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lyrute
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13 Feb 2012, 10:06 am

Hi everyone. I am wondering, is there any bio medication, suplements or vitamins you tried to give to you children and how it effected their behavior...
Have you ever heard about piracetam medicines? It was recomended by neuro for me as sometime good medicine to help my son



lyrute
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14 Feb 2012, 6:03 am

I wonder nobody uses anything..... I still think that this condition is because something is lacking in human boday to develop brains the right way...



liloleme
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14 Feb 2012, 6:15 am

Our brains develop differently this does not make it wrong! Most Autistic people have very high IQ's so do you think that there is something wrong with their brain that makes them so intelligent?



lyrute
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14 Feb 2012, 7:53 am

I am not saying that all Autistic people have low IQ, but to tell you the truth, they see world differently and they process information differently than main stream. I do not want o offend anyone, but I fell desperate, when my son doesn't want to communicate with the world, he is not talking and he has meltdowns. It is not normal and I understand that's what he is, but I want to do everything I can to help him to adapt and be able to live independently, as I will not live forever to help him.
So yeah, if there is any medication which can help him to decrease his stimming, or help him to understand things, than I will try it. Of course I will not just give it to him, first I will make sure it will not harm him, that is why I asking questions and doing reasearch with other parents if they had any experience and can advise me.
Also, I want to point out, that not all Autistic people have high IQ, some of them strugle to understand even simple things, to learn. They need all help they can get - whatether that is.



liloleme
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14 Feb 2012, 8:10 am

Most people here shun biomeds but there are some who use them. I would use melatonin if my children had sleep issues. Meltdowns are sometimes a product of stress or frustration....like not being able to communicate. Have you tried in home therapy?....the TEACCH method is very good, it worked well for my daughter who was diagnosed severe/nonverbal a few months before her 3rd birthday. You can find her vidoes starting at age 5 on youtube under Aspiemom42. I have more footage of her but its on camcorder tapes. I did not give my daughter any drugs or medications of any type. We just worked with her and met her sensory needs. We found that she is very visual and started communicating and still communicates better, using PECS cards. I also suggest trying the ipad or the itouch and the Proloquo2go program. Try PECS first, if he is responsive to them then spend the money on the ipad.....My daughter acted like she was born with her iPad in her hand, she knew how to use it right away.
She was had her IQ tested recently and scored at a 9 year old level in some areas. You cant have a conversation with her but she is very smart, her communication is getting better since we started using the iPad. We are going to get the icommunicate program as the Proloquo still has not come out with the French version and it is really what we want as we moved to France a year and half ago and she has learned some French words but she had difficulty having a conversation in English so we were back at stage one when first moving here.

Like I said, its a lot of work and I would get as much help as you can, as much therapy as you can. We started off with swimming while we were waiting for therapy. It was something and it was stimulating her and getting her around other kids. I had her potty trained before she could say a sentence....she could say M&M because I would give her one if she went on the toilet :D. I have Asperger's and I also have a 9 year old son with Aspergers and a 19 year old daughter with it as well. I understand my kids and I dont freak out over every little thing. I just try to keep them calm, happy and I make sure they get healthy food and lots of therapy. I am turning one of our bedrooms into a sensory room, its a great idea and you can do it cheap or you can go all crazy and spend a ton of money and even have someone build it for you. If you dont want a sensory room at least have a mini trampoline and exercise ball and some play doh or clay, paint, arts and crafts things, shaving cream (get your floor and your kid clean all at the same time) and look up office playground....cheapest sensory toy store anywhere!
LED lights are awesome too...they are still having some sales on Christmas lights...the ones inside the tubes are awesome because they can hold it and play with it. Just dont leave them alone with it or they may bite it or wrap it around their neck.....also if he has chewy needs these are awesome http://kidcompanions.com/ you can also put their name, that they are autistic and your phone number for those times that they slip out the door....its happened to me twice!



liloleme
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14 Feb 2012, 8:18 am

lyrute wrote:
Also, I want to point out, that not all Autistic people have high IQ, some of them strugle to understand even simple things, to learn. They need all help they can get - whatether that is.


