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Old 10-05-2001, 09:44 AM   #1
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Location: TORONTO ONTARIO CANADA
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ANNE D HB User
Question RISPERIDAL

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

 
Old 10-05-2001, 10:44 PM   #2
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JenMom HB User
Unhappy

Anne,my heart goes to you.
Puberty is the reason of the changes you are seeing,it is just startting.
My daughter is in 0.5mgrs of Resperidal , for two years already and she went from very thin girl to a overweight one (breaks my heart).We tried to cut low the dose and she will have trouble sleeping.
Medication for self-injured behavior is available,others than resperidal,talk to a Ped-Neurologist.
Hang in there.JenMom

 
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Old 10-10-2001, 06:20 PM   #3
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Marie D HB User
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Hi. My son just turned 6 and is on .75 mg. a day of Risperdal. He's been on it for about 6 months now and has gained over 10 pounds. He went from a size 6 or 8 pants to a size 12 just so they wouldn't hurt his stomach.

I have noticed that in the past couple of months, his behavior has gotten weirder and I'm blaming the Risperdal. He is not self injurious, but he now spends almost the entire day making self stimulatory noises, such as blowing air through his teeth until he is practially spitting all over himself. Also yelling, talking to himself, and new OCD behaviors.

The Risperdal worked great in the beginning for his problem behaviors (hyperactivity, not being able to focus or pay attention, and the noises), but now it doesn't seem to be working and I had to increase it. His neurologist wants us to try Topamax in addition to the Risperdal, but I would really like to try to find a way to get him off the Risperdal all together.


 
Old 10-15-2001, 05:42 PM   #4
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memehegan HB User
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Hi, my son has been on risperidal for over two years. Shortly after starting the risperdal he began a glueten free/caisen free and corn free diet. He also went from a life time of slims to huskys. Inpart he grew tremendously fast because of the diet, the protiens he couldn't diegest clearly had stunted his growth and development. His IQ has risen, see related post, - his behaviors have significantly dropped, I got my first I love you- constant chatter now, consistent eye contact and daily hugs! His atec scores have dropped from over a hundred to under 20!
this summer he lost 10 pounds and began puberty ie.. HAIR in places that left me speechless at his last physical- I stiffled a "where'd that come from!!!!!!" (smile) He is 10 and a half. I believe the weight loss comes from his new snack food- soy cyber chips.They c ome in assorted flavors including garlic and apple cinnamon, taste as good as potato chips - a whole bag- 2 servings (not!!) has 3 grams of fat and a whopping 14 grams of protien. He ate them like they were going out of style! i order them by the case- for $14 and they're delivered in 3-4 days, I have also convinced our local walmart to carry them. My sons diet is so restricted, it is just so awesome that he can eat these! Before the chips- he used to get so stark-raving hungry that once he ripped a cupboard door off our cabinets demanding food.

[This message has been edited by moderator3 (edited 01-10-2002).]

 
Old 10-15-2001, 05:48 PM   #5
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memehegan HB User
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I forgot to post my son's dose in the previous post - originally he was to take 1mg am and pm. I requested that the doc switch that to .5 to be take 3 times daily with other meds- ritilin, serzone and buspar-for anxiety, He aslo takes a diegestive enzyme with each med dose, and he takes a fourth dose of .5 mg risperdal at 6 pm -with zrtec- both of these make him sleepy and he usually drifts off comfortable around 8 and sleeps 10 to 12 hours! He used only sleep 4-6.

 
Old 11-16-2001, 10:54 AM   #6
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R Samara HB User
Angry

Thank all of you for showing me that I really hadn't lost my mind!!! My son is 16 and is on meds for the first time. He was taking 1.0mg Risperdal twice a day for obsessive-compulsive disorder and anger management issues. He gained 13lbs in two months. He is about 5'3"-5'4" and now weighs 170lbs. He is not happy and neither am I since I am a very heavy set person. I don't want him to go through the same weight problems I am going through. I think the autism is enough of an issue for him.

The good news is that I haven't taken him to the hospital (via a police escort) in about 6 weeks. But, he's having trouble sleeping and is falling asleep in school. He's also been in trouble with the law (ie: shoplifting). I'm at my wits end!! Every agency I've worked with drops the ball and punts to the next agency. There's got to be someone that can help my kid without drug therapy. Any suggestions are welcome and appreciated.

