@BaltoLoneWoolf Calm down balto before you end up on Xanax, okay. HFA is most certainly autism and Asperger's is Aspergers. And classic autism is the orignial label for autistics like my son. If people like me disgust you it's probably because you're threatened by the reality of the videos.
@kgaccount I just saw your channel. Now I understand. You're one of those self-proclaimed "gay rights" "animal loving" "let's all love each other" people, who go on you tube and then hate people. Now it all makes sense. Hypocrisy should be your name on you tube.
in terms of diet, have you looked into Specific Carbohydrate Diet and GAPS (Gut and Psychology Syndrome) diet (which is SCD with probiotics)? GFCF is not sufficient to cure the gastrointestinal problems, merely manages symptoms. SCD and GAPS can actually heal and reverse the gastrointestineal problems. Look up "BTVC" for the SCD book on Scribd. Good luck!
@lukang72 Gastrointestinal problems seem to plague many autistics, including our son. Always ask doctors to check for H-Pylori. Our son had this and it was causing extreme stomach pain which triggered savage bouts of self injury. However, eradicating H-pylori wasn't the cure to his self abuse. So far, the best "cure" we've discovered is a combination of nicotine patch therapy (to increase choline in brain) and power purees (soft foods with flax, yogurt, avocados, pineapple, salmon, spinach, etc)
@kgaccount thanks for the reply. glad you found some creative solutions. if you don't mind, have some other suggestions that you may want to look into. first is coconut oil. it is brain food above all others. excellent book called "Stop Alzheimer's Now!" by Bruce Fife ND talks about how it works in very scientific terms. I highly recommend this book and think it has direct application to autism as well.
I'm beginning to think there may actually be SEVERAL totally separate disorders that are labelled "autism". Some parents say they knew something was different with their child at birth, others say their child became autistic after vaccines, and some parents who's kids have HFA or Asperger's say they didn't know something was up until the kid was 9 years old or older. The "spectrum" is almost too big....
A proper diagnosis of autism should always ELIMINATE other etiologies, such as Fragile X syndrome, Landau Kleffner, Celiac Spruce, in born errors of metabolism, Rett's, ADHD, and Speech and Language Disorders (selective mutism) ...also food allergies...my son has been tested for everything and it's always negative....Official diagnosis: Profound Autism , epilepsy and self injurious behavioral disorder..FYI: Research shows "recovered autistics" are often cases that were NEVER really autism ...
Thanks for your response. I'm a pre-med student studying to become a neuropsychiatrist concentrating on ASDs, and I was wondering, do "you" yourself believe autism is truly a spectrum disorder (as it is considered nowadays) or do you only believe that "true" autism is the profound version your son has? Thanks!
I think the Spectrum has expanded so much that it's too vague...too abstract....too many children who aren't really autistic are being called, diagnosed or labeled "autistic." I think it's disturbing that in some cases, research shows that the "cured" or "recovered" autistic child turned out to have never had autism, but rather another disorder, in which, when treated, they recovered from.
@kgaccount Some people at have selective mutism and autism at the same time (I got to a state residential school and there are a few here). I have never met a real recovered autistic in my life. No one at my school has ever left because they "recovered" from autism. I don't think there is any such thing as a recovery
As for biomed and GF/CF diet etc, this can have very beneficial outcomes to many children, whilst no improvements are seen for a minority. (may I clarify gluten/ casein, is not just an issue of digestion, gluten is known to activate the immune system and contribute to a loop of signaling that can have ultimately neurological and developmental consequences, as well as contribute to a greater immune imbalance). Often people who claim it does not work, have not tried it. A GF/CG helps in about 80%.
Remember there are also genetic causes (I mean pure genetic, i.e. a given genotype = a phenotypic consequence, irrespectively of the environment). I would have people looking constantly for possible mutations, a knowledge in this area progresses, we eventually get to know about the origin of certain individual's condition. This can help with treatment, for example once Dravet syndrome is diagnosed, better drug combination can be applied to control seizure. There are other potential avenues too.
Interesting, doctors have checked Jamey for fragile x, prader willi, lesch nyan, mercury lead poisoning, gluten sensitivity, etc....all types of familial epilepsy genes...all tests always negative, some tests done twice. Always negative. Hence: diagnosis: severe autism, self injurious behavior, epilepsy, etiology unknown we've come a long way, though...higher titration of Keppra has ironically, put him in an excellent mood lately....go figure.
