Guest guest Posted September 8, 2009 Report Share Posted September 8, 2009 Dear Mache: Mine is just a different opinion, and only you can make the decision along with doctors you trust. I knew something had gone terribly wrong immediately following my son's fifteen month vaccinations. I was lucky to have had some knowledge and to keep searching for answers when the medical mainstream abandoned us for asserting it was, in fact, the shots. I made up my mind early on that we would not use psychotropic drugs unless absolutely necessary. Our son was moderate/severe and had become completely non-verbal. He suffered daily episodes of immense pain and could not tell us where it hurt. We began biomedical intervention at age two. When we began the GF/CF diet, we started with the removal of casein. Our son went through horrible withdrawal. He was hard to deal with, and I cried every day for three weeks, but after three weeks, many things started to get better. Perhaps there is the possibility that your child is going through a withdrawal period? Ask his neurologist. It is my own personal belief that these medications only cover up the real problem. I don't believe they do anything toward effecting a " cure " of what is really going on biochemically. However, I know that all children with autism are different. Our son has responded extremely well to the DAN! Protocol. My son is almost ten. Recently, he had a dietary infraction. Several people witnessed the change in my son within thirty minutes. The changed progressed to the point where my son got angry and put his hands around my throat and started choking me! I was able to release his hold and get him home. The incident has taught me to be even more diligent about his diet. However, if my son had not progressed on biomedical, given his weight and height at this time, I must confess that we would probably have had to resort to psychotropics in order to prevent institutionalization and keep him with us. Aggressive behavior can be a very scary thing. So I can see the need for these drugs in certain situations. I am of the opinion that once these drugs are started, most will need to be on them for the rest of their lives. That is a boon for the pharma industry. Their goal is not to " cure " anything, but to keep the bucks rolling in. All drugs have draw backs. Our son has had to practically live on antibiotics since he was fifteen months old. He has to be on various steroids nine months out of the year as his immune system over-reacts to everything. Yeast is a constant problem due to the antibiotics. The steroids have made him gain too much weight, and they cause him to stim more and have behavioral changes. I also worry about their long-term use; which can bring about diabetes, cataracts, and osteoporosis. Trying to fix biochemical problems in as natural a way as possible doesn't carry with it these risks, but as yet, we have not figured out a way to heal his immune system, and our son has to be able to breathe! In everything you consider you must weigh the risks against the benefits. Determine whether he is just going through a withdrawal period. These are much easier to deal with when children are little as opposed to big enough to do harm to themselves or others. Something, it seems, is causing your child pain. Try, for his sake, to find out what it is. Our son's pain came form his gut. It was excruciating and debilitating. When we began to heal his gut, everything got better. His doctor suggested psychotropics because he is back to stimming a lot. " Stimming " is not dangerous to us or to him, so we are further investigating the biomedical cause for the stimming. It is probably a combination of antibiotic use and steroids. I asked him why he " stims, " and he said, " because I like it. " It probably helps him cope with sensory input, so until we figure it out, the stimming will continue. If he is actively engaged, the stimming stops. Again, if it is necessary to prevent him harming himself or you, it may be necessary. Keep talking to his doctor, and get a second opinion, preferably from a DAN! or holistic physician. Have you ever had him tested for opiate peptides in his urine? Our son advanced from moderate/severe to very high functioning using biomedical intervention and our own version of ABA/floortime from the ages of two to four and a half. We could not afford to hire a professional ABA therapist. Biomedical (diet + enzymes +EFA +probiotics + Three-Lac +vitamins, minerals and amino acids) helped our son. It has by no means " cured " him. We chelated for seven months. In the seventh month he developed an allergy to sulfur, so we had to stop. Having witnessed the reaction he had to vaccination, we did not continue, and his doctor at that time concurred, so he got a medical waiver. I do believe this is a disease of toxicity, and whatever you can do to lower his toxic load will benefit him. My heart goes out to you. I don't know if you have a DAN! doctor, but I'm hoping you do or that you will get one. Sincerely, Shygirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2009 Report Share Posted September 8, 2009 > > I've heard so many negative things about risperdal. So I decided to talk to > his neurologist about taking him off this medication. We have started slowly > taking him off. We are on week four and with only 2 weeks to go, he would be > completely off this med. Here is the huge dilemma, he has gone berserk. He > has started behaviors that I have never seen before. He was never ever > aggressive. But these past couple of days, he has been punching himself in > the face, banging his head into the wall, getting so aggravated over very > minor things. He is 11 and completely non-verbal. So I can't ask him how he > is feeling. His ocd and hyperactivity has gotten 100 times worse. I called > his neurologist and he said that he had a suspicion this would happen but > agreed for me to take him off, because he wanted to support my decision. > They want