Maverick_Mom Posted March 8, 2012 Share Posted March 8, 2012 Our pediatrician just suggested that dh and I consider Risperdal for ds2 (13, Asperger's and seizure disorder). Ds has behavioral issues that have been creating an increasing amount of stress in our home. I haven't had a chance to do any research yet, so my reaction is purely emotional at this point. I had no idea that meds were given to kids on the spectrum for behavioral issues, unless the kids had a secondary dx such as bipolar disorder. I expected the doctor to suggest ADHD meds, since ds has a ADHD dx from our previous doctor. But this doctor says he doesn't think ds has full-blown ADHD -- he thinks his ADHD behaviors are part of the Asperger's. I think what's rattling me the most right now is that Risperdal is an anti-psychotic. Of course, that doesn't mean the doctor is suggesting that ds is psychotic -- that just happens to be the pharmaceutical category that Risperdal is in -- but right now the word is upsetting me and I can't shake it. Quote Link to comment Share on other sites More sharing options...
prissygirls Posted March 8, 2012 Share Posted March 8, 2012 My eight year old dd has PDD-Nos and we have just started Risperdal. She has some major behavioral problems and anixety. I am really hope to see a change with the meds but so far nothing. We are increasing the dose tomorrow. A couple side effects can be weight gain and sleepness. We have not experienced anything yet. Quote Link to comment Share on other sites More sharing options...
pdalley Posted March 8, 2012 Share Posted March 8, 2012 Oldest has been on .25 mg of Risperdal for a long time. We've tried to take him off of it at various points and will probably try a 1/2 dose soon. It's the only one that worked. He can have meltdowns that can result in property damage and people getting hurt. The Risperdal seems to give him time to take a deep breath and calm down before reacting. He's had some weight gain due to it causing the munchies but otherwise not other side effects. I scared me at first but it really has been worth the risk for him. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 9, 2012 Share Posted March 9, 2012 I think that Risperdal is increasingly being used for behavioral issues related to Aspergers and Autism in addition to being used for bipolar. My 16dd has been on it since she was 5 and it was life changing for her. We have had NO side effects--no weight gain, etc. My 15dd has been on it for about 5 years and again with positive results. It can be dosed very low and gone up as needed. Some kids do fine with twice a day dosing where others need it 4-5 times a day (per our pdoc). Have you seen a pediatric psychiatrist (pdoc)? Honestly, while I think that Risperdal is a very reasonable choice, I would rather have a pdoc prescribing it over a pediatrician unless they have a lot of training and experience with the meds. Our pdoc, before starting meds, does a baseline blood work (including thyroid, sugars, lipids, etc) and an EKG just to make sure there is nothing else going on that the meds might make worse or needs to be addressed first. Quote Link to comment Share on other sites More sharing options...
sweetsouthern Posted March 9, 2012 Share Posted March 9, 2012 risperadal seems to work great for my 12 yr old (anger type issues with anxiety) ... she has had some weight gain. she takes .5mg twice a day. my 11 yr old (my real issue child.. see siggie below) takes 1mg twice a day. it helps her for sure, but its definetly not the right fit at this dose. shes been taking it about 7 months now and we have increased it all along. she sees the pschy again next week so im not sure if we are going to increase again or change it. but it has helped. :) I think that Risperdal is increasingly being used for behavioral issues related to Aspergers and Autism in addition to being used for bipolar. My 16dd has been on it since she was 5 and it was life changing for her. We have had NO side effects--no weight gain, etc. My 15dd has been on it for about 5 years and again with positive results. It can be dosed very low and gone up as needed. Some kids do fine with twice a day dosing where others need it 4-5 times a day (per our pdoc). Have you seen a pediatric psychiatrist (pdoc)? Honestly, while I think that Risperdal is a very reasonable choice, I would rather have a pdoc prescribing it over a pediatrician unless they have a lot of training and experience with the meds. Our pdoc, before starting meds, does a baseline blood work (including thyroid, sugars, lipids, etc) and an EKG just to make sure there is nothing else going on that the meds might make worse or needs to be addressed first. hi ottake!! what dose do your kids take of the risperadal?? just curious :) Quote Link to comment Share on other sites More sharing options...
sweetsouthern Posted March 9, 2012 Share Posted March 9, 2012 oh and i should add.. she missed the aspie diagnosis by one thing, which i disagreed with, so they gave her the pdd-nos dx. :glare: Quote Link to comment Share on other sites More sharing options...
