There is a very long story but to make it for short...Payne will be 7 next week, he is dx PDD, bipolar, epileptic, ADHD, intermittent explosive disorder & migraines. He started taking the risperdal about 4-5 years ago. The doctors, school & I tried beh. modification tech. and it didn't help. Payne was big for his age, he would become frustrated or just for no reason (apparent) he would lash out at who ever was close enough for him "to get a piece of". His doctor has tried clonidine by itself to help the impulsiveness. We did try the natural way at first, but it was quite apparent to EVERYONE that it wasn't working at all! We were hesitant, but within a week we saw a HUGE difference so we were gung ho after that. I trusted his dr - that was the most important thing to me...that he would listen to what I was saying and he would react by asking me how I wanted to continue. He is more passive with the risperdal, he still has moments (when he's sick, schedule changes, etc) where he can lean towards regression, but no where CLOSE to where he was. He is verbal...he was delayed start, but he has gotten more vocal. He has not been in ST...we're working on that right now...long story on why not. He is very repetitive, scripting...It has helped his social skills quite a bit. He is in a inclusional spec ed class, but does mainstream for certain things...Payne gets very anxious in new situations...he has begun to learn some transitioning skills so he does ok for the most part. He is just not mature enough to be with his peers - he prefers younger children. Need more? Just ask.
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116 USA
The parents of autistic children represent a vast and important reservoir of information on the benefits-and adverse effects- of the large variety of drugs and other interventions that have been tried with their children. Since 1967 the Autism Research Institute has been collecting parent ratings of the usefulness of the many interventions tried on their autistic children.
The following data have been collected from the more than 25,500 parents who have completed our questionnaires designed to collect such information. For the purposes of the present table, the parents responses on a six-point scale have been combined into three categories: “made worse” (ratings 1 and 2), “no effect” (ratings 3 and 4), and “made better” (ratings 5 and 6). The “Better:Worse” column gives the number of children who “Got Better” for each one who “Got Worse.”
There are three sections: Drugs, Biomedical/Non-Drug/Supplements, and Special Diets. Download a one-page Adobe (.pdf) file containing all three sections.
Note: For seizure drugs: The first line shows the drug’s behavioral effects; the second line shows
the drug's effects on seizures.
A. “Worse” refers only to worse behavior. Drugs, but not nutrients, typically also cause physical problems if used long-term.
B. No. of cases is cumulative over several decades, so does not reflect current usage levels (e.g., Haldol is now seldom used).
C. Antifungal drugs and chelation are used selectively, where evidence indicates they are needed.
D. Seizure drugs: top line behavior effects, bottom line effects on seizures.
E. Calcium effects are not due to dairy-free diet; statistics are similar for milk drinkers and non-milk drinkers.
It's been a long time since I saw this stat, so I can't give the source, but if you google Risperdal you may find it. When my son started in Risperdal for Tourette's tics back 8 years ago, the question was asked of clinicians what they saw in their practices vis a vis Risperdal. The response was that over 80% of the ASD kids on Risperdal improved significantly. I seem to remember they were mainly looking at aggresson or self-injury. Risperdal is the only drug approved SPECIFICALLY for use with ASD kids because there has been such success. Even the 54% number is amazingly high. The biggest and most immediate side-effect is significant weight gain in the vast majority of patients. However, no one gets kicked out of school for being fat. Risperdal not only took care of my son's severe tics, but it got him back on track when the hormones present at puberty made him very aggressive.
I have one word of caution, though. Your son is LITTLE. If there has not been a FUnctional Behavioral Assessment done and a positive Behavior Intervention Plan put in place, I'd do that FIRST, before any drugs are tried. Call an IEP meeting and ask for a BCBA.
To Payne's mom:
Thanks for responding. I'd like to know a little more about Payne, if you would be willing. The reason for my questions are because I've read many negative things from other forums - basically forums that are pro natural biological treatments. How old is he today? How old was he when he began the medication? What was it about Payne that convinced you to begin medication? Did you try other meds as well? Did you try alternative forms of treatment like fish oil and/or other supplements? What about side effects with using risperdal: Has he become passive? Did you see a decrease in his verbal abilities? Is he verbal? How long did it take for the risperdal to kick in? What kind of educational setting is he in (regular/special ed)? I could go on and on with more questions - would love if you could share as much as possible. Thanks so.
