Re: it is driving me crazy

December 30, 2010

Rosie,If you are not already a member of the autism-mercury group, I suggest you join. the first thing you would need to do is get a DDI hair test to see if your son is mercury toxic, and then I would consider doing the AC Protocol for chelation if the test shows your son is mercury toxic (which I bet he probably is).

You said you went gluten free. Have you thought of going casein and soy free, as well? We are gf/cf/sf here, and we saw the largest progress by removing soy from our child's diet.You might want to consider trying L-thianine for the non-stop talking. There is a spray of it you can probably get from your DAN!. However, I want to urge you to neither allow a chelation challenge test nor IV chelation. We did do IV chelation, but are now convinced this is dangerous for our children. I will put information below concerning the AC Protocol for chelation. It is low and slow, and it does require commitment. Since our son is sulfur sensitive, we are doing ALA only, which must be dosed on its half-life of every 3 hours around the clock for three days (72 hours). I believe some with kids in public school dose it a little shorter or they do it every other weekend rather than every weekend.

It is just something to consider. Be sure you have totally eliminated sugar from your son's diet. Sugar does a lot of bad things --mostly it just feeds bad yeast and bacteria in the gut, and is a huge culprit of hyperactivity.

When your son " talks and talks " is he repeating the same thing over and over? Is it scripting? Is it echolalia? It is meaningful speech?We have had good success with L-thinine and excess stimming, but this won't solve the problem comletely. Usually we have to find the true culprit and treat that such as yeast or some gluten or casein that was hidden in some food.

Do you give him enzymes before each meal and snack? these, too, helped our son tremendously.Below is some info the A-M group passed on to me:

Interesting link. This sums up low dose chelation.

http://livingnetwork.co.za/chelationnetwork/chelating-children-safely/

Safely chelating children with Andy Cutler's oral chelation protocol

1. Do my kids need chelation?

Andy Cutler's books for order

Mercury toxicity is commonly found in children with developmental delays, ADHD, Autism, PDD-NOS, Aspergers, Apraxia/Dyspraxia, mood disorders and other health problems. One of the best, least invasive ways of testing for mercury toxicity is to get a hair test through DDI and this can be achieved without a prescription by going through Direct Labs. The hair test will help you determine if there are excessive metals in your child, although it is not always conclusive, and signs & symptoms and trial chelation need be to considered in the diagnosis. For help in interpreting the hair test, obtain Andy Cutler's book, Hair Test Interpretation: Finding Hidden Toxicities and consult Frequent Dose Chelation Yahoo group for help in determining if metal toxicity is a problem. Often a trial of proper chelation, as per Andy Cutler's protocol, is the best way to ascertain if there is a metal component, since you expect some response from chelators if metal toxic –

which can be improvements in symptoms or side-effects. Mercury in the brain, will not go away without chelation, and can be made worse with improper methods of chelation e.g. chlorella. Please become informed before you begin this process.

2. What is Andy Cutler's chelation protocol?

Andy Cutler is a PhD biochemist who experienced mercury poisoning from dental fillings and consequently discovered how to safely remove the mercury from the body (chelate) using chelators properly, that being according to their pharmaceutical half-life. The Cutler protocol, as detailed in his book, Amalgam Illness: Diagnosis & Treatment , thus involves giving low doses of chelator(s) frequently, which helps the body safely excrete mercury and/or other metals. That means dosing every

4 hours for DMSA, every 3 hours for ALA and every 8 hours for DMPS, for

a minimum of three days at a time, which is known as a 'round'

When given in this way, and at a low enough dose, blood levels of the chelator are kept at a low and stable level, thus allowing for a net movement of metals out of the body. Most parents would start a round with their children after school on Friday and stop the round on Monday just before school. Many children have been helped with this protocol, resulting in many behavioral improvements, and many have gone on to lose

their diagnosis.

3. Is chelation safe?

There are many protocols `advertised' for chelation. Some are definitely not safe and do cause harm. Cutler's protocol, if strictly adhered to, is very safe, as only low doses of the chelators are used orally and troublesome supplements such as glutathione, chlorella and cilantro are avoided. Side-effects are minimized by keeping the dose low, and should any side-effects occur while on a round, the round can be stopped immediately without further damage. This gives you, the parent, a great sense of control over your child's treatment and ensures

maximum safety throughout.

4. How do I get support for this protocol?

Once you have obtained Andy's books join the Yahoo Groups, which are free email support forums where you can interact with many people with similar interests. You will receive daily emails from other participants

and become part of an ongoing global discussion.

5. How do I know chelation is working?

Most parents notice improvements within only 5-10 rounds of chelation. You will know it is working simply by observing your child's behavior. No other medical tests are needed to chart chelation progress.

6. What worrying signs should I be looking out for during chelation?

Chelation can cause a temporary slight worsening of some children's symptoms, which will wear off a day or two after the round. Chelation can also cause yeast flare-up in susceptible children, and it is often helpful to have a good yeast protocol in place i.e. lots of probiotics, low-sugar diet and natural yeast fighters such as grapefruit seed extract or oil of oregano. Many other tips for problems that may arise are in Andy's books and available for discussion in the Yahoo groups.