me to put him back on the higher dose he used to be on. He says > some kids unfortunately just need these type of meds. Has anyone on this > list had this same problem? Has Risperdal helped any of your kiddos. I > wanted to take him off in the first place, because I felt like it had > stopped working. Never in a million years did I expect these kind of changes > when trying to get him off. > Thanks again, > Mache > Mache, My son is now nine he has PDD-NOS. We started him on Adderall when he was just 3 yrs old and he has adverse reactions to that. Adderall is family to Ridelin. So the doc tried him on Risperdal. I saw big changes! He was almost like a normal kid. When he was 5 I felt like the med was no longer working. So like you I gradually tried to take him off of it and the behaviors got worse and eventually there were more behaviors that I NEVER saw before but the doc assured me he would be fine and once he was off that they would try another med well needless to say the other med never worked I dont even remember the name of it! So we put him back on Risperdal just a higher dose than recommended at that age and he was fine!!! And now at 9 almost 10 yrs old he is on the highest dose recomended 7 mg a day. And we just recently went to the doctor because again it seemed as if the medicine wasnt working, so the doc said he was going to give him a med to help boost the Risperdal. He is now taking risperdal and DEPAKOTE. And he is doing great! Yes Depakote can have some serious side effects but our doctor does regular blood work on him to make sure the levels are ok. Depakote supposively is the only " autism " medicine that can be monitored by blood work! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 I just want to share my experience......... my son is being on risperdal for about 1 1/2 year... the only think we have notice was the gain weight .....we talked to his doc....he didn't agree about taking off the medication but because he was having also ADHD problems...with the new medication (for ADHD) he is taking , we just reduce the amount of the risperdal (.5ml)He is doing fine......it seems the new med is helping him and his behavior problems are not that bad either with out the regular doses he was taking.... I don't like to experiment on my own child what med is working and which one is not .....but some times you just have to take the decision and start with low doses ....YES it's a pain in the * & * & #%@.... ...now I understand why people said they "hate" austim..... you have to deal with so much..............but I guess the love that I feel for my child is much stronger than the "hate", and I deal with the problem every day and keep praying that any decision that I take for him, it will be the best for him.... rosie Subject: Re: RisperdalTo: Texas-Autism-Advocacy Date: Tuesday, September 8, 2009, 10:11 PM >> I've heard so many negative things about risperdal. So I decided to talk to> his neurologist about taking him off this medication. We have started slowly> taking him off. We are on week four and with only 2 weeks to go, he would be> completely off this med. Here is the huge dilemma, he has gone berserk. He> has started behaviors that I have never seen before. He was never ever> aggressive. But these past couple of days, he has been punching himself in> the face, banging his head into the wall, getting so aggravated over very> minor things. He is 11 and completely non-verbal. So I can't ask him how he> is feeling. His ocd and hyperactivity has gotten 100 times worse. I called> his neurologist and he said that he had a suspicion this would happen but> agreed for me to take him off, because he wanted to support my decision.> They want me to put him back on the higher dose he used to be on. He says> some kids unfortunately just need these type of meds. Has anyone on this> list had this same problem? Has Risperdal helped any of your kiddos. I> wanted to take him off in the first place, because I felt like it had> stopped working. Never in a million years did I expect these kind of changes> when trying to get him off.> Thanks again,> Mache>Mache,My son is now nine he has PDD-NOS. We started him on Adderall when he was just 3 yrs old and he has adverse reactions to that. Adderall is family to Ridelin. So the doc tried him on Risperdal. I saw big changes! He was almost like a normal kid. When he was 5 I felt like the med was no longer working. So like you I gradually tried to take him off of it and the behaviors got worse and eventually there were more behaviors that I NEVER saw before but the doc assured me he would be fine and once he was off that they would try another med well needless to say the other med never worked I dont even remember the name of it! So we put him back on Risperdal just a higher dose than recommended at that age and he was fine!!! And now at 9 almost 10 yrs old he is on the highest dose recomended 7 mg a day. And we just recently went to the doctor because again it seemed as if the medicine wasnt working, so the doc said he was going to give him a med to help boost the Risperdal. He is now taking risperdal and DEPAKOTE. And he is doing great! Yes Depakote can have some serious side effects but our doctor does regular blood work on him to make sure the levels are ok. Depakote supposively is the only "autism" medicine that can be monitored by blood work! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 thank you Nagla...that was eye-opening and informative.... Risperdal > Please don't take this as a judgement on any parent who uses psychptropic > drugs for their child, they do have their place. I am just trying to give > information for whoever is considering this to make an informed decision. > Psychotropic drugs are toxic and habit forming, they are difficult to get > off, and require weaning. No one really knows all of the mechanisms that > they can affect in the body or the brain. They are a last line of > treatment, not to be considered lightly. > They work by covering up symptoms rather than addressing the root of the > problem. Another issue to consider is the child's age, very young children > have growing brains, what effect will these drugs have on them (no one > knows, no safety studies have ever been done) and what will happen when > these drugs stop working and your child is a teenager with new and more > severe behaviors and the drug no longer works as desired? > If a patient uses them and they do not give the desired effect, please > consider getting off them instead of what most physicians do which is add > more drugs to counteract any negative side effect. This inevitably causes > more problems. I've personally seen children ending up in psychiatric > hospitals because of a 4 or 5 drug combo they are on has made them > impossible to live with and their behavior > is out of control. > > These drugs can cause tardive diskentia (thickening,thrusting and drooling > of the tongue) This is an irreversible side effect. They can cause > seizures, they are habit forming, they can cause parkinson like tics and > tremors, dizziness, constipation, stomach upset, nausea and can cause a > rise in blood sugar and lead to diabetes. > The chance of having these side effects gets higher when you up the dose > and stay on the drug longer. > Here are some side effect websites: > http://bipolar.about.com/cs/sfx/a/sfx_risperdal.htm > http://schizophrenia.emedtv.com/risperdal/risperdal-side-effects.html > http://www.risperdalsideeffects.com/ > If you do chose to use it, it's important to use 400IU of natural vitamin > E daily to protect the brain from some of the side effects.(most doctors > won't tell you this because they don't study supplements) > > Again this is just information, I am not a doctor and I certainly don't > live in anyone's shoes so I am in no position to judge or make a decision > for any family and what is best for their child. > I wish you all the best in whatever treatment you pursue to help your > child. > Respectfully, > Nagla > > > > > > > ------------------------------------ > > Texas Autism Advocacy > www.TexasAutismAdvocacy.org > > Texas Disability Network > Calendar of Events > www.TexasAutismAdvocacy.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 Pablo, I am glad you have found something that helps your son. I know that you are doing your best for your family. My thoughts and prayers are always with all our children and families. I understand how difficult life can be, and I am happy you found a solution. Nagla > > > > Subject: Re: Risperdal > To: Texas-Autism-Advocacy > Date: Wednesday, September 9, 2009, 12:14 PM > > > Â > > > > thank you Nagla...that was eye-opening and informative. ... > > [Texas-Autism- Advocacy] Risperdal > > > Please don't take this as a judgement on any parent who uses psychptropic > > drugs for their child, they do have their place. I am just trying to give > > information for whoever is considering this to make an informed decision. > > Psychotropic drugs are toxic and habit forming, they are difficult to get > > off, and require weaning. No one really knows all of the mechanisms that > > they can affect in the body or the brain. They are a last line of > > treatment, not to be considered lightly. > > They work by covering up symptoms rather than addressing the root of the > > problem. Another issue to consider is the child's age, very young children > > have growing brains, what effect will these drugs have on them (no one > > knows, no safety studies have ever been done) and what will happen when > > these drugs stop working and your child is a teenager with new and more > > severe behaviors and the drug no longer works as desired? > > If a patient uses them and they do not give the desired effect, please > > consider getting off them instead of what most physicians do which is add > > more drugs to counteract any negative side effect. This inevitably causes > > more problems. I've personally seen children ending up in psychiatric > > hospitals because of a 4 or 5 drug combo they are on has made them > > impossible to live with and their behavior > > is out of control. > > > > These drugs can cause tardive diskentia (thickening, thrusting and drooling > > of the tongue) This is an irreversible side effect. They can cause > > seizures, they are habit forming, they can cause parkinson like tics and > > tremors, dizziness, constipation, stomach upset, nausea and can cause a > > rise in blood sugar and lead to diabetes. > > The chance of having these side effects gets higher when you up the dose > > and stay on the drug longer. > > Here are some side effect websites: > > http://bipolar. about.com/ cs/sfx/a/ sfx_risperdal. htm > > http://schizophreni a.emedtv. com/risperdal/ risperdal- side-effects. html > > http://www.risperda lsideeffects. com/ > > If you do chose to use it, it's important to use 400IU of natural vitamin > > E daily to protect the brain from some of the side effects.(most doctors > > won't tell you this because they don't study supplements) > > > > Again this is just information, I am not a doctor and I certainly don't > > live in anyone's shoes so I am in no position to judge or make a decision > > for any family and what is best for their child. > > I wish you all the best in whatever treatment you pursue to help your > > child. > > Respectfully, > > Nagla > > > > > > > > > > > > > > ------------ --------- --------- ------ > > > > Texas Autism Advocacy > > www.TexasAutismAdvo cacy.org > > > > Texas Disability Network > > Calendar of Events > > www.TexasAutismAdvo cacy.