You stay at the dose that works until it starts to dull then you SLOWLY go up. Payne has been as high as 10mg in a day and as low as 1 mg in a day - constant up/down for him, but he has multiple things going on w/ him - not just aggression.Edan
I have a question once the risperdol levels off what comes next do they stay on that dose if it continues to be successful or do you eventually have to up it to the next dose. Do you know if they have to always be on this or can they be taken off eventually.
Edan and Tzoya
Thank you for the information. I ll tell you a little about my son Joey is 61/2 yrs. He was dx PDD?ADHD at 3 yrs total hit because I am a Spec Ed Tchr and thought I just failed my son and life didnt even really start for him yet. I was home his 1st yr but never saw any signs in the stages of his growth the only ? I had to every one was that he was 10lbs 22in long at birth and I am a small person. But no one thought of that as odd. So after he turned 1 I went back to work and worked school and summer school till he was 2 1/2 and I was preg on my 2nd child. When I noticed that his social skills were poor and transitioning was very very hard I knew something was wrong and language was practically nothing by now. So that's when I went to take him to Children's Specialized Hosp in NJ( live in nj) and from there you all know the rest. He has been on 3 diff meds he started with Metadate CD at 3 yrs that lasted about one yr then went to Adderall XR that lasted about 1 yr and a half then to Concerta where he started at 15mg because of his weight , then to 36mg then to 54mg where the doc said he would not up it anymore and thats why we started the risperdol at night.
Im hoping that this will help him Ill let you know its only been 4 days so far.
Nicole0805
The way our son's psychiatrist works it is that when we're in the processing of adjusting a med (either starting a new one or if my son has had a growth spurt or some other reason that we have to made adjustments) he has me keep very close track of anything I observe for 3 weeks. If, at the end of those 3 weeks I've seen an improvement but there are still symptoms that have not yet gone away, he raises the dose a bit. Then we do the same thing for another 3 weeks. We only stop raising the dose when the symptoms disappear or when we're getting to the dosage limit. Our psychiatrist will not give more than 6 mg of Risperdal to anyone (at least not anyone who is not hospitalized in full breakdown). Using this method, it can take many months to get to the optimal dose. But then what you have is a true optimal dose that is as low as is effective but high enough to take care of the symptoms completely. The last time we had to raise my son's Risperdal was during the throes of puberty and it took over a year to get from 4 mg. to 6 mg. We also added Buspar and Tenex, which took care of some of the anxiety and hyperness, so that we didn't need to raise the Risperdal further. This has worked GREAT for us.Hi Tzoya, Nicole and Tricia,
We did tell the doctor (professor of child neurology) that recommended trying rispidol about our giving Omega 3 (fish oil) and the vitamin e supplement, but he did not say that it can negatively impact the effectiveness of rispidol. The DAN doctor we went to recommended putting him on ritilin (only if we insisted) in addition to all his other more naturalistic recommendations (and expensive testing!!) and also did not say anything about the negative impact. As far as I can remember they both said that giving Omega 3 can certainly NOT hurt. Now, I'm confused. I sure wish there was one clear answer, but just like anything else in life, that's not the way things work! Does anyone have a suggestion who I can contact via e-mail/forum to ask that perhaps would absolutely know whether or not to give the rispidol + vit. e with the rispidol?
I am in a support group and also have bi-weekly sessions with the psychologist at the treatment center which we go to with our son 2x mornings a week - that helps tons. Also, my husband and I support each other, thank Gd.
Hang in there everybody - your personal stories and insights are evidence to how strong you all are! And all of your messages continue to give me strength and hope.
Edan
p.s. Tzoya: how's your cheek????
ANY supplements for ANY reason can interact negatively with ANY meds. Doctors always ask patients to list other meds they take but often forget to ask about supplements. Please, anyone who is giving their child ANYTHING besides water (even vitamins) TELL THE DOCTOR before you try the meds.
My son has SEVERE Tourette's and even a teeny weeny dose of a stimulant will cause the tics to go through the roof. For him, Strattera was even worse. After two days on it, his tics were SO bad, it looked like he was going through a full-blown seizure except that you could interrupt his ticking and jerking on the floor, talk to him, and then he would go back into ticking. It took over a YEAR of slowly upping his other meds to make these SEVERE tics go away. If a child on Strattera is exhibiting ANY additional aggression (this is not uncommon) or any tics whatsoever, give the doc an EMERGENCY call.