7. What supplements should my child be on?

There are some `basic supplements' that Andy recommends that will make chelation more comfortable for your child.

The water-soluble basic supplements: these should be taken 3-4 times a day.

· Vitamin C: 500-1000 mg/day

· Magnesium: 400 mg/day and

· Zinc: weight in pounds +20 mg/day.

These are total doses for the day that should be given in divided doses 3-4 times a day.

The fat-soluble basic supplements: these can be given once per day (as the liver stores and releases it as you need it)

· Vitamin E: 400IU/day, (the natural form: d-alpha tocopherol, not dl-alpha tocopherol),

· Fish oils: Although not part of the `basic supplement' list, it is generally considered very, very beneficial.

Other particularly helpful supplements include Milk thistle, molybdenum, and ACE (Adrenal Corticol Extract).

You will need to obtain Andy's books to learn about other supplements, with specific reasons for their use

There is also a supplements file in the Recovery from Autism Yahoo group, that can be accessed for more information and dosage instructions.

8. What medical tests might I need to do and who could help me do these?

The Hair Elements Test from DDI is an essential part of the protocol.

A baseline CBC (complete blood count) is helpful before starting chelation, but not absolutely necessary. Any pediatrician or doctor can

order a CBC, though it is often difficult to find a doctor competent in

dealing with mercury toxicity, and most parents use the Yahoo groups to

support and manage treatment on their own.

9. How long will this take?

Chelating safely is a slow and long process. You are looking at 100-300 rounds overall, which translates into 1-3 years, but improvements often come quickly, making the process rewarding.

10. Are you sure there isn't an easier and/or quicker method?

Unfortunately, there is no easier way to chelate that is also safe. Other methods such as the DAN protocol encourage the use of chelators without paying attention to their pharmaceutical half -life. Not paying attention to this pharmacological law, causes spikes and troughs of chelator levels in the blood and corresponding redistribution of mercury, which causes symtoms and damage.

Challenge tests are also very dangerous, yet often recommended by uninformed individuals and medical practitioners. They yield no valuable

information and put your child in significant risk. Please do not attempt them. For more information on the dangers of injecting chelators

visit the DMPS backfire website.

11. Should I pay attention to diet?

Diet is often a critical part in managing the health of your child and is often intimately connected with behavior Andy has a lot of information on dietary restrictions in his books and there are dietary files and people with experience in the Yahoo groups that can make suggestions to help you. One important dietary consideration that Andy points out is the high-thiol foods more commonly known as sulfur foods. Sulfur sensitivety can cause a lot of problems for a mercury toxic child and you are encouraged to rule out this possibility early in the process.

12. How do I know if my child has a sulphur sensitivity?

Sulfur foods (e.g. broccoli, dairy, beans etc and certain supplements (e.g. NAC and glutathione), contain a high concentration of free thiols.

Thiols have the ability to stir mercury up and loosely drag it around, but do not help with the excretion of it, which causes a lot of distress

for a mercury-toxic person. True chelating agents (e.g. DMSA, ALA and DMPS) are double thiols and capture mercury tightly, allowing for its excretion, but only if they are used according to their half-life.

Simply put, people who naturally happen to have high plasma cysteine do badly when extra thiols are added to their body via their diet, as it causes lots of mercury redistribution, making them feel much worse. However, those that happen to have low plasma cysteine, actually require

more thiols for regular body functions, and may feel better by adding more through diet and possible even through supplements such as NAC.

The only way to test this right now is to do the sulfur food exclusion diet and this is a vital component that can remove a lot of daily misery

if figured out early..

Andy used to advise a medical test known as the `plasma cysteine test' which was done as part of the Great Smokies Liver Detox Profile, to help

you ascertain if there was a sulfur sensitivity. However this test is no longer available and the similar test now done by Genova, is no longer accurate, according to Andy.

Andy has a good explanation on page 199 of Amalgam Illness: Diagnosis & Treatment about the difference between single thiols and double thiols, and their effects on the body.This is a puzzle, every child is unique, but there are similarities with mercury toxicity being a major suspect. You may wish to consider reading Andy Cutler's book: amalgam Illness.

Hope this helps. For immediate help consider doing things like designating a " stim free " zone. Ours is the den. If my son is very stimmy, he knows now he has to go to his room, the computer room to stim all he wants, but he's not allowed to be in the den and stim, too. Does your son have receptive understanding of your speech. This can facillitate his understanding that there is a place where YOU can have a break from the verbal stims.

When my son gets stimmy, it can drive me crazy, too! Having a " stim free " area has helped a lot, and I was surprised at how quickly my son caught on and respects the stim free zone.

December 30, 2010

Rosie,

How long has he been off the drugs? What drugs was he on? Keep in mind that going off the drugs can cause many terrible withdrawal symptoms.

That doesn't mean he should go back on them if they weren't helping, but be aware that that could be the cause of the behavior.

I agree with the people who think the drugs are bad. I feel they are dangerous for our kids. I would research them thoroughly before deciding to go back on them. Read the actual comprehensive prescribing info, rather than the simplified info for consumers and make your own decision.

You should probably call your DAN doctor and let him know about the terrible behavior and get his advice.

HTH

Marilyn

December 30, 2010

Hi Rosie...