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 Thanks once again to all you wonderful parents out there for always taking the time to help out another desperate parent : ) All the posts have been so informative and helpful. I do wish that I never had to put my son on these meds, but unfortunately he may be one of the few that really needs them. The doctor had us switch from Riperdal to Abilify. Keeping my fingers crossed. His entire body is covered in bruises and scratches, that he inflicted on himself, during the time I was trying to get him off these meds. Thanks again, Mache   I understand the side effects of these drugs and believe me it is the last choice of treatment you want to use, but when you have exhausted all resources you have no choice. We didn't start my son on risperdal till he was 12 years old. We combined this with Zoloft and it did not stop his running away. He would steal the house keys and open the door and just run. We have found him several blocks away in a strangers house and at a store a couple of blocks away. I know it sounds like we did not take precautions but we did have doubled keyed locks and door alarms. My son is taking abilify and loranzapan and he has not tried to escape in a long time. Thank you Lord! I admit the cocktail takes some time to evaluate. but if he is reacting to the meds. Your doctor should change the med or reduce them.I wish you the best and stay in close contact with your neurologist and doctor and his behavior.  Best Wishes, Pablo G. s Dad Pablo G. Fight for Autism April is Autism awareness month Subject: Re: Risperdal To: Texas-Autism-Advocacy Date: Wednesday, September 9, 2009, 12:14 PM  thank you Nagla...that was eye-opening and informative. ... [Texas-Autism- Advocacy] Risperdal> Please don't take this as a judgement on any parent who uses psychptropic > drugs for their child, they do have their place. I am just trying to give > information for whoever is considering this to make an informed decision.> Psychotropic drugs are toxic and habit forming, they are difficult to get > off, and require weaning. No one really knows all of the mechanisms that > they can affect in the body or the brain. They are a last line of > treatment, not to be considered lightly.> They work by covering up symptoms rather than addressing the root of the > problem. Another issue to consider is the child's age, very young children > have growing brains, what effect will these drugs have on them (no one > knows, no safety studies have ever been done) and what will happen when > these drugs stop working and your child is a teenager with new and more > severe behaviors and the drug no longer works as desired?> If a patient uses them and they do not give the desired effect, please > consider getting off them instead of what most physicians do which is add > more drugs to counteract any negative side effect. This inevitably causes > more problems. I've personally seen children ending up in psychiatric > hospitals because of a 4 or 5 drug combo they are on has made them > impossible to live with and their behavior> is out of control.>> These drugs can cause tardive diskentia (thickening, thrusting and drooling > of the tongue) This is an irreversible side effect. They can cause > seizures, they are habit forming, they can cause parkinson like tics and > tremors, dizziness, constipation, stomach upset, nausea and can cause a > rise in blood sugar and lead to diabetes.> The chance of having these side effects gets higher when you up the dose > and stay on the drug longer.> Here are some side effect websites:> http://bipolar. about.com/ cs/sfx/a/ sfx_risperdal. htm > http://schizophreni a.emedtv. com/risperdal/ risperdal- side-effects. html> http://www.risperda lsideeffects. com/ > If you do chose to use it, it's important to use 400IU of natural vitamin > E daily to protect the brain from some of the side effects.(most doctors > won't tell you this because they don't study supplements) >> Again this is just information, I am not a doctor and I certainly don't > live in anyone's shoes so I am in no position to judge or make a decision > for any family and what is best for their child. > I wish you all the best in whatever treatment you pursue to help your > child.> Respectfully,> Nagla>>>>>>> ------------ --------- --------- ------ >> Texas Autism Advocacy> www.TexasAutismAdvo cacy.org >> Texas Disability Network> Calendar of Events> www.TexasAutismAdvo cacy.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My 25 yr old daughter has been on Risperdal for 6 years. She has been on varying doses, but is currently on .5 mg in am and 1.0 mg in pm. This has really helped her. Like your daughter she had some obsessive behaviors, and some very aggressive behaviors. She is now on a more even mood - and is happy with herself. Before the Risperdal, after she would be aggressive, and time would pass she would say " I don't know what is the matter with me! or I don't know why I did that! " Knowing how she is so much happier now - we would do it again in a minute. We have not seen any adverse effects, just sleepiness if we give 1.0 mg in am, thus the divided dose. Risperdal Good afternoon! Things with my eighteen year old daughter who has autism have gone from bad to worse. Dealing with major obsessive behavior and now incredibly difficult self injurious and agressive behaviors. Her doctor now wants to put her on risperdal. I have heard some pretty ugly things about this drug, but we are it a really bad place right now, so I am willing to try anything. I would appreciate hearing from any of you who have used this drug with your child. Thanks! Jill A. Plato 26267 Panhandle Rd. Kane, IL 62054 217-942-6856 (home-eve) 618-498-5656 (day-work) 217-248-1117 (cell) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My 25 yr old daughter has been on Risperdal for 6 years. She has been on varying doses, but is currently on .5 mg in am and 1.0 mg in pm. This has really helped her. Like your daughter she had some obsessive behaviors, and some very aggressive behaviors. She is now on a more even mood - and is happy with herself. Before the Risperdal, after she would be aggressive, and time would pass she would say " I don't know what is the matter with me! or I don't know why I did that! " Knowing how she is so much happier now - we would do it again in a minute. We have not seen any adverse