I got a review lesson in how important Risperdal is for my son yesterday. I let him sleep much later than usual, which meant he missed his 7:30 a.m. dose of Risperdal. He woke at 11, just in time for his 11 a.m. dose. If he EVER misses a morning dose (which is VERY rare), I remember to catch up quickly because the accumulation of meds is key for him. Well, I forgot. By 4 p.m., we were getting into an argument and I was in his face yelling at him -- often a useful technique these days since he HATES noise. Instead of looking sheepish and promising to do better, which is his usual mode, he backhanded me in the cheekbone. HARD. I think he was as shocked as I was. I stormed out of the house and drove around the block to calm down. He has not shown a single aggressive tendency for YEARS. That's when I realized I was stressing him out bigtime WITHOUT enough Risperdal in his system. I felt awful (and sore, too). I immediately went home and "caught up" on the meds. I had started toying with the idea of reducing the Risperdal to curb his voracious appetite, but now I know that's taking my life into my hands. He's 6'2" and still growing (at 16, he doesn't even have peachfuzz yet), so he's still in the throes of advancing puberty) and is MUSCULAR. Risperdal has literally saved my life.
We did go to a DAN doctor an hour from here and he was very reasonable....but after a few years our consultant encouraged us to try a more progressive one and it was a huge mistake! We finally got an appointment with him and ended up with ,500 in tests (of course not covered by insurance), my son had like 25 vials of blood drawn, another 0 for the appointment, and 0 in supplements. Lesson learned....we should have stayed with the first guy! We also found out once John went on mainstream meds that the supplements from the DAN doctor can lower the effectiveness of the meds.Payne's Mom
Im sorry thank you for all your insight . I can see that you have had an up hill battle too. I hope all goes well Im sure it will You sound like a very strong person.
Nicole
We have been through a lot of dx and rx. Started w/ seizures (febrile), ADHD, seizures again (complex partial), bipolar, intermittent explosive disorder, PDD, migraines, autism...meds lets see ... focalin, ritalin, strattera, concerta, clonidine, risperdal , topamax, lamictal, phenergan, abilify, trileptal - and a few more that I can't remember now - we've been going through this since Payne was about a year old...he's 7 now. Things seem to be looking up at the moment, but that can change in the blink of an eye. I hope all is going well for everyone that goes through this everyday...but as we all know when one of us is up another is not...so we have to help them too.To ANyone who can help
I have a student who is PDD very very bright above grade level. He is in a self contained class due to behaviors along with PDD dx with OCD, severe ADHD and I think since talking to you all that Tourettes may be coming thru. He is on Straterra I think they upt him to 20-30 mgs . We have noticed aggression showing more often over very small situations and he seems to be developing ticks-small jerky muscle movements in his face. Have you heard of such things that can develop?
Nicole
Yes, people w/ tics sometimes have that reaction to stimulants at higher doses.John would pinch and grab people when he was frustrated or upset. On occasion he would try and bite. We used DRI and DRO behavior interventions....that is differential reinforcement of incompatible behaviors (you can't pinch if you have safe hands) and differential reinforcment of other behaviors (similiar to above example). We srote social stories and taught him the word or phrase he needed to express that emotion ("I'm mad") John is not overly verbal......up until about 18 months ago we only got one word at a time....now we can "wait" and get up to 5-6 in a sentence. We catch him early enough in his frustration before he has a huge blowout. We started the risperdol because he was changing classes and schools and staff a few years ago when he entered the school system. We knew we could manage him behaviorally for the most part (very skilled people could) but the new school had no clue about autism so we opted to augment with the meds. The only side effect we have had with the risperdol is the weight gain. We monitor his food very carefully, and he has only gained about 8 lbs in the last 2 years.....however....he did get the "med" belly that so many of the kids seem to get. Hopefully, the weather will break here and he can get outside more. I can't say it enough......meds without the behavioral piece are useless. Our kids need to learn the coping skills.
To Tricia:
What kind of behaviors did/does John display that led you to use behavioral intervention? What kind of behavioral intervention do you use and specifically for what behaviors? Has/does John experience side effects with using Risperdol?
