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Old 03-09-2002, 12:27 PM   #46
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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! :-)

 
Old 03-11-2002, 03:15 AM   #47
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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.

 
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Old 03-11-2002, 03:26 AM   #48
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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.

 
Old 03-11-2002, 04:38 AM   #49
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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.

 
Old 03-11-2002, 05:28 AM   #50
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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.

 
Old 03-11-2002, 07:27 PM   #51
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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.

 
Old 03-12-2002, 06:21 AM   #52
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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. Jannette

 
Old 03-14-2002, 05:16 PM   #53
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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!

 
Old 03-14-2002, 07:49 PM   #54
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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.

 
Old 03-14-2002, 09:57 PM   #55
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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!
I had to quit my job b/c no one wanted to take care of my son.

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
day and sometimes lost weight.

I would have really got on that Dr. and reported her!
You have every right to be picky and choosey! And telling you that you had better take whatever they gave you! Oh yeah! The fight would have been on! I have a biigggggg mouth when it comes to my son!

 
Old 03-17-2002, 05:09 PM   #56
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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.

 
Old 03-19-2002, 07:46 PM   #57
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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.
i changed dr's and he said anything over 1.0 usually doesnt do anything more than feed the fire...not sure if i believe him but he has excellent credientials working with auts..josh has been on 1.0 3 times a day for the last year and so far is doin ok..i noticed everytime it was adjusted..it helped him. he has also been on *along with risperdal* buspar,ritalin, aderall,prozac,clonidine with no sucess with any of them. Good luck to you.

 
Old 03-19-2002, 09:15 PM   #58
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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.
Good luck to all your family.

 
Old 03-20-2002, 03:28 AM   #59
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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.

 
Old 03-20-2002, 08:29 PM   #60
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thank you!

I actually have 6 children, the youngest 3 having autism.
I may ask you some questions after we get a new psych for josh because he still has violent tempers on the risperdal...and hes getting bigger..

the youngest threes ages are 9 and twin 7 year olds *not identical* 2 being girls and 1 boy..
take care!

 
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