Special Diet & Volume Control - Please Help!

I have volunteered a few times to shepherd an autistic boy in my religious community, V., so I have at least a hint of what you are coping with. I don't have enough experience to offer you advice, but I have had as my personal physician a terrific doctor in Oregon City who has been specializing in autism from an environmental/whole body point of view for several years.

Dr. John Green III is a warm, gentle person with a knack for listening and a heart of gold. If you are less than confident in your current pediatrician or would like to expand your support team, you might consider contacting Dr. Green. (I don'lt know if he's accepting new patients at this time.)

Here's an article he wrote that will give you a sense of his philosophy: http://www.autism.com/treatable/recovered/drgreen.htm

I wish all of the best to you and your family.

I would go to www.mothering.com and look for some of the resources there. There have been many success stories and through the forums you can connect with other moms who have a ton of knowledge. What I have personally seen through my own customers is a connection to toxicity with many of the children, so special diets have helped some, many have improved by switching to organic mattress and bedding, organic foods, natural cleaning products etc. Avoiding chemicals as much as possible helps them detox. And then some people go through an actual detox/cleansing program as well to help them.

A.
www.punkinbutt.com

I was diagnosed with celiac's disease about 6 years ago. When I changed my diet I lost 148 lbs in a years time and have since kept it off. I was always an over weight child (from about 6 on) and my Mother and Grandmother have always fought their weight. Diets never worked because we were still eating gluten. My Grandmother recently passed due to pancreatic cancer which is now being linked to celiac/gluten intolerance. Gluten to me is evil. I have of course talked to many people about this and have found so many benefits to not having it in a diet. People have relief from depression, irritable bowel syndrome, arthritis, energy levels increasing.... the list goes on and on.
I would not worry about the idea of your kid not getting enough nutrients from a gluten free diet, in fact, the nutrients he will receive will be from whole foods rather than processed. You just have to be inventive with food choices.

A good website for children is:
http://www.celiac.com/articles/563/1/ROCK-Raising-Our-Cel...

From there you can find many other resources. It is a challenge to try different products and even to find some that taste good. Some say they are gluten free, but really are not. Reading the fine print is key. Eating out is a nightmare, but you will find that you are eating better by making informed food choices. Once you make the change you will notice how many foods are really toxic.

Sorry for the rant... but I am an advocate for a gluten free lifestyle. It would really benefit your whole family. Most people, like my family, were not able to refrain from eating breads, cereals, etc... that is why they are still sick. Gluten intolerance is a hereditary disease.

Also, I would check into vaccinations. They are linked to autism as well. Another good website for vaccinations is:
www.mercola.com

Please let me know if I can help you in any way.

My twin sons with Autism are 13, and have been on a gluten free/casein free diet since they were four. It has helped TREMENDOUSLY, especially with behavior issues. We used to have a lot of sleep issues also but not anymore (unless they are sick or something but any kid has that). I'm not saying it's a cure-all but I can say for us it has been VERY successful. It's especially evident when they accidentally get something (usually at their dad's house on the occasion they go over) and then they are very different-one is very agressive and slightly out of control and the other one is either REALLY giggly or really weepy, again out of control. Ironically a lot of my family has issues with gluten-my two younger brothers and myself cannot have gluten and I personally have been diagnosed with dairy intolerance (not just lactose, all dairy). If you have a good doctor that would support you, then I think talking to him/her would be good. I will admit I didn't with the boys, as I just thought I'd give it a try as we already had allergies in our family and the difference it made was evident within a week, although a lot more obvious after a month or two. The boys have come very far, and amaze me on a daily basis. I have two other children also (fifteen year old boy and ten year old girl) and sometimes I feel like they are more of a challenge, lol. Let me know if you need anything, any information/support, or whatever, I am here for you!!! Looking back and seeing that you are worried about nutrients-taking out dairy can make people worry about calcium but not only does soy milk/rice milk or other dairy substitutes have calcium in them, but so do a lot of other foods. OH, and my twins because SO much less picky after the switch. They eat a big variety of fruits and vegetables and it has been really great this year as we have had a garden. :) They really are the healthiest kids I know and very rarely get sick-maybe a cold a year but usually it's gone in a couple of days. (Wish I had that resistance-I usually end up with it for two weeks!!) I think it helps a lot of issues, including the other ones you mentioned-the lack of empathy, volume control, etc. Also, maybe making a game out of things, or finding a way to teach an "inside voice" might help. Again, I don't want to say that the food thing is a cure-all but I know a lot of people that have tried it and it really helped them. Please contact me if you need help. Starting now is a LOT easier than it was nine years ago as there are not only a lot of ready-made products but also a lot more cookbooks. :) Please feel free to contact me if you need any help. :)

Hugs from a mom who has been there,

C. :)

I've read lots of good stuff in Mothering Magazine over the years about this; you can search their website mothering.com or (what I do) pick up a copy at your local natural foods store whenever an article of interest is on the cover.