 
Old 11-16-2001, 06:52 PM   #7
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Hi, I am new to this site and joined because of this discussion. I am a close friend of a family with a now 16 yo autistic child. He interested me to research and write several paper on autism. He used to be on all different kinds of drugs to control his problems. The problem is drugs treat symptoms not the problem and they end up taking these drugs for the rest of their life. Your son may have nerve problems, or commonly called nerve interference. For that i would see a chiropractor or neurologist for their opinion. A chiropractor/physical therapist has helped the child i know a lot. The self mutilation, restlessness, weird noises and acts are usually caused by poor mental health due to being stressed. This stress comes from boredom. I suggest getting him more involved in activities that will keep his mind busy. Sports are great for all children and adults of all ages. If u were just sitting somewhere hardly ever doing anything it would drive u up the wall. So keep him busy even if it is just being around his siblings or other children. Autistic children seem to like to play chase/tag(even if they can't talk). The more effort u put into this the better your outcome. This will also help with weight loss, your son is most likely gaining wait because he is not doing the little things he is used to doing (that ADD children do) to burn energy. Good luck, and i wish u all the best with your sons and daughters.

 
Old 01-10-2002, 04:10 PM   #8
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memehegan HB User
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Ok, I gotta explain about the diet more- in a sub-group of "autistic" children - their autistic behaviors are actually caused by a periforated (sp?)/leaky digestive track. The holes in the track allow protiens that should go to the kidney, liver and other organs to seep directly into the blood stream unprocessed. From the blood stream they attach them selves to neuro-receptors in the brain, causing brain functions to "cross signals"- the protiens are similar in structure to opium and cause similar behaviors- anger aggression, hypersensitivity to noise, touch, incontinence,the "noises", sensory dsyfucntion ect ect- these protiens come from milk and wheat products and for my son some thing in the corn also causes similar reactions. He was so skinny before because he was actually undernourished and starving because he wasn't able to process and use those protiens, - clues that might indicate your child was in this sub-group could be unexplained rashes, red red ears that come and go, obsessive demands for milk and wheat products- ie cheerios, cheese, mac 'n cheese and ice cream- individual with this disorder who don't develop the autistic symptoms but get diareah, nausea, rashes red ears ,swollen joints ect are diagnosised as having celiac disease. If your courious- check out the GFCF site- I tried the diet for less than a week with incredible results- without this diet my son would have been instituionalized years ago- during a rage attack when he had just turned seven, a crisis intake doctor was shocked and sadly shook his head telling me he was hopelessly psyhcotic and no mother could ever live with such a nightmare. He was neither the first or last to tell me that until the diet- now I delightfully argue with teachers and staff who think I am a neurotic mother wishing bizzare illnesses on my child because he seems almost perfectly normally- they didnt know him before and I often have to bring in older pre diet teachers to help newer teacher understand which behaviors are mild autistic and which are normal ornary ten year old stuff.

 
Old 01-11-2002, 02:26 AM   #9
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ANNE D HB User
Post

Hi!
Would you believe just yesterday I was talking to my
husband and father about this very subject of gluten
free bread etc. being suspect in tantruming behaviours
in autisic children.
Would you be so kind as to send me a typical days
menu for your son? I would like to know how feasible
it would be for me to attempt to switch around David's
diet. At 12+ he is set in his dietary habits and I
also have 4 other sons. I would love to give it a
try.
Thanks so much,
Anne


