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12/19/08, 06:53 AM
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Join Date: Jul 2007
Location: central newyork
Posts: 333
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looking for info on autism
My sister was just told her son is.
We are looking into the no dairy-no wheat diet.He is taking a fish oil supp. now because he has bowel issues.
If anyone has any suggestions on books or things we should look into we could use the help.
It's all a little much to wade threw.There is tons of info on the web, but some is a little far fetched soo, if you could give us some direction it would be great.
If you use the diet, we could use help there too!
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12/19/08, 09:39 AM
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Join Date: May 2002
Posts: 2,195
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Hi - It is tough right after the diagnosis. Our oldest son is 8, and he's autistic, and doing very well, but it is different. What I always say is that its rather like going to the shelter to get a puppy and coming home with a kitten - life works best if you give up the assumption that the "puppy" is going to bark and walk on a leash, and just enjoy the kitten. That's not to say you can't and shouldn't have strong expectations, just that the kids can be appreciated in their own rights.
The best books to start with are Temple Grandin's - she's an autistic adult and she has a lot of insight. _As I see It_ is very good, and _Thinking in Pictures_ will help you a lot.
I can't help on the diet - we tried that diet and the Feingold, and they didn't help in our case. The fish oil does seem to, and we do that too. We also find that it is hugely important that Eli get a fair amount of physical exercise - don't let him become a couch potato. That leads to sleeping issues and stress all around.
Our son attends a school for kids with autism - one of the things that I think is most urgent is that the child get into an intensive program with speech, ot and pt. The more you can do early, the better. It doesn't have to be ABA - some kids respond well to ABA, others do better with other programs, but you want the boy to get right into a program with people who know what they are doing. Don't let anyone scare you into thinking that ABA is like sending the kid to work in a factory - if the place is good, they'll let you see and the kids will be having fun.
Your area almost certainly has an autism society - get in touch with them and ask if they can give you the number of a few parents in your area to talk to. They'll know the doctors, the school programs, etc... and can give you some idea of what's out there. Also, there are usually support groups, and that's really good for the parents.
For me, it has been important to remember that I got this really cool kitten - rather than to dwell on what I had hoped he might be. My son is sweet, funny, good natured and growing and progressing beautifully - I only wish the same for your nephew and all your family.
Sharon
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12/21/08, 11:59 PM
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Join Date: Mar 2003
Location: Oklahoma
Posts: 3,179
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My grandson is autistic and he's 11 now.
There is a supplement called "Bcalm" that works really well for kids that also experience ADD along with the autism.
I thought the book Thinking in Pictures was a good one too. I lent it to a friend who found out his son is mildly autistic.
I think my daughters biggest problem with my DGS has been potty training. He still has accidents and sometimes he gets so busy playing he just forgets to go to the bathroom. She has days when she's pretty stressed out, but they've managed pretty well all these years.
He was born 3 mos. premature and I believe his nervous system just never developed correctly.
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Vickie
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12/22/08, 12:06 AM
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Join Date: Dec 2008
Location: Illinois
Posts: 8,246
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Hi there!
My son has Asperger's and my daughter has SID and NLD. Last I heard, research does not support milk-free, gluten-free diets for those with autism.
I'd check out Our-Kids. It's an online support group for the parents of children with disabilities. You also may want to check out the yahoo mito group. Research seems to suggest that many with autism plus (autism with other health problems like GI problems) may have a mitochondrial disorder.
www.our-kids.org
www.umdf.org
Mito-subscribe@yahoogroups.com
Laura
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12/22/08, 12:31 AM
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Domestic Engineer
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Join Date: Jun 2005
Location: Back to the other side of the rainbow!
Posts: 705
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We use Kirkman's Super Nu Thera for our Aspies here. No dyes in our food, at least as much as possible.
Have a vit/mineral analysis done. Get those done through a DAN dr or a holistic dr. They can do those 3 ways - blood, hair, and urine.
Agreeing with the Temple Grandin books.
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12/22/08, 07:32 PM
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Join Date: Nov 2008
Posts: 115
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It is the gluten free dairy free diet you are thinking of and whether scientist are willing to consider researching it without bias or not, I think it is worth a try...the worset thing that could happen is that your child is physically healthier with the same disability. JMO please folks no head biting 
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12/22/08, 07:57 PM
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Singletree Moderator
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Join Date: May 2002
Location: Kansas
Posts: 12,928
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My son has aspergers: it is a very mild version of autism.
I think it is important to remember what my older brother once said: for every thing that is taken away, something else is given. It does work that way with my son.
Yes, when he was in third grade he recieved lessons on what facial expressions meant. As in "A smile means happy". Yes, he has seen more therapists than I intend to add up.