If his non-stop chattering is driving you crazy, then it must be pretty bad. Couple of questions for ya:

Is the chattering really worse, or is it that you are all off from school this week and you have been around him more?

Have you been keeping a food journal? If not, then you might want to start doing that and really look at the foods that he is eating.

And look at the ingredients.....and learn what the ingredients are. Is he 100% gluten free? If so, how long has he been 100% GF?

I know you have a hard time with cooking; Is the food fresh or pre-packaged? What about casein, have you cut that as well?

Does he still drink the 'red' juice? Red and yellow dyes I think are the worst, so look at the ingredients on his juice as well and any

candy or other foods that might contain dye. Also watch out for high fructose corn syrup.

Something else to think about is that while some foods may be "gluten free", they may contain other stuff that is just as bad for him

like Mc'D' french fries.....

Is he taking any supplements? Have you added any probiotics to his diet?

Maybe you could list the foods that he's been eating and drinking along with snacks and treats and someone might be able to spot

something that you might want to remove from his diet......

Good luck....and happy new year.

Margaret

To: texas-autism-advocacy From: rosietosky@...Date: Thu, 30 Dec 2010 17:48:30 -0800Subject: it is driving me crazy

Once again I need some advice, I am despaired...........I just don't know what is wrong or right anymoreMy 10yrs old boy (ASD/ADHD) he was under medication (drugs) which we didn't see any good on him. So we make a big sacrificed to see a DAN doctor and chanced his diet (gluten free)....but my question is ............how soon do you see any progress? is there a regress and then progress?...He is not violent , no like he use to, but he just don't stop talking...he just talks and talks and talks...it seems it's so hard to stop....no only that now he goes to the bathroom every 30min. (urinate) and no matter what he is doing .....he talks and talks and talks....it is driving me crazy .....I just don't know what else to do.....some people said drugs are not good (because of side affects) and others said they are ........I can't take it....I just want to help my son and I don't see it is working...it's just me or you passed this face before.....thanks for reading and thanks for your comments.God bless you and ....for what it's worth....have a nice yearRosie

December 31, 2010

My son has had this difficulty before, often related to a food he ate. I second the recommendation of keeping a food and symptom diary. I would also rotate foods for awhile especially if you've added new grains or increased anything when eliminating wheat. Corn was a huge offender for my son for many years. It would make him "stuck brained" so he'd have to say the same thing or ask the same question over and over again. Now, he can handle some corn but when he gets too much, he lapses back into the repetitive talking. Needing to urinate too often can also be an allergy. Tapioca (a common thing found in gluten-free items) causes me to have bladder discomfort.

As far as how soon to see progress, removing milk products showed instant improvement for my son but gluten was less obvious. He slowly got better over a period of several weeks. The only way we knew it wasn't right for him was when he'd eat some after being off it for awhile and regress a bit. I seem to recall some people talking about an adjustment period where their kids got a bit worse after removing gluten followed by improvement. Then again, those tended to be more likely to use the pre-prepared gluten free products that have gums and other things that can feed yeast or some kids react to. We just buy mixes from The Gluten Free Pantry (Old Fashioned Cake & Cookie mix and Muffin & Scone mix) and bake everything from scratch. It's so good that many family members and friends prefer those baked goods to the wheat ones others bring to events.

Gaylen

Once again I need some advice, I am despaired...........I just don't know what is wrong or right anymoreMy 10yrs old boy (ASD/ADHD) he was under medication (drugs) which we didn't see any good on him. So we make a big sacrificed to see a DAN doctor and chanced his diet (gluten free)....but my question is ............how soon do you see any progress? is there a regress and then progress?...He is not violent , no like he use to, but he just don't stop talking...he just talks and talks and talks...it seems it's so hard to stop....no only that now he goes to the bathroom every 30min. (urinate) and no matter what he is doing .....he talks and talks and talks....it is driving me crazy .....I just don't know what else to do.....some people said drugs are not good (because of side affects) and others said they are ........I can't take it....I just want to help my son and I don't see it is working...it's just me or you passed this face before.....thanks for reading and thanks for your comments.God bless you and ....for what it's worth....have a nice yearRosie

December 31, 2010

Rosie,It is not " just you. " Many of us have faced similar situations before. I commend you on going gluten free. Take heed to the questions Margaret asked about being very careful what you feed him. Those of us who put our children on the gf/cf/sf diet had to learn to read all labels, and even then in many instances, call the company to be sure the product is not manufactured on the same line as other foods.

You did not say how long he had been on the diet. When I first put my son on the diet, he went through serious withdrawal for about three weeks. He screamed and had tantrums all the time! He was craving the foods I had taken away -- the foods his body was basically turning into opium. He was not a happy camper, and his behavior was such that I was exhausted by the time my husband got home from work, and I was in tears by the end of each day of that time period.