 
Old 01-11-2002, 07:22 PM   #10
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memehegan HB User
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The only safe cereal I have found are brown rice puffs from walmart- but When I first started the diet- I bought rice crispies instead of other choices, I now know that the malt on them is made with barley that contains glueten, however to begin with it worked for me although it is definitely unorthodoxed in the "GFCF diet" world. I definitely recommend begining with chocolate Ricedream for a milk substitue because it tastes the most tolerable- (found on the shelf of your local grocery stores in the 'special diets' section)- also contains traces of gluten, but in the begining I have read some children go through withdrawl anyway ( as an opium addict would) my sons withdrawl was not so severe- and he was soo excited about how good he felt it was months before he was tempted to sneak foods he couldn't have- there are a few sugar cereals in bags that are safe but I cant remember their names(maybe malt-o-meal?) because they all are corn and corn syrup and I really recommend going as low sugar as possible and definitely sugar and not highly processed cornsyrup-today we use turbinado sugar available in the grocery stores in the diet section as Sugar in the Raw @ 3.99 for 2#- it is 1.20 a # at our local Healthfood store in bulk-it is the best sugar because the molasses hasn't been removed yet and it takes the body the longest amount of time to process and absorb.
Another breakfast could be eggs scrambled in olive or soy oil with fresh cut french fries fried -again in soy or olive oil(I bought a fry daddy)- and actually if your not giving up the corn, (we did not immediately but with in two weeks of begining the diet it became painfully obivious that it was a must as well as processed meats which contain sodium nitrates like hot dogs, sausage, ham and bologna this was very very hard and I did it slowly and in a controlled way - like a saturday lunch I might try a dog or bologna and be prepared for the rage attack, it only takes a couple of regressions like that until you find an inner strengh to simply eliminate them rather than expend the energy to manage a rage attack) Fleishmans no salt stick margarine is GFCF(but not corn free), and canoloa and corn oil would be ok for you too and so would potato chips fried in those oils w/o added natural ingredients or spices-I recall wise and walmart brands were ok. Tuna packed in water would be ok, last i knew campbells chicken and rice was ok (definitely a corn product though)-tuna salad and egg salad made with hellmans is ok- instead of bread serve them in a lettuce salad or get the valasic one gallon dill pickles (2.99 @ walmart), scoop out a pickle and make a pickle boat. For dinner hamburger without additives is good, chicken without preservatives also good. I guess there are ketchups ( I'm thinkin' Heinz) that are safe but I don't know what they are becaue they all have corn syrup and that is simple a monster in this house- I make a cool sauce- I wouldn't call it ketchup cause a 12 year old would-so call you on it- but its a large can of tomato puree( you wouldn't believe how many tomato products have added ingredients- natural flavoring which is often a milk protien)-add salt to taste and 1/2 cup of pineapple juice- I drain one container of juice from a dole snack pack and microwave in a big old cup for 5 minutes, it changes color to dark red- I put it on groundbeef or chill it for dipping fries in.
Oh hey again if your doing corn products- (I would still beg you to skip corn syrup though) that first week I did taco salads -rice, groundbeef, diced tomatos and lettuce and corn tortilla chips!(now I make a quick and awesome soft brown rice tortilla), Another dinner would be burgers, boiled potatos or homemade fries(store fries have additives), peas or green beans.
To make meatloaf I now use cybersoy garlic soy/rice chips but back then I used plain rice cakes, eggs and some of that tomato sauce I made. I also did peanutbutter (a brand without cornsyrup) on rice cakes with smuckers lowsugar jams- once you taste them you'll never beable to eat regular jam again! Make ice tea and fresh lemonaide to replace koolaide or soda, make sure your juice boxes are 100% juice without additives- I buy the minutemaid bottles of juice because of corn contamination in boxes(cornstarch used to seal juice boxes) but you wouldn't have to right away- its funny just a couple of days and you'll beable to spot problem foods a mile away- in my sons case his ears give him away every time- beat red and only after an 'infraction'! Also , for my son he made/makes nonstop high pitched noises(without ritilin)- hoots howls -ect, this disappeared by day three. I woke up terrified that he'd gotten into something and killed himself because he didn't wake me at five am 'chirping' as we affectionately called it. Instead he was quietly playing with legos that he had previously very rigidly assembled as per instructions and banished to a shelf warning all(including himself) to never ever ever ever touch them- on the third day of this diet all the legos were disassembled and reassembled into (of all things how symbolic is this) prisoners lined on an escape prison ship going through a black hole! I said Jay, look what you did! He said I remember how to play this way!! Once you restrict the foods for even a couple of days it should be easier to spot the problem foods- however I have read of some families who have used the diet for 3-6 months and felt they didn't see results and most say you have to try it a year- even for Autistic children without a classic leaky gut I gather that positive results are tangible but not as significant and profound as my son, I think you only see these kinds of results when there is a classic leaky gut - and there is a blood test but I have also read that some labs are unreliable and once you start the diet the blood test doesnt work and most pediatricians are unaware of the significance of the diet and actually may discourage you- my own psycologist discouraged us at first, looked into it, said it was worth exploring and after seeing our results I believe he placed his own autistic child on diet!! I just found it was easiest to set a weekend aside and try the diet and planned our family meals to be rice and potato based for the weekend, I didnt even disguss it with the family other than making some lame excuse why he had to use the Dreamrice milk - I might have even put it in a chocolate milk jug and faked it on cereal with all that chocolate and sugar what kid isn't woofing down breakfast so fast that theyre gonna notice- if anything just say its skim- its a little waterier than reg milk but no outrageous flavor- you could never fake soy milk the same way you can rice. And why take flack from family until your sure it is worth the effort. For that first weekend I made sure I didnt have unsafe junkfoods, pastas or bread in the house- oops forgot at the store - its not payday- too many christmas bills what ever it takes to try ease into it without the initial resistance-instead of icecream in the freezer there was dole frozen fruit pops, cookies were Hannaford/Shop 'n Save apple-cinnamon mini-rice cakes Ok, well it will probably take you a weekend just to read this!!! Good luck! -Mary

 
Old 01-14-2002, 09:09 PM   #11
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Zacsmum HB User
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Hi, I just want to give you a heads up to something I found while perusing the GFCF diet site. It says that the beverage Rice Dream utilizes barley enzymes during the production process.

It's close to the bottom of the page under "Additional Things To Be Aware Of"

What a great site, I found a wealth of information there, it could take weeks to get through everything with all the links to additonal information they have.