Good to know Keppra seems to be working- Dravet Syndrome? I mention genes because ideally, for these kids/young adults, it is good to have the DNA kept in a data base to be tested as soon as new candidates are found. We still have on top of this encephalitis, but I am sure this has been considered as well? I do not have answers for my son either. Have you tried ACTH?
Gregwiatt: When we all go to the big house in heaven...
heaven has become something non existant for me , thats why i said it's wrong...everybody keeps saying "when we go to heaven , everything will be perfect blah blah blah"...dreams
i apologise to anyone who finds my opinion wrong , but thats how i feel...
Noi54BOmb, it sounds like you have been through some real awful things and trust me, I understand. Though I'm a Christian, there are times with my son, Jamey, that I am without hope. There are nights that are so long and dark (constant head hitting, seizure activity or loud vocalizations) that I think, why God? Why not just take us all? Why torment us? Why so long with so little relief? But then, somehow, the miracle is...we go on. I urge you to NOT give up. You aren't alone in pain and anger.
Thanks for your words...im trying not to give up but its sometimes that i can't help it but to just break down and start crying...you know , its that time when your brain starts "torturing" you , thinking "why did this have to happen to me?" why did i have to go through so much pain and agony?" "do i really deserve it that much?do all the kids that suffer from ANY disease deserve it that much?" but yes , as you said , the miracle is...we go on...it goes away and it comes back...
although im a christian too , i do believe in God too , im sick and tired of hearing such things as "when we go to heaven blah blah blah..." because we have to look at whats infront of us NOW.face the situation and think" whats my next move?" no just sit there and say such things to the other person just thinking that it's going ot give him some relief....it's just adding more pain to the other person's pain..
Remember the story in the bible when people ignore the man on the road and just keep walking....finally, a good samaritan stops and picks the guy up, tends to his wounds and brings him to an Inn. That's real Christianity. People carrying other people's burdens. Bringing comfort and hope to people in pain in tangible ways. A meal. A hug. A 20 dollar bill. Of course, we can't all do this, but if we have opportunity, shame on us for walking by and pretending we never noticed other people's pain.
@gregwiatt:don't get me wrong , but i rly believe that all this is just wrong...ive seen and gone through many things in my life , my cousin died from heart problems , i almost lost my kidneys , my childhood friend has autism and i can list a million more things...but thats raw reality right there...i REALLY admire the parents' devotion to jamie though , it's just incredible...it's the first time i watch so much love , something that doesn't really exist in my family...:(
When we all go to the big house in heaven your son will tell you all the things he felt that he couldnt say and thank you for devoting your lives to making him all he can be. I know I will hear my 12 year old son tell me those words even though he is stuck at 3 due to autism.
I think your right about classic autism being given to too many children. My son was diagnosed with Kanner Autism. However, his development bears no resemblance to your son's. At the same time, his development far lags those of children diagnosed with AS and they are just as different from him as my son is from yours. There is something going on here that science hasn't figured out. Personally, I don't believe there is much to the GFCF, at least as applies to my son.
Comment removed
BaltoLoneWoolf 1 month ago
@BaltoLoneWoolf Calm down balto before you end up on Xanax, okay. HFA is most certainly autism and Asperger's is Aspergers. And classic autism is the orignial label for autistics like my son. If people like me disgust you it's probably because you're threatened by the reality of the videos.
kgaccount 1 month ago
@kgaccount I just saw your channel. Now I understand. You're one of those self-proclaimed "gay rights" "animal loving" "let's all love each other" people, who go on you tube and then hate people. Now it all makes sense. Hypocrisy should be your name on you tube.
kgaccount 1 month ago
Have you considered a chronic brain viral infection? Has he had a colonoscopy? How are his bowel movement habits?
