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  1. #31
    JTsMom is offline Diamond level (5000+ posts)
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    Quote Originally Posted by Gena View Post
    Hugs.

    I don't have any advice about meds, but I completely understand your struggles with anger, meltdowns, and aggression. We have those difficulties with DS too.

    Have you seen this book:

    Asperger Syndrome And Difficult Moments: Practical Solutions For Tantrums, Rage And Meltdown by Brenda Smith Miles

    It explains the "rage cycle" that kids with ASD experience. I've found it helpful, not only to avoid DS's triggers, but in helping me understand at what parts of the rage cycle I can try to intervene and what parts we need to just keep him safe and "ride it out". It helped me see how trying to intervene at the wrong point of the cycle just escalates his difficult behavior, which makes me feel more frustrated and helpless.

    There's a short summary of the rage cycle here: http://www.isec2005.org.uk/isec/abst.../myles_b.shtml

    It's something we continue to work on.

    Thanks Gena. I'm adding it to my reading list.

    Quote Originally Posted by Pepper View Post
    Ugh. I feel for you...at our last visit, I asked DS1's psych why melatonin had worked so well (and so dramatically!) for him, whereas everything else has been ok for a hill and then meh or worse. Her answer was that melatonin is a natural substance, not a med...I guess there's nothing that's really as good as a brain that's wired the way it's *supposed* to be.

    DS is into Strattera for about 2 months now. The psych told us that it takes a month to take effect. When we first started him on it, I thought holy cow there's no way this stuff is working, then he settled down a bit right after CHristmas. We increased him to the full dose and it's bee just month. He's still pretty impulsive, but I think the hyperactivity is better, unless something gets him going and then it's hard to calm him down. He's definately been ultra-mouthy but I think part of that is the age as well.

    Our DS didn't have the anger with Intuniv so BTDT advice for you (though he tends to be angry a lot anyway, as part of his baseline as you say). I do remember the psych saying that Intuniv was originally developed as a high-blood-pressure drug, and patients reported feeling more mellow while they were on it (lol) and that's how it came to be developed as an ADHD drug. So maybe that's why his anxiety has improved? I dunno. DS1 had terrible nightmares for YEARS and they literally evaporated when he went on melatonin, havne't come back even though he's been off it for months. It's so hard to tease out what the effects of meds are with the usual developmental/maturity/biological changes.

    (Sorry for all the typos, I'm too tired to proofread tonight!)

    Don't you wish this all worked as easily as they make it seem it will?

    Quote Originally Posted by mjs64 View Post
    That sounds so so hard. ITA with investigating the possibility of bipolar. What you describe does sound a little like mania, and often times people who suffer from mood disorders (there's a big big spectrum--one could have classic symptoms as in bipolar I or milder ones as in bpII) are misdiagnosed with ADD and anxiety. Maybe a mood stabilizer (lamictal, lithium, there are many others) could help. Officially, the DSMV states that bipolar has an onset of 18, but new studies are investigating the possibility of earlier onset. Perhaps worth bringing up to the psych.

    Ill be thinking of you and your family.

    ETA: antidepressants have been shown to exacerbate symptoms of mania.

    You're more than welcome to PM me for more info. Hugs hugs hugs.
    Thank you so much. I'll be emailing the psychiatrist today, and possibly the others as well.
    Lori
    Mom to Jason 05/05
    and Zachary 05/10

  2. #32
    JTsMom is offline Diamond level (5000+ posts)
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    Just emailed the psych and he said to taper him off the Intuniv, and he's not sure what our next step should be.
    Lori
    Mom to Jason 05/05
    and Zachary 05/10

  3. #33
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    egoldber is offline Black Diamond level (25,000+ posts)
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    Does this psych have experience with kids with his heart issues? It might almost be worth finding someone who does, even if you have to travel. Can the neuropsych who works with cardiac kids give you a recommendation?
    Beth, mom to older DD (8/01) and younger DD (10/06) and always missing Leah (4/22 - 5/1/05)

  4. #34
    JTsMom is offline Diamond level (5000+ posts)
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    This was her rec, but he's not someone she's worked with personally. I think she said someone in her department suggested him. He's an hour away. The city would actually be a shorter drive, so I'm wide open there.

    I'm thinking about getting back in touch with the therapist you and I talked about several months back. She had mentioned that our area had some less than stellar psychiatrists, and that she'd like me to run names by her so she could weigh in. I never asked about this guy, because he's not local.
    Lori
    Mom to Jason 05/05
    and Zachary 05/10

  5. #35
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    egoldber is offline Black Diamond level (25,000+ posts)
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    Yeah, you definitely need a rec for someone else I think. And preferably someone who gets his complex medical issues.
    Beth, mom to older DD (8/01) and younger DD (10/06) and always missing Leah (4/22 - 5/1/05)

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