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B’s obsession
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<blockquote data-quote="B’smom" data-source="post: 740322" data-attributes="member: 23359"><p>Hi everyone,</p><p>I’m sorry for being MIA. I’ve been slowly trying to read and I guess “accept” and grieve these new diagnoses. Cause that’s what it feels like every time we get a new diagnosis. I feel absolutely heartbroken despite knowing something definitely isn’t right. The official diagnoses that were given were</p><p></p><p>Borderline Intellectual Functioning (BIF)- borderline intellectual range functioning </p><p>DMDD- disruptive mood dysregulation disorder</p><p>Developmental Coordination Disorder (DCD)- developmental coordination disorder (motor coordination issues) it’s also known as dysapraxia in some countries) </p><p>Speech sound disorder (apraxia) </p><p>And ADHD </p><p></p><p>They say he doesn’t have Obsessive Compulsive Disorder (OCD), despite his need to hoard, count and organize things consistently. They also say he doesn’t have anxiety. This confuses me because they tell me he won’t leave the unit without all of his stuff and if something is lost- he freaks out. I’m not really sure what to make of that </p><p></p><p>He has enough neurodevelopmental diagnoses that I think I can convince my GP to send us to a neurologist. I also spoke with a family in our area that a note from the neurologist was enough to convince the government to pay out of country genetic testing when a geneticist wasn’t able too (makes no sense in my opinion) but that’s our government. I’m calling on Monday to make an appointment for B to see about a referral. </p><p></p><p>aRoomwithaview- you are one very strong mom. I cannot imagine everything you have gone/going through. I hope they find answers for you and your son. </p><p></p><p>As far as PANDAS/PANS goes, I have inquired about that with the doctors he works with. Half tell me it’s a controversial diagnosis (funny again because so is DMDD- been reading a lot of medical articles lately- thanks Copa). </p><p>We do have a specialist in the nearby area but she’s closed off the wait list because it’s so long. In order to even get on her list, you have to have a diagnosis already- which is extremely frustrating because half of the community doesn’t believe it’s exists. He does have a history of strep throat, we also have emails talking about how his behaviour increases even when someone in the family has it (when LO had strep, B’s behaviours were out of control) but it could also just be coincidence. </p><p>His original psychiatrist has agreed to put in a referral to a developmental paediatrician because I refuse to give up. He reminded me that we may never know why he regressed. I know this is true, but I won’t give up until I try all alternatives that I can. </p><p></p><p>The new medication they put him on (Vyvance 50mg) is definitely making him more focused. Almost a little too much in my opinion. All day yesterday, he drew Pokémon on small pieces of paper. Not once asking for electronics (normally he’s asking every 30mins to play). It was odd but we had little behaviour. Mostly because I just let him do it and placed no demands. J is working this weekend so I’m taking things easy. B cake grocery shopping yesterday, transition to the car was rough but the actual trip was great. </p><p></p><p></p><p></p><p>The meeting was rough, our agency (kind of like a liaison) asked if the residential centre could keep B a bit longer until he gets into the longer term one- so we can avoid multiple transitions on B (facility-home then new facility) He can stay up to one year at the one we’re looking at but intake can take some time as we have to travel over an hour to get there to do intake. The psychologists reply was “it’s not all about B, we have other kids that need help too”. The professional in me was both appalled by her response and understood: It’s not all about B BUT that meeting was all about B. Everyone attended this meeting- the school and some neighbouring agencies, you could tell how shocked they were by her response. </p><p></p><p>We have 5 business days before B comes home. If we can’t get him in the treatment facility and the unit won’t keep him- they’re committed to having someone come in and help us with B to ensure someone is safe. I guess that’s something but my anxiety is in overdrive because of it. I need planned and organized and this isn’t. All I can do is continue to push and make calls.</p></blockquote><p></p>
[QUOTE="B’smom, post: 740322, member: 23359"] Hi everyone, I’m sorry for being MIA. I’ve been slowly trying to read and I guess “accept” and grieve these new diagnoses. Cause that’s what it feels like every time we get a new diagnosis. I feel absolutely heartbroken despite knowing something definitely isn’t right. The official diagnoses that were given were Borderline Intellectual Functioning (BIF)- borderline intellectual range functioning DMDD- disruptive mood dysregulation disorder Developmental Coordination Disorder (DCD)- developmental coordination disorder (motor coordination issues) it’s also known as dysapraxia in some countries) Speech sound disorder (apraxia) And ADHD They say he doesn’t have Obsessive Compulsive Disorder (OCD), despite his need to hoard, count and organize things consistently. They also say he doesn’t have anxiety. This confuses me because they tell me he won’t leave the unit without all of his stuff and if something is lost- he freaks out. I’m not really sure what to make of that He has enough neurodevelopmental diagnoses that I think I can convince my GP to send us to a neurologist. I also spoke with a family in our area that a note from the neurologist was enough to convince the government to pay out of country genetic testing when a geneticist wasn’t able too (makes no sense in my opinion) but that’s our government. I’m calling on Monday to make an appointment for B to see about a referral. aRoomwithaview- you are one very strong mom. I cannot imagine everything you have gone/going through. I hope they find answers for you and your son. As far as PANDAS/PANS goes, I have inquired about that with the doctors he works with. Half tell me it’s a controversial diagnosis (funny again because so is DMDD- been reading a lot of medical articles lately- thanks Copa). We do have a specialist in the nearby area but she’s closed off the wait list because it’s so long. In order to even get on her list, you have to have a diagnosis already- which is extremely frustrating because half of the community doesn’t believe it’s exists. He does have a history of strep throat, we also have emails talking about how his behaviour increases even when someone in the family has it (when LO had strep, B’s behaviours were out of control) but it could also just be coincidence. His original psychiatrist has agreed to put in a referral to a developmental paediatrician because I refuse to give up. He reminded me that we may never know why he regressed. I know this is true, but I won’t give up until I try all alternatives that I can. The new medication they put him on (Vyvance 50mg) is definitely making him more focused. Almost a little too much in my opinion. All day yesterday, he drew Pokémon on small pieces of paper. Not once asking for electronics (normally he’s asking every 30mins to play). It was odd but we had little behaviour. Mostly because I just let him do it and placed no demands. J is working this weekend so I’m taking things easy. B cake grocery shopping yesterday, transition to the car was rough but the actual trip was great. The meeting was rough, our agency (kind of like a liaison) asked if the residential centre could keep B a bit longer until he gets into the longer term one- so we can avoid multiple transitions on B (facility-home then new facility) He can stay up to one year at the one we’re looking at but intake can take some time as we have to travel over an hour to get there to do intake. The psychologists reply was “it’s not all about B, we have other kids that need help too”. The professional in me was both appalled by her response and understood: It’s not all about B BUT that meeting was all about B. Everyone attended this meeting- the school and some neighbouring agencies, you could tell how shocked they were by her response. We have 5 business days before B comes home. If we can’t get him in the treatment facility and the unit won’t keep him- they’re committed to having someone come in and help us with B to ensure someone is safe. I guess that’s something but my anxiety is in overdrive because of it. I need planned and organized and this isn’t. All I can do is continue to push and make calls. [/QUOTE]
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