effects, just sleepiness if we give 1.0 mg in am, thus the divided dose. Risperdal Good afternoon! Things with my eighteen year old daughter who has autism have gone from bad to worse. Dealing with major obsessive behavior and now incredibly difficult self injurious and agressive behaviors. Her doctor now wants to put her on risperdal. I have heard some pretty ugly things about this drug, but we are it a really bad place right now, so I am willing to try anything. I would appreciate hearing from any of you who have used this drug with your child. Thanks! Jill A. Plato 26267 Panhandle Rd. Kane, IL 62054 217-942-6856 (home-eve) 618-498-5656 (day-work) 217-248-1117 (cell) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Prepare yourselves... takes Risperdal, too, and has for about 6-7 years, and yes it has helped her tremendously when all else has failed. Here's the shocking part -- her current dose, for the past year and a half, is up to NINE mls./day (split a.m. and p.m.). I think she started right around where your daughter is, -- but as she moved through puberty she kept needing more and more to achieve the same results. At this point, though, Jill, I wouldn't worry one bit about long term effects -- try it if your doctor and you, your daughter agree it may help, see if it does and then when things settle a bit you can figure out a better plan if there is one. Yes, there can be weight gain, and a lot of it, but if it's a question of your child being able to continue living at home with you, safely,accessing community etc vs., well, something else...then I say some unhealthy weight gain is a fair tradeoff, at least in the short term. , have you seen any ability to decrease the dose as your daughter has gotten older? This hope is what keeps me going some days -- that eventually (and is 21) when her hormones settle down some more, we can begin weaning her down in dosage. And when you're at 9 mls. daily, 1.5 sounds pretty awesomely low. I think started at really low, and the first threshhold she found where it 'kicked in' and really worked was around 3 mls/day. Then it slowly crept up to where she's at now. Hope that helps. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Prepare yourselves... takes Risperdal, too, and has for about 6-7 years, and yes it has helped her tremendously when all else has failed. Here's the shocking part -- her current dose, for the past year and a half, is up to NINE mls./day (split a.m. and p.m.). I think she started right around where your daughter is, -- but as she moved through puberty she kept needing more and more to achieve the same results. At this point, though, Jill, I wouldn't worry one bit about long term effects -- try it if your doctor and you, your daughter agree it may help, see if it does and then when things settle a bit you can figure out a better plan if there is one. Yes, there can be weight gain, and a lot of it, but if it's a question of your child being able to continue living at home with you, safely,accessing community etc vs., well, something else...then I say some unhealthy weight gain is a fair tradeoff, at least in the short term. , have you seen any ability to decrease the dose as your daughter has gotten older? This hope is what keeps me going some days -- that eventually (and is 21) when her hormones settle down some more, we can begin weaning her down in dosage. And when you're at 9 mls. daily, 1.5 sounds pretty awesomely low. I think started at really low, and the first threshhold she found where it 'kicked in' and really worked was around 3 mls/day. Then it slowly crept up to where she's at now. Hope that helps. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My oldest, Ricky, was put on Risperdal for agressive behaviors. After he was abused on the school bus, he became very agressive. He has Down syndrome. This medication was fabulous. He really improved.  After awhile he began to put on a great deal of weight. We eventually had to take him off. He did lose 20 lbs immediately.  I have a friend whose son has been on Risperdal for over 4 years. He does great. He does have Autism and agressive behaviors. On this medication he does not have any agressive behaviors at all.  Good luck. I would give it a try and see how she does. Bedard Ricky, andra and Tiffy's Mom  “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver From: jillplato@... <jillplato@...> Subject: Risperdal IPADDUnite Date: Thursday, October 29, 2009, 7:40 PM  Good afternoon! Things with my eighteen year old daughter who has autism have gone from bad to worse. Dealing with major obsessive behavior and now incredibly difficult self injurious and agressive behaviors. Her doctor now wants to put her on risperdal. I have heard some pretty ugly things about this drug, but we are it a really bad place right now, so I am willing to try anything. I would appreciate hearing from any of you who have used this drug with your child. Thanks! Jill A. Plato 26267 Panhandle Rd. Kane, IL 62054 217-942-6856 (home-eve) 618-498-5656 (day-work) 217-248-1117 (cell) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My oldest, Ricky, was put on Risperdal for agressive behaviors. After he was abused on the school bus, he became very agressive. He has Down syndrome. This medication was fabulous. He really improved.  After awhile he began to put on a great deal of weight. We eventually had to take him off. He did lose 20 lbs immediately.  I have a friend whose son has been on Risperdal for over 4 years. He does great. He does have Autism and agressive behaviors. On this medication he does not have any agressive behaviors at all.  Good luck. I would give it a try and see how she does. Bedard Ricky, andra and Tiffy's Mom  “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver From: jillplato@... <jillplato@...