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A few questions re: changing a Pervasive Developmental Disorder (PDD) diagnosis
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<blockquote data-quote="hexemaus2" data-source="post: 193982" data-attributes="member: 4560"><p>Thanks so much guys. You guys have help to strengthen my resolve. I didn't think changing a Pervasive Developmental Disorder (PDD) diagnosis was "normal."</p><p> </p><p>This is the #1 reason why we're going back to difficult child 2's previous psychiatrist. We moved from her practice (on her advice) to our Community Mental Health folks because they have a division that is supposed to offer support/services for Autism Spectrum Disorders (ASD) kids - supposedly more services than she could get for difficult child in the private sector. Well, those services never materialized. The "professionals" - his cognitive therapist, the folks handling our IFI services, etc. all have said they don't "see" enough Pervasive Developmental Disorder (PDD) behaviors to warrant that diagnosis. But when I asked them what they were looking for - they said things like making eye contact (specifically the lack of it) and other symptoms that in my opinion, are very typical of younger kids on the spectrum who haven't had any interventions. I don't think they know what to look for in an older child who has started to learn how to adapt. </p><p> </p><p>So, we're going back to his previous psychiatrist. Personally? I think it would be better to have less services so long as the services he gets are what he needs. Having alot of services doesn't matter if they aren't what he needs. And to be honest? I don't think his cognitive therapist was anything more than a "regular" therapist who has been assigned to work with kids needing help with cognitive functions. I don't think he had any specialized training or experience. Even difficult child 2 has asked more than once what was supposed to be so different about this therapist - he was just doing the same ol' same ol' that other "talk" therapists have done in the past.</p><p> </p><p>At least our old psychiatrist and I were on the same page. She's not a really friendly kind of person, but her focus is definitely more on getting difficult child 2 what he needs. We both agree that a good 80% of difficult child 2's outbursts are stemming from frustrations with his own language issues and the understandable anxiety of not understanding the world around him. We can use medications to help make those symptoms manageable, but until we address the root causes, he's going to keep having issues with outbursts - no matter what medications we use. </p><p> </p><p>Something interesting the psychiatrist at court brought up was Intermittent Explosive Disorder - which is a diagnosis difficult child has had before. He explained that one of the hallmarks of Intermittent Explosive Disorder (IED) is the inability to remember what happened during a rage. He explained that it's actually caused by electrically-based seizures in the frontal lobe & that an EEG would help to determine if that's what's going on. He said that it's not uncommon in high functioning kids to also have issues with Intermittent Explosive Disorder (IED) to varying degrees. He seemed rather shocked that no one had done an EEG on difficult child 2 in all these years, with all of these hospitalizations. I felt MUCH more confident in his knowledge of what he was talking about and I only talked to this man for 30 minutes!!! He explained some of the more technical aspects of Autism Spectrum Disorders (ASD) & how the brain works and why he felt...just from talking to difficult child for a few minutes and reading some of his past medical summaries...that we should really pursue having an EEG done. We might be able to find the missing piece of the puzzle with difficult child & his rages. (Even difficult child 2's old psychiatrist knows there's more going on with difficult child than just Pervasive Developmental Disorder (PDD) - it's just a matter of what that actually is.)</p><p> </p><p>I truly think difficult child 2 doesn't need LESS in terms of treatment for his Pervasive Developmental Disorder (PDD). I think we need to move the focus off mental health and focus MORE on his Pervasive Developmental Disorder (PDD). It's the only area/avenues of treatment that have really had any kind of lasting effect or made a difference for him. That alone should speak to the validity of his Pervasive Developmental Disorder (PDD) diagnosis. </p><p> </p><p>My biggest concern is that when we go for this court-ordered psychiatric evaluation, we'll wind up with someone in the "let's go with mental health diagnosis instead of Pervasive Developmental Disorder (PDD)" camp. Then we're going to have to fight an uphill battle even more because there will be "documentation" that disputes that diagnosis. We have to fight for services as it is, I sure don't want some piece of paper that adds to that struggle. Given how many tdocs this boy has had in the last year that have voiced what they "don't" see...I'm really concerned about this evaluation. </p><p> </p><p>I'm seriously considering calling the judge's office on Monday and asking for a neuropsychologist to be used for the evaluation - someone who knows about/has experience with Autism Spectrum Disorders (ASD). If there is a legit reason to take Pervasive Developmental Disorder (PDD) off the table, then fine. But I want to hear that from someone who knows what the heck they're talking about. Not just some run-of-the-mill therapist who's only real experience is with MH dxes. </p><p> </p><p>Thanks again guys, for helping me to straighten out my own focus and resolve. It's good to know that what my gut's telling me is once again on the right track. Like I said, I didn't think changing an Autism Spectrum Disorders (ASD) diagnosis was "normal." That helps me figure out where I need to push and where I don't.</p></blockquote><p></p>