Tap Posted March 9, 2012 Share Posted March 9, 2012 dd5 was on it for 6mths, then off for 6mths (switched meds) and then she went back on it. LOL It is commonly prescribed for, (and FDA approved for) the agitation that is common with autism. It helps quite a bit for dds aggression. It isn't 100% effective, and we are looking at a change, but for right now, it is better than nothing. I would say it decreases her issues by about 50%. She still has tantrums often, but they are not as violent as they were before overall. It is an old medication that has a good reputation. I like the older medications over the newer ones, because the safety profile has been studied for many years beyond its original research. It is commonly a first round go-to for mental health issues, including autism/aspergers. Quote Link to comment Share on other sites More sharing options...
Tap Posted March 9, 2012 Share Posted March 9, 2012 oh and i should add.. she missed the aspie diagnosis by one thing, which i disagreed with, so they gave her the pdd-nos dx. :glare: DD5 is dx PDD-NOS also. One thing I like about this diagnosis, is that it leaves her abilities/strengths/deficits more open to interpretation. Unless you need the dx for something like a specific part of an IEP at school, a PDD-NOS can be a good open diagnosis. One reason dd has a PDD diagnosis, is that we have already worked through some of the issues that are commonly used to diagnose aspergers/autism. I actually found comfort as we went through the criteria, and found some of the diagnostic traits 'used to' match her, but they didn't any longer. I don't want you to feel like I am discounting what you feel, or am saying that I think you should feel different than you do. I am just sharing a different perspective on the diagnosis. I am sorry that we have to worry about such things as the right diagnosis :( at all. Quote Link to comment Share on other sites More sharing options...
swellmomma Posted March 9, 2012 Share Posted March 9, 2012 Ds13 was on risperdal years ago for aggression and anger. When it got time to be increasing dosing I had him weaned off. It is such a strong med and I didn't think we were there yet. We are there now, and I have been begging his ped to put him back on it and they won't. ADHD meds are actually not ideal for those on the spectrum. WHile they work to calm just plain ol' ADHD kids they can actually cause increased rages and violence with those that are spectrum (or pretty darn close to it). That is why ds is off of ritalin now. It worked great for years. Then it made his rages worse. He has been med free for almost 2 years. They have been the worst 2 years of our lives, seriously, getting him back on risperdol may not help but it may save our very damaged relationship. Atypical use of antipsychotics is extremely helpful for kids that are aggressive, quick to anger and explode etc. I have been where you are worrying over the med etc and it has it's fair share of risks but if it can help prevent the erosion of your relationship with your son and with his place in the family it is so worth it imo Quote Link to comment Share on other sites More sharing options...
Maverick_Mom Posted March 9, 2012 Author Share Posted March 9, 2012 Have you seen a pediatric psychiatrist (pdoc)? Honestly, while I think that Risperdal is a very reasonable choice, I would rather have a pdoc prescribing it over a pediatrician unless they have a lot of training and experience with the meds. Our pdoc, before starting meds, does a baseline blood work (including thyroid, sugars, lipids, etc) and an EKG just to make sure there is nothing else going on that the meds might make worse or needs to be addressed first. Ds has been under the care of a pediatric neurologist for 7 years, ever since he had his first seizure. We've just moved to a new state and are getting started with new doctors. The pediatric neurologist's protocol is for all new patients to see a pediatrician first and then be referred to the ped. neuro. We're fortunate in that we happened to choose a pediatrician whose office is one floor below the ped. neuro (the only ped. neuro for miles around), and they work very closely together. We've had our initial appointments with the pediatrician, and the appointments with the ped. neuro will be in a few weeks (and will include baseline testing). The pediatrician assured us that whatever decision we make re: meds, he and the ped. neuro. will work closely with one another and with us. So my answer to your question is that we haven't specifically seen a psychiatrist with regard to this -- but the pediatrician specializes in behavioral issues, especially related to the spectrum, and I have a lot of confidence in the ped. neuro to cover all the bases, or to refer us if necessary. I understand what you're saying. There are a lot of good, knowledgeable pediatricians out there. But IMHO, when you start getting into the area of psychotropic medications, some amount of professional specialization is a good thing. Quote Link to comment Share on other sites More sharing options...