Then after three weeks, I started to see improvements which kept improving until I saw a plateau around eight months. But then I started realizing that red and green food dyes affected my son, as well. At a year of going gf/cf, we had his opiate peptide levels rechecked. they had come down but were still high! The doctor suggested we remove soy protein then too. Now by this time it was not only behavior that had greatly improved, but our son was sleeping better, had fewer gut pains, and he had regain some expressive speech and his receptive speech to adhering to one component commands had improved (he never completely lost receptive speech). Expressive speech had returned to include one syllable words and a few two syllable (It took me a whole day of working with him to teach him to say " water. " Also during this period he had quickly picked up some functional sign language. He preferred signing over speech so much, I finally had to stop responding to signs in order to get him to use speech.

A year after going gf/cf we removed soy protein from Ethan's diet. Four days later, Ethan said his first sentence! It was on a Saturday, and my husband was home, and we were both there to hear it! It wasn't scripting or echolalia. It was a meaningful sentence. We had his peptides rechecked a couple of months after removing soy protein, and the levels were then in a normal limits.

Then we added giving an enzyme before each meal or snack to catch any hidden (even though we are very careful). But I suspect that our son is just low on enzyme production overall, so the enzymes help him digest foods. Strangely enough, I have found our son does best on " Gluten Ease, " which we buy at Whole Foods.

Gluten, casein, and soy protein affect my son in a very bad way. If he gets any he will stim like crazy: verbal stims, running and flicking his fingers constantly, and worst of all he can exhibit violent behavior.

The easiest way to be the most sure your son does not get anything bad is to make his diet simple. Use fresh meats that are as natural or even organic if you can. Use fresh, preferably organic vegetables. Avoid processed foods. There are companies which use good manufacturing processes and label their products gf/cf/sf. We like using the Gluten Free Mall on line as they list under each product what it is free of.

Ian's makes an allergen free line of french fries, chicken nuggets, turkey dog bites, and fish sticks. Applegate Farms has meats that are gf/cf/sf. Wellshire Farms makes turkey sticks that are gf/cf/sf and this year I saw they had gf/cf/sf nitrite free, uncured Virginia ham. They had small ones at WF that were just right for the three of us, and it was the best Virginia ham I ever tasted. We now buy Udi's gf/cf/sf bread, which smells and tastes good even to us.

It is much easier to go gf/cf/sf today than it was nine years ago. Then there was very little on the market that was free of all three, so I had to learn to cook pretty much all his meals from scratch. It is daunting at first, but then just becomes a way of life. Our grandmothers did it, and so can we. I invested in some Tupperware hamburger keepers so I can just pull out a frozen patty of beef, ground turkey, ground chicken, ground lamb at a time and build a meal from it.

Hang in there! It is tough, but it will get better. My son began to heal using diet and metabolic supports alone those first few years. From that point I went a little further as time went on, replacing herbs and spices with organic all natural ones, eliminating sugar and dyes, eliminating preservatives. The cleaner his diet, the better he does.

Get comfortable with each phase before you begin the next. If you try to eliminate everything all at once you will get overwhelmed. Things generally get worse as the nasties are removed and must clear his body. If he has an addiction to these proteins, it can take a while for the addiction to clear.

We also did a rotation diet and I kept a journal regarding food, treatments and observed whatever changes good or bad I saw. Our ECI therapists had told us about the diet, and I was lucky they were coming during those first few months and gave me encouragement to keep going.

Hang in there and keep going. Start your diet journal. The " drugs " you mentioned -- I'm not sure what they had your son on, but psychotropics only cover up and mask the real issues and do nothing to heal, and they come with a whole new set of worrisome side affects. I can certainly see their benefit if a child is violent or self injurious and must be used to keep a child out of an institution; however, the bottom line is that these drugs will not heal what is really the problem.

The last time my son accidentally got a hold of some no-no food, he wound up trying to choke me within an hour afterward. It made me more resolved to be very very careful about his diet. We have been and my son is very well behaved, has regained all forms of speech (though about five years delayed). He has not been violent since that last occurrence a year and a half ago. But other things have caused him to stim. I strongly suspect it was IV chelation, which just wound up moving metals around in his body rather than removing them. I have become a strong believer in the AC (Andy Cutler) Protocol for safe and effective removal of mercury from children's bodies. I would never recommend IV to anyone again. It caused my son to have pretty serious asthma attacks. Stimming had disappeared but returned once we did IV chelation.

Try adding enzymes if you can.Haven

December 31, 2010

Hi Rosie, I remember thinking " oh great I went from having a kid with autism to

a lunatic " the first time we started dietary changes. I seriously questioned

my sanity....I mean in the whole nightmare of autism at least my son was

addicted to certain foods and we could maintain some peace in our home. I also

found that we could teach him things he was so highly motivated by food. So

taking these dietary steps at first seemed like a very very bad idea.

It was scary when we started learning and changing his diet and making this

connection. Especially since in America you are largely viewed as a freak.

But something clicked with me. If food was so powerful and all of the

therapies used it as a reinforcement....there has got to be a connection with

autism and food.

I knew if my son turning into a lunatic due to removal of foods was happening

that it surely was something we needed to explore.

Rosie we've all heard of stories of kids making dramatic improvement within days

or weeks of dietary changes. It used to be that doctors who believed in these

changes thought that diet helped a subset of kids and that a trial period was in

order.

This is not the case. ALL HUMAN BEINGS will benefit from dietary changes. In

the area of autism you may have to work for 2 straight years with extreme strict

level of compliance much beyond a basic GFCF diet to see results. For us we took

away everything...all grains, even fruit for 2 straight years. We at no

sugar...the sweetest treat my kids got was a steamed carrot.