------------------
**My husband bought me a mood ring the other day. When I'm in a good mood it turns green.
When I'm in a bad mood, it leaves a red mark on his forehead.**


[This message has been edited by moderator3 (edited 01-15-2002).]
__________________
**My husband bought me a mood ring the other day. When I'm in a good mood it turns green.
When I'm in a bad mood, it leaves a red mark on his forehead.**

 
Old 01-16-2002, 06:57 PM   #12
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memehegan HB User
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Hi, just to clarify about the ricedream, as I mentioned, it does have traces of glueten as does the rice crispies, but once you begin the 'diet', it seems for months if not years you are tripping over gluten and casien in places you'd never imagine. What I was suggesting was that to begin with - ricedream seemed to be the most easily tolerated milk substitue as far as flavor- as were the rice crispies, and in that first week, I think its ok to step down off the glueten and casien slow enough to tolerate these two products. My son saw the incredible results that I have posted while eating these two products- as his system began to function without the constant bombardment of protiens it couldn't process it became more sensitive to infractions and he was so pleased with how he was feeling that it was easier to reason with him- he was actually a rational child making rational decisions then and could understand the sense of drinking a milk substitue that maybe wasn't quite as sweet and tastey as the ricedream. Now I actually make my own eggnog/rice drink that he loves and it is much much cheaper- pennies to make. -Mary

 
Old 01-19-2002, 09:18 PM   #13
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Smile

Hi, I just wanted to add a few suggestions for the GFCF diet. For another drink alternative, there is almond milk that is awesome (tastes like YooHoo). My son hated the rice and soy milk but loves this one. For cooking recipes, I will use either rice or soy milk. If your child can tolerate corn, there is a cereal called Panda Puffs (peanut butter) that my son likes. Arrowhead makes a great pancake waffle mix as well as a variety of acceptible mixes. There is the Pamela's brand which has mixes such as brownie mix and pancake mix. Tropical Source makes a variety of dairy-free chocolate candy bars as well as chips that I use to make peanut butter cups. My son also had a problem letting go of the hot dogs, bacon, etc. but now after being on this diet for over a year, he will eat grilled chicken, breaded fish (potato flour), frozen peas, & rice.
There are a variety of pastas without wheat (corn, rice, quinoa, potato). Since my son is allergic to tomatoes, I use a tasty red pepper vinegarette sauce for pizza & pasta. As for pizza, my son cannot have yeast either so we use a flour mix from Israel(I will look it up when I get home) that already has the leavening agents included for the crust and dairy-free cheese. Homemade popcorn is another snack choice. If possible, I would have my child tested for food allergies and for their gluten & casein levels before starting the diet. Then if your physician recommends it, use a enzyme supplement at mealtime. This will help to digest the wheat & dairy if in small amounts in the food. I use ENZYMAID from Kirkman's lab, which has an improved formula that was just released. It works in the same way as Lactaid does for lactose intolerance. Lastly, I would check the GFCF website because they update acceptible and unacceptible foods. Good luck to you and I hope everything works out for you.

 
Old 01-19-2002, 09:19 PM   #14
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ronaldcrumpler HB User
Smile

Hi, I just wanted to add a few suggestions for the GFCF diet. For another drink alternative, there is almond milk that is awesome (tastes like YooHoo). My son hated the rice and soy milk but loves this one. For cooking recipes, I will use either rice or soy milk. If your child can tolerate corn, there is a cereal called Panda Puffs (peanut butter) that my son likes. Arrowhead makes a great pancake waffle mix as well as a variety of acceptible mixes. There is the Pamela's brand which has mixes such as brownie mix and pancake mix. Tropical Source makes a variety of dairy-free chocolate candy bars as well as chips that I use to make peanut butter cups. My son also had a problem letting go of the hot dogs, bacon, etc. but now after being on this diet for over a year, he will eat grilled chicken, breaded fish (potato flour), frozen peas, & rice.
There are a variety of pastas without wheat (corn, rice, quinoa, potato). Since my son is allergic to tomatoes, I use a tasty red pepper vinegarette sauce for pizza & pasta. As for pizza, my son cannot have yeast either so we use a flour mix from Israel(I will look it up when I get home) that already has the leavening agents included for the crust and dairy-free cheese. Homemade popcorn is another snack choice. If possible, I would have my child tested for food allergies and for their gluten & casein levels before starting the diet. Then if your physician recommends it, use a enzyme supplement at mealtime. This will help to digest the wheat & dairy if in small amounts in the food. I use ENZYMAID from Kirkman's lab, which has an improved formula that was just released. It works in the same way as Lactaid does for lactose intolerance. Lastly, I would check the GFCF website because they update acceptible and unacceptible foods. Good luck to you and I hope everything works out for you.

 
Old 01-21-2002, 01:07 AM   #15
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delagarzam HB User
Talking

We have an Autistic kid, 9 years old, and I'm very interested about the GFCF diet as well as the perforated/leaky digestive tract information. memehegan, would you be kind enough to provide surces of information about these topics? Thank you so much in advance. Martin De La Garza

 
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