Your child may "appear" as thought he has a low IQ on the outside but you do not know what is going on, on the inside. My daughter used to pull her hair, bash her head into the ground, she hardly feels pain, and she used to play with her spit. Someone could have looked at her and thought she was retarded....shes not. Here is a great web site for you http://carlysvoice.com/

I also still have to change my very highly intelligent daughters clothes and wipe her booty.



nat4200
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14 Feb 2012, 9:32 am

Redacted



Last edited by nat4200 on 19 Apr 2012, 6:48 am, edited 1 time in total.

liloleme
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14 Feb 2012, 9:51 am

nat4200 wrote:
lyrute wrote:
Also, I want to point out, that not all Autistic people have high IQ, some of them strugle to understand even simple things, to learn. They need all help they can get - whatether that is.

That is true of non-autistic persons as well in my experience :wink:


:lol: :lol: :lol: :thumright:



liloleme
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14 Feb 2012, 9:53 am

I guess we have a different way of looking at intelligence as well! I cant ski, this does not make me unintelligent.


It is true....no matter what these snake oil peddlers crap they feed you there is no "cure" for Autism....you can cure something that is not a disease....there is even diseases you cant cure like my auto immune disease that I was blessed with *sarcasm*....I can treat it but I cant cure it or my autism. I was born with my brain this way, it is not broken or messed up or damaged in any way, its just different. You can TEACH autistic children, you can teach them to communicate and you can teach them to do the things they need to do. Autistic people write, they work out with the public. We are part of society. Stop watching the autism drama on the news, its not that bad, society just doesnt like anyone who is different so they try to make us all look as if we need to be fixed. People need to stop viewing people from the outside. Just because someone is badly burned or have defects to the face or body does not make them less than a person. Autistic people are different, we may need help but we also may be smarter than you so maybe we can help each other. I actually hate people helping me, I dont like strange people touching me. Im glad I have my husband who I feel comfortable and who understands me so when Im in the hospital I dont have some strange woman washing me and helping me to the toilet. My auto immune disorder is called Ankylosing Spondylits and my back is deformed and I also stimm a lot so I look a bit weird to you but I dont care. I am happy with who I am and your child will be too if you accept him for who he is and do not act as though he is damaged!

Also since it was mentioned "Risperidone" is an anti psychotic and I found it sort of funny but forgot to post after the video on France that doctors in the US are handing out an anti psychotic like candy to Autistic children in the US but the French are bad because the come right out and say it.....ok, I agree all the sex crap freaked me out, however it is the same thing, they say it, the US "thinks" it.
We have been fortunate in the US and here in France to find awesome therapists that agree with my husband and I how our children should best be helped. We did a lot of research when my daughter was first diagnosed right before age 3 and we havent stopped. My husband is a micro biologist so that helps. I have Autism so that helps as well. My daughter will be 7 the beginning of April this year. I think we have done amazing and she has done even more amazing as she did the work. She never stopped and even when she gave up for a bit she would just come back stronger. She has a strong need to learn and she does have a genius intelligence as Ive mentioned but her brain simply does not work the way a typical persons brain does. My brain does not work the same either, Im thankful for this actually because I look at you people and think.....Im so glad I was born autistic. Sorry to be rude but you are just as rude with your comments. I know you are not meaning to be this way but why dont you think before you start spouting off. Read the story I sent you about Carly, her parents talked about her for years like she wasnt there and she is very intelligent and she has a great sense of humor like when someone made a comment that she was being prompted to type she said "I dont have someones hand up my butt making me type" LOL. Go Carly!



DW_a_mom
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14 Feb 2012, 11:37 am

Hi lyrute,

This isn't my area because our situation is so different from yours, but I do think this thread at the moment isn't representing the full breath of experience in this community. It is a difficult topic because there really is so much quakery out there, but there are some "won't hurt" options as well. I would start with our stickied parenting index and then maybe do some word searches to find past topics.

Just ... Be careful. First and foremost will always be working directly with your child, figuring out their unique needs. But that doesn't mean there can't be little things that will just make your child feel better, and if your child feels better, they will respond better.


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lyrute
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14 Feb 2012, 12:05 pm

liloleme wrote:
I guess we have a different way of looking at intelligence as well! I cant ski, this does not make me unintelligent.


you can cure something that is not a disease....there is even diseases you cant cure like my auto immune disease that I was blessed with *sarcasm*....I can treat it but I cant cure it or my autism. I was born with my brain this way, it is not broken or messed up or damaged in any way, its just different.


Maybe it is not a disease but it is a disability. If person can not take care of himself and can not express himself - needs aditional support to understand simple things, then it is a problem for him. Lets say if that person doesn't have loving family, who spend time teaching him/her and there is no support and early intervention, what can he expect ? Will he be able to survive and live normal life - have a job, earn money, simply - take care of himself/herself?