If I were you, I'd say to myself " I'll give it a good 2 years with complete

strictness " . This way you aren't wondering day by day if it's " working. "

It WILL WORK.....but it's one part of the puzzle. However it's a very

important part. What you put into the body matters and we live in a stupid

country. A country where you are viewed as a weirdo if you are trying to get

your kid to eat vegetables.

Afterall, Pediasure exists now. Yeah...so do epidemics of obesity, and

learning problems.

If you choose this path, I'm honestly going to tell you that it will be the

hardest path of your life. Nothing that we did was easy. Every single thing

required a GIANT PROJECT. However over 6 years our son recovered. We made

it. As hard as it all was, to me autism was harder.

If you choose this path, I think it's fair to say that your child will need

dietary changes for a lifetime. Our whole family now lives this way. It's a

way of life. I think it's fair to say that removing Gluten is step one.

Actually it's easier to just go down to a very primitive diet of meats,

vegetables, and healthy fats like coconut oil. This way you don't have to

read so many labels.

It's very possible that your child is still getting gluten. The only way

you'll really know is to take your kid down to a chicken and spinach type of

meal.

It's a crazy amt of work on top of an already crazy situation. But day by day

the body can heal and in the end, our kids are going to do much much better with

nutrient rich foods in their bodies.

Otherwise I fear you'll spend a lifetime on a vicious hampster wheel.

And something else I believe in....the work that you do to get your food

household in order is a giant piece of the puzzle when it comes to dealing with

autism. It's not just the food. It's listening to mommy. This diligent

work also creates a situation where your child can do each part of the recovery

process.

How often do I talk with parents who " can't get their kids into the Hbot

chamber. " OUR KIDS CAN DO THESE THINGS. Once we decide that they can eat

vegetables and can get into the chamber for example....they will. It may take

months of work of breaking it all down step by step....but they can do these

things.

The non stop talking....in a crazy way this can be a great sign. The body is

changing. What I learned at Son-Rise is that our kids are doing the best they

can. Sometimes they need to talk non stop to get through the madness they

feel.

You know what...sometimes I need to call a girlfriend, or have a glass of wine

so that I feel better too. Chocolate helps me too. But when we do these

changes with our kids...they find ways to take care of themselves.

I did all of these changes with my kids....boy did that help me to understand

the process.

Again the very long....many years process. We are on year 6...and in our case

we are looking at a full recovery. Diet being just one part of the ride...but

the very important part. VITAL I'm just a mom, and I don't have studies to

prove what I'm saying...but it stands to reason that the kids who have the best

possible nutritional foundation will respond the best to homeopathy, or biomed,

or natural biomed approaches. These kids will respond best to ABA, RDI, or

Son-Rise. To me the best bang for your buck on this whole ride is to invest

your time and money in diet. However, it's very difficult and without more

support from our community from doctors to schools to family to friends....it's

very lonely.

In our home " if you craved it...it's gone. " My belief was " it's feeding

something...an infection. " Kind of like how an alcoholic can't have even one

shot.

Love

>

> Once again I need some advice, I am despaired...........I just don't know what

is wrong or right anymore

> My 10yrs old boy (ASD/ADHD) he was under medication (drugs) which we didn't

see any good on him. So we make a big sacrificed to see a DAN doctor and chanced

his diet (gluten free)....but my question is ............how soon do you see

any progress? is there a regress and then progress?...

> He is not violent , no like he use to, but he just don't stop talking...he

just talks and talks and talks...it seems it's so hard to stop....no only that

now he goes to the bathroom every 30min. (urinate) and no matter what he is

doing .....he talks and talks and talks....it is driving me crazy .....I just

don't know what else to do.....some people said drugs are not good (because of

side affects) and others said they are ........

> I can't take it....I just want to help my son and I don't see it is

working...it's just me or you passed this face before.....

> thanks for reading and thanks for your comments.

> God bless you and ....

> for what it's worth....

> have a nice year

> Rosie

>

December 31, 2010

Rosie, the nonstop talking could be satisfying a sensory need for oral-motor stimulation. Giving him something chewy can help with that. One of our therapists has an Aspie son, now grown. She credits chewing gum with

saving his life, because there were times she was ready to throttle him

from all the talking.

Dubble Bubble gum is great for chewiness. I don't know if it's gluten-free. Sugarless gums just don't have the same chewiness. Welch's fruit snacks are chewy as well, and they're gluten-free. There are also chewing sticks,chew necklaces, etc. in catalogs like Abilitations.

A lot of our kids' behavior can be driven by sensory needs. Your son's meds may have been masking his sensory difficulties. I'd have him evaluated by an occupational therapist. You can also find out more about

your child's sensory needs and how to address them by reading Sensational Kids or The Out-of-Sync Child. My bet is you will have some Aha! moments reading those books.

You can check it out quickly by googling around for " Sensory Processing Disorder " or, the older term, " Sensory Integration Dysfunction " .