One autism article lead an interesting and very logical path between improper inflammation (immune) response and autism ... and as I recall positted that this might be part of the connection with modern wheat and cow dairy (harder for our bodies to deal with than more prehistoric foods?) and heightening of autistic symptoms. (Lots of "our family got better when we cut these" anecdotes, too.)

They also listed, almost in passing, vitamin B-6 deficiency as something families could discover, fix, and see marked improvement in functionality ... I remembered that because my then-baby had had an unexplained drop in B-6 levels and I got this whole scare-tactic (but accurate) spiel about "in 6 weeks this causes irreparable neurological damage," and so seeing it implicated by the autism families in their children's difficulties stuck in my brain.

I am watching my family and getting ever closer to considering really facing the celiac research. And the food coloring research. And the PBA (or whatever is that plastic nasty stuff) research. It is always something ... gluten and dairy are big big changes, though, and kudos to you for looking into them, and good luck and God bless as you work to make the changes. I hope some more knowledgeable moms hook you up with the good, committed support groups.

Hi V.~
I do have a daughter that has autism and I have tried the diet. I took careful notes about her behavior from start of the diet. We did it for about 8 months and I seemed to notice that her behavior was getting better, but I also had realized that in the 8 months, she was starting to adjust to the changes in her life. We moved three times, had a baby brother added to the family. She was not eating hardly anything and I was so stressed out that she was so tiny and let her finally eat regualar foods. She gained 2 lbs in two weeks!!! I was so happy and she did not seem to have more behavior problems. I have noticed that her behavoir problems get worse when changes are occuring. Things like little brother is now talking and every other milestone he hit she has gone nuts. It is differnt and she can't take that. She is 5 btw and she is high functioning. So, for me, I would not do the diet again. It took my almost a whole year to go back to her infancy to realize she was different. She did start to talk and do things that I thought were right one track, but she also did things that I now know were not quite right.
As for empathy, we can strive to teach them when they are young, but child with autism do not understand anything that is abstract. So, feelings are a very tough thing to learn for them. Waking up at four must be very challanging for you. If this is a constant thing, as your dr about giving him melatonin ( though it is for sleep on-set) I recenlty took my daughter to see a sleep specialist and I dont know why on earth I waited so long to see one!! The best thing ever. Kids with autism like to control what they can because they might have sensitivites to sounds and smells and so on and so forth, so for him he may just be trying to control what he can... Sorry this is so long. If you want, feel free to email me. I hope for the best for you.
B.
____@____.com

Hi V. -
There are a lot of good resources on the GFCF diet. Try these sites :

www.gfcfdiet.com
gfcf-diet.talkaboutcuringautism.org/gfcf-in-10-weeks.htm

Your son's doctor, sorry to say, is not likely to be a lot of help with this. Mine at least didn't stand in my way or tell me I was crazy. He encouraged me to give it a try, but wasn't much more help than that. The trick to doing GFCF successfully is to read, read, read, and then read some more. There are some really good books out there as well, such as "Special Diets for Special Kids." Does your son have GI/bowel problems (either diarrhea, constipation, or both)? Many "spectrum" kids do, and the diet can certainly help a lot! As for meeting his nutritional needs, it can be done on GFCF. Just make sure (if you can) that he eats fruits and veggies, stay away from artificial colors and flavors, and get him on a good multivitamin (Kirkman's Super Nu Thera is what we use).

I know you said your son goes to therapy. Does he receive OT? That person should be able to give you some help with the volume issue. The biggest help with my son was modeling a quiet voice for him when we were somewhere where he needed to be quiet (but I will be the first to admit it didn't always work).

One more...have you tried melatonin for the sleep issues? It might be worth asking your doctor about. It worked wonders for my little guy. Kids on the autism spectrum don't seem to produce enough melatonin on their own and often have sleep issues.

Good luck to you! I wish you and your family all the best.

The best autism program on the West Coast is in Eugene Oregon at the University of Oregon. People come from all over the world for it.

Deep tissue work like Rolfing is the best to overcome Cerebral Palsy. It really works.

You need a top notch homeopath. This means no graduate of the Naturopathic College in Portland. You need someone who has studied with Sankaran in India. Not a student of someone who has studied with someone.

I tell you this as a professional in the health field. Google me you'll see I am not exaggerating.

If you want to contact me please do so. I will give you referrals to the best people. You and your family deserve the best the first time.

You didn't say where you live, but if you are in the Tri-Cities, you can use T.N.R.C. (The Neurological Resource Center). It has a library and support groups that can help you. There is also an Autism group here, too. Some of the symptoms you described also sound like Asbergers Syndrome. He's lucky to have a mom like you.:>)