I am not saying, autistic children should use medication to be cured. I am speaking from my perspective as a parent raising a child who I do understand, but I can not break through. He is strugling to understand simple things, he doesn't understand what I say. Every child is different. he doesn;t understand that his nappy should be changed and he can not say that he is thirsty. So yes, I am desperate and I want to help him and if there is something recommended by neurologist and it might help him to understand these simple things, then sure I will try it. I don't care if he stimm or he looks different - I would not treat him as damaged in that respect, ever...

I do not understand why people are so sensitive about their conditions - I am not about my sons condition. I know he is different but I would not change him, if he will be abit different then other humans, so what? But I want him at least to be able to take care about himself and understand what other people are saying to him. He can be very good in music and very good in details and geometry, but I can not see, how it will help him to survive and take care about himself?

Do not forget - every child is different and he needs sometimes different things to help him. As mother I can feel that his body might be lacking of something to be able to grasp the reality. He eats ok, but he is not able to gain a lot of weight. He has other things I worry about. And yes, as a parent, I want my child to be happy in the end. If he will be able to be happy and autistic - then I will be more then happy for him and support everything he does.

But I see bullies at school making fun of different child, I see him strugling in real life situations and my heart is bleading. I dont need to fool myself, that he doesn't need those skills, he can still be happy - because I don't know at the moment if that is possible.

Again, I am happy for you, as you live your life and your daughter. I wish you well and a lot of beautiful moments,.



liloleme
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14 Feb 2012, 6:12 pm

Im sensitive because Im tired of people treating us like we are invisible or that we need to be fixed with some medication. Yes everyone is different but a magic pill or magic diet is not the answer nor does it exist. What really makes me angry are these people who are out there making money off the hysteria they create by making autism "look" so horrible. Playing videos of Mothers saying they have seriously thought of killing their child. As a mother who lost a child to drugs and Bi Polar disorder that makes me really angry.

Im not trying to be mean, Im trying to show that the key to helping your child is therapy not pills and biomedical doctors who will rob you blind. I sent you to my youtube site to see my daughters videos because she was, as I said, diagnosed as severe and non verbal a few months away from her 3rd birthday. I wanted you to see what early intervention CAN do, not that it will work this way for your child but it could and it may even do more. I also pointed out that there are other ways of communicating than with your mouth.

Im sorry you are so worried about your childs life but again, as someone who lost a child....enjoy your child...be they autistic or whatever, this is your child. Work with them, show them who you are and they will show you who they are. Learn from each other. Watch him and keep a log of what upsets him, what foods bother him, what stimuli annoys him. Learn about sensory therapy, occupational therapy, and speech therapy. Most of this is given free in the US. I dont know where you are but you can, if you work hard and maybe get help from friends and family, help your child yourself. Do your own therapy. You dont need drugs and we dont know what this stuff is doing to our kids....in many cases its making them worse and then people put them on more drugs, before they know it they are taking more pills than I am for my auto immune disease.

I dont know what DW (typically I agree with her) was talking about but I dont think I was mean or rude or misrepresenting anyone, but then again, this could be true but it is the way I feel. I am happy with who I am. I have turned my constant daydreaming which I was punished for all the time in school into something positive. I now write and I have found that I am able to express myself through writing.
I just want people to stop being so negative and to stop looking for that magic pill because it does not exist. I have been on so many sites where these people seem to just want others to feel sorry for them....what about the child? You are messing with the kids diet....have you eaten gluten free food??? gross!....If you child has Celiac disease (which is actually an allergy, why they call it a disease I dont know....lots of silly words out there) then certainly take gluten out of their diet but this does not cure everything for goodness sakes! I believe in a healthy diet. I am a vegi but my kids still eat meat, however I bought a very expensive blender and I make them smoothies and got them to eat spinach....my daughter calls it "green ice cream".