> Subject: Risperdal IPADDUnite Date: Thursday, October 29, 2009, 7:40 PM  Good afternoon! Things with my eighteen year old daughter who has autism have gone from bad to worse. Dealing with major obsessive behavior and now incredibly difficult self injurious and agressive behaviors. Her doctor now wants to put her on risperdal. I have heard some pretty ugly things about this drug, but we are it a really bad place right now, so I am willing to try anything. I would appreciate hearing from any of you who have used this drug with your child. Thanks! Jill A. Plato 26267 Panhandle Rd. Kane, IL 62054 217-942-6856 (home-eve) 618-498-5656 (day-work) 217-248-1117 (cell) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My son has been on Risperdal for about 4-6 yrs. He's on it because of aggresive, self-injurious & OCD behaviors. I think it had helped some, but he still has all the same behaviors. (Think he's become immune to it). Don't know at this point if he'd be worse if we took him off. He takes 3 mg. twice a day. ne thing it didn't do in his case, is put extra weight on. I'm actually fighting all the time to get weight on him. I was finally willing to try a different med this last time, but the pysch didn't change them. Just added Ativan. He's on a very low dose. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My son has been on Risperdal for about 4-6 yrs. He's on it because of aggresive, self-injurious & OCD behaviors. I think it had helped some, but he still has all the same behaviors. (Think he's become immune to it). Don't know at this point if he'd be worse if we took him off. He takes 3 mg. twice a day. ne thing it didn't do in his case, is put extra weight on. I'm actually fighting all the time to get weight on him. I was finally willing to try a different med this last time, but the pysch didn't change them. Just added Ativan. He's on a very low dose. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My 16 year old daughter who also has Autism was on .25mg of Risperdal for about a year for aggression and also 5mg of Lexapro for depression and OCD, the aggression was under control for a while but got so bad that she was hospitalized in the child psychiatric unit for 2 weeks a year and a half ago and they switched her to 125mg of Zoloft and 5mg of Zyprexa. This worked for 9 months and then we took her off the Zyprexa and she did great for another 9 months and then slowly the aggressive behaviors and self injurious behaviors came back but much worse and now she is currently admitted in the child psychiatric unit because she wont stop hitting herself in the head and has given herself 5 black eyes within a 4 week period. The doctors are decreasing her Zoloft to 37mg and have increased her Zyprexa to 10mg throughout the day. They are also considering Depakote. I am so frustrated with the process of finding the right medication or right dosage because her behaviors have not stopped. I feel for anyone going through this. It is so painfully hard to watch your child suffer but I will not stop trying until they find the right medication or dosage that will help bring my girl back. I feel so alone on this but as I read these emails I find I am not alone. I pray her doctors will find something that works soon. Dana ________________________________ From: Richter <ginar_30@...> IPADDUnite Sent: Thu, October 29, 2009 2:46:41 PM Subject: Re: Risperdal  My 25 yr old daughter has been on Risperdal for 6 years. She has been on varying doses, but is currently on .5 mg in am and 1.0 mg in pm. This has really helped her. Like your daughter she had some obsessive behaviors, and some very aggressive behaviors. She is now on a more even mood - and is happy with herself. Before the Risperdal, after she would be aggressive, and time would pass she would say " I don't know what is the matter with me! or I don't know why I did that! " Knowing how she is so much happier now - we would do it again in a minute. We have not seen any adverse effects, just sleepiness if we give 1.0 mg in am, thus the divided dose. Risperdal Good afternoon! Things with my eighteen year old daughter who has autism have gone from bad to worse. Dealing with major obsessive behavior and now incredibly difficult self injurious and agressive behaviors. Her doctor now wants to put her on risperdal. I have heard some pretty ugly things about this drug, but we are it a really bad place right now, so I am willing to try anything. I would appreciate hearing from any of you who have used this drug with your child. Thanks! Jill A. Plato 26267 Panhandle Rd. Kane, IL 62054 217-942-6856 (home-eve) 618-498-5656 (day-work) 217-248-1117 (cell) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 My 16 year old daughter who also has Autism was on .25mg of Risperdal for about a year for aggression and also 5mg of Lexapro for depression and OCD, the aggression was under control for a while but got so bad that she was hospitalized in the child psychiatric unit for 2 weeks a year and a half ago and they switched her to 125mg of Zoloft and 5mg of Zyprexa. This worked for 9 months and then we took her off the Zyprexa and she did great for another 9 months and then slowly the aggressive behaviors and self injurious behaviors came back but much worse and now she is currently admitted in the child psychiatric unit because she wont stop hitting herself in the head and has given herself 5 black eyes within a 4 week period. The doctors are decreasing her Zoloft to 37mg and have increased her Zyprexa to 10mg throughout the day. They are also considering Depakote. I am so frustrated with the process of finding the right medication or right dosage because her behaviors have not stopped. I feel for anyone going through this. It is so painfully hard to watch your child suffer but I will not stop trying until they find the right medication or dosage that will help bring my girl back. I feel so alone on this but as I read these emails I find I am not alone. I pray her doctors will find something that works soon. Dana ________________________________ From: Richter <ginar_30@...