Once again I need some advice, I am despaired...........I just don't know what is wrong or right anymore

My 10yrs old boy (ASD/ADHD) he was under medication (drugs) which we didn't see any good on him. So we make a big sacrificed to see a DAN doctor and chanced his diet (gluten free)....but my question is ............how soon do you see any progress? is there a regress and then progress?...

He is not violent , no like he use to, but he just don't stop talking...he just talks and talks and talks...it seems it's so hard to stop....no only that now he goes to the bathroom every 30min. (urinate) and no matter what he is doing .....he talks and talks and talks....it is driving me crazy .....I just don't know what else to do.....some people said drugs are not good (because of side affects) and others said they are ........

I can't take it....I just

want to help my son and I don't see it is working...it's just me or you passed this face before.....thanks for reading and thanks for your comments.God bless you and ....for what it's worth....

have a nice yearRosie

December 31, 2010

,You give prolific advice! You help us all. I so agree with you! My son healed a great deal just by changing diet and adding metabolic supports. We were pushed towards chelation, but Ethan's neutrophil count remained low for several years and we couldn't consider trying it.

It was hard to come to a decision to chelate, but the testing was done and he was diagnosed with HMI at Children's. I regret doing IV chelation as it was traumatic for him and us, especially when he had a reaction. And as I said before, his stimming had disappeared before IV chelation, but returned after it. My son still has mercury in his body, and for him I think it will be a necessity if he has a chance at full recovery.

However, I think diet and nutrition is absolute. I see very few children improve whose parents have not made these dietary changes. I try to inform parents as I meet them, but out here in the boonies, I am usually met with the phrase, " That would be to hard! " I'm not judging them, I just admit I don't understand that line of thinking.

You are right; nothing about this road is easy, but my child is more important to me than my freedom to do my own thing or my own comfort. The thought that keeps me going is that my son is an only child, and my goal is that he have his own, independent life. They say the people who are most successful at anything are the people who write down their goals and then also write down what they are willing to give up to achieve the goal.

There is little I would not give up to improve the quality of my child's life in a positive way.You've got me thinking about the things I crave in my diet, as well. You are right that we ALL need to change our diets and the way we think about food. I have know for a long time that when summer comes and we pretty much stick to the veggies from our own garden, that we all feel better and more energetic!

I think everyone needs to keep a food diary. I've noticed for some time that I do not feel well after eating a hamburger. I think everyone can benefit from keeping a diary and then eating the foods that make them feel good and alert afterward. Likewise it is important to note our children's behaviors after eating. If stimming is increased after a certain food, it should be eliminated. If behavior degrades after a certain food, it needs to be replaced with something else.

I may have asked you this before but can't remember: You never did any chelation with your child? To be honest I had hoped we could heal Ethan without it, but he just shows too many signs of mercury poisoning still, so we intend to use ALA transdermally. If it works, it will be a bonus to us as Ethan has come so far already. We are constantly looking at diet and trying to get better. I will begin to look at what he is craving these days. I am pretty sure potatoes of any kind will be leaving his diet soon.

You said you fed no fruit for two years. I have never completely eliminated fruits. Would you suggest total elimination or would acidic fruits still be okay? Is it just phenolic fruits that are a problem or is it the sugar content of fruits?

Thanks for all your great advice! Happy New Year!Haven

December 31, 2010

Hi Haven, yes we've chelated...some IV, but mostly low dose oral dmsa. ALA

also...currently nothing. I did tons of cilantro juicing for a few years before

low dose oral dmsa.

As for removal of fruit. I'd say remove sugar first, then grains, last fruits

if the child really craves them. With my son we literally had to take

everything away he was so crazy when it came to food. I think when a kid is

craving something it gives us clues. If a kid really wants bananas, grapes,

raisins etc....it's likely a yeast issue. If they want salty foods...they need

minerals.

Once they start craving a plate of kale for example you know you are getting the

infections under control.

We like Neem and Biocidin too.

Happy New Year!!!!!

>

> ,

>

> You give prolific advice! You help us all. I so agree with you! My son

> healed a great deal just by changing diet and adding metabolic supports. We

> were pushed towards chelation, but Ethan's neutrophil count remained low for

> several years and we couldn't consider trying it.

>

> It was hard to come to a decision to chelate, but the testing was done and

> he was diagnosed with HMI at Children's. I regret doing IV chelation as it

> was traumatic for him and us, especially when he had a reaction. And as I

> said before, his stimming had disappeared before IV chelation, but returned

> after it. My son still has mercury in his body, and for him I think it will

> be a necessity if he has a chance at full recovery.

>

> However, I think diet and nutrition is absolute. I see very few children

> improve whose parents have not made these dietary changes. I try to inform

> parents as I meet them, but out here in the boonies, I am usually met with

> the phrase, " That would be to hard! " I'm not judging them, I just admit I

> don't understand that line of thinking.

>

> You are right; nothing about this road is easy, but my child is more

> important to me than my freedom to do my own thing or my own comfort. The

> thought that keeps me going is that my son is an only child, and my goal is

> that he have his own, independent life. They say the people who are most

> successful at anything are the people who write down their goals and then

> also write down what they are willing to give up to achieve the goal.

>

> There is little I would not give up to improve the quality of my child's

> life in a positive way.