[QUOTE="hexemaus2, post: 193982, member: 4560"] Thanks so much guys. You guys have help to strengthen my resolve. I didn't think changing a Pervasive Developmental Disorder (PDD) diagnosis was "normal." This is the #1 reason why we're going back to difficult child 2's previous psychiatrist. We moved from her practice (on her advice) to our Community Mental Health folks because they have a division that is supposed to offer support/services for Autism Spectrum Disorders (ASD) kids - supposedly more services than she could get for difficult child in the private sector. Well, those services never materialized. The "professionals" - his cognitive therapist, the folks handling our IFI services, etc. all have said they don't "see" enough Pervasive Developmental Disorder (PDD) behaviors to warrant that diagnosis. But when I asked them what they were looking for - they said things like making eye contact (specifically the lack of it) and other symptoms that in my opinion, are very typical of younger kids on the spectrum who haven't had any interventions. I don't think they know what to look for in an older child who has started to learn how to adapt. So, we're going back to his previous psychiatrist. Personally? I think it would be better to have less services so long as the services he gets are what he needs. Having alot of services doesn't matter if they aren't what he needs. And to be honest? I don't think his cognitive therapist was anything more than a "regular" therapist who has been assigned to work with kids needing help with cognitive functions. I don't think he had any specialized training or experience. Even difficult child 2 has asked more than once what was supposed to be so different about this therapist - he was just doing the same ol' same ol' that other "talk" therapists have done in the past. At least our old psychiatrist and I were on the same page. She's not a really friendly kind of person, but her focus is definitely more on getting difficult child 2 what he needs. We both agree that a good 80% of difficult child 2's outbursts are stemming from frustrations with his own language issues and the understandable anxiety of not understanding the world around him. We can use medications to help make those symptoms manageable, but until we address the root causes, he's going to keep having issues with outbursts - no matter what medications we use. Something interesting the psychiatrist at court brought up was Intermittent Explosive Disorder - which is a diagnosis difficult child has had before. He explained that one of the hallmarks of Intermittent Explosive Disorder (IED) is the inability to remember what happened during a rage. He explained that it's actually caused by electrically-based seizures in the frontal lobe & that an EEG would help to determine if that's what's going on. He said that it's not uncommon in high functioning kids to also have issues with Intermittent Explosive Disorder (IED) to varying degrees. He seemed rather shocked that no one had done an EEG on difficult child 2 in all these years, with all of these hospitalizations. I felt MUCH more confident in his knowledge of what he was talking about and I only talked to this man for 30 minutes!!! He explained some of the more technical aspects of Autism Spectrum Disorders (ASD) & how the brain works and why he felt...just from talking to difficult child for a few minutes and reading some of his past medical summaries...that we should really pursue having an EEG done. We might be able to find the missing piece of the puzzle with difficult child & his rages. (Even difficult child 2's old psychiatrist knows there's more going on with difficult child than just Pervasive Developmental Disorder (PDD) - it's just a matter of what that actually is.) I truly think difficult child 2 doesn't need LESS in terms of treatment for his Pervasive Developmental Disorder (PDD). I think we need to move the focus off mental health and focus MORE on his Pervasive Developmental Disorder (PDD). It's the only area/avenues of treatment that have really had any kind of lasting effect or made a difference for him. That alone should speak to the validity of his Pervasive Developmental Disorder (PDD) diagnosis. My biggest concern is that when we go for this court-ordered psychiatric evaluation, we'll wind up with someone in the "let's go with mental health diagnosis instead of Pervasive Developmental Disorder (PDD)" camp. Then we're going to have to fight an uphill battle even more because there will be "documentation" that disputes that diagnosis. We have to fight for services as it is, I sure don't want some piece of paper that adds to that struggle. Given how many tdocs this boy has had in the last year that have voiced what they "don't" see...I'm really concerned about this evaluation. I'm seriously considering calling the judge's office on Monday and asking for a neuropsychologist to be used for the evaluation - someone who knows about/has experience with Autism Spectrum Disorders (ASD). If there is a legit reason to take Pervasive Developmental Disorder (PDD) off the table, then fine. But I want to hear that from someone who knows what the heck they're talking about. Not just some run-of-the-mill therapist who's only real experience is with MH dxes. Thanks again guys, for helping me to straighten out my own focus and resolve. It's good to know that what my gut's telling me is once again on the right track. Like I said, I didn't think changing an Autism Spectrum Disorders (ASD) diagnosis was "normal." That helps me figure out where I need to push and where I don't. [/QUOTE]
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