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Just a little nervous about the study...
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<blockquote data-quote="slsh" data-source="post: 221638" data-attributes="member: 8"><p>klmno - I just went to a parent mtg on Sat for kids who get funding like thank you's. One of the parents did a presentation on a NIMH study her son and family is involved it. Bottom line, in the context of this being a study for childhood onset schizophrenia (COS), she had nothing but favorable things to say about the process *but* she made it very clear that in her opinion if a child is stable or even relatively stable, an extensive study involving medication wash etc would not be the way to go.</p><p> </p><p>Her kiddo is 12, had normal development up until about age 3 or 4 I think, and then started severely regressing. Sounds like a very psychotic kiddo 24/7, regardless of treatment. He's lost not only cognitive ability but also motor skills. Her family had been through the alphabet soup of diagnoses for several years, with a gazillon medications, etc. He ended up in a catatonic state for more than a day at a local hospital and that's when she really started getting assertive in terms of looking for answers.</p><p> </p><p>The study they're in is not only for medications but also looking at the genetics and physiologic (brain structure) changes in COS. The entire family had to go to Baltimore (or was it Bethesda - I don't know, Maryland somewhere, LOL) for genetic screening and psychiatric/cognitive testing. Then the child and mom stayed for a 6-week medication wash (again, this little guy was on a kitchen sink of medications). In their case, there was a very real risk of him ending up in a catatonic state again. It was apparently very rough but he was a champ. Then they started him on a new medication (clo - something, an antipsychotic, name escapes me right now) and they stayed for another 8 weeks for stabilization. She said he has not yet returned to where he was functionally before they went, but they are seeing relatively rapid improvements and she is actually quite hopeful. Interestingly, just from a clinical standpoint, they have already documented that chronic psychosis causes not only gray matter (cognitive) changes but also white matter (motor skills) changes in the brain.</p><p> </p><p>This study is life-long. There was no possibility of a placebo being given, obviously. She had nothing but high praise for staff and feels very fortunate in that she has access now to *the* top researchers and docs for COS. She did say researchers are researchers and they tend to forget they're treating patients not lab rats <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite2" alt=";)" title="Wink ;)" loading="lazy" data-shortname=";)" /> but it did not sound like it was a huge problem, especially since she stayed with him. </p><p> </p><p>She did say in this particular study there were 3 beds for COS and then another 3 beds for BiPolar (BP) kiddos with severe psychosis. Sounds like the screening is pretty extensive so that they're sure they know what patients they're getting.</p><p> </p><p>Again - she really had nothing negative to say about the experience. It's a huge committment but she has a very ill kiddo and wasn't getting a whole lot of consistent information locally.</p></blockquote><p></p>
[QUOTE="slsh, post: 221638, member: 8"] klmno - I just went to a parent mtg on Sat for kids who get funding like thank you's. One of the parents did a presentation on a NIMH study her son and family is involved it. Bottom line, in the context of this being a study for childhood onset schizophrenia (COS), she had nothing but favorable things to say about the process *but* she made it very clear that in her opinion if a child is stable or even relatively stable, an extensive study involving medication wash etc would not be the way to go. Her kiddo is 12, had normal development up until about age 3 or 4 I think, and then started severely regressing. Sounds like a very psychotic kiddo 24/7, regardless of treatment. He's lost not only cognitive ability but also motor skills. Her family had been through the alphabet soup of diagnoses for several years, with a gazillon medications, etc. He ended up in a catatonic state for more than a day at a local hospital and that's when she really started getting assertive in terms of looking for answers. The study they're in is not only for medications but also looking at the genetics and physiologic (brain structure) changes in COS. The entire family had to go to Baltimore (or was it Bethesda - I don't know, Maryland somewhere, LOL) for genetic screening and psychiatric/cognitive testing. Then the child and mom stayed for a 6-week medication wash (again, this little guy was on a kitchen sink of medications). In their case, there was a very real risk of him ending up in a catatonic state again. It was apparently very rough but he was a champ. Then they started him on a new medication (clo - something, an antipsychotic, name escapes me right now) and they stayed for another 8 weeks for stabilization. She said he has not yet returned to where he was functionally before they went, but they are seeing relatively rapid improvements and she is actually quite hopeful. Interestingly, just from a clinical standpoint, they have already documented that chronic psychosis causes not only gray matter (cognitive) changes but also white matter (motor skills) changes in the brain. This study is life-long. There was no possibility of a placebo being given, obviously. She had nothing but high praise for staff and feels very fortunate in that she has access now to *the* top researchers and docs for COS. She did say researchers are researchers and they tend to forget they're treating patients not lab rats ;) but it did not sound like it was a huge problem, especially since she stayed with him. She did say in this particular study there were 3 beds for COS and then another 3 beds for BiPolar (BP) kiddos with severe psychosis. Sounds like the screening is pretty extensive so that they're sure they know what patients they're getting. Again - she really had nothing negative to say about the experience. It's a huge committment but she has a very ill kiddo and wasn't getting a whole lot of consistent information locally. [/QUOTE]
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