Thanks for responding!
edan
[/QUOTE]
Dear Edan
We have tried alternate ways to help my son one was chiropractic and he just wigged out I wasnt too crazy about that. The other was changing the diet we tried ther gluten free diet which eliminated everything he likes and he seemed to gain more weight when on it so we stopped. Believe me I am not a pill pushing mom that says okay he takes a med thats it. We work really hard with helping him at home trying to get him to be more independent that the dox suggests will help, control any video games or computer time, we have a schedule absic one he knows how things will run once we are all home from school. In school I fight every day to make sure they are doing they best to help him. Its a long day by day process to see any results and believe me I get very very frustrated I also have a 3 1/2 boy and a 1yr old girl too so my husband and I try our best sometimes it doesnt seem enough or that we are getting frustrated and it shows to the kids but we try. It helps when you can talk to others even if they dont come fromt he same home life sometimes you have to unload on an outside source to feel better. Talk anytime .
Nicole
Wow! I am amazed at what you all have been through. We did not even consider asking about chemically based meds until recently, even though our son was displaying PDD as well as ADHD symptoms, but this last year we tried some different more natural interventions, but they didn't seem too effective. We also went to a DAN doctor (are you familiar?) who recommended tons of tests (very expensive and not covered by our insurance) and supplements (based on the tests). He prioritized the interventions...the top priority one was giving up all (100%) dairy products (which our son lives on basically) for a month to see the effect. So much energy needed for applying even bits of that doctor's recommendations...we are giving him Omega 3 with a vit. E supplement - that's the only one of his recommendations which we're applying at the moment together with the risperdol. Have any of you sought out naturalistic methods for treatment?
Most of the meds you all listed, I haven't even heard of! We live in Israel, so maybe treatment is different over here. We're going to look more into the behavioral treatment, but it all takes so much time, which is scarce since my husband and I both work...
I can certainly relate to the humbling experience of being a "professional" in the field. I am an SLP with very little experience with kids on the spectrum (I had a personal aversion to these kind of cases...I think someone up there is trying to teach me a few lessons!!). I mostly work with neurological impairments such as CP with a specialty in AAC and assistive technology as well as working with preschool and kindergarden kids who have not yet been dx, but display mostly ADHD and learning disorders symptoms.
I'm really happy that I've been communicating with you all. It sure gives me a lot of support!
Edan
Edan:
My son is a 4-1/2 year old boy diagnosed with PDD-NOS. Among his other challenges, he has serious attention deficit issues as well as hyperactivity (needs to touch things and me a lot of the time), and physical aggression towards other kids at school. We were told by a child neurologist professor who specializes in cases of ASD to put him on risperdal, starting with 1/2 cc and if there's no improvement after 3-4 weeks to increase the dosage to 1 cc. He said that if needed, ritilin may be added to the risperdal at a later time - maybe in 3 months, when he'll have his follow-up appointment. We began him on the medication two days ago, even though wewere and remain reluctant. We also have him on Omega 3 with a vit. e supplement for over a month now, but have so far seen no changes. I'm interested in hearing from anyone who has had experience with risperdal.
My son is 6 1/2 yrs old. He was diagnosed at 3yrs of age with PDD/ADHD. We recently went to the doctor for issues occurring in school non attentiveness, impulsive, answering back and just not listening. The doctor put him on .25mg of rispodal to start and we are to up it to .5 in a week to help anxiety and frustrations heis having . The doc described it best as my son being a constant motor always runniing and never resting and relaxing. This is suppose to help him at night and make the next day better. My son is fully mainstreamed at the time and doing well academicallly and hopefully wil;l feel more success when we can adjust the anxiety. Edan -- I just came back here and saw your question to me and couldn't remember what you were talking about. My son is SO not aggressive any more that I forgot he got aggressive when I reduced the Risperdal by mistake that day. My cheek was always fine (tho it hurt at first) but I was in shock. It's so great to have my usual, happy cooperative young man around all the time that I forgot how horrible he can be without the med. Thank God for Risperdal. At least in our case. Thanks for asking about me.
My high functioning 5 1/2 year old daughter has been on risperdal for 5 months so far. We just increased her dose from .5 to a full milligram. This medication controls her agression, stimming and has increased her focus. She has gained 8 pounds since we started but we try to keep her active. Before we started the medication her school told us that she was in the wrong program, but now she's doing great.