But, for everything that was taken, he has something else that he is excellent at. He was slow to read, but at age 14 he reads books that are 600 pages long, He writes at a 16 year old level, according to the school tests. His artwork is impresssive. He sees things in the world around him that are unbelievably subtle and insightfull (even while he misses the obvious)!
He is at grade level in school.This might change: every year is an adventure. Some years he barely passes with D's and one year he was on the honor roll. He switches off between A's and F's: depending if the classes are heavy on his strong skills or on his impaired skills.
He is a fine young man. I wonder, sometimes, what he will do when there is no family with him to say "UMmm, you really need to do this. They will expect it". Because, most young men will want to move out, and he will want a job and a car and an apartment at the same age that his peers do.
Advice? Do the therapy. The therapists check them for weaknesses that you would never guess that they have.
Last edited by Terri; 12/22/08 at 08:00 PM.
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12/22/08, 08:56 PM
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Join Date: Dec 2008
Location: Tennessee
Posts: 84
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I can't help with the dairy-free part, but I am gluten intolerant and strictly gluten-free. I'd be happy to answer any questions you have concerning that. If your sister goes to www.celiac.com, they have a wonderful and active forum. There are many people on the site who are both gluten and dairy intolerant and can offer advice on safe products, recipes, etc. They could also point you to forums dealing with autism and the gluten/casein-free diet as many parents on the forum utilize the site for their children as well.
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12/22/08, 11:11 PM
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Banned
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Join Date: Oct 2004
Posts: 2,230
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I would take the majority of the information you find on the internet with a grain of salt. It is a difficult and arduous task to wade through all the misinformation when it is presented in a manner to appeal to your emotions. If it sounds like a conspiracy theory of suppressed 'cures, or treatment regimes that claim miraculous results, or any other claims that may sound too good to be true or pointing to a conspiracy run from it like it is the plague.
Books can contain good information or very bad information...anyone can publish a book since it does not undergo any review of the claims being made....that said if you are going to seek out books for information perhaps the best one you could ever start with is Paul Offitt's book....."Autism's FAlse Prophets".
without being able to substantiate the efficacy of rigorious regimes (diet, chemical treatment, ect) I would sugggest that you not subject the child to any unproven therapy. In other words if there is no evidence that restricted diets help a autistic child then do not subject them to the diet.
There are many claims of 'cures' out there for the autistic child and the one thing they have in common is that they prey upon the desperation of the parents.......when you come across these claims ask yourself the question "has this been published in the medical literature as a case study' and if the answer is no there is a reason that it has not been.....and that reason is that the claims are unsubstantiated and would not stand up to a rigorious scrutiny,
Paul Offitt's bio
http://www.med.upenn.edu/immun/offit.shtml
http://www.med.upenn.edu/immun/offit.shtml
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12/23/08, 07:04 AM
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Join Date: Jun 2007
Posts: 262
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Quote:
Originally Posted by BobK
I would take the majority of the information you find on the internet with a grain of salt. It is a difficult and arduous task to wade through all the misinformation when it is presented in a manner to appeal to your emotions. If it sounds like a conspiracy theory of suppressed 'cures, or treatment regimes that claim miraculous results, or any other claims that may sound too good to be true or pointing to a conspiracy run from it like it is the plague.
Books can contain good information or very bad information...anyone can publish a book since it does not undergo any review of the claims being made....that said if you are going to seek out books for information perhaps the best one you could ever start with is Paul Offitt's book....."Autism's FAlse Prophets".
without being able to substantiate the efficacy of rigorious regimes (diet, chemical treatment, ect) I would sugggest that you not subject the child to any unproven therapy. In other words if there is no evidence that restricted diets help a autistic child then do not subject them to the diet.
There are many claims of 'cures' out there for the autistic child and the one thing they have in common is that they prey upon the desperation of the parents.......when you come across these claims ask yourself the question "has this been published in the medical literature as a case study' and if the answer is no there is a reason that it has not been.....and that reason is that the claims are unsubstantiated and would not stand up to a rigorious scrutiny,
Paul Offitt's bio
http://www.med.upenn.edu/immun/offit.shtml
http://www.med.upenn.edu/immun/offit.shtml |
But how is trying a diet hurting when it just may help. There may not be any published medical openions on it but. Hunderads of parents claim it helps.
I can see not subjucting your child to electro shock therapy on a whim but a diet. Come on these parents are grapsing for anythign to help thier children
And I also believe the medical community is nto alway upfront about everything. Even more so when it comes to something new
just my 2 cents
By the way I know personaly and have seen several families that have gone wheat and dairy free with Autistic children and I have personally seen an improvment
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12/23/08, 08:22 AM
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Join Date: Mar 2003
Location: Oklahoma
Posts: 3,179
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[QUOTE=BobK;3512736]
There are many claims of 'cures' out there for the autistic child and the one thing they have in common is that they prey upon the desperation of the parents.......when you come across these claims ask yourself the question "has this been published in the medical literature as a case study' and if the answer is no there is a reason that it has not been.....and that reason is that the claims are unsubstantiated and would not stand up to a rigorious scrutiny,[QUOTE]
There is no magic "cure" for autism, but there are things that help the kids and in turn can lighten the stress for the parents.
If you don't try, you'll never know.
And - if scientists never experimented, we'd never have all the wonderful therapies and medicines we do today.
I understand your caution, but natural diets can be good for people - even those who don't suffer from a disease.
So, all we're asking as those who live with and take care of those with autism and aspergers -
PLEASE do not discourage HOPE with negativity. Remember, many scientists were thought to be mad in their own day, but if not for them, we'd still be led to believe the world is flat and their would be no cure for Polio.
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Vickie
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12/23/08, 12:36 PM
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Join Date: May 2002
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I don't object to trying diets, but I would note that making kids who are already different unable to eat with other people (a major social connecting ritual) easily, does come with a price. Sure, try the diet - but unless you see dramatic results, I'd definitely come down for a healthy *normal* as opposed to restrictive diet. And if you are going to adopt a diet simply because it can't hurt, I hope your whole family will adopt it, not just the autistic child. The reality is that people eating together and sharing food is a powerful social connector - if your child had a real physical intolerance for a food, that's one thing, but it is hard enough for autistic kids to have playdates and go to birthday parties without singling them out to eat their gluten-free, dairy-free, sugar-free whatever while everyone has birthday cake.
Don't misunderstand me - I'm not criticizing those who see real, substantial improvement. But I've known too many autistic families who subject their children to diets simply because they've been told they should, with no real change in function.
Sharon
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12/23/08, 12:45 PM
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My kids have hooves
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Join Date: May 2007
Location: Central Virginia
Posts: 2,224
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Excellent post, BobK.
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Beth ~ Old Church, VA
3 Nigerian Dwarf goats, 4 cats, 3 Pekin ducks and 7 chickens. One very patient husband~
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12/23/08, 02:27 PM
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Banned
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Join Date: Oct 2004
Posts: 2,230
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Quote:
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But how is trying a diet hurting when it just may help. There may not be any published medical openions on it but. Hunderads of parents claim it helps.
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if there were any indication/evidence that there is a nutritional deficiency or food allergies as a cause of the multiple syndromes collectively known as autism it would be present in the form of documented case studies. This is not the case and appealling to the fallacy of popularity is not a very good reason to subject a child to a restricted diet.
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I can see not subjucting your child to electro shock therapy on a whim but a diet. Come on these parents are grapsing for anythign to help thier children
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Exactly...parents often subject their child to some quite horrific treatments in their desperate attempt to 'cure' their child.....these include chelation and chemical castration at the hands of fraudulent and/or misguided individuals preying on the parents desperation. Desperation is not a valid reason/excuse to subject a child to 'treatments' that have, basically, a zero probability of having any success.
evidence-based medicine is very accepting of new therapies and treatments.....one simple requirement is the presentation of evidence and this has been requested of the many claimants that are out there hawking their pet hypothesis to the desperate parents and they have failed to provide any such documentation. The reason being is that they don't have anything of any substance and based on that should not be considered as reputable sources of information.
parents are also not very objective in their assessment of what constitutes improvement....here is an example of a doctor who has a son with autism...his story contains nearly all of the alleged cures, as well as the desperation of a caring parent, that are omnipresent on the internet........his story is not only a very good read but contains a very good take home message.....
http://www.autism-watch.org/about/bio2.shtml
Last edited by BobK; 12/23/08 at 02:29 PM.
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12/23/08, 02:34 PM
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Join Date: May 2002
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I have celiac disease and also dairy allergy. I think the gluten/dairy free diet became popular among the autistic community because 10% of autistic folks have celiac disease. I'm not sure why being gluten free would help if the autistic child didn't inherit the genetic predisposition to gluten intolerance?
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May all your weeds be wildflowers.
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12/24/08, 09:39 AM
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Join Date: Jul 2007
Location: central newyork
Posts: 333
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Boy !!
It is amazing the reaction you get to a simple question.
He has already stopped dairy and his stomach is a little better.
I really don't see why the medical community is so against trying the diet, when their more than willing to give kids meds that are not tested to be safe for kids
Lots of kids with allaergies live on it fine, even if it helps alittle it would be worth it.
I'm not very happy with DR's right now!!
My sister lives out of state. She has some learning disabilies her self, so second guessed herself when she knew something was wrong
She out right asked the Dr several times if her son could be autistic because of the problems he was having." Ohh hes's fine. I'd be able to tell if he was" same dr was treating him for lead poisioning (link to autism?) and overdosed him on iron.
he is starting shcool with easterseals in Jan. so he is getting help. I found a DAN! Dr who we hope will see him soon too.
