I want to first of all say Thank You to all the parents here on the Autism boards. I am very new to these boards as this is my first posting. And Im still reading! Please forgive the many questions I may ask. I ask only out of desire to help and be nothing more than a great advocate for those whom are unable to manage their own health care. Sometimes I believe that no one can teach me better than a parent or one who knows first hand. Textbooks are only full of hard facts. I want the human side too!
I must say comming from a long term care background to one dealing with so called mental health. All the parents I come in contact with are so awsome! Im trying so hard to learn and understand only to benefit those I care for and have come to love as my own family.
Let me give you a bit of my history in hopes that none of you feel I am intruding or speaking out of line.
I am a LPN working in a residential setting with young adults, (25yrs - 38yrs) who are all Autistic with the MR component diagnosis. The majority of those who live with us, (yes, live with us as we are all part of a family), also have or have had major behavioral issues.
Without going too far ahead I was questioning the relationship between Risperdal and weight gain. We have a few of our guys on anywhere from 1mg - 4 mgs, two - three times a day. We, as we age, know that weight gain is a common problem. This is one issue as their primary nurse and advocate I am concerned with. The blame for weight gain has always seemed to be placed on Zyprexa or diet.
Can anyone direct me to anything medical showing the connection between weight gain and use of Risperdal?
I am on a mission for medication reductions but I need to find good sources to back me up(medical). Any help would be appreciated.
I have only been in this feild for 1 1/2 years and I am learning every day!
Check out AUTISM RESEARCH REVIEW INTERNATIONAL newletter Vol.15, No.4, 2001, put out by the Autism Research Institute (www.ari.com) and their article on RISPERIDONE and weight gain. It references Journal of Child and Adolescent Psychopharmacology, Vol. 11, No.3 Fall 2001 "Weight gain in a controlled study of risperidone in children, adolescents and adults with mental retardation and autism." (average weight gain approximately 18 lbs per year; it affects their metabolism). This study was conducted by: J.A. Hellings, et al at: Dept of Psychiatry and Behavioral Sciences, University of Kansas Medical Center, Kansas City, KS 66160.
Also, for GF/CF/SF (soy-free) diet info, a good resource is William Shaw, PhD. book "Bioliogical Treatments for Autism and PDD" revised 2002 edition. My daughter really made more noticable gains once I took soy out of her diet, as well as casein and gluten. According to Dr. Shaw "soy has been shown to produce biologically active peptides." I would recommend this book above all others to read for parents and caretakes of our special children. I also noticed my daughter becomes hyperactive on corn products. After going GF/CF, her appetitie for soy and corn containing foods increased so much that she was on a weight-gaining slide. It seems to me that she was getting her opioid fix through the soy proteins - Panda Puffs contain vitamin E derived from soy. I know when something has slipped up in her diet because she then has difficulty sleeping that night. By far the most significant gain we saw in our autistic daughter (age 6) was when we introduced digestive enzymes. I read somewhere that a recent study done by the Mayo clinic revealed digestive enzyme deficiency in autistic patients.
Note: My daughter is NOT on Risperidone, but my younger sister was put on it two years ago and has gained an ENORMOUS amount of weight, thus negatively impacting the effectiveness of her seizure meds.
Hello parents! I am not a parent of autisum but I do have 10 years experince dealing with severly developmently disabled people.I work with children and adults alike (Behaviorial Intervention). Alot of the adults have not recived any form of behavorial intervention during there childhood. (Or at least the right one to benifit there particular needs). Alot of these methods have recently came available to the public, and even now there are not easy to find out about. The point I am making is that all you parents who's kids are on some form of OCD or other behavior medication there is other methods of controlling and even elimanitating your childs behavior. Now, the statics of an autistic person (in there earlier years) receving behaviorial intervention vs one that is just on medication, is the kids that receive beh. inter. at early ages are most likley to not drive there parents bannas. Giving them outs like deep stimluation,music,newsparpers,etc... Stuff that would keep there minds focused. I would get involved in the school and get behaviorial intervention. There are outside vendors that specialize in beh. inter.(outside school district) I know for a fact that if you live in L.A there are at least 20 I can think of off the top of my head.Since you live in canada I dont know the rescorces that are currently avaible there. Anyways my heart goes out to all of you... You deserve metals and a cruise to a far off land!! It is never easy, and dont forget to take a vacation. (YEA RIGHT!!!)In conclusion, call your school district psych. and ask questions, alot of them, these services might be avaible to you and you children, (through your local regional center).Depending on where you live Metro-vs-Country. (The bigger your city the more likely your chances are of reveiving these kind of services. Thank you! Good luck all you angles of angles.. GOD BLESS ALL OF YOU!
[This message has been edited by BUSDDTT (edited 01-30-2002).]
Hello, I am new a new member and was just reading your questions to risperdal. My son just this year was put on the medication and has also gained weight. His doctor says he is just in a growing stage, however he never gained this much in such a short time. He is 9 years old and use to take .25mg twice a day until about four or five days later he developed a rash and we had to stop. He has always had behavior problems and until 3 years ago I had no idea he was autistic. He was 2 years old when I had him tested for hearing loss due to the point he acted deaf IE no speaking, pointing to what he wanted, no reactions to dropping pans. Well when he was 6 his hearing had improved itself (corrected) but he was still acting like he was deaf and he was still violent. I did some research and found where I could take him for testing, Yes he is autistic, said the doctor, and how my life and sons have changed. I use corrective behavior and time outs and picture cards. It was the summer of 99 that he went into regresstion and all the work I have done went out the window. The summerschool did the altimate NO-NO, when he got mad the did the escort and hold down. In a sensory situation my son cannot be touched it only adds to his anger. Anyway right now he is on .25mg in the morning, I have been giving him liquid super vitamin and GFCF diet just started, so far I am likeing the improvements.
I hate the medicine because he still has a rash, he looks off in the distance with a glare at times (never did before) and wets his bed all the time. Yes I blame the medicine , Why because I never had this problem until the medicine.
We also take walks and name critter tracks as we see them, I use to take him to a local mall (only one he can tolerate), not now.
Hi. I am new to this board. I was hoping you might give me some feedback about respiridal and young children! My three and a half year old is about to start this drug and I am a bit nervous about side effects! He is extremely violent and aggressive. Yesterday he bit my hand so hard I had to go to the hospital as I thought there was something broken. I want his behaviour to change but nothing has worked so far and I am willing to try a drug. Any advice would be helpful.
Hi, my son has been on risperidal for two years. It slows his response time down just a hair so he can make a choice- like rage or hide in his blanket but of coarse he is old enough to make those choices- 11 yesterday. I will tell you that it made my son hungry-insatiable-like he could easily eat five hamburgers and 5 or 6 cups of rice, 5 or six bananas and be screaming that he was hungry- even delayed bedtime. What worked for us was to combine risperdal doses with ritilin doses because the ritilin supresses hunger and appetite. One other thing doctors forgot to tell me, it can cause sterility especially if taken after puberty sets in. Good Luck Mary
My son started risperdal when he was three. He is now six and we took him off of it a few months ago. At that time, he weighed 83 pounds and was taking 0.5 mg 4 times a day. In addition to that, Clonidine. We recently added Depokote and substituted Seroquel for Risperdal. The Dr. was afraid he would soon develop tics on Risperdal and Seroquel is basically the same, but less chance of developing tics. He seems to do better now. When he first started, he just got risperdal. When Clonidine was added, the behaviors were much better. If he has been on risperdal a long time, he might have developed an immunity to it. Then they can wean him off or substitute Seroquel. That happened to my son twice on it. He was very severe, but now the dx was changed from Classic Autism/MR to PDD/ADHD. He does sleep thru the night now and he does not have as many episodes of SIB.
Thanks for your replies. Did any of you notice immediate changes in your child's behaviour? Keenan has taken risperdal for two nights now. They said to take before bed time as it is a sedative - well he was still wide awake a good four hours later! I feel guilty for putting him on drigs yet relieved to maybe have some calm. This morning at kindergarten he transitioned much easier than last weak. Still some tantrums but less intense. Is this the sort of thing you noticed? I am watching him like a hawk for that 'miracle' transformation. Thanks again.
Keenan was also prescribed risperdal for his violent/aggressive behaviour but we were told that it will make him drowsy and that he would sleep better than he is!
Today we had to leave the shopping centre as he was yelling and screaming, flailing his arms and looking to hit, throw, or hurt something/someone. It got too much for my husband, other kids and I so we left. I also felt very put down by the way people were looking at us as if he was a child who was naughty. Sometimes I feel like giving him to them for just one hour!
It's good to know his talking may pick up and his aggression may tone down. I have been waiting for that day since he was old enough to crawl!
Any other behaviour management techniques that are out of the ordinary would be appreciated!
Risperedal did make Jay groggy too- but it also made him so hungry that the hunger kept him awake alot of times. Zrytec really knocks Jay out cold but he wets more frequently when sleeping with it.
Before Jay started the GFCF and Corn free diet- he had tremendous ups and downs- noises, bouncing, aggressive and psychotic behaviors, at times he was an eight year old funtioning at a two year old level- and for behavior management what worked for me was to look at the behaviors and respond to the age level of the behaviors- his auditory processing seemed to go hand in hand with behavior level- so when he was a 'two year old' I would step back and remember with my other child how to manage 2 year old behaviors( ie two years =2 word directions)- for instance there were days when I would spend hours with him on the living room area rug-(defined boundry) doing legos or puzzles- with constant prompts to stay "on the rug"- put the "puzzle pieces together"(rather than throw them) when he was like this he could not communicate his physical needs verbally at all or control his impulses anymore than a two year old could and had I spoke to him and had expectations for him beyond a two year level he became aggressive (a protective barrier for what he could not handle)- In order to reduce the aggression in him I had to make a concious decission to respond differently and remember that the aggression was a form of communication from him that he was overwhelmed or over-stimmulated or scared. And for our family- coming to understand that all of his heel stomping, hand thomping, hooting and howling was not acting-out passive aggressive behavior but a physical need to feed neuro-receptors was a huge puzzle piece to understanding him. Once we stopped giving him negative feed back for those behaviors and ignoring them when they couldn't be redirected outside or to a mini-trampoline---- it signifcantly reduced his level of aggression. And I sat down with him and told him that I would never ever spank or restrain him ever again- and that he would have to promise to never ever hurt himself or anyone else.(I had been encouraged by the school and doctors to restrain unacceptable behaviors-that that was good parental love) He added that I needed to not yell loudly- (noise sensitive)- I aggreed and really emphasized that we needed to trust one another and that our home was a safe place for him (and us)
- we removed all the toys from his sleeping area keeping them in a seperate room leaving only a handful of stuffed animals and books which I changed regularly. The best ever descalation tool for Jay was that he could calmly listen to me read for hours!
Over the coarse of the months that he was home-(the public school refused to allow him to return because of aggression which was really a good thing scince they had been restraining him regualarly in school as well) - I reminded him daily of our pact- and reminded him he could rip up paper( a supply was also in his room) or punch a pillow or kick his mattress. By the time he returned to school I had broke the cylce of restraint- Jay had been restraint free and manageing his anger/fustration independently by rolling up in a blanket and wedging under his mattress. Its taken me two years scince then and great deal of advocacy on my part to help the school realize that they were facilitating his aggression in school by failing to identify his delays and disabilities as well as failing to provide educational materials at his cognitive level which is very high-above his age level in the scientific and math realm- this year he has a one-on-one and types instead of writes (writing tested below kindergarten at age 10 1/2! - up until september the teachers kept saying we know he can write he just doesn't want to- he had 33 restraints last year all preceding or during writing assignments-they said well he's too emotionally disturbed and won't let himself try to do something hard and challenging like writing ) - he had no restraints this quarter and only 2 at the begining of the year! and scince he no longer monopolizes his day in restraints trying to communicate that he cant write- he has actually grown from a first grade reading level to a third in 6 months! And is getting A's on 20 4-8 letter spelling word tests! My experiences with my son really lead me to believe that aggression is trully a cry for help- that in some way our expectations or communication is above their current level of functioning or triping their hyper-sensitive nerves in ways we sometimes don't understand. Aggression is their safty sheild. Sometimes just people in a store or church looking at Jay exhausted and overstimulated him.
You have some excellent advice. As Keenan is only 3 and 1/2 it is difficult to speak less precisely than we already do. We speak in one or two word directives but sometimes he still doesn't get it. What I find difficult is when he is having an aggressive day - I can't seem to work out what the problem is! I know he doesn't like overwhelming crowds and lots of noise stimulation but sometimes he goes off for seemingly no reason! He had an assessment the other day which has put him social/emotionally at one year three months. He scored better in other areas but I don't think past two years four months. I will get the whole report tomorrow. I guess I need to realise that at times he is a 'one year old' and understand that one year olds don't have a huge comprehension of the english language or social norms.
My heart goes out to you- that was indeed one of the roughest age levels with Jay- I remember an old lady in our church leaning foward at a christmas mass, roughly grabbing his shoulder and shoving him in his seat at 3! I didn't know her at all, we'd been attending that church for over a year, it took a lot of prayer and grace to get past that and I opened a daycare room in the rectory for parents until Jay was five- when he really started to hurt some of the younger children who invaded his personal space.