Lanee
We were told that risperdol begins kicking in at 3 weeks and continues to cause improvement up to 8 weeks where then it levels off. He's been on it for about a week and a half and we seem to think that there's a slight improvement in his aggressive behavior and he seems somewhat calmer in general. I'll keep posting as time goes on...
Edan - I'm glad to hear it...time will tell... we noticed results within 2 weeks. John has been on risperdol for years. We tried the stimulants, but he had several side effects. The risperdol works well with him.....but that is in combination with many behavioral things as well.
To Tricia:
What kind of behaviors did/does John display that led you to use behavioral intervention? What kind of behavioral intervention do you use and specifically for what behaviors? Has/does John experience side effects with using Risperdol?
Thanks for responding!
edan
To Nicole 0805:
Please let me know how it goes with the risperdol, since you have just put him on it. So far, my son has been on .5 mg for almost two weeks and even though the doctor said we should see an improvement starting at 3 weeks, we are already feeling a difference: he's more relaxed and not searching as intensely for sensory imput at least at home.
Thanks for responding,
edan
To Payne's mom and Tzoya,
Thanks so much for all that info - that helps so much. We are looking into a behavioral program for our son also, but right now we needed to see if a significant change can occur in our son quickly since decisions need to be made soon regarding what educational setting to put him in for the upcoming school year - mainstreaming, special ed or a combination of. I'm also very concerned with all of the negative feedback that he gets for his uncontrollable behavior - his aggression and his attention deficits, thus negatively affecting his self-image. "Undoing" this type of damage may not work! When the kids at his preschool even begin to say "no" to him, he reactions are quite extreme - at least that's what the teachers are reporting. He responds this way to the teachers as well.
Keep responding!
Risperdal is VERY effective with aggression is the vast majority if ASD kids. Aggression IS something that has to be stopped quickly in many cases. Risperdal takes about 3 weeks to fully kick in. IF, after 3 weeks, there is not a significant change, it needs to be raised. At a very low dose, it can even be raised sooner. My son was a large 8yo (80 lbs, tall but lean) when he started and he was on a very low dose (don't remember what) that only got raised to 2.5 mg (they didn't have liquid back then, we crushed the pills and gave it to him in Hi-C) by the time he was 11 and 150 lbs (Risperdal is the cause of weight gain, but fat is better than violent IMHO). At puberty, it was eventually raised to 6 mg, which is still the dose at age 16. 6 mg is the highest dose that most doctors feel comfortable with, but some individuals are on higher doses under certain circumstances.
Ritalin is GREAT for hyperactivity, but many kids on the spectrum are prone to Tourettes. If Tourettes develops (as it did with my son), any stimulant med is out. I'd wait to see if the Risperdal helps the hyperactivity, too. Sometimes it does. Getting the meds right will take several months.
Hi there,
My son Michael was diagnosed in July '06 with PDD, today we went to a Ped Neurologist and he classified him as Classic Autism. Anyway, he suggested Rispideral. Any feedback would be great...what are the long term effects? What does it actually help with? Does if help your child become more verbal? Just recently, he also started head bunting...which is so bad. He currently has ABA therapy 15 hrs a week. We are also thinking about the Gluten Free diet as well. I just feel we shouldn't start everything at once, because we won't know which one if any is helping.
Any knowledge would be greatly appreciated!!!!!!
HI:To Ann and to anyone else who is interested-
I have many questions for you. I'm not familiar with a lot of the terminology you used, perhaps because we don't use the same terminology here in Israel where we live. What is an osteopathic ped? What is a low oxalate diet and GFCF diet? What is focalin? Did you do a lot of testing with them (DAN doctor recommended)? If yes, what?
Someone else writing in this forum mentioned that when taking meds like risperdal, the effectiveness may be lowered when giving any kind of supplements (even vitamins). I consulted with our DAN doctor who's also a child development conventional doctor, who claims that he knows nothing of the sort. What does your osteopathic/DAN doctor have to say re giving meds together with supplements, etc?
Can you decribe your 2 boys a bit? How old are they? Where do they go to school? Major problems, etc. By knowing more info, I may be able to relate to common issues better.
Thanks for responding! Keep it up!
Edan
Hi Edan: