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Jimmy'smom Member  Posts: 38 |
posted 03-06-2002 07:53 PM
  
Hi!My son took Risperdal for more than a year when he was first diagnosed, he started with 1mg and soon went up to 2mg, it helped him a lot, he was able to fall asleep and sleep the night! also hes eye contact improved and he slowed down a bit, he also started to gain weight and was hungry 24/7 and he had a lot of saliva ;At the same time we put him on Depakote for his violent behavior which used to get quite bad when he was frustrated and as you may experience there is a lot of frustration in this kids life;This combination worked great for a long time untill Jimmy started to get shaky hands as a side effect from Risperidal so we switch him to Zyprexa(is very much the same) and later we learned about some cases of Depakote related deths in small children so we switch him to Tegretol which is great for controling behavior and also helps him (and the rest of the family) sleep at night, he keept doing better all the time meking small but steady progress , sayng some loose words, trying really hard to comunicate, following direction, and tamtrums decreased like a miracle;This summer he had a seazure and we got really worried and that could be from the Zyprexa so we took him off ,thinking he was going to regress, but he didnt.As far as OCD we tried paxil, prozac and others but what really works so far is Celexa so right now he is taking it and still taking Tegretol(is good for seazures)and Symmetrel for hyperactivity(this worked like a miracle).I'm happy with his progress and I'm trying really hard not to let those unkind, judgemental and uncompassionet people hurt me at the store, but they have stoped me from going out many times I just hope they never have to walk on our shoes.Good luck to all...Susana IP: Logged |
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Jimmy'smom Member Posts: 38 |
posted 03-07-2002 09:55 AM
28girl, I have had some terrible experiences with people at public places( specialy old ladies is it the same wiyh you?)waiting for a blood test at the hospital was the worse, this sweet looking grandma came up to me and ask me to "take him away someware else ,this is a very sick child"and I said ,that is why he is at the hospital and ha has the same rights than you to be here.well, the people inside heard the comotion and let me go first,I guess it worked out ok after all.My son also loves to undress no matter where we are, and he loves to try on clothes(specially shirts) even if someone else is wearing them he'll start telling them "shirt off" and trying to take it from them,some of my other son's friends dont mind, but stranger kids and their parents dont take it so well, so I try to go out when Jimmy is in school or when I have respite help.Thinking back when I only had my older son(8yr)and would see a kid tantruming half naked at the mall I might have thougt the mother was doing someting wrong,or not doing someting to help the child behavior; nobody knows (professionals, teachers,family members,friends)what it is like and I don't expect them to do so, hopefully people will become more aware of this desabilities and will apriciate what we do for our kids. IP: Logged |
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Jimmy'smom Member Posts: 38 |
posted 03-07-2002 10:29 AM
Bay'sMom,I just read about the Autism cards what a great idea! educating America one person at the time. Do people always take them? Are they thankful? Do they give you an apology? My son recites and sings too from TV , kids movies and some song from the radio but he still very much non-verbal ,in general he will use from one to three word sentenses if prompted.What I love the most is when he takes a seen from a movie and recites it in a real life similar situation . IP: Logged |
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Bay's Mom Junior Member Posts: 15 |
posted 03-07-2002 09:21 PM
Jimmy's Mom, I shove it in their hand. I've never had anyone give it back, although they probably threw it somewhere when I was not looking. I have printed quite a few of them and laminated them. I have probably given out 100 or so since I started doing this three years ago. Only one person ever apologized to me for saying my child needed a good ole fashion spanking. She was an older lady. She really felt bad and I felt bad for her too. Bad that our society can be so cruel and people follow along with what others say instead of making up their own mind and just asking me what is wrong with my child. IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-08-2002 04:46 AM
Just me again! Has anyone had the need to get an I.Q. test for their child - specifically the Weschler preschool scale or the Vineland assessment? If so would you mind giving me info on their 'score' so I can see if Keenan is indicative of other children with his sorts of issues! Thanks in advance. Donna. IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-09-2002 08:23 AM
Dear Bay's mum - I followed up your tip on autism cards with a friend who has an autistic child and she has some. She will send me one and I will follow it up on the computer. She says it has helped her too! A good thing that came out of today with Keenan is that he acknowledged my dad for the very first time. He was holding a chip and said "Grandpa - I have chip". We were all quite amazed - no more than he. He is used to getting a grunt; no reply; or yelled at. When a friend of his touched keenan's stomach playfully he went off though. He was most upset and stomped inside slamming the door behind him. We were so excited at his effort with his grandpa that it didn't matter. Just wanted to share our good news. Thanks. Donna. IP: Logged |
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Bay's Mom Junior Member Posts: 15 |
posted 03-09-2002 03:27 PM
Donna, That is good that your friend has autism cards. It is a great help! It is so great when your child actually acknowledges someone close for the first time. Any verbal response just really makes my day! My son does not like to many people to touch him. He loves hugs and kisses, but hates for anyone to mess up his hair or touch him unless your mom, dad or auntie. I am so happy to hear your son is reaching out to others! That is so great! :-) IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-11-2002 06:15 AM
Keenan has been on risperdal for 12 days now and in the last two days we have been noticing some postive changes. Some things I have noticed are; 1)He can get in and out of the car by using the door and not the window. He also waits for the car to stop before jumping out. 2) He does know how to smile! 3) He does recognise his Grandfather (and has spoken to him after 3 and 1/2 years). 4) Eight hours sleep is not as bad for him as he thought. 5) It is possible to be in the same room as someone else and not hit, bite, kick or throw something at them! 6) He really is quite cute. I have finally had a fairly good day! Take care. Donna. IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-11-2002 06:26 AM
Jimmy's mum. My son only has about three word sentences that are understandable but can recite any video you like. He generally converses through "video talk". Just in the last couple of days he has been making an effort to communicate. I'm sure it's the medication but I'm really happy with that! Keenan sometimes takes off his clothes but he's not interested in other peoples (a blessing). The worst thing is after giving him twenty minutes of advanced notice before we go anywhere or do anything - just as I'm about to go he takes his clothes off and won't put them back on. We went to the zoo tonight so he went naked and I dressed him when I could! Donna. IP: Logged |
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Jimmy'smom Member Posts: 38 |
posted 03-11-2002 07:38 AM
Donna THAT IS GREAT!!!!!!,seems like you got your little boy back!.when the reaction to the medicine is so positive it makes the guilty(about medicating him) feeling go away does'nt it?after all you are making his life better by taking away the symptoms and let the real boy come out,( I bet he is enjoying the changes himself as well) and as a result everybody's quality of life improves.I'm very happy for you.GOOD LUCK. IP: Logged |
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Jimmy'smom Member Posts: 38 |
posted 03-11-2002 08:28 AM
Donna, I know exactly what you are talking about.Once Jimmy tricked me good, he agreed to put and keep his clothes on before going out(3 or 4 layers of clothes)by the time we got to the gas station (3 miles from home)he had taken off all the tops ,socks and shoes (and he seats on a toddler booster chair to keep him from getting loose and showing-up in the front seat as I'm driving)I guess you can see this as a talent... The good thing is that I had the window closed if not I can see me picking-up little shoes in the middle of the road. IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-11-2002 10:27 PM
Yes it does feel good to have a sense of order. I still cringe when he raises his voice but lately it's just been because he is singing along to a video. One thing I wish I had is electric windows. We have taken the window winder from Keenan's door but because we usually can't get him restrained he chooses any of the others including mine. When you look back on the stories we can tell (especially for those with older children) it does seem humorous. Unfortunately at the time it is usually dangerous! Here's hoping for continued improvement and a go at some normality for him. Donna. IP: Logged |
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Jannette Junior Member Posts: 10 |
posted 03-12-2002 09:21 AM
I wanted to update everyone on my son and starting the diet. I have seen some weight loss and his behavior is still aggressive but not violent. I use words and pictures to show a social story which has worked better than the medicaiton, of course a lot of work since the behaviors are due to lack of communicaiton. I have worked very hard at making him understand, When I get mad I 1.Take a breath 2. Relax 3. Roll up in my blanket. When I get calm I point to the picture that made me mad. (Brother, Cat, Mom, Dad, Teacher, School Bus, Cartoon, Not here.) This has worked so good that even in school he used this to calm down. Last year was the first year I had no violence. No biteing, kicking, scratching, knocking down, Pinching. It was when he went to summer school that he went into regression. Between the school and the bus he only lasted a week. Then I had to home school. He went back to violent behavior and when his school started in september, they wanted to know why he was violent. I told them I work hard and whatever happened in full during the summer I do not know , but this is what my son was like prior to starting regular school. They were totaly amazed that I had work with him and did research on what is the best way (for my child) to handle and control his violent behavior. As of today he still becomes aggressive but I have made up a new communication board with details on everything and everyone I can think of that might upset him so he can convay his fustrations. I am very proud of how far my son has come again! And I encourage him to use his words, and he does. He tells his brother ,Your Bad, when his brother bullies him.  . Anyway every child is different and every approach is done. My son was not on medication last year nor a diet. I learned what I needed from different resources on the net, took my sons problems and started the research into what is the best way to help my son with the problems that he has. And for one year I did it. He is so close to being there again, time will tell. JannetteIP: Logged |
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memehegan Senior Member Posts: 216 |
posted 03-14-2002 08:16 PM
Ok, this is a little off topic, but when Jay is taking risperdal and on the gfcf diet things are great, how ever last night he ate a breaded chicken pattie with american cheese- all nono's and mannnn was he off this morning- he hid on his very sweet step-father who was kind enough to take him to his doctors appointment so I wouldnt have to miss work, he's done this to me and him before, we have often gone together for several of his doctor appointements, so the man checked the car- which is where he usually hides- it was meds time too- but he wasnt in the car , he checked the stairwell then went back up to doctors office where he overheard receptionist say to nurse " I don't know, he must have just left him!" The boy had been hiding behind a bookshelf in the cornor. Then the doctor calls me at work and gives me all this grief because I didn't come too, I have lived on Public assistance for almost 6 years and worked partime the last 10 years or at home (basically ever scince he was old enough to escape liscensed and unliscensed daycares accross two counties!) And finally things have been going well two years into the diet that I felt I could manage and accepted a m-f 8:30-6:00 pm job with the agency I have been with the last 5 years, I have postponed college and made alot of personal and quality of life/family sacrifices so that both of my children would be raised by me with my family morals not by a kailediscope of adults with assorted moral and emotional investment in my childs life. I explained to the doctor that two of the 4 staff people I work with are out on disability and consistency and stability (which my job also offers my family) are essential to this job- a classroom of 18 3-5 year olds. Where I live there is such a shortage of phychiatrist to write meds she is doing it against her wishes. Its not my fault. I have done everything right. Things were going great until the only psychiatrist in a 50 mile radius moved away leaving us on a waiting list for the last 6 months at the local mental health clinic to see the county psychiatrist. She was growling at me- he's nevver even had a base line EKG! I'm like yes he has- right there three years ago- oh, ok this a 2 volume folder! The pshychiatrist (who worked in the same office and with Jay monthly for the last two years and who I have given permission to share files with doctors)didnt do any of these test and Jays meds are fine, they dont need to be altered, I gather he was a little wirey today he said he "walked around alot" but she said she needed a bloodpressure before prescribing the ritilin, serzone, and risperidal. He tells me she says he needs to eat more because he's in the bottom 10% for his weight/height- she didnt mention that to me, I have been midly concerned about his weight loss and addressed it with the other doctor that he see there( there are four and you often have to take what you can get I actually had called the office at the time on the appointment to speak to her and spent my entire break 15 minuts on hold before I could leave even a message for her)- most of the weight loss has been scince starting school and not being encouraged to eat in school (so he doesn't)-but scince he was grossly overweight p for the last year and a half before this summer-ever scince he began the risperdal I have worked really hard to curb the massive bing eating he does to keep his weight down. The weight loss also began with the pubic hair. I asked the doctor- who said she will not write another prescription unless I scedule an appoint within the month and attend, I said and you have no evening hours for this? She said yes, but its a three month waiting period. And actually he has only lost 15 pounds its that he's growing tall like a weed! But like size 14 pants are the right length and yet to button them he still has a belly to tuck in so he is not waisting away! So anyway- I guess I am just venting - I will have to tell my work I need to take a personal day- I know they will be understanding -I just am a perfectionist and I never call in unless I literally have phnemonia. The doctor even called the county to verify that I actually had been on the waiting list this long- like its not my fault that their psychiatrist quit! When she called she found out that I had requested that we see a different counsellor then the one we saw 6 years ago who- with the old county psychiatrist agreed that my son was ODD and need to be institutionalized for saftey and told me they were sure his behaviors were oppostitional not autistic- which I have come to understand is and was a big load of you know what so it was I believe reasonable to request a different counsellor and actually they have refused Jay services for the last five years because I insisted on using a different psychiatrist-once we found a different psychiatrist they said they only provided counselling for children who received meds from their phsychiatrist- but anyway when my doctor found out we were being "picky and choosey she lectured me and told me I had better take what ever they gave me - blah blah blah) arrrrgh this has been the best year ever for jay and our family in general and I wish they'd quit raining on my parade! IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-14-2002 10:49 PM
I know you have had many more years of dealing with Jay's issues than I have with Keenan but I wanted to let you know that I have many times wanted to give Keenan to these professionals even for a day to give them a taste of my life!! I'm sorry you have to go through those with an attitude but like you say - you have done everything right! If you do nothing it ends up the country's problem and you get the blame - if you do what you can but he doesn't turn out perfect - then you get the blame. Sometimes I want to give up but I won't let them win. Can I add that your advice to me has beeen excellent and without people like you to guide me I would be in total despair that nobody else understood. A big hug. Donna. IP: Logged |
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Bay's Mom Junior Member Posts: 15 |
posted 03-15-2002 12:57 AM
That is rough when you have a child that likes to hide. I know! I have a few stories too! If only we had daycares that could handle our children! Sounds like the psychiatrist needs her own psychiatrist! My son took risperdal for about three years before they changed meds on him. He is a big guy and towers over his classmates. His appetite changed from day to I would have really got on that Dr. and reported her! IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-17-2002 08:09 PM
I have big mouth too and have learnt a lot from haveing a child so critically ill that you must stand up for them. Now with Keenan it is nothing for me to tell them instead of them telling me. I have had to fight long and hard for him but if I had listened to the 'professionals' in the first place - I would be thinking I am living with a child who is just over the top albeit severely over the top!!! Anyway the riperdal has kicked in and the improvements are enormous. Much more eye contact; lots of smile; not as aggressive; sleeping better; trying to use speech more. I have not felt so tired and get through my days a little less tense. Donna. IP: Logged |
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mommyto3auts Newbie Posts: 2 |
posted 03-19-2002 10:46 PM
I have 3 children with autism, 2 have been taking risperdal for the last 2 years. my daughter has stayed on the same dosage 1.0mg and has never had to have it adjusted.. my son however..started out on .5 moved up to 1.0 then he did good for months..then his behaviors became uncontrollable..he was moved up to 2.0he did good on that for months as well..then..same probnlem..behaviors became worse than before...they dropped him back down to 1.0 and he improved again. IP: Logged |
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Jimmy'smom Member Posts: 38 |
posted 03-20-2002 12:15 AM
Hi!, My heart goes out to you,I can't imagine life with 3 autistic kids, but you seem to have it under control. When my son was on risperdal 2.mg he did great for a while but when his behaviour got unmanageble the Dr gave him Depakote in addition (for violence ),then we swithced to Tegretol because the Dr learned of some children's deths related to Depakote, this combo worked really good, now he's off the risperdal but still taking Tegretol also Celexa and Symmetrel(this last two for OCD and Hyperactivity)whith that and the "autistic class" he's in this year he's made great progress. IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-20-2002 06:28 AM
I have just found out from Keenans special ed. teacher that risperdal can work wonders for a while and then it can all seem lost. Reading the posts I can see that it is a very real possibility. Now that he seems to be doing so well I don't even want to think about the alternative. Everyday people are praising him and commenting on the "different" child we have. I'm sorry I don't understand the dosage you talk about. In Australia it is in mls. Does anyone know how to do the conversion? By the way - I find it very difficult with a child like Keenan and his brother and sister let alone having three children with needs. I congratulate you on your obvious ability to be able to deal with all the issues. Donna. IP: Logged |
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mommyto3auts Newbie Posts: 2 |
posted 03-20-2002 11:29 PM
thank you! I actually have 6 children, the youngest 3 having autism. the youngest threes ages are 9 and twin 7 year olds *not identical* 2 being girls and 1 boy.. IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-21-2002 05:21 AM
WOW! I had four children but my youngest died on his first birthday last July. He had cardiomyopathy and did not make it to heart transplant. I had a very busy time running around after Keenan and looking after Lochie but at least Lochie was a very happy little boy. Aside from all the medication to keep him going he only wanted a cuddle. Now that's not too hard is it? Anyway - the year seemed hectic and now I know you have six children - my admiration and amazement have tripled!! I often felt drained and exhausted with my (at the time) six year old (boisterous), four year old (very placid and easy going), Keenan - 2 (absolute maniac, and Lochie - a few months (a shining light in our lives). Now I feel less busy but can't imagine the toll it would take living with three Keenans! Thanks for listening. Donna. IP: Logged |
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Jimmy'smom Member Posts: 38 |
posted 03-21-2002 09:55 AM
There is another med like Risperdal that you may try when the Risperdal doesn't seem to work as well, it's called Zyprexa, mabe you can ask your Dr about it. IP: Logged |
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memehegan Senior Member Posts: 216 |
posted 03-21-2002 07:48 PM
Thanks for all your replys. I so wanted Jay off the risperidal because of what they say about it making kids sterile. WE are catholic and Jay is high functioning enough to want a family and scince the diet the rage attacks are all but gone, the few times I have delayed his am dose - he takes .5 3 times a day with the 20 mg of ritilin and 50 mg of serzone- anyway every time I have delayed the risperidal portion of it I see a difference he is easily fustrated and shorter tempered. I am calmer about the whole doctor thing- after I vented here, I checked the mail and the mental health clinic said they finally had an opening for counselling but it would still be several months before we can see the psychiatrist- but I have heard good things about the psyc -yea! The old one who I disagreed with is long gone. Ok heres a good question- my daughter gave my son a mouse 2/24 he woke up in the middle of the night last weekend and sleep walked taking the cover off and it escaped. Mind you it was the sweetest cuddly mouse you ever met- so my daughter found it in the mouth of one of our five very proud cats this am quite limp. Do I tell him? he has already acceptled that no matter how much oreo loved us, he still loves his freedom more just like how when kids grow up they move out on their own. I am big on honesty, but this is the riskest time of year for regression and depression and I am scared. What do you all think? IP: Logged |
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memehegan Senior Member Posts: 216 |
posted 03-21-2002 07:49 PM
Thanks for all your replys. I so wanted Jay off the risperidal because of what they say about it making kids sterile. WE are catholic and Jay is high functioning enough to want a family and scince the diet the rage attacks are all but gone, the few times I have delayed his am dose - he takes .5 3 times a day with the 20 mg of ritilin and 50 mg of serzone- anyway every time I have delayed the risperidal portion of it I see a difference he is easily fustrated and shorter tempered. I am calmer about the whole doctor thing- after I vented here, I checked the mail and the mental health clinic said they finally had an opening for counselling but it would still be several months before we can see the psychiatrist- but I have heard good things about the psyc -yea! The old one who I disagreed with is long gone. Ok heres a good question- my daughter gave my son a mouse 2/24 he woke up in the middle of the night last weekend and sleep walked taking the cover off and it escaped. Mind you it was the sweetest cuddly mouse you ever met- so my daughter found it in the mouth of one of our five very proud cats this am quite limp. Do I tell him? he has already acceptled that no matter how much oreo loved us, he still loves his freedom more just like how when kids grow up they move out on their own. I am big on honesty, but this is the riskest time of year for regression and depression and I am scared. What do you all think? IP: Logged |
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DGEORG Junior Member Posts: 16 |
posted 03-22-2002 02:38 AM
I am all for honesty too but I also think if it is not going to hurt anyone but would/could be advantageous then I would 'lie'. I like the analogy of freedom anyway. I personally wouldn't risk it. Take Care Donna. IP: Logged |
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creekwalker Member Posts: 24 |
posted 05-15-2002 03:23 PM
Hi, I'm the Mom of a 16 year old, diagnosed with autism just last year. We did the GFCF diet all summer long, and I particularly noticed that he had problems with the casein. He accidentally got some mashed potatoes with milk in them once, and the difference was truly noticible! He turned into a Mr. Hyde about 30 minutes later and it lasted almost 3 days. We started him back on the gluten without any side effects at all. I kept him on the CF diet though for quite awhile afterwards, but I have since relaxed my watch on the casein though because it seems like it doesn't affect him like it did then. What do you think? Maybe it is causing some problems and I just don't realize it? I couldn't keep up with all the expensive food though that was required for this diet, and I can't afford the soy milks and stuff all the time. I have started him on Zoloft since then and it has worked amazingly well. He is much more verbal than he used to be, and has had no trouble expressing his displeasure when something upsets him. He used to not do that. IP: Logged |
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memehegan Senior Member Posts: 216 |
posted 05-16-2002 09:57 PM
After you stay on the diet it gives the gut time to heal. Once it is healed, no more leaky gut- no more symptoms. The problem is that most likely the body lacks the enzymes to break down the protiens and they instead remain like little bullets reinjuring the gut, seeping back into the blood stream and attaching to neuro-receptors in the brain in an opium fashion causing behaviors. How ever I believe it is also possible (rarely) for the healed gut to begin producing those enzymes, so if your not seeing any side effects thats great. You can also consider a digestive enzyme - a dietary supplement to make sure protiens finish breaking down in gut. -meme IP: Logged |
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Sarmor Member Posts: 32 |
posted 06-25-2002 04:36 PM
I just want to add to the anecdotal evidence that drugs like Risperidal and Zyprexa cause weight gain. My son gained 35 pounds after being on Zyprexa and we had a tremendously difficult time helping him curb his eating. He was always hungry while taking this medicine. As soon as we took him off Zyprexa, his appetite decreased considerably. We had to coax him to eat his meals. He lost all the excess weight within 2-3 months. Am I saying not to try these medications? No. They can be very beneficial in helping with aggression and focus. However, go into it with your eyes wide open. They do cause increased appetite. I believe they do slow down metabolism. Parents have to weigh the pros and cons. We want our kids safe, we want them to be in a state of mind that is open to learning, but we also want them to be healthy. I have read some reports that people who have taken Zyprexa for long periods had a higher chance of getting diabetes. Again, I am not a medical person, just a mom. But I have seen the evidence in my son and also a friend's son who took zyprexa. Weight gain is a reality and I did not see it peaking or plateauing as his doctor kept saying it would. IP: Logged |
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trisha rose Senior Member Posts: 95 |
posted 06-25-2002 06:19 PM
hi these cards sound great! i have a speech problem so when i take my son out and he starts playing up and people stare i can`t tell them why he acts the way he does. i just give them the evil eye. if i had cards i could give them out. a while back our autistic society were selling sew on lables for to sew on tee shirts, jackets etc which read please be patient i am autistic. i found them useful when my son was small IP: Logged |
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Jannette Junior Member Posts: 10 |
posted 07-11-2002 02:11 PM
My son is a high funtioning autistic which we found out 3 years ago. You see he was diagnosed with mild to moderate hearing loss, and was placed in a Deaf Ed class thou early intervention. 4 years ago his hearing corrected to that of a normal hearing child. He always had serious and violent tendencies but until the "Autism" label I was told I was the blame for his behavior, he was never referred to any special theropy or learning or medication. He went into regression last summer and I had to summer school him ( not a good time) . When it came for him to go back to school he still was haveing outburst and I had to drive him in and pick him up. He was suspended twice for violent behavior, and the teachers asked his Dr. to put him on a medication, it was anti depres. first but he had reactions so she put my son on rispidol, he gained wait acted weird and was not showing improvement on his outburst. I asked his doctor to give me one more chance on trying a new behavior management program and comuunication board, she agreed, one week later I called the doctor and said he showed some improvement and I wanted him off the medication because he was doing stimuli he never did before, again she agreed but said any fast or large behavior problems and we will put him on something else. After 2 months of being off the meds he had completely turned around, So much in fact that the teacher said it was time for his IEP meeting and she had a note in with the report that the medicaiton worked wonders! I saved my surprise at the IEP meeting. They were all amazed when I stated that my son was no longer on the medication and had not been for some time. And with a very proud voice I said "That is my son Charles doing this work and here is what I did to help him to get there. We have been using this same Possitive Behavior Management (because he hates to be touched) and special communication Boards. My son is Neg. on fragile X and has no retardation, he does have a wheat allery and reg. seasonal allergies. It took a lot of work and working with the Dr. and teachers and finding out informaiton and trying them we are closer to having him be a part of the community. And yes this summer I am home schooling him again and loving it. ------------------ IP: Logged |
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memehegan Senior Member Posts: 216 |
posted 07-13-2002 03:25 PM
Hi Jannette, Did your school offer to do a Behavior Intervention Plan? If behaviors arise in school again I would insist on it (when ever a child is in danger of suspension the state requires one be done!) and I would insisit that someone familar with austism and sensory dsyfunction complete it. My school used someone from BOCES who was familar with the TEACH program. She insititued all kinds of programs that eased my sons fustration level. He is/was also very intolerant of touch and prior to the IBA (intervention behavior plan) he had been restrained 33 times in one school year mostly because he couldnt write and they didnt understand that but also for being expected to participate in social/community classroom activities like pretending their ankles were tied to each other- I could have told them he wouldnt tolerate that as I bet your son wouldnt either! Mary IP: Logged |
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Tracy_Leem Newbie Posts: 2 |
posted 09-05-2002 01:47 AM
I am also new to this and I have many questions. I have had to quit my job and stay home with my now 5 yr old son because he gets kicked out of all daycares. I have gone to soooooo many doctors and all have different answers. He is not autistic that we know of but, I don't know that much about it. They are all pointing to bipolar disorder. He is now also on Risperidal, which he started about 4 months ago but is not gaining weight that is noticeable. He is also on Chlonodine to help him sleep. The side affects he is having are not being able to tell when he has to go to the bathroom. Yesterday alone I had 4 accidents, I felt like a mom with a kid in a diaper again, does anyone else have any similar effects? ------------------ IP: Logged |
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memehegan Senior Member Posts: 216 |
posted 09-05-2002 07:06 PM
Yes I do!!!! and yes Jay is on risperdal, however it seems to me to point to diet infractions. Jay has a leaky gut and seasonal afftect disorder which they now say is an indicator of bipolar. I have bipolar and Seasonal affect disorder as well. I have wondered if Jay was misdiagnoised. We are going to get a sun-light for the seasonal affect disorder. The leaky gut means that he doesnt have the digestive enzymes in his system to naturally break down protiens from milk wheat and in his case corn- I gauruntee every time he eats those foods he looses the ability to control his bladder. The best I can understand it is that the protiens undigiested are like bullets that pierce the week diegestive track wall, seep directly into to the blood stream, go to the brain and are percieved as opium because their dna is almost identical. (If he had the naturally occuring digestive enzymes those protiens would be broke down and processed for their nutritional components so instead theses kids are eating but skinny because they are actually malnurished because they cant access the nutrition in the food theyre eating!)Kids with leaky gut often have red ears or checks, rashes exzema, sometimes diareah (Jay didnt ), low weight, excessive and aggressive unpredictable behavior. The diet is not too complicated to try, my son showed incredible improvement within three