YipVideos 2 months ago
love this video
pshepherd58 5 months ago
in terms of diet, have you looked into Specific Carbohydrate Diet and GAPS (Gut and Psychology Syndrome) diet (which is SCD with probiotics)? GFCF is not sufficient to cure the gastrointestinal problems, merely manages symptoms. SCD and GAPS can actually heal and reverse the gastrointestineal problems. Look up "BTVC" for the SCD book on Scribd. Good luck!
lukang72 7 months ago
@lukang72 Gastrointestinal problems seem to plague many autistics, including our son. Always ask doctors to check for H-Pylori. Our son had this and it was causing extreme stomach pain which triggered savage bouts of self injury. However, eradicating H-pylori wasn't the cure to his self abuse. So far, the best "cure" we've discovered is a combination of nicotine patch therapy (to increase choline in brain) and power purees (soft foods with flax, yogurt, avocados, pineapple, salmon, spinach, etc)
kgaccount 6 months ago
@kgaccount thanks for the reply. glad you found some creative solutions. if you don't mind, have some other suggestions that you may want to look into. first is coconut oil. it is brain food above all others. excellent book called "Stop Alzheimer's Now!" by Bruce Fife ND talks about how it works in very scientific terms. I highly recommend this book and think it has direct application to autism as well.
lukang72 6 months ago
Kgaccount , 2:00 what Is the artist to that song ??
TypesEvilAspieEyes 9 months ago
@TypesEvilAspieEyes i think it's beethoven
bunnyz324 7 months ago
Your doing a good job! I hope Classic Autism gets separated from all this other autism spectrum stuff so it get's recognition and attention.
MuseOfDreams 1 year ago
you are a wonderful mother.
jv374 2 years ago
ur really a great mother =]
now i know the strugle she had
she wasn sel harming but yeah
she has health probs..to.
sexiilicous1 2 years ago
I'm beginning to think there may actually be SEVERAL totally separate disorders that are labelled "autism". Some parents say they knew something was different with their child at birth, others say their child became autistic after vaccines, and some parents who's kids have HFA or Asperger's say they didn't know something was up until the kid was 9 years old or older. The "spectrum" is almost too big....
TheAutumBlog 2 years ago 4
A proper diagnosis of autism should always ELIMINATE other etiologies, such as Fragile X syndrome, Landau Kleffner, Celiac Spruce, in born errors of metabolism, Rett's, ADHD, and Speech and Language Disorders (selective mutism) ...also food allergies...my son has been tested for everything and it's always negative....Official diagnosis: Profound Autism , epilepsy and self injurious behavioral disorder..FYI: Research shows "recovered autistics" are often cases that were NEVER really autism ...
kgaccount 2 years ago
Thanks for your response. I'm a pre-med student studying to become a neuropsychiatrist concentrating on ASDs, and I was wondering, do "you" yourself believe autism is truly a spectrum disorder (as it is considered nowadays) or do you only believe that "true" autism is the profound version your son has? Thanks!
TheAutumBlog 2 years ago
I think the Spectrum has expanded so much that it's too vague...too abstract....too many children who aren't really autistic are being called, diagnosed or labeled "autistic." I think it's disturbing that in some cases, research shows that the "cured" or "recovered" autistic child turned out to have never had autism, but rather another disorder, in which, when treated, they recovered from.
kgaccount 2 years ago 2
@kgaccount i dont know if transition programs have many students like jamie but we'll find out and visit them
does jamie get frequent diarrhea
bunnyz324 7 months ago
@kgaccount Some people at have selective mutism and autism at the same time (I got to a state residential school and there are a few here). I have never met a real recovered autistic in my life. No one at my school has ever left because they "recovered" from autism. I don't think there is any such thing as a recovery
DarkQuietWyattON 6 months ago
As for biomed and GF/CF diet etc, this can have very beneficial outcomes to many children, whilst no improvements are seen for a minority. (may I clarify gluten/ casein, is not just an issue of digestion, gluten is known to activate the immune system and contribute to a loop of signaling that can have ultimately neurological and developmental consequences, as well as contribute to a greater immune imbalance). Often people who claim it does not work, have not tried it. A GF/CG helps in about 80%.
Skymaker69 2 years ago
Remember there are also genetic causes (I mean pure genetic, i.e. a given genotype = a phenotypic consequence, irrespectively of the environment). I would have people looking constantly for possible mutations, a knowledge in this area progresses, we eventually get to know about the origin of certain individual's condition. This can help with treatment, for example once Dravet syndrome is diagnosed, better drug combination can be applied to control seizure. There are other potential avenues too.