>

> You've got me thinking about the things I crave in my diet, as well. You

> are right that we ALL need to change our diets and the way we think about

> food. I have know for a long time that when summer comes and we pretty much

> stick to the veggies from our own garden, that we all feel better and more

> energetic!

>

> I think everyone needs to keep a food diary. I've noticed for some time

> that I do not feel well after eating a hamburger. I think everyone can

> benefit from keeping a diary and then eating the foods that make them feel

> good and alert afterward. Likewise it is important to note our children's

> behaviors after eating. If stimming is increased after a certain food, it

> should be eliminated. If behavior degrades after a certain food, it needs

> to be replaced with something else.

>

> I may have asked you this before but can't remember: You never did any

> chelation with your child? To be honest I had hoped we could heal Ethan

> without it, but he just shows too many signs of mercury poisoning still, so

> we intend to use ALA transdermally. If it works, it will be a bonus to us

> as Ethan has come so far already. We are constantly looking at diet and

> trying to get better. I will begin to look at what he is craving these

> days. I am pretty sure potatoes of any kind will be leaving his diet soon.

>

> You said you fed no fruit for two years. I have never completely eliminated

> fruits. Would you suggest total elimination or would acidic fruits still be

> okay? Is it just phenolic fruits that are a problem or is it the sugar

> content of fruits?

>

> Thanks for all your great advice! Happy New Year!

>

> Haven

>

January 1, 2011

Haven

I'd much rather a kid have an organic apple than say a GF waffle. I don't

think there is a " right way. " I'm sure other kids can get well without being as

strict as we were. But I do believe if the child isn't well yet...keep going.

I think just 5 years ago and maybe still today in some circles " experts " were

saying that if a child didn't respond move on. My advice is keep going. I

looked at SCD, but found that it served lots of acidic meats, fruits, and honey.

(not good for our viral kids and yeast kids) Though the SCD recipes appealed

to kids, that wasn't my goal. I wasn't trying to please my kids. I wanted

them well. I didn't believe what SCD said about allowing honey. I saw how my

little addict son was if you allowed something like this...and that was my

answer.

I eventually did bring in quinoa as a first grain, but found that I had to soak

it for 48 hours. And we did bring in green apples, cranberries (unsweetened

juice), pineapple, and kiwi on rotation...but we ate these on an empty stomach

(never with meat) and served with young coconut kefir water.

On a happy note, each week I was whacking open those coconuts to drain the water

to ferment. I used to sob cutting those things open. All the other moms were

out having mom's night out and talking about the cute things their kids were

saying. Anyway I'd wipe my tears and pray and be thankful that I had this

healing food for my babies.

The happy note is: Body Ecology now sells bottled ORGANIC RAW coconut water

that you can ferment. I can't imagine having this luxury back when we did

this.

Another tip, I wouldn't take fruit away or even those GF treats until you have

several healing foods on board. Use these foods they'll beg for to teach the

new habits.

I broke a banana into 12 little pieces ABA style and taught my kids to take

bites of carrots, next kale, next onions. We used Spectrum of Hope. By the end

of the week or two or as long as it took....I was the proud mama who could serve

a bowl of veggie soup to my kids! Oh each little victory. Step by step I got

them eating enough foods that I could phase out the fruits and GF baked goods,

cereals etc.....

The first question I almost always get asked when talking to a mom who sees

Tyler and says " what did you do? " They then always say " did it taste good? "

My answer is that I didn't care if it tasted good. I didn't feel like I had to

please my kids. I felt as if I were saving them. I broke it down into

managable steps. But I never made sure my " green drinks " tasted good. My kids

didn't determine my decisions. I hear all the time " oh I'd love to do that,

but he won't eat that. " Well then...it's been decided and the kid knows this.

Our kids are affected but not dumb.

I was strict and firm....but very loving and very fair and my kids could trust

me. What I learned at Spectrum of Hope was to phase out the prompts or

reinforcers. I think the key was to keep going. Keep raising the bar. As

soon as they could take one bite I knew to work towards them taking 2 bites.

Rather than make a GFCFSF lifestyle that looks like old favorites, my vote is to

create a healing diet. Then someday (as we get now) you can always add in

GFCFSF foods that look like the old family favorites. I let my kids have GF

gram crackers now for example. But I watch it closely. Just now Tyler asked

if he could have a GF gram after he's already had a GF cereal. My answer is

NO....he's eating some cultured vegetables and eggs. I let them have GF

treats now...but surrounded by healing foods. How I knew when to allow these

things back into our life was that my kids weren't addicts anymore, they had

good habits, they listened to mommy, and they didn't have asthma and autism

anymore. If I see their health slip....my pantry will go back to those quinoa

seeds.

Now for my fat self....I start my diet tommorrow...don't we all

Love

> >

> > ,

> >

> > You give prolific advice! You help us all. I so agree with you! My son

> > healed a great deal just by changing diet and adding metabolic supports. We

> > were pushed towards chelation, but Ethan's neutrophil count remained low for

> > several years and we couldn't consider trying it.

