Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 ok friends, Tim's teachers etc have told me that the attention is getting worse. it's never been good, but seem he just can't control himslef sometimes. when I brought up talking to the ped. about this with pat he absolutely does not want him on meds!!!!!!!!! any ideas? I am going to bring it up--I trust the dr. completely--he's not one to just put kids on meds, but wondered what your experiences were? thanks! maria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2007 Report Share Posted July 9, 2007 Marilyn, You have written to me before but I have to say how similar sounds to . For us, I can now really see how key meds are to . We have had the same " behavior plans " in place but when he is a good place chemically, it makes everything better. I feel it really unlocks 's language which help him communicate expressively which reduces frustrations. is on abilify...tiny doses to address OCD...yes he has attention issues but the attention is merely a symptom, not the problem. The problem is being internally stuck in obsessions...The other HUGE difference for us is the flexibility of those around him. has now completed 2 full weeks of camp and has had no aggressive issues...not even when being private tutored by his previous teacher at home. I think the more rigid people are around him in an effort to " control " him, the worse it gets...its a vicious cycle. The amazing people at Perkins told me to have faith and believe that he is not a " behavior problem " ...that is clear. I do think visual issues play a role and we need further assessment. Aside from a regular acuity test, we have had no intervention. I too can see how fatigue kicks in and wonder about the role of vision. Barbara (mom to ) > > > > > > > > > > > > > > : > > > > We have gone this route with over the last 2 years. It has not been > > good. They were having problems with negative/aggressive behaviors, as well > > as attention issues. We had consented for her to have Risperdal (.25mg > > twice > > daily) during school. We do not use it at home, grandparents, church, or > > any time other than school. And we feel the benefits have been limited at > > school, too: We still had to pick her up for out-of-school suspensions, > > even after they used a quiet room or in-school-suspension. We feel it is > > definitely related to issues the school is not handling - even as written > > in > > her IEP - and the frustrations experiences must be beyond belief. > > Much is related to her vision and fatigue that the school just doesn't get. > > If she can't read the materials because the copy is too small, how is she > > to > > pay attention and ultimately learn anything? Have you ever tried to read > > small print that makes you tired/frustrated, and thus your attention > > drifts? > > Imagine that in everything: from the print, to placement in the classroom, > > to signing. > > > > has been out of school for Summer vacation since May 24. We have > > not given her any meds for attention or behaviors and she has been just > > fine. We have made changes in regards to things around the house that have > > printed labels on them: They are much larger. (I did this long ago to > > facilitate reading/identification of items around the house: Desk, chair, > > table, computer, keyboard, etc.) My parents had her for a week and they > > even made paper with wide lines for her to keep score with during card > > games. is her usual forceful self; but she is not belligerent, > > overly aggressive, or inattentive. (She is, however, in that previously > > mentioned " impatient " category! HA!) > > > > Are the teachers taking ALL of Tim into account, and what difficulties he > > might be having that lead to the attention issues? I'd take a strong look > > at EVERYTHING!!!! > > > > And never assume something that was " OK " before is still OK. We made that > > mistake with 's vision and are now in a huge struggle with the > > school > > about this aspect. She has adapted amazingly well over the years for what > > we have recently discovered in visual areas. (Actually, her adaptation > > skills in this area are what kept us from addressing it for so long.) Her > > acuity is 20/20, 20/40 with corrective lenses. This does not take into > > account the processing problems, lack of binocularity/convergence, eye > > fatigue, and lower left field impairment. We can't get the school to > > understand that acuity is not the total picture for visual impairment. She > > is legally deafblind, or dual sensory impaired. Add overall fatigue (both > > from CHARGE and JRA) and pain (JRA), and all the " other