Yes, Autism is considered a disability because we are different from most of society and we do need some help, some more than others....and? what is the point? I also have a disease, as I pointed out, that is causing my back to be deformed and I can not walk without a cane and then only for short distances, I can not sit, I am an invalid but that still does not make me sad or miserable or pessimistic.....yeah, it sucks sometimes but Im alive, this is my life. Im not terminal right now and I am doing my best to enjoy my life. Life is what you make of it and I chose not to sit around and worry about my kids (I have five btw....my youngest daughter is my only autie and I have two aspies my 9 year old son and my 19 year old daughter who also has POTS disease. I lost my Bi Polar 24 year old son to a heroin overdose after being clean for two years this past August and I have one NT 21 year old beautiful daughter who does not have autism but does have sensory processing issues....she has been dating an aspie for four years now and they are very happy). I noticed in one of your posts that you say you want something to stop your son from stimming and you mention bullies...you are worried about what your child "looks like" to other people....stimming is good and helpful and sometimes a way to express excitement. It should not be stopped in my opinion....maybe if it is constant you can give him time limits. Also you did not say how old your child is, its hard to give you many ideas when I dont know the age of your child. If your child is very young I have very different ideas for you than if your child is far older.

Please enjoy life and your son....yeah there are bullies, deal with them, there are people who will stare, you can deal with them too because you have a very special gift....you have been blessed with a child who has Autism!



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15 Feb 2012, 12:49 am

Lilolme, I didn't say there was anything wrong with the opinions in this thread. I said I felt it could be one sided, that there were many more opinions out there on this forum. We have had parents who felt that certain supplements, medications or diet changes have helped their children, and those opinions are valid as well. We really don't have members advocating anything scary like chelation, and I think there enough unknowns that it is not impossible for the occasional alternate opinion to be worth listening to. I do think I was clear that the things you've been suggesting are primary. Just that doesn't have to mean excluding all other possibilities.

I think my main worry would be that this doctor is suggesting something that I really don't think I've seen discussed here.


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lyrute
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15 Feb 2012, 5:39 am

Thanks for your sugestions. I work with my son everyday and will keep working. He is 2.5 yo and we live in UK. We get a lot of support from NHS and from over organisations, we have speech teraphy as well. But I always seek for new treatments. Piracetam was advised by our neurologist. I also spoke with one of my friends he is aspie and has autistic son - he was given this medicine himself, when he was a child - (it was under different name). He said that it helped him a lot to concentrate and learn new things. He just advised give this medicine for my son when he will be 3 yo, because it is a bit early. I will think about it, as I am not sure if I want to give it to him.
I do realise, that people can lead happy lives with or without Autism. You have to have thick skin to not care what other people opinions are about your child. I still don't have that strength - but I will be there.

In the end, doesn't matter, you can be healthy, but still feel depressed and unhappy - so I will try and be possitive...



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16 Feb 2012, 9:46 pm

http://www.freevideosforautistickids.co ... ation.html

http://www.freevideosforautistickids.co ... tions.html

I have posted a link to information about meds from my free website and another link about comorbid conditions from my free website. My kids, aged 4 and 7, have comorbid anxiety disorders (common in ASD kids) and a variety of associated symptoms, including selective mutism (mutism caused by extreme social anxiety at school, etc.), chronic insomnia, meltdowns, OCD, etc. They are both being treated by a child psychiatrist, who was not really into seeing kids until they got close to age four. They are on Prozac (fluoxetine) by day and Clonidine at night. These meds really help with the anxiety and associated symptoms.

A did try Relax-a-saurus L-theanine blend chewables with my younger son, and they helped somewhat; however, Prozac works much better for daily medical management. I purchased this particular supplement off of Amazon.com, as well as a chewable sleep supplement containing Melatonin, which does not work as well a Clonidine. However, it is better than nothing and may be a practical option for a child too young for prescription meds.

This is the sleep aid below:

http://www.amazon.com/OZzzzs-Children-3 ... 643&sr=8-1


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lyrute
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17 Feb 2012, 7:31 am

blondeambition - Thanks for the information. I don't think I need such extreme medicines as Clonidine and Prozac. I was talking about Piracetam, because it has a lot of good feedback about helping children to improve their speach and motor abilities. This medicine will not change their social behaviour or stimms, because it is definately not a super pill or something. It improves blood flow to the brain and yes you can describe it as food for brains.
I am planning to give this medicine for my son (if he will still need it) when he will be 3 years old, and see if it will help him. So far I am not medicating my son - I give him vitamins and IQ (fish oil) that is all. We work with him every day and have different specialists helping us.

I am not against medicines, if you need them - every case is different. At the moment I do strugle to accept, that my son is still non verbal and has problems understanding world around him.

Yesterday I pretended that I am crying, to see his reaction. He was very intrested in wrinkles on my forehead then in my emotional state... He was smiling and trying to take wrinkles away with his finger. Sad but funny at the same time.