looking for info on autism

i dont know. a three year old on a special diet that wont help anyway? Why deny the kid food stuff if it isnt going to help?
he may have stretched bowel syndrome. my oldest had it..and it is typical amongst boys. it isnt constipation..its the fact that they do not like the feeling of going number "two". So they hold it in..and it backs up..until their bowel is stretched to the point they cannot feel if they have to go. But once they feel it coming on...they grit their teeth..hold their legs closed and turn purple to KEEP from going. it does cause tummy aches.
it probably has nothing to do with dairy..or any food allergies, but an allergist can rule that out pretty quickly .
for children sensitive to stimualtion..and differant tactile senses..it can be common.

a stool softner...lots of water..fiber....

__________________
PROUD MOM TO A US MARINE

National Organization for Women

There is some very sound advice here, and the diet thing didn't help us at all. Although very little dairy is allowed on occasion due to an actual milk allergy, which does relate some to behavioral issues. But the gluten free trial we did, did nothing.

What helps the most? Intensive speech, OT, and social therapies. The younger the better.

Also, if there is any trouble getting services through the school, don't hesitate to hire a professional advocate. There was a dramatic increase in effort from the school system when we brought in an advocate.

It's also helpful to obtain more than one professional opinion. Someone suggested we have an evaluation done by a pediatric neuropsychologist. What he diagnosed, nobody else was willing to, and the treatment and professional connections we've developed from that point on have made significant improvements, and much less stress for all of us.

If you want a short cut, I'd start there first. We spent years going around in circles looking for the highly trained and experienced professionals to help us, not to mention lots of cash. It was very frustrating, and none of the typical behavior management techniques worked, although that was the answer we usually received, despite having done those for years unsuccessfully. They just don't work for this.

Medication for ADHD was quite helpful in this case, and took an experienced, highly trained psychiatrist to administer in the most beneficial combination.

Our advocate helped us with private placement, and we're waiting on the opening there, but when we have the placement, we'll be taking him off the medication and they can teach him to manage his own behavior and learning without it.

One local resource we have that can be helpful even across the country is Little Friends Center for Autism. The training we received there in techniques that DO work and WHY they work was one of the most beneficial things we've done.

Also, if your nephew has autism (here it's Aspergers which is much more mild, but still a significant disability socially) they also have visual systems to use to help teach individuals grooming, toileting, shopping, emotional control, and others. They are extremely helpful, cut down on the number of prompts you need to give in managing behavior and help them transition from one activity to the next.

Please keep in mind that everybody wants your money, there are dozens of ways a person could waste their savings looking for answers. Find that little circle of experienced, credentialed professionals in your area who specialize in autism therapy(not alternative practitioners), and you'll see wondrous changes occur.

Best of luck on your journey.

I can second this advice. One thing that is commonly experienced among people on the spectrum is a more intense level of tactile sensation. It can be excruciatingly painful for some when they feel their insides propelling dinner down the line. It can be such a horrible experience for them, that when they start associating it with eating, they'll stop eating to keep from experiencing it again. There is a specific term for it, but I can't recall off the top of my head what it is.

And please, if you do anything at all, please steer your sister toward trained, licensed, medical doctors and therapists. DAN doctors are going to take your money just as easily as medical doctors, who HAVE to have evidence a treatment works before they can administer it. I understand how frightened and angry a person can be after all the horror stories we've heard in the media and on the internet. It pays to put that aside, and seek out the proper treatment.

There is no cure. This is a lifelong disability, and as hard as it is to digest in the beginning, the sooner a person can get past the grief and make the right choices for treatment for their child, the better things will be for all concerned.

Have you helped her get on a list for respite care? It sounds like a good place to start.

Our now 7 yr. old son was miserable the first few years of his life. He screamed non stop, was constipated, had rashes, abdominal pain--he would grab his tummy and scream, and most seriously had seizures of several types and had emotional and psych problems. We went through the steps of specialist to specialist and were prescribed many types of meds. Meds to knock him out through the night and mood stabilizers. He was dx. by a child psych./neurologist with a mood disorder, most probably bipolar at not yet 2 years of age and given more meds. We told drs. we thought he had pain, we asked about food allergies; they told us to we would probably have to resort to an institution by the time he was 7. His moods were severe. He used to bite, kick scream at us and everybody else; we couldn't take him into public as it was too hard on him.