> IPADDUnite Sent: Thu, October 29, 2009 2:46:41 PM Subject: Re: Risperdal  My 25 yr old daughter has been on Risperdal for 6 years. She has been on varying doses, but is currently on .5 mg in am and 1.0 mg in pm. This has really helped her. Like your daughter she had some obsessive behaviors, and some very aggressive behaviors. She is now on a more even mood - and is happy with herself. Before the Risperdal, after she would be aggressive, and time would pass she would say " I don't know what is the matter with me! or I don't know why I did that! " Knowing how she is so much happier now - we would do it again in a minute. We have not seen any adverse effects, just sleepiness if we give 1.0 mg in am, thus the divided dose. Risperdal Good afternoon! Things with my eighteen year old daughter who has autism have gone from bad to worse. Dealing with major obsessive behavior and now incredibly difficult self injurious and agressive behaviors. Her doctor now wants to put her on risperdal. I have heard some pretty ugly things about this drug, but we are it a really bad place right now, so I am willing to try anything. I would appreciate hearing from any of you who have used this drug with your child. Thanks! Jill A. Plato 26267 Panhandle Rd. Kane, IL 62054 217-942-6856 (home-eve) 618-498-5656 (day-work) 217-248-1117 (cell) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Dana, You're definitely not alone, and my heart goes out to your daughter and your entire family. It IS so excruciatingly painful to see our kids hurting or troubled or scared. You're right.  I was in a meeting yesterday where someone referenced 'wraparound services', a reference to programs designed to literally wrap around a family in support during times of critical need. What a lovely thought, isn't it? I'd like to think that IPADD could help, even in a small way, to break the isolation and aloneness so many of us feel from time to time when things get particularly challenging.  So please, post anytime about your daughter and how she's doing. We'll be here to listen, console or cheer you on.  Take care, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Dana, You're definitely not alone, and my heart goes out to your daughter and your entire family. It IS so excruciatingly painful to see our kids hurting or troubled or scared. You're right.  I was in a meeting yesterday where someone referenced 'wraparound services', a reference to programs designed to literally wrap around a family in support during times of critical need. What a lovely thought, isn't it? I'd like to think that IPADD could help, even in a small way, to break the isolation and aloneness so many of us feel from time to time when things get particularly challenging.  So please, post anytime about your daughter and how she's doing. We'll be here to listen, console or cheer you on.  Take care, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Thank you Laurie for your kind words and for your support...it is very comforting to know we are not alone.  Dana ________________________________ From: " jeruefamily@... " <jeruefamily@...> IPADDUnite Sent: Thu, October 29, 2009 11:59:36 PM Subject: Re: Risperdal  Dana, You're definitely not alone, and my heart goes out to your daughter and your entire family. It IS so excruciatingly painful to see our kids hurting or troubled or scared. You're right.  I was in a meeting yesterday where someone referenced 'wraparound services', a reference to programs designed to literally wrap around a family in support during times of critical need. What a lovely thought, isn't it? I'd like to think that IPADD could help, even in a small way, to break the isolation and aloneness so many of us feel from time to time when things get particularly challenging.  So please, post anytime about your daughter and how she's doing. We'll be here to listen, console or cheer you on.  Take care, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 Thank you Laurie for your kind words and for your support...it is very comforting to know we are not alone.  Dana ________________________________ From: " jeruefamily@... " <jeruefamily@...> IPADDUnite Sent: Thu, October 29, 2009 11:59:36 PM Subject: Re: Risperdal  Dana, You're definitely not alone, and my heart goes out to your daughter and your entire family. It IS so excruciatingly painful to see our kids hurting or troubled or scared. You're right.  I was in a meeting yesterday where someone referenced 'wraparound services', a reference to programs designed to literally wrap around a family in support during times of critical need. What a lovely thought, isn't it? I'd like to think that IPADD could help, even in a small way, to break the isolation and aloneness so many of us feel from time to time when things get particularly challenging.  So please, post anytime about your daughter and how she's doing. We'll be here to listen, console or cheer you on.  Take care, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 Dana, we've been going through the same head beating, aggression outbursts with our son this year. I winced as I read your post as our situation has been very similar but at the same time your putting it out in the open made our situation not feel as isolating. These behaviors make the ride even rougher than is already is with a special needs individual. Hang in there and thank you for sharing. On Thu, 29 Oct 2009 22:35:55 -0700 (PDT) Dana Basham <danajoy17@...> writes: Thank you Laurie for your kind words and for your support...it is very comforting to know we are not alone. Dana ________________________________ From: " jeruefamily@... " <jeruefamily@...