELY caused by anxiety. NOT that anxiety made her more susceptible, which I personally have experienced, but for saying that there was no bacterial/virus/hormonal for the acne/etc... other factor causing it. in my opinion that is absolutely crazy, esp after I spoke with the mom's in Jessie's circle of friends - girls she has known and loved since first grade - and every single one of them has been told the same exact thing at least one time by the same doctor. ALL of them have changed to other doctors because it simply is illogical to think that going to a therapist will cure strep throat, help acne not scar, or help with colds and the flu. This doctor LOVED to go and tell other docs that problems were caused by anxiety - including one girl's cracked wrist from a soccer game fall. </p><p> </p><p>Even KNOWING the pediatrician was off her rocker, we still went to therapy until we were told that there really was no reason for her to be in therapy weekly, much less more often because it was NOT the reason she was shaking. Jess really tried HARD. Spoke about her bro, even about the garbage with MY bro. The issues with him HAVE gotten worse recently and we are already intending to go back to her therapist because it is a fairly small town and I don't want her to have to fight panic and fear if she sees him somewhere. She doesn't have to ever speak to him again, her fear is real, and based on his behavior, but she still needs to feel empowered to handle this. I also want her to work on the increasing frustration and anxiety caused by being sick with no real answers available. </p><p> </p><p>She isn't getting a payoff that she likes from being at home. She is a very social person and HATES not being in school, in soccer, in classess at the art center (all sorts of arts, not just fine arts), and HATES having to fight her body to make it behave. She was, for my family, incredibly wonderfully graceful, talented at every single sport she tried, and LOVED to sing everywhere she went. She has to fight the shaking to speak and to sing, so she sings a lot less because it results in her neck and body spasming very strongly an painfully. If she pushes too much for too long a day or 2 later her muscles will start to turn to rocks at the very slightest touch. It only happens after she has really worn herself out, but even the touch of her clothing, or a whisper light touch of my finger will make a muscle turn to rock. A firmer touch makes her literally scream. It isn't predictable, but the only thing I have linked it to so far is a LOT of activity a day or 2 before - her trying to do activity like a normal person.</p><p> </p><p>From the beginning the anxiety diagnosis didn't "feel" right, but she really gave it a try, really WORKED to get help if that it what it was. I would have thought, and her therapist and psychiatrist would have thought, that her symptoms would have been made worse by it or would have been eased by it, at least a little bit one way or the other depending on what was going on in therapy, but that hasn't happened.</p><p> </p><p>I still think we can train her subconscious to help with a lot of this via biofeedback. At least to make suppressing it less difficult for her, maybe less painful, if nothing else. Overall, it is just heartbreaking. I HATE it!!!</p><p> </p><p>Thanks for all the info - I really DO appreciate it. We are going to do what we can, and maybe if we jump through this therapist/psychiatrist hoop a couple times more we can FINALLY get to a doctor who will help her. </p><p> </p><p>Linda, from what the docs told me, if she doesn't have a seizure in 24 hrs she doesn't have absence epilepsy. Sounded like nonsense at the time, at least to me, but they were firm on it. I was against the 20 minute EEG results because they only lasted 20 mins and didn't seem to be a representative sample of what was going on in her brain, Know what I mean?? Gee, the doctor HATED that I told him that 20 min wasn't a representative sample of what happened in the rest of her day much less her life, esp when the particular 20 min was selected not by random or by times she was most likely to have problems, but rather by when she could be fit into some other people's schedules. lol.</p></blockquote><p></p>
[QUOTE="susiestar, post: 391232, member: 1233"] I have zero doubts that she will need help repeatedly over her life for the issues with Wiz. My strong doubts in this case are because she had therapy for many years when we discovered it (almost 3) and then again for about 9 mos after the first doctor said this was anxiety and depression. She works well with the therapists and the psychiatrist, always is their "favorite patient" even back when she was screaming and crying over what Wiz did and how we didn't stop it. There has been absolutely NO response of either worsening or easing her symptoms and pain. She has worked HARD because she wants to get better and wants to go back to school, back to doing stuff with her friends, wants her mind to work and wants her body to work properly. She delights in playing soccer, going to school, and doing all the typical things a kid her age does. I DID feel that the pediatrician who said it was anxiety was off her nut. NOT for saying that THIS issue is anxiety but for saying strep, acne, colds, and the flu were SOLELY caused by anxiety. NOT that anxiety made her more susceptible, which I personally have experienced, but for saying that there was no bacterial/virus/hormonal for the acne/etc... other factor causing it. in my opinion that is absolutely crazy, esp after I spoke with the mom's in Jessie's circle of friends - girls she has known and loved since first grade - and every single one of them has been told the same exact thing at least one time by the same doctor. ALL of them have changed to other doctors because it simply is illogical to think that going to a therapist will cure strep throat, help acne not scar, or help with colds and the flu. This doctor LOVED to go and tell other docs that problems were caused by anxiety - including one girl's cracked wrist from a soccer game fall. Even KNOWING the pediatrician was off her rocker, we still went to therapy until we were told that there really was no reason for her to be in therapy weekly, much less more often because it was NOT the reason she was shaking. Jess really tried HARD. Spoke about her bro, even about the garbage with MY bro. The issues with him HAVE gotten worse recently and we are already intending to go back to her therapist because it is a fairly small town and I don't want her to have to fight panic and fear if she sees him somewhere. She doesn't have to ever speak to him again, her fear is real, and based on his behavior, but she still needs to feel empowered to handle this. I also want her to work on the increasing frustration and anxiety caused by being sick with no real answers available. She isn't getting a payoff that she likes from being at home. She is a very social person and HATES not being in school, in soccer, in classess at the art center (all sorts of arts, not just fine arts), and HATES having to fight her body to make it behave. She was, for my family, incredibly wonderfully graceful, talented at every single sport she tried, and LOVED to sing everywhere she went. She has to fight the shaking to speak and to sing, so she sings a lot less because it results in her neck and body spasming very strongly an painfully. If she pushes too much for too long a day or 2 later her muscles will start to turn to rocks at the very slightest touch. It only happens after she has really worn herself out, but even the touch of her clothing, or a whisper light touch of my finger will make a muscle turn to rock. A firmer touch makes her literally scream. It isn't predictable, but the only thing I have linked it to so far is a LOT of activity a day or 2 before - her trying to do activity like a normal person. From the beginning the anxiety diagnosis didn't "feel" right, but she really gave it a try, really WORKED to get help if that it what it was. I would have thought, and her therapist and psychiatrist would have thought, that her symptoms would have been made worse by it or would have been eased by it, at least a little bit one way or the other depending on what was going on in therapy, but that hasn't happened. I still think we can train her subconscious to help with a lot of this via biofeedback. At least to make suppressing it less difficult for her, maybe less painful, if nothing else. Overall, it is just heartbreaking. I HATE it!!! Thanks for all the info - I really DO appreciate it. We are going to do what we can, and maybe if we jump through this therapist/psychiatrist hoop a couple times more we can FINALLY get to a doctor who will help her. Linda, from what the docs told me, if she doesn't have a seizure in 24 hrs she doesn't have absence epilepsy. Sounded like nonsense at the time, at least to me, but they were firm on it. I was against the 20 minute EEG results because they only lasted 20 mins and didn't seem to be a representative sample of what was going on in her brain, Know what I mean?? Gee, the doctor HATED that I told him that 20 min wasn't a representative sample of what happened in the rest of her day much less her life, esp when the particular 20 min was selected not by random or by times she was most likely to have problems, but rather by when she could be fit into some other people's schedules. lol. [/QUOTE]
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