My daughter was attending our church's catholic school and I ran my own daycare 24/7 on the same block- when Jay turned four I had enrolled him their pre-k he made it less than a day before he climbed on a table and started throwing chairs at the teacher(they hate that) the nun/principal said as she permanently dissmissed him from the program that I needed to discipline him more-
he looked physically normal and actually had a scientific vocabulary beyond his years but the key is pragmatic language skill- before the CFGF diet- just asking Jay if something made him mad (that happened a day or two ago and resulted in aggressive behaviors) would instantly regress him- he suddenly started baby talking, bouncing and wet himself and he did this every single time he had to process a situation emotionally! He couldnt say I am hungry, cold, scared or need help tying my shoes or picking my clothes- the behavior was identical for all of them- hooting howling bouncing off the walls! Wow did things get easier when I finally started trying to guess what he needed and remember to start guessing as soon as he started bouncing -he was a little tazmanian until I guessed right- then a light switch he calmed down! It became clear to me that obviously that part of the brain that processed emotions was severly delayed, our occupational therapist also explained that the brain can not develop emotionally beyond the developmental level of the nerves because it needs feed back from the nerves to learn the emotional/developmental lessons it needs to progress through each age stage.
It was literally like a light switch on/off with Jay if I started to read to him he instantly calmed down,relaxed and focused for hours on end- I was always the one who tired of reading long before he tired of listening and I made sure to read books at his physical/age level because for him that part of his brain was well developed.
It was around four that I saw a picture list of autistic behaviors and remember I have a second cousin who doesnt live around here with autism on my mom's side and an uncle on my dads side as well. Jay did more that half of the behaviors on this flyer and I for the first time realized it might be more than ADHD and maybe not Oppositional Defiant Disorder which local mental health had already written him off as.
The key I have found to decifering the difference is that Jay never picked on children or bullied them- though if a child looked at him intensely or killed an insect(he cherished insects at that age) he attacked them like a bull and as he grew there became a huge difference between his IQ and his grade level skills and there was a 10 point difference between his verbal and nonverbal skills- in first grade his speech was untestable-even though I had told the school district at age 4 I suspected autism they clung to the oppositional defiance diagnosis, ignoring the diagnosis of PDD/NOS with autistic like symptoms from two doctors! I knew it was the autism that prevented him from participating in school and that there was something very wrong with his writing/reading. The school said any child who could draw the way Jay can draw (we are all artist in my family) and manipulate legos did not have fine motor issues and ignored requests for occupational evaluations for three years until I called our state reps! I discovered while Jay spent those two months at home that he could not at age 8 even write the alphabet- instant regression! But he could easily put index card words in alphabetical order, I discovered that he could not "LOOOSELY" hold a pool stick- his grasp was very rigid and that he could not easily, quickly or gracefully tap his fingers on one hand with his thumb!
But back to age three- I got looks every where we went and I could not ever let go of his hand he ran away - into street -into stock area of stores, wandered away at a state park, constantly hid in places at the mall, could easily escape any shopping cart or those restraint-strap child safty leashes! His wardrobe consisited of all neon clothes and I always needed to remember what he was wearing! I had to nail our windows shut, baby gate the kitchen until he was five! Even so he snuck in and in moments put a salt packet and sugar packet from mc'donalds on the electric burner I had just shut off and then ran to get me to show me how the sugar sparked and burned but the salt didn't. When head start did stop drop and roll when your on fire -he processed that to mean when the cores of the electric space heater in the bathroom turned orange as they did each time it turned on that he should wrap and roll it in a towel! Yes he climbed a baby gate and snuck in the bath room upstairs alone then came down quietly. When the house filled up with smoke I said Jay were you in the bathroom, he nodded saying he had to go potty. He was fine but I got smoke inhallation/amnemonia trying to open windows.