Skymaker69 2 years ago
Interesting, doctors have checked Jamey for fragile x, prader willi, lesch nyan, mercury lead poisoning, gluten sensitivity, etc....all types of familial epilepsy genes...all tests always negative, some tests done twice. Always negative. Hence: diagnosis: severe autism, self injurious behavior, epilepsy, etiology unknown we've come a long way, though...higher titration of Keppra has ironically, put him in an excellent mood lately....go figure.
kgaccount 2 years ago
@kgaccount
Good to know Keppra seems to be working- Dravet Syndrome? I mention genes because ideally, for these kids/young adults, it is good to have the DNA kept in a data base to be tested as soon as new candidates are found. We still have on top of this encephalitis, but I am sure this has been considered as well? I do not have answers for my son either. Have you tried ACTH?
Skymaker69 2 years ago
oh i forgot to quote your words
Gregwiatt: When we all go to the big house in heaven...
heaven has become something non existant for me , thats why i said it's wrong...everybody keeps saying "when we go to heaven , everything will be perfect blah blah blah"...dreams
i apologise to anyone who finds my opinion wrong , but thats how i feel...
Noi5eB0mb 2 years ago
Noi54BOmb, it sounds like you have been through some real awful things and trust me, I understand. Though I'm a Christian, there are times with my son, Jamey, that I am without hope. There are nights that are so long and dark (constant head hitting, seizure activity or loud vocalizations) that I think, why God? Why not just take us all? Why torment us? Why so long with so little relief? But then, somehow, the miracle is...we go on. I urge you to NOT give up. You aren't alone in pain and anger.
kgaccount 2 years ago
Thanks for your words...im trying not to give up but its sometimes that i can't help it but to just break down and start crying...you know , its that time when your brain starts "torturing" you , thinking "why did this have to happen to me?" why did i have to go through so much pain and agony?" "do i really deserve it that much?do all the kids that suffer from ANY disease deserve it that much?" but yes , as you said , the miracle is...we go on...it goes away and it comes back...
Noi5eB0mb 2 years ago
although im a christian too , i do believe in God too , im sick and tired of hearing such things as "when we go to heaven blah blah blah..." because we have to look at whats infront of us NOW.face the situation and think" whats my next move?" no just sit there and say such things to the other person just thinking that it's going ot give him some relief....it's just adding more pain to the other person's pain..
Noi5eB0mb 2 years ago
Remember the story in the bible when people ignore the man on the road and just keep walking....finally, a good samaritan stops and picks the guy up, tends to his wounds and brings him to an Inn. That's real Christianity. People carrying other people's burdens. Bringing comfort and hope to people in pain in tangible ways. A meal. A hug. A 20 dollar bill. Of course, we can't all do this, but if we have opportunity, shame on us for walking by and pretending we never noticed other people's pain.
kgaccount 2 years ago
@kgaccount
yeah i remember that story , and you are right.shame on us for walking by and pretending we never saw any pain around us...
i pray for jamie to go better, and me , you, everyone who faces any medical problem should hang on and stay strong
Kind regards , Noi5eB0mb
Noi5eB0mb 2 years ago
@gregwiatt:don't get me wrong , but i rly believe that all this is just wrong...ive seen and gone through many things in my life , my cousin died from heart problems , i almost lost my kidneys , my childhood friend has autism and i can list a million more things...but thats raw reality right there...i REALLY admire the parents' devotion to jamie though , it's just incredible...it's the first time i watch so much love , something that doesn't really exist in my family...:(
Noi5eB0mb 2 years ago
When we all go to the big house in heaven your son will tell you all the things he felt that he couldnt say and thank you for devoting your lives to making him all he can be. I know I will hear my 12 year old son tell me those words even though he is stuck at 3 due to autism.
There is much much more to this...
Your devotion is incredible!
5 stars!!!!!!!!!!!!!
gregwiatt 2 years ago 2
I think your right about classic autism being given to too many children. My son was diagnosed with Kanner Autism. However, his development bears no resemblance to your son's. At the same time, his development far lags those of children diagnosed with AS and they are just as different from him as my son is from yours. There is something going on here that science hasn't figured out. Personally, I don't believe there is much to the GFCF, at least as applies to my son.
christschool 2 years ago 3