Guest Posted March 9, 2012 Share Posted March 9, 2012 :grouphug: I thought this might help. From Healing the New Childhood Epidemics by Dr. Kenneth Bock pgs. 340-341: The only FDA-approved autism drug, Risperdal can be very helpful for kids who really need it. When the kids are self-injurious or prone to aggression, Risperdal can help restore more normalized executive function, and help children to control their impulses, and make better decisions. The drug is particularly appropriate for the high-dopamine kids, who are often put on the wrong medication. This includes autistic kids with ADHD features, and other kids with severe ADHD, who are often incorrectly prescribed stimulants. Stimulants, such as Ritalin, may help some kids with ADHD, but they're terrible for the autistic kids who already have too much dopamine activity. These kids do much better on Risperdal. Again, we see the importance of careful individualization. There is more if you want to try to get the book from your library. Keep in mind that Dr. Bock is not pro-med when he does not feel that they are needed. Hang in there :grouphug:! Quote Link to comment Share on other sites More sharing options...
Maverick_Mom Posted March 9, 2012 Author Share Posted March 9, 2012 :grouphug: I thought this might help. From Healing the New Childhood Epidemics by Dr. Kenneth Bock pgs. 340-341: There is more if you want to try to get the book from your library. Keep in mind that Dr. Bock is not pro-med when he does not feel that they are needed. Hang in there :grouphug:! I did a double-take when I saw the name of the author. He used to (and may still) practice with his brother Steven Bock in upstate NY! I actually saw Steven for treatment of hives many years ago, and had allergy testing done. Small world! I will definitely look for this book. Thanks so much! Quote Link to comment Share on other sites More sharing options...
Guest Posted March 9, 2012 Share Posted March 9, 2012 I did a double-take when I saw the name of the author. He used to (and may still) practice with his brother Steven Bock in upstate NY! I actually saw Steven for treatment of hives many years ago, and had allergy testing done. Small world! I will definitely look for this book. Thanks so much! According to his book he does :D, although it is a 2007 edition! It is a small world! I wish I could take my son to him! We are in Canada though :tongue_smilie:. Quote Link to comment Share on other sites More sharing options...
Guest Posted March 9, 2012 Share Posted March 9, 2012 Actually, I just found his site for you: http://www.rhinebeckhealth.com/rhc/index.php Quote Link to comment Share on other sites More sharing options...
Maverick_Mom Posted March 9, 2012 Author Share Posted March 9, 2012 Actually, I just found his site for you: http://www.rhinebeckhealth.com/rhc/index.php Thank you!!! Quote Link to comment Share on other sites More sharing options...
Guest Posted March 9, 2012 Share Posted March 9, 2012 Thank you!!! :D Quote Link to comment Share on other sites More sharing options...
Maverick_Mom Posted March 9, 2012 Author Share Posted March 9, 2012 I will definitely look for this book. Thanks so much! Hurray -- my library has it!!! :001_smile: Quote Link to comment Share on other sites More sharing options...
Guest Posted March 9, 2012 Share Posted March 9, 2012 Hurray -- my library has it!!! :001_smile: :thumbup:I'm still reading my library copy. I am about halfway through. I realized the other day that I would be referring back to it a lot so I ordered my own copy. I have quoted Dr. Bock's book so many times on here lately, I figured I owed him that much ;)! Quote Link to comment Share on other sites More sharing options...
chiguirre Posted March 9, 2012 Share Posted March 9, 2012 GW has been on Risperdal for 7 years now and takes a huge does (1.5 mg 2x a day). He's never experienced weight gain, sleep issues or ticks. That's not a common dose, but apparently there is a small subset of asd patients that do need that massive a dose, but who experience no negative side effects. OTOH, there are kids who have huge weight gains with a small dose and you won't know which kind you've got until you do a trial. I hope it works for you! Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 9, 2012 Share Posted March 9, 2012 hi ottake!! what dose do your kids take of the risperadal?? just curious :) Both take 0.5mg twice a day. That is a lower end dose but works for them. They both have mitochondrial myopathies that can affect how they metabolize meds so sometimes we need much higher doses and other times much lower doses than "typical" kids. Quote Link to comment Share on other sites More sharing options...
houseofkids&pets Posted March 10, 2012 Share Posted March 10, 2012 Ds12 seems to have difficulty with most meds that we have tried. He was given the generic (resperidone) and ended up sluggish most of the time, but still had a huge appetite. He put on A LOT of weight. He would actually climb the shelves in the pantry to try to get to food. Even with adjustments to the dose, it just was not a good fit for him. Stimulant meds increased his anxiety to the point where he became very withdrawn and lost all eye contact. Other kids even commented on the change in his personality because it was so obvious. DS is currently taking intuniv. It has helped to take the "edge" off so his behavioral outbursts are not as intense. It seems to give us a small window of opportunity to distract him or get him to use calming strategies before he reaches the full blown explosion stage. He has been somewhat violent in the past, but we have really seen a reduction. I'm not sure if this is the med, maturation, or a combination of both. Unfortunately, intuniv has not helped him at all with attention span. He is not hyperactive by any means, but his ability to attend to any task for a sustained amount of time is very poor. It is amazing how meds affect each child in such different ways. You just have to work with a really good doctor to find what works best for your child. Quote Link to comment Share on other sites More sharing options...
jewellsmommy Posted March 10, 2012 Share Posted March 10, 2012 Ds13 was on risperdal years ago for aggression and anger. When it got time to be increasing dosing I had him weaned off. It is such a strong med and I didn't think we were there yet. We are there now, and I have been begging his ped to put him back on it and they won't. ADHD meds are actually not ideal for those on the spectrum. WHile they work to calm just plain ol' ADHD kids they can actually cause increased rages and violence with those that are spectrum (or pretty darn close to it). That is why ds is off of ritalin now. It worked great for years. Then it made his rages worse. He has been med free for almost 2 years. They have been the worst 2 years of our lives, seriously, getting him back on risperdol may not help but it may save our very damaged relationship. Atypical use of antipsychotics is extremely helpful for kids that are aggressive, quick to anger and explode etc. I have been where you are worrying over the med etc and it has it's fair share of risks but if it can help prevent the erosion of your relationship with your son and with his place in the family it is so worth it imo Yep. Ds is on risperdal because of his aggressive outbursts. The ADHD med (stimulant) makes him more aggressive and anxious. But he has to have it. Intuniv is a great way around that problem, but ds's blood pressure went too low on it. Quote Link to comment Share on other sites More sharing options...
Tap Posted March 10, 2012 Share Posted March 10, 2012 Ds12 seems to have difficulty with most meds that we have tried. He was given the generic (resperidone) and ended up sluggish most of the time, but still had a huge appetite. He put on A LOT of weight. He would actually climb the shelves in the pantry to try to get to food. Even with adjustments to the dose, it just was not a good fit for him. Stimulant meds increased his anxiety to the point where he became very withdrawn and lost all eye contact. Other kids even commented on the change in his personality because it was so obvious. DS is currently taking intuniv. It has helped to take the "edge" off so his behavioral outbursts are not as intense. It seems to give us a small window of opportunity to distract him or get him to use calming strategies before he reaches the full blown explosion stage. He has been somewhat violent in the past, but we have really seen a reduction. I'm not sure if this is the med, maturation, or a combination of both. Unfortunately, intuniv has not helped him at all with attention span. He is not hyperactive by any means, but his ability to attend to any task for a sustained amount of time is very poor. It is amazing how meds affect each child in such different ways. You just have to work with a really good doctor to find what works best for your child. You may want to talk to your pdoc about Strattera. It is a non-stimulant used for ADD/ADHD. DD5 was so irritable when she was on Methylin and Adderall. They were a very obvious, poor match for her. We tried Strattera and it was a God send. She is doing great on it. Every kid is very different, but it does work different from the stimulant options. Just throwing that out there.....:D Sometimes there are coupons at the websites that correspond to the drugs. Strattera has a coupon for a free months trial right now. You would just need the script from the dr. Quote Link to comment Share on other sites More sharing options...
houseofkids&pets Posted March 10, 2012 Share Posted March 10, 2012 Thanks for the info on strattera. I have heard of it, but wasn't sure about making a change from Intuniv since ds has not had a bad reaction to it like the other meds we tried in the past. It just isn't helping him in school when it comes to paying attention and completing tasks (he is in ps). I am happy that it seems to help him control his outbursts to a certain degree. He still can become aggressive, but it is just not as intense and doesn't seem to last as long. I'm glad that you mentioned a coupon for Strattera. To piggyback on that, I wanted to let other parents know that it is a good idea to get on an email mailing list from the drug company that you are using. When we signed up, Intuniv gave us one month free. Now that ds has been using it for a year, we just got a discount for a reduced fee for the next 12 months. Our monthly cost went from $70 to $15. That really helps financially. I am not sure about other drug companies, but it is worth a try!! Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 11, 2012 Share Posted March 11, 2012 Just a warning on Strattera.....SOME (and certainly not all) kids have an increase in mood issues, rages, etc. My son tried it for ADD (no hyperactivity) and he became physically and verbally aggressive and he never was before. My daughter (both are adopted so not bio related) tried it and became extremely irritable and had terrible moods. Our psychiatrist said that she finds that it doesn't tend to work well for kids with mood issues. Of course, your mileage might vary but just wanted to warn you that it is known to trigger anger/aggression in some kids. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.