stuff " of CHARGE > > and > > is it any wonder she doesn't always pay attention or eventually explodes? > > > > I would check with both the school and your ped. There may be a need for > > meds. But there may also be other factors that can (and should) be looked > > at and accommodated. And with specific accommodations, the meds first > > thought to be needed may indeed be of a different type. For example: Does > > Tim need an attention med; or is it really serving his needs better to use > > an anxiety med? We have to believe has a huge amount of anxiety at > > school, just because they aren't doing the needed accommodations. Anxiety > > riddled thoughts have been: " Will I be able to see the signed/fingerspelled > > instructions? " ; " Will I be able to read the test? " ; " Is there a change of > > staff or a substitute teacher, and do they know I need large print? " ; " Will > > the teacher use a color on the whiteboard I can't see clearly? " (The IEP > > states that whiteboards are to be absolutely clean - no prior ghosting of > > print - before beginning to use them with . And they are to use dark > > blue, black, red, and orange. Markers are also to be kept in new condition > > - meaning they can't be nearly dried out and have faded printing result.) I > > have forgotten what visual component Tim has from CHARGE. Do you have a > > good handle on that aspect? > > > > Everything, everything, EVERYTHING plays a role in how our kids behave and > > attend in school! I wish you luck in this. I look forward to what you have > > to report later. > > > > Friends in CHARGE, > > > > Marilyn Ogan > > > > Mom of (14, CHARGE+, JRA) > > > > Mom of Ken (17, Asperger's) > > > > Wife of Rick > > > > oganm@... > > > > _____ > > > > From: CHARGE [mailto:CHARGE ] On Behalf Of > > PATRICK HALLORAN > > Sent: Monday, June 11, 2007 12:02 PM > > To: CHARGE > > Subject: meds > > > > > > ok friends, Tim's teachers etc have told me that the attention is getting > > worse. it's never been good, but seem he just can't control himslef > > sometimes. when I brought up talking to the ped. about this with pat he > > absolutely does not want him on meds!!!!!!!!! > > > > any ideas? I am going to bring it up--I trust the dr. completely--he's not > > one to just put kids on meds, but wondered what your experiences were? > > thanks! > > > > maria > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Every child is so different when it comes to meds and how it is handled. Originally our pediatric psychilatrist wanted to start with a tiny dose of riperidol. We went more conservatively with our neurologist and tried Prozac. I am really not sure that did anything. Then in an effort to " save " his placement and lower his energy/anxiety, we tried a low dose of Abilify and it was really fast...within a few days was just calm..more language, more problem solving , more visible self-control...really happy. For us, it has worked and I will continue to love it until he grows or something and it stops working! SUch is the nature of the med. beast. Good luck with it. Barbara > > > > > > > > > > > > > > > > > > > > > : > > > > > > We have gone this route with over the last 2 years. It > has not been > > > good. They were having problems with negative/aggressive > behaviors, as well > > > as attention issues. We had consented for her to have Risperdal > (.25mg > > > twice > > > daily) during school. We do not use it at home, grandparents, > church, or > > > any time other than school. And we feel the benefits have been > limited at > > > school, too: We still had to pick her up for out-of-school > suspensions, > > > even after they used a quiet room or in-school-suspension. We > feel it is > > > definitely related to issues the school is not handling - even > as written > > > in > > > her IEP - and the frustrations experiences must be > beyond belief. > > > Much is related to her vision and fatigue that the school just > doesn't get. > > > If she can't read the materials because the copy is too small, > how is she > > > to > > > pay attention and ultimately learn anything? Have you ever > tried to read > > > small print that makes you tired/frustrated, and thus your > attention > > > drifts? > > > Imagine that in everything: from the print, to placement in the > classroom, > > > to signing. > > > > > > has been out of school for Summer vacation since May > 24. We have > > > not given her any meds for attention or behaviors and she has > been just > > > fine. We have made changes in regards to things around the > house that have > > > printed labels on them: They are much larger. (I did this long > ago to > > > facilitate