> IPADDUnite Sent: Thu, October 29, 2009 11:59:36 PM Subject: Re: Risperdal Dana, You're definitely not alone, and my heart goes out to your daughter and your entire family. It IS so excruciatingly painful to see our kids hurting or troubled or scared. You're right. I was in a meeting yesterday where someone referenced 'wraparound services', a reference to programs designed to literally wrap around a family in support during times of critical need. What a lovely thought, isn't it? I'd like to think that IPADD could help, even in a small way, to break the isolation and aloneness so many of us feel from time to time when things get particularly challenging. So please, post anytime about your daughter and how she's doing. We'll be here to listen, console or cheer you on. Take care, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 Dana, we've been going through the same head beating, aggression outbursts with our son this year. I winced as I read your post as our situation has been very similar but at the same time your putting it out in the open made our situation not feel as isolating. These behaviors make the ride even rougher than is already is with a special needs individual. Hang in there and thank you for sharing. On Thu, 29 Oct 2009 22:35:55 -0700 (PDT) Dana Basham <danajoy17@...> writes: Thank you Laurie for your kind words and for your support...it is very comforting to know we are not alone. Dana ________________________________ From: " jeruefamily@... " <jeruefamily@...> IPADDUnite Sent: Thu, October 29, 2009 11:59:36 PM Subject: Re: Risperdal Dana, You're definitely not alone, and my heart goes out to your daughter and your entire family. It IS so excruciatingly painful to see our kids hurting or troubled or scared. You're right. I was in a meeting yesterday where someone referenced 'wraparound services', a reference to programs designed to literally wrap around a family in support during times of critical need. What a lovely thought, isn't it? I'd like to think that IPADD could help, even in a small way, to break the isolation and aloneness so many of us feel from time to time when things get particularly challenging. So please, post anytime about your daughter and how she's doing. We'll be here to listen, console or cheer you on. Take care, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 I love the term " wrap around " !!!! In a perfect world!!! It would be nice to just get intermittent services for all those who need it!! Re: Risperdal Dana, You're definitely not alone, and my heart goes out to your daughter and your entire family. It IS so excruciatingly painful to see our kids hurting or troubled or scared. You're right. I was in a meeting yesterday where someone referenced 'wraparound services', a reference to programs designed to literally wrap around a family in support during times of critical need. What a lovely thought, isn't it? I'd like to think that IPADD could help, even in a small way, to break the isolation and aloneness so many of us feel from time to time when things get particularly challenging. So please, post anytime about your daughter and how she's doing. We'll be here to listen, console or cheer you on. Take care, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 I love the term " wrap around " !!!! In a perfect world!!! It would be nice to just get intermittent services for all those who need it!! Re: Risperdal Dana, You're definitely not alone, and my heart goes out to your daughter and your entire family. It IS so excruciatingly painful to see our kids hurting or troubled or scared. You're right. I was in a meeting yesterday where someone referenced 'wraparound services', a reference to programs designed to literally wrap around a family in support during times of critical need. What a lovely thought, isn't it? I'd like to think that IPADD could help, even in a small way, to break the isolation and aloneness so many of us feel from time to time when things get particularly challenging. So please, post anytime about your daughter and how she's doing. We'll be here to listen, console or cheer you on. Take care, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2009 Report Share Posted October 30, 2009 Laurie, Kim was on a higher dose (I can't remember how much, at least double what she is on now) - we were able to decrease it AFTER she moved out of the house. Much of her aggression was toward me - and once she was happily living " like all my friends " (that is out of the house and " on her own " ) her aggressions' lessened. She is VERY happy in her current arrangement, and WHEN we can be sure there will be no staff changes, etc because the budget is passed and funding is secure, we will try to decrease again. AID had to lay off over 40 people with the last cuts, and we still don't have an assurance for Dec thru June. Re: Risperdal Prepare yourselves... takes Risperdal, too, and has for about 6-7 years, and yes it has helped her tremendously when all else has failed. Here's the shocking part -- her current dose, for the past year and a half, is up to NINE mls./day (split a.m. and p.m.). I think she started right around where your daughter is, -- but as she moved through puberty she kept needing more and more to achieve the same results. At this point, though, Jill, I wouldn't worry one bit about long term effects -- try it if your doctor and you, your daughter agree it may help, see if it does and then when things settle a bit you can figure out a better plan if there is one. Yes, there can be weight gain, and a lot of it, but if it's a question of your child being able to continue living at home with you, safely,accessing community etc vs., well, something else...then I say some unhealthy weight gain is a fair tradeoff, at least in the short term. , have you seen any ability to decrease the dose as your daughter has gotten older? This hope is what keeps me going some days -- that eventually (and is 21) when her hormones settle down some more, we can begin weaning her down in dosage. And when you're at 9 mls. daily, 1.5 sounds pretty awesomely low. I think started at really low, and the first threshhold she found where it 'kicked in' and really worked was around 3 mls/day. Then it slowly crept up to where she's at now. Hope that helps. Laurie Quote Link to comment Share on other sites More sharing options...
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