days! I just did a flavored milk substitue (like chocolate rice dream), rice crispies, tacos with corn tortillas, hamburgers & french fries- no breads or milk products or processes luncheon meats for the first three days and I couldnt beleive the difference. When I saw the results after that we took the diet very seriously and follow it carefully now. Before the diet my son was actually diagnosised Pervasive Developmental Disorder with autistic like behaviors and severe adhd- this year (2 1/2 years on diet) the psychiatrist officially updated his diagnosis to adhd and depression and thats all!!!. He's not depressed because the medicines work, its just that before meds and diet he was hospitalized for 5-6 weeks 3 winters in a row-hence the Seasonal Affect Disorder (SAD) which is a type of depression! I am very curious about the wetting you are experiencing because doctors know so little about the effects of theses drugs or leaky gut on kids and I have found a hand full of other families on the diet with similar wetting problems but you are the first not on the diet - have you ruled out bladder infections or UTI? We went through atleast a dozen of these tests before I finally accepted it was developmental/physical rather then an infection. -meme IP: Logged |
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mommylovesherautisicchild Member Posts: 57 |
posted 09-06-2002 09:32 AM
Hi I have a 4 year old that has autism and the doctor put her on risperidal. She had a bad reaction to it. Her moods got worse and she had hives. She is now on prozac has been for about a week. So far so good there is less bitting, she used to bite so hard that I would carry big bruies and so did she from biting her arms. I dont know if i should even have her on prozac. If anyone has their child on it please tell me your experiences with it. IP: Logged |
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2Anna Newbie Posts: 3 |
posted 10-11-2002 05:14 PM
quote: My son is 13 and is on 2mg of resperdol 2x per day so thats 8mg all together. He has been on this only for 3 days. However he was on it for 2 years before the summer. Over the summer the doc got the bright idea to change him to geodon and with this medicine at first we saw some good results but then it began making him very ill. He would throw up and spit all the time and he was always complaining of stomach ache. We just put him back on resperdol and it seems to be okay but I noticed the instant he took it, it seemed like he was wanting to eat everything in sight. That is a side effect of resperdol it causes increased appetite and weight gain. Our son gained 30 pounds the first round with it but lost about 20 over the summer. If you make sure he gets excersize it might balance it out. My son is high functioning autistic and walking a treadmill thrills him as well as jumping on one of those mini trampolines. My son is 5ft4inches and weighs roughly about 125 to 130lbs. Goodluck to you I hope you get the meds straightened out. IP: Logged |
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memehegan Senior Member Posts: 216 |
posted 12-01-2002 01:52 PM
I found that if my son took his prescribed ritilin at the same time as the risperdal it counteracted the hunger effects of the risperdal and we are actually monitioring his weight because lunch and snack are at the ritilin peaking times in school and he is just not hungery then, hes been loosing weight but I seems to make up for it on weekends! -meme IP: Logged |
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RickJ Newbie Posts: 1 |
posted 09-08-2003 01:29 PM
I have been taking Risperidal for PTSD. I have been on it for more than 3 months and gained 30 pounds, can someone help. IP: Logged |
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Sarmor Member Posts: 32 |
posted 09-10-2003 03:37 PM
I have a thirteen year old boy who was on meds for many years - many different meds. He was put on Zyprexa for almost three years and became obsessed with food. He gained thirty pounds. We took him off all meds and while he did struggle in school (a lot due to the fact that no real accommodations were made - too much effort went in to getting him to fit into their program rather than getting a program to fit him) About a year ago we started him on carn-aware - a supplement with l-carnosine, zinc and vitamin E. It has helped him more than any med he ever took. I know it doesn't work for everyone on the autism spectrum, but when it does, it really helps. IP: Logged |
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memehegan Senior Member Posts: 216 |
posted 09-13-2003 10:23 PM
Hi Rick there are lots of drugs besides risperdal you can take. What is ptsd= is it post traumatic stress disorder? if so I also have that and have taken buspar in the past = risperdal is pretty heavy duty- my son takes it to take the edge of his rage- because it is a saftey issue. What exactly is the doctors goal for you on it? My son takes his ritilin with it and it curbs the desire to eat. -meme IP: Logged |
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