reading/identification of items around the house: > Desk, chair, > > > table, computer, keyboard, etc.) My parents had her for a week > and they > > > even made paper with wide lines for her to keep score with > during card > > > games. is her usual forceful self; but she is not > belligerent, > > > overly aggressive, or inattentive. (She is, however, in that > previously > > > mentioned " impatient " category! HA!) > > > > > > Are the teachers taking ALL of Tim into account, and what > difficulties he > > > might be having that lead to the attention issues? I'd take a > strong look > > > at EVERYTHING!!!! > > > > > > And never assume something that was " OK " before is still OK. We > made that > > > mistake with 's vision and are now in a huge struggle > with the > > > school > > > about this aspect. She has adapted amazingly well over the > years for what > > > we have recently discovered in visual areas. (Actually, her > adaptation > > > skills in this area are what kept us from addressing it for so > long.) Her > > > acuity is 20/20, 20/40 with corrective lenses. This does not > take into > > > account the processing problems, lack of > binocularity/convergence, eye > > > fatigue, and lower left field impairment. We can't get the > school to > > > understand that acuity is not the total picture for visual > impairment. She > > > is legally deafblind, or dual sensory impaired. Add overall > fatigue (both > > > from CHARGE and JRA) and pain (JRA), and all the " other stuff " > of CHARGE > > > and > > > is it any wonder she doesn't always pay attention or eventually > explodes? > > > > > > I would check with both the school and your ped. There may be a > need for > > > meds. But there may also be other factors that can (and should) > be looked > > > at and accommodated. And with specific accommodations, the meds > first > > > thought to be needed may indeed be of a different type. For > example: Does > > > Tim need an attention med; or is it really serving his needs > better to use > > > an anxiety med? We have to believe has a huge amount of > anxiety at > > > school, just because they aren't doing the needed > accommodations. Anxiety > > > riddled thoughts have been: " Will I be able to see the > signed/fingerspelled > > > instructions? " ; " Will I be able to read the test? " ; " Is there a > change of > > > staff or a substitute teacher, and do they know I need large > print? " ; " Will > > > the teacher use a color on the whiteboard I can't see clearly? " > (The IEP > > > states that whiteboards are to be absolutely clean - no prior > ghosting of > > > print - before beginning to use them with . And they are > to use dark > > > blue, black, red, and orange. Markers are also to be kept in > new condition > > > - meaning they can't be nearly dried out and have faded > printing result.) I > > > have forgotten what visual component Tim has from CHARGE. Do > you have a > > > good handle on that aspect? > > > > > > Everything, everything, EVERYTHING plays a role in how our kids > behave and > > > attend in school! I wish you luck in this. I look forward to > what you have > > > to report later. > > > > > > Friends in CHARGE, > > > > > > Marilyn Ogan > > > > > > Mom of (14, CHARGE+, JRA) > > > > > > Mom of Ken (17, Asperger's) > > > > > > Wife of Rick > > > > > > oganm@ > > > > > > _____ > > > > > > From: CHARGE (AT) yahoogroups (DOT) com > [mailto:CHARGE (AT) yahoogroups (DOT) com] On > Behalf Of > > > PATRICK HALLORAN > > > Sent: Monday, June 11, 2007 12:02 PM > > > To: CHARGE (AT) yahoogroups (DOT) com > > > Subject: meds > > > > > > > > > ok friends, Tim's teachers etc have told me that the attention > is getting > > > worse. it's never been good, but seem he just can't control > himslef > > > sometimes. when I brought up talking to the ped. about this > with pat he > > > absolutely does not want him on meds!!!!!!!!! > > > > > > any ideas? I am going to bring it up--I trust the dr. > completely--he's not > > > one to just put kids on meds, but wondered what your > experiences were? > > > thanks! > > > > > > maria > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 I haven't heard of the drug Abilify, what type of med is it? We've tried Prozac, unsuccessfully, and Risperdal, which seems to be at least somewhat helpful. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 We had tried a quarter dose of Prozac to start out a couple years ago and she went absolutely nuts! She couldn’t sleep, her signing was so fast she couldn’t control it, and 12 hours after taking just that small dose I had to pick her up at the dorm (she is a residential student at the Deaf School): Her eyes were HUGE and darting around like a hunted animal. Never tried it again, then have used the Risperdol at school last year. I don’t see any difference with it, and it didn’t help. I’d really like to find something that would ease what I feel is anxiety. OF course, adaptations at school (actually implemented) would go a long way to relieving some of that stress/anxiety. And so the med search will continue! Friends in CHARGE, Marilyn Ogan _____ From: CHARGE [mailto:CHARGE ] On Behalf Of rbwarter Sent: Wednesday, July 11, 2007 7:46 AM To: CHARGE Subject: Re: meds Every child is so different when it comes to meds and how it is handled. Originally our pediatric psychilatrist wanted to start with a tiny dose of riperidol. We went more conservatively with our neurologist and tried Prozac. I am really not sure that did anything. Then in an effort to " save " his placement and lower his energy/anxiety, we tried a low dose of Abilify and it was really fast...within a few days was just calm..more language, more problem solving , more visible self-control...really happy. For us, it has worked and I will continue to love it until he grows or something and it stops working! SUch is the nature of the med. beast. Good luck with it. Barbara > > > > > > > > > > > > > > > > > > > > > : > > > > > > We have gone this route with over the last 2 years. It > has not been > > > good. They were having problems with negative/aggressive > behaviors, as well > > > as attention issues. We had consented for her to have Risperdal > (.25mg > > > twice > > > daily) during school. We do not use it at home, grandparents, > church, or > > > any time other than school. And we feel the benefits have been > limited at > > > school, too: We still had to pick her up for out-of-school > suspensions, > > > even after they used a quiet room or in-school-suspension. We > feel it is > > > definitely related to issues the school is not handling - even > as written > > > in > > > her IEP - and the frustrations experiences must be > beyond belief. > > > Much is related to her vision and fatigue that the school just > doesn't get. > > > If she can't read the materials because the copy is too small, > how is she > > > to > > > pay attention and ultimately learn anything? Have you ever > tried to read > > > small print that makes you tired/frustrated, and thus your > attention > > > drifts? > > > Imagine that in everything: from the print, to placement in the > classroom, > > > to signing. > > > > > > has been out of school for Summer vacation since May > 24. We have > > > not given her any meds for attention or behaviors and she has > been just > > > fine. We have made changes in regards to things around the > house that have > > > printed labels on them: They are much larger. (I did this long > ago to > > > facilitate reading/identification of items around the house: > Desk, chair, > > > table, computer, keyboard, etc.) My parents had her for a week > and they > > > even made paper with wide lines for her to keep score with > during card > > > games. is her usual forceful self; but she is not > belligerent, > > > overly aggressive, or inattentive. (She is, however, in that > previously > > > mentioned " impatient " category! HA!) > > > > > > Are the teachers taking ALL of Tim into account, and what > difficulties he > > > might be having that lead to the attention issues? I'd take a > strong look > > > at EVERYTHING!!!! > > > > > > And never assume something that was " OK " before is still OK. We > made that > > > mistake with 's vision and are now in a huge struggle > with the > > > school > > > about this aspect. She has adapted amazingly well over the > years for what > > > we have recently discovered in visual areas. (Actually, her > adaptation > > > skills in this area are what kept us from addressing it for so > long.) Her > > > acuity is 20/20, 20/40 with corrective lenses. This does not > take into > > > account the processing problems, lack of > binocularity/convergence, eye > > > fatigue, and lower left field impairment. We can't get the > school to > > > understand that acuity is not the total picture for visual > impairment. She > > > is legally deafblind, or dual sensory impaired. Add overall > fatigue (both > > > from CHARGE and JRA) and pain (JRA), and all the " other stuff " > of CHARGE > > > and > > > is it any wonder she doesn't always pay attention or eventually > explodes? > > > > > > I would check with both the school and your ped. There may be a > need for > > > meds. But there may also be other factors that can (and should) > be looked > > > at and accommodated. And with specific accommodations, the meds > first > > > thought