He escaped from countless liscensed daycares- kicked out of several. Even at one and a half when I would pick him up the teachers held him out to me and said TAKE him home- (as nicely as they could muster) after he spent each afternoon crawling up the 4 foot little tykes climber and constantly free falling because he knew they would catch him- (in the late afternoon when they combined all the ages for that last hour of pick-up times) By two he was covered with bruises so often that when we had moved to a nearby community and switched doctor offices the doctor(who didn't know me well enough to know I would never abuse my children) hotlined me for neglect saying she thought I was letting my older daughter play too roughly with him! What a joke- I sent them to talk to the daycare! They never called me back and dismissed the whole thing. Because of that though- I insisted on a "preventative social-worker" for the next 8 years so that as issues and crisis' came up there would have been some one in the home often enough to verify that we were doing the best we could parenting- this was so helpful when he needed to be hospitalized each of the three times for behaviors-( behaviors for abuse look alot like behaviors for high-functioning autism). The workers- I've had about six, were always trying to close the case and I would say no- not until we went a year without crisis and we never did until Jay began the gfcf diet! Sorry this is so long -i share so much hoping that maybe hindsight can help another family ease through these stages - I had no support back then, no one new what pdd was or high-functioning autism and I constantly looked at my older daughter and would say quietly to my best friend- I don't understand, I did it right the first time-thank god she came first, what am I doing wrong. I had to get past that stage, gain enough confidence in what I suspected my son had to advocate for the right diagnosis and educational plan. Reading some of Temple Grandin's work(an adult autistic who teaches at Colorado University) helped me so much- she said people need to understand autism isnt a disability -it is a different culture of people and should be respected as such. I realized I, the school and counsellors had been trying to cure/fix/change my son instead of lovingly accepting and embrassing all that he is. -Mary
Hi Dgeorg, its me again, as I re-read your last post- I remember feeling so cornored when Jay was that age right up until this year. But it was at its worst when he was 3 until he started the diet weeks before he turned 8. I couldn't take him grocery shopping and I couldn't leave him with anyone- no one would agree to watch him! I couldn't make any evening plans, I couldn't and sometimes still can't attend my jr high daughters evening school programs, he can't do afterschool or use daycare programs, and I often got called from work to come and get him because he was having trouble in school, even was written up two years in a row at work. And before zyrtec he never slept more than 4 hours a day I had no time -zero for sanity, my blood pressure was through the roof! And I remember thinking even though I was in my early thirties -no body told me I would have to give up my ENTIRE life- every waking moment to raise this child, I clung to my job desperately for an ounce of sanity but eventually gave it up for several years. Now I have a wonderful supportive stay at home partner/father figure who picks up the slack with the school so I can work. Jay went on every 'date' we had until we moved in together. I have even started demonstrating stampin' up rubber stamps (like tuperware parties which gets me socializing out of the house once or twice a month and my daughter graciously allows him to rollerskate with her for the occassional evening party that I demonstrate. But I surely felt as if I was suffocating for a long time back then, even before three, just before he turned one I had to start sleeping with him because shortly after he learned how to jump out of the high chair, he hung his sleeper on the crib the first time he firgured out how to climb out of it - I put him back in and listened by the door and he immediately started to do it again, I took the crib down, put up a baby gate and he was over it immediately, I put up two babygates and he pulled all five draws of his dresser open like stairs and was jumping on top. I gave up, dragged my mattress in on the floor and just slept with him until he was six(when my boyfriend moved in) It was just as well because he continued to wake up every 2 to 4 hours until he was four all night long.
I remember trips to the mall! I was so afraid the security gaurds were going to post wanted posters of my 2-3 year old up everywhere because they had been called so many times to look for him when he would escape and hide. I let go of his hand long enough to pay at a local produce stand and turned to find him on a fork-loading tractor reaching for the key to turn it! I always looked sooooo incompetent and I really am not! I am actually a preschool teaching assistant who specializes in children with special needs (I had the best teacher!) Ok well bye for now Mary
Risperdal never made my son the least bit sleepy, but meds effect him differently.The clonidine is usually prescribed for blood pressure problems.It does sedate him, but if you take the risperdal or seroquel away, clonidine will not work by itself. Atleast not for Bay.
It did make him eat like crazy also!The Seroquel does not make him eat more.
When you had to leave the shopping center,he he might have been overstimulated from the lights and/or people.Those people that stare are all over. I am really bold and just ask them if they have ever heard of autism.
Have you tried reinforcing the good behavior and ignoring the bad?
There is a wonderful book out that I used in combination with my own home program. I changed it around a little, but this was a good program. It is called Behavioral Intervention for Young Children with Autism by Kathrine Morris I believe. I have loaned my book to someone.
I too had to nail our windows shut when, at two and a half, he climbed out his window. It scared me to death, but not him. He wasn't scared of anything!
I also had a baby gate in the kitchen doorway. He had a thing about the kitchen big time!I also removed all of the burner knobs.
Mary, you are the first one that I have found that has a child so similar to mine that it is scary! She is giving you real good advice Donna!
My son has many,many scars and used to have so many bruises that I was really concerned that someone would turn us in. It was just from him walking off the dining room table and breaking out windows. I've never laid a hand on him, but someone who does not know me and the situation would probably swear I did!
My son has been on both zyrtec and claritan.
" he pulled all five draws of his dresser open like stairs and was jumping on top." My son to a tee!It is nice to know there is a child like mine. I tell everyone he is not your textbook case of autism.