We started grasping at straws and requesting our Ped. to order all sorts of tests. I read and read on the internet and found info. talking about IGG food allergies causing chronic illnesses. I then found one of the labs that tests for IGG food allergies (as oposed to strictly IGE that most drs. test for): http://www.greatplainslaboratory.com/home/eng/home.asp
I figured how could we be any worse off for trying? We ordered the combination IGE and IGG food allergy panel and had blood drawn at the local lab and sent away. The test was $350, less than the cost of a visit with most of the specialists we were seeing. The ped. was amazed when he got the results. Our son tested pos. to a combination of 55 different allergens, some IGE and some IGG. The consultant at the lab said she had never seen such bad allergies before.

We also tested our 1 yr. old son at the same time who came back pos. for 10 food allergies.

One by one I researched the severe allergies and got lists of alternate names that food products might have them listed as and printed up safe lists of food for each one and slowly came up with foods that were safe. His main allergens are soy, wheat & gluten, sunflower and dairy. We focused on these first. It was the end of month one we started seeing results, and by the end of month two we started to see another child emerging; a happy one who started to self play for the first time in 4 years! In the beginning we had a lot of slip-ups and so the results weren't as obivious. But by the end of 5 months we knew right away when we had a slip-up and all his syptoms would come roaring back and would be bad for a week and not completely dissapear until 3 weeks. People couldn't believe it was the same child. So many people came up to me and asked what had changed.

We have now been on this diet for three years and though our now 7 yr. old still has a bit of emotional problems and trouble socializing with children, but not adults, he is so so much better off. And yes, he still has symptoms if he has a slip up.

This is just what happened in our case and I know everybody is different. I just wanted to share my story.

__________________
A Colorado cattle ranching family

http://www.edmundsonherd.blogspot.com

http://www.edmundsonranchgrassfedbeef.webs.com

here is some information on great plains laboratory....not very flattering to say the least...

http://www.foxnews.com/story/0,2933,2380,00.html
<snip>
As it turns out, dysbiosis is a quacky concept promoted by alternative medicine industry. Dysbiosis is not recognized by mainstream medical experts.

William Shaw, Ph.D., who runs the Great Plains Laboratory, reported that the child had elevated levels of yeast by-products, indicating a "yeast/fungal overgrowth of the gastrointestinal tract." Dr. Shaw says such yeast infections cause autism.

Even giving Dr. Shaw's theory the benefit of doubt, the bacteria found on the Playtex cup was not the same kind that was found in the child.

Though these "experts" have no credible evidence that "dysbiosis" or yeast cause autism, they exploit the circumstances of autism.

Autistic behavior becomes apparent as children enter the stage when they go from saying a few words to generating more complex and communicative language, between the ages of 16 months to 36 months. Though the damage leading to autism is genetic or occurs very early in pregnancy, the condition isn't noticeable until development doesn't progress normally.

Parents whose children "turn" autistic often associate the onset of disease with some event or environmental exposure after birth. Though years of intensive investigation has failed to discover any sort of post-natal cause, so-called experts like Drs. Cave and Shaw exploit the parents' understandable and desperate search for a cause of their children's autism.<snip>

Great Plains laboratory (and others of this same ilk, i.e., Great Smoky Laboratory) use a suite of dubious mail-order tests to "diagnose" all manner of conditions....the fact that Great Plains also sells a line of supplements to correct any of the myriad of problems they will undoubtably discover is another indicvation that this is a fraudulent practice......

We know there is no CURE for autism.I must say most of the info i find online does NOT claim to cure autism.
It helps with problems assosiated with it.
If you have a allergey you would take or aviod thing to help it wouldn't you?
Why is it so hard for people to think all kids are different and what works for one I am well aware won't work for all.
The amount of politics involved with autism is shocking and SAD!
With so many kids being diagnosed you would think people would be screaming about it ! You would think it would be getting funding and research.
Sad to think so many kids are suffering because people in charge can't agree on how they got it.

Soo if anyone has seen a DAN! Dr and would like to talk to me about it please feel free to PM me.

The Dr we are hoping to see is a REAL DR with a degree and everything.
I do know you are trying to help but we are not stupid or grasping at straws here. Just looking at everthing available to help him. He deserves that!
And I strongly beleive as most DR's should" First do no harm"

I've never heard of DAN!, so can't help you with that. But it would have helped my autistic 28-y-o daughter if she'd been on a gluten-free diet when she was little, as she had, and has, celiac disease. She had the symptoms up til age six (when children commonly outgrow the symptoms, although not the underlying problem); I asked Dr.s about her symptoms and none of them suggested celiac. But many years later my mother was diagnosed with celiac, and then I found out I had it, and realized that that was my daughter's problem also. Whether or not it would have helped with her autism to be on a gluten-free diet sooner I don't know, but she would probably have been healthier.