to be needed may indeed be of a different type. For > example: Does > > > Tim need an attention med; or is it really serving his needs > better to use > > > an anxiety med? We have to believe has a huge amount of > anxiety at > > > school, just because they aren't doing the needed > accommodations. Anxiety > > > riddled thoughts have been: " Will I be able to see the > signed/fingerspelled > > > instructions? " ; " Will I be able to read the test? " ; " Is there a > change of > > > staff or a substitute teacher, and do they know I need large > print? " ; " Will > > > the teacher use a color on the whiteboard I can't see clearly? " > (The IEP > > > states that whiteboards are to be absolutely clean - no prior > ghosting of > > > print - before beginning to use them with . And they are > to use dark > > > blue, black, red, and orange. Markers are also to be kept in > new condition > > > - meaning they can't be nearly dried out and have faded > printing result.) I > > > have forgotten what visual component Tim has from CHARGE. Do > you have a > > > good handle on that aspect? > > > > > > Everything, everything, EVERYTHING plays a role in how our kids > behave and > > > attend in school! I wish you luck in this. I look forward to > what you have > > > to report later. > > > > > > Friends in CHARGE, > > > > > > Marilyn Ogan > > > > > > Mom of (14, CHARGE+, JRA) > > > > > > Mom of Ken (17, Asperger's) > > > > > > Wife of Rick > > > > > > oganm@ > > > > > > _____ > > > > > > From: CHARGE (AT) yahoogroups (DOT) com > [mailto:CHARGE (AT) yahoogroups (DOT) com] On > Behalf Of > > > PATRICK HALLORAN > > > Sent: Monday, June 11, 2007 12:02 PM > > > To: CHARGE (AT) yahoogroups (DOT) com > > > Subject: meds > > > > > > > > > ok friends, Tim's teachers etc have told me that the attention > is getting > > > worse. it's never been good, but seem he just can't control > himslef > > > sometimes. when I brought up talking to the ped. about this > with pat he > > > absolutely does not want him on meds!!!!!!!!! > > > > > > any ideas? I am going to bring it up--I trust the dr. > completely--he's not > > > one to just put kids on meds, but wondered what your > experiences were? > > > thanks! > > > > > > maria > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Hi Marilyn, My son didn’t react well to that class of meds either (Risperdol, Prozac, Zoloft). We had a similar happening on Prozac and Risperdol and on Zoloft he was coming up with as many ways as he could to kill himself and became preoccupied with how he would die, so we removed it immediately. He is on Wellbutrin for an underlying anxiety disorder (as the neurologist puts it) and Depakote for mood and abdominal migraines. The anxiety triggers how bad the OCD gets so by treating the anxiety itself we have had the most success. He has been on Depakote for 6 years and Wellbutrin for 4 years. These have worked well. He has also been on Celexa that the psychiatrist wanted to try but is just about weaned off it as it didn’t work either. I am not exactly sure what class Abilify is but according to the neurologist it wasn’t a good match for his set of behaviors. We have had the best luck with meds by consulting with our neurologist rather than psychiatrist. Debbie meds > > > > > > > > > ok friends, Tim's teachers etc have told me that the attention > is getting > > > worse. it's never been good, but seem he just can't control > himslef > > > sometimes. when I brought up talking to the ped. about this > with pat he > > > absolutely does not want him on meds!!!!!!!!! > > > > > > any ideas? I am going to bring it up--I trust the dr. > completely--he's not > > > one to just put kids on meds, but wondered what your > experiences were? > > > thanks! > > > > > > maria > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 No, only on the Zoloft, although he was very depressed on the Risperdol. RE: Re: meds Hi Marilyn, My son didn't react well to that class of meds either (Risperdol, Prozac, Zoloft). We had a similar happening on Prozac and Risperdol and on Zoloft he was coming up with as many ways as he could to kill himself and became preoccupied with how he would die, so we removed it immediately. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Its a new medicine...in the same class as Risperidol but supposedly with less chance of side effects. Barbara > > I haven't heard of the drug Abilify, what type of med is it? We've tried Prozac, unsuccessfully, and Risperdal, which seems to be at least somewhat helpful. > > Jeanie > > > Quote Link to comment Share on other sites More sharing options...
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