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Old 03-21-2002, 02:21 AM   #61
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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.

 
Old 03-21-2002, 06:55 AM   #62
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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.

 
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Old 03-21-2002, 04:48 PM   #63
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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?

 
Old 03-21-2002, 04:49 PM   #64
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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?

 
Old 03-21-2002, 11:38 PM   #65
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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.

 
Old 05-15-2002, 12:23 PM   #66
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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.

 
Old 05-16-2002, 06:57 PM   #67
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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

 
Old 06-25-2002, 01:36 PM   #68
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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.

 
Old 06-25-2002, 03:19 PM   #69
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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
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trisha rose

 
Old 07-11-2002, 11:11 AM   #70
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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.

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Old 07-13-2002, 12:25 PM   #71
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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

 
Old 09-04-2002, 10:47 PM   #72
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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?

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Old 09-05-2002, 04:06 PM   #73
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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

 
Old 09-06-2002, 06:32 AM   #74
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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.

 
Old 10-11-2002, 02:14 PM   #75
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Quote:
Originally posted by ANNE D:
Hello All:

We are currently experiencing a crisis with our 12 year
old severely autistic son. He has had a marked
regression in toileting skills, He has suddenly become
anxious and extremely self injurious. He is now picking at the roof of his mouth and hurting himself.
Believe me, since he has been three years old we have
had one heck of a time with him.
He is currently taking 1.5 mg risperidal daily.
He has more than doubled his weight in 3 years. Although he is not obese he is overweight. He use to be thin (almost frail) Does any one have a child on
a higher dose of this medication? I beleive his dosage
needs to be changed. He weight 150 pounds and is quite
tall.
Any feedback regarding sudden behaviour change or medications for self injurious behavior would be much
appreciated.
Thanks very much.
Anne
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.
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