She also has the serious constipation problem, and is on prescription stool softeners for that. I've known other children who had to be on those for the same reason (and not because of psycho moms --- they really had serious constiption problems); half of them were girls, so I don't know about that syndrome some boys supposedly have. I'd never heard of that before. In my daughter's case, the fact that she also has lupus might have *something* to do with the constipation, but on the other hand , she had the constipation long before we found out about the lupus, so maybe it's because of the autism. I don't know. She doesn't have good muscle tone, never has had, and if that's affected her insides like it has the visible muscles, that could be the cause.

Temple Grandin (who I also recommend you read) recommended anti-depressants, although I don't know if that would be a good idea for such a young child. My daughter has been on Zoloft for two or three years now and it has DEFINITELY helped. Between the stool softener, the Zoloft, and plaquenil for the lupus, she's a MUCH happier and more pleasant person. Once in a while I still have to give her tylenol or ibuprofen for pain, but she used to need it nearly every day.

I have a Temple Grandin book out of the library -- haven't had time to do more than look at the table of contents so far, but it's called The Way I See It. Anything of hers is going to be helpful. She is autistic, but high-functioning enough to have finished college, and runs a business. Her books give you an inside view of autism.

Kathleen

Hi there!

ITA that wading through info on the internet is daunting. My dd was diagnosed this past March with high-functioning autism. We got her in to be tested with a pediatric neurologist who specializes in autism and autism-related disorders. We will continue to see her once a year to guage progress with our dd and to have input from her (the doc) about areas we need to focus on.

So, that being said, to me getting the diagnosis is the first step. And I would get the disgnosis from someone more specialized than the pediatrician. Speech and occupational therapy have been IMMENSELY helpful with our dd. A year ago, our dd couldn't dress herself, still had tons of bathroom issues, had severe echolalia (almost none of her speech was *original*....if you asked her a question, she would go into a 5-minute recital of something you read to her or a conversation she heard or something she saw on tv), she did not play with other kids. She loved being around them, but it was like she didn't know how to play/interact with kids her age. Today, she can dress herself better than the kids in her class, including buttoning. About the only thing she can't do yet is tie her shoes. She has lost all the echoing except for during the times she is playing (for example, she will play with her stuffed animals and go completely through the first 15 minutes of her normal classtime....the calendar, the weather, prayer, the Pledge of Allegiance, etc). She is doing role-playing (kitchen, playing *mom*, etc), she is playing wiht other kids and has formed some good little friendships with her classmates. She is totally a different kid than she was a year ago. We worked ALOT with her at home, following the lead of the therapists....we continued at home with things that would help with her speech, with her fine-motor skills, etc.

The thing that dh and I had (and still do!) the hardest time with is understanding what's going on in that head of hers....how she perceives the world around her. What has helped is reading things from other people with autism. The Wrongplanet website was invaluable to us when she was first diagnosed. It helped immensely to read posts and stories from people who are autistic...helped us to understand her better. While I don't agree, for my dd and her treatment, with alot of the htings on the internet, it IS a great source of info and a great way to come up with questions for your doctor. But I agree with using the reputable websites (Autismspeaks, etc) for a basis for information. And, it's always good to remember that what works for one child may not work for another, and visa versa. Our specialist gave us a list of bloodwork to g et done (although we haven't because it was NOT a pleasant experience when we went in to try to get it done) and I do now that celiac disease was one of the things they were going to test for. Certainly doing a GFCF diet is something that your sister can try. I do not discount GFCF diets because they have improved the lives of many kids with autism and things like ADHD. And since doctors still can't decide what causes/doesn't cause autism, I am not a proponent of discounting non-invasive, safe *treatments* just because they are not in a medical journal. I am NOT a proponent of risking the health and well-being (whether that's physical, emotional, or mental) of a child to make him/her **normal** by the standards of society. Having a child with autism has rewards that people with *normal* children do not get to experience. I can still remember the first time my dd crawled into my dh's lap and said *I love you Daddy*...and I will never forget it. Things like that are so precious.

Your sister is in a good position to have caught it at age three. Our dd was nearly four-and-a-half at diagnosis and still has made such fantastic progress. Also, if your sister has some problems with second-guessing, etc, there are mentors available through the counties that can help her with this...at least we have that here in Ohio. And any Autism group, I am sure, would be more than happy to have someone help her out when it comes to deciding on treatment courses, things with IEPs and school, etc.

Good luck to your sister and her son! I wish them al lthe very best :-)
Shawna