He just turned 3 this week. I think if we can get his tummy right things will get better. Alot of his problems seem to me to be pain related. He gets soo connstipated that he is grinding his teeth horribliy all the time. After he finily goes he's better for a little while.
Has anyone done the DAN! stuff? I'd like to know a little more about it.
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12/24/08, 10:48 AM
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Banned
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Join Date: Oct 2004
Posts: 2,230
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DAN protocols and DAN doctors subject children to unsubstantiated and dangerous 'therapies' which they allege cure children of autism. These cures have never been documented and should be considered nothing more than stories out forth to appeal to the emotions (and wallets) of desperate parents.
Before subjecting a child to such dangerous (and unfounded) therapies ask to see documentation of the alleged cures and ask why they have not been written up and published within the medical literature........grasping at straws in desperation is no reason to torture an otherwise healthy child with dubious treatments. Being upset with the medical community (for whatever reason) is also not a reason to subject a child to unproven, questionable, and dangerous treatments which have zero probability of achieving any success.
here is the story of one DAN doctor who ended up killing the child he was treating.......a sad story to say the lease...
The complaint against Dr. Roy Kerry, negligent killer of Abubakar Tariq Nadama
Category: Alternative medicine • Autism • Medicine • Quackery
Posted on: November 7, 2006 9:01 AM, by Orac
After not having written anything about the case of Abubakar Tariq Nadama, the five year old autistic boy who died as a result of chelation therapy administered to him to "cure" him of his autism, I revisited the case last week in light of the State of Pennsylvania filing charges against Dr. Kerry, the "alternative medicine" practitioner who delivered the lethal dose. I've now gotten a copy of the full list of charges, and it makes for some interesting reading if you can stand all the legalese. (The charges can also be found here.)
Here's the note in Tariq's medical chart from his initial consultation with Dr. Kerry:
We don't have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding 10 other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.
Note that Tariq had been subjected to ten different other forms of what was almost certainly non-evidence-based "therapy" before his parents found their way to Dr. Kerry's office. Sadly, this is probably not atypical of parents so desperate for a "normal" chld that they will allow themselves to be seduced by any dubious treatments that come along. In addition, to me this sounds as though Kerry never treated a child with IV chelation before. There's a saying in pediatrics: "Children are not just little adults." It's bad enough that Kerry was giving chelation therapy to treat autism, an indication for which it is most definitely not appropriate, but he didn't even seem to know the dose for a child of Tariq's size!
The note continues:
We therefore checked him to it ... But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman's recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we'll treat him with a 20-kilo child and give 1 gram of EDTA. We diluted it 1:1 with saline. Started the IV with saline. After a good blood flow in the right antecubital fossa with 3 other assistants and mother controlling him and the papoose board. Had a good TV return flow. We then introduced the EDTA. Checked return flow frequently during administration. Gave the IV over approx. 5 minutes. Then rinsed with saline. He had no difficulty toleration it. No infiltration occurred. We'll have mother collect the urine for 12 hours. The most important are the first six hours for toxic and essential minerals. When we get that report back we'll proceed with further injections as indicated on approx. a weekly basis. Recheck the levels in 4-6 lV's depending on his response ... Initial impression: Autistic Syndrome, Heavy Metal Toxicity, Candidiasis, Multiple Food Allergies ... Roy E. Kerry, M.D.
Odd, there's no mention of mercury, even though this was also in Dr. Kerry's notes:
wants to have iv ... edta injection ... an iv push. mother states Tariq is autistic due to immunization shots he was a normal pregnancy .. 1st shots were given the day he was born ... no sx noted until age 18 mo ... has had 12 other inoculation by time he was 18 mo old/...
Indeed, for the most part, all we see in the notes are mentions of lead. It just goes to show that, should the mercury militia finally be forced to accept that the evidence just doesn't support their belief that mercury in the thimerosal used as a preservative in vaccines is the cause of autism, there'll always be another bogey man in vaccines that will be blamed, as I mentioned over a year ago. The mercury militia is just a manifestation of a larger antivaccination movement.
<continue reading here>
http://scienceblogs.com/insolence/20...erry_kille.php
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12/24/08, 11:29 AM
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Banned
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Join Date: Oct 2004
Posts: 2,230
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I would also suggest checking out the credentials of anyone who you are going to trust with a childs diagnosis and treatment.....many individuals who claim to be DAN! doctors do not hold medical degrees of any type and their training often consitutes nothing more than an afternoon seminar.....there are numerous websites available that you can use to check out a doctors credentials and status with his/her licensing board....that is you can also review complaints and actions taken against the doctor and how it affected his/her medical license.....of course with an individual who has no medical training or license you are at their mercy.........
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