> >

> > It was hard to come to a decision to chelate, but the testing was done and

> > he was diagnosed with HMI at Children's. I regret doing IV chelation as it

> > was traumatic for him and us, especially when he had a reaction. And as I

> > said before, his stimming had disappeared before IV chelation, but returned

> > after it. My son still has mercury in his body, and for him I think it will

> > be a necessity if he has a chance at full recovery.

> >

> > However, I think diet and nutrition is absolute. I see very few children

> > improve whose parents have not made these dietary changes. I try to inform

> > parents as I meet them, but out here in the boonies, I am usually met with

> > the phrase, " That would be to hard! " I'm not judging them, I just admit I

> > don't understand that line of thinking.

> >

> > You are right; nothing about this road is easy, but my child is more

> > important to me than my freedom to do my own thing or my own comfort. The

> > thought that keeps me going is that my son is an only child, and my goal is

> > that he have his own, independent life. They say the people who are most

> > successful at anything are the people who write down their goals and then

> > also write down what they are willing to give up to achieve the goal.

> >

> > There is little I would not give up to improve the quality of my child's

> > life in a positive way.

> >

> > You've got me thinking about the things I crave in my diet, as well. You

> > are right that we ALL need to change our diets and the way we think about

> > food. I have know for a long time that when summer comes and we pretty much

> > stick to the veggies from our own garden, that we all feel better and more

> > energetic!

> >

> > I think everyone needs to keep a food diary. I've noticed for some time

> > that I do not feel well after eating a hamburger. I think everyone can

> > benefit from keeping a diary and then eating the foods that make them feel

> > good and alert afterward. Likewise it is important to note our children's

> > behaviors after eating. If stimming is increased after a certain food, it

> > should be eliminated. If behavior degrades after a certain food, it needs

> > to be replaced with something else.

> >

> > I may have asked you this before but can't remember: You never did any

> > chelation with your child? To be honest I had hoped we could heal Ethan

> > without it, but he just shows too many signs of mercury poisoning still, so

> > we intend to use ALA transdermally. If it works, it will be a bonus to us

> > as Ethan has come so far already. We are constantly looking at diet and

> > trying to get better. I will begin to look at what he is craving these

> > days. I am pretty sure potatoes of any kind will be leaving his diet soon.

> >

> > You said you fed no fruit for two years. I have never completely eliminated

> > fruits. Would you suggest total elimination or would acidic fruits still be

> > okay? Is it just phenolic fruits that are a problem or is it the sugar

> > content of fruits?

> >

> > Thanks for all your great advice! Happy New Year!

> >

> > Haven

> >

>

January 1, 2011

So can u describe how it went the first time u tried to make your kids eat these foods? I am imagining me and my son with lots of crying, yelling, pleading, threatening, etc to no avail. And lots of spitting out food. How do u stay persistent and calm and not give up? I know my son probably has addiction to white flour and needs to be on a gf diet. He eats so little already. How do u find out how to ferment coconut water. How do they get past the bad taste of the foods? It's so overwhelming. Sent from my iPhone

Haven

I'd much rather a kid have an organic apple than say a GF waffle. I don't think there is a "right way." I'm sure other kids can get well without being as strict as we were. But I do believe if the child isn't well yet...keep going.

I think just 5 years ago and maybe still today in some circles "experts" were saying that if a child didn't respond move on. My advice is keep going. I looked at SCD, but found that it served lots of acidic meats, fruits, and honey. (not good for our viral kids and yeast kids) Though the SCD recipes appealed to kids, that wasn't my goal. I wasn't trying to please my kids. I wanted them well. I didn't believe what SCD said about allowing honey. I saw how my little addict son was if you allowed something like this...and that was my answer.

I eventually did bring in quinoa as a first grain, but found that I had to soak it for 48 hours. And we did bring in green apples, cranberries (unsweetened juice), pineapple, and kiwi on rotation...but we ate these on an empty stomach (never with meat) and served with young coconut kefir water.

On a happy note, each week I was whacking open those coconuts to drain the water to ferment. I used to sob cutting those things open. All the other moms were out having mom's night out and talking about the cute things their kids were saying. Anyway I'd wipe my tears and pray and be thankful that I had this healing food for my babies.

The happy note is: Body Ecology now sells bottled ORGANIC RAW coconut water that you can ferment. I can't imagine having this luxury back when we did this.

Another tip, I wouldn't take fruit away or even those GF treats until you have several healing foods on board. Use these foods they'll beg for to teach the new habits.

I broke a banana into 12 little pieces ABA style and taught my kids to take bites of carrots, next kale, next onions. We used Spectrum of Hope. By the end of the week or two or as long as it took....I was the proud mama who could serve a bowl of veggie soup to my kids! Oh each little victory. Step by step I got them eating enough foods that I could phase out the fruits and GF baked goods, cereals etc.....

The first question I almost always get asked when talking to a mom who sees Tyler and says "what did you do?" They then always say "did it taste good?"

My answer is that I didn't care if it tasted good. I didn't feel like I had to please my kids. I felt as if I were saving them. I broke it down into managable steps. But I never made sure my "green drinks" tasted good. My kids didn't determine my decisions. I hear all the time "oh I'd love to do that, but he won't eat that." Well then...it's been decided and the kid knows this.

Our kids are affected but not dumb.

I was strict and firm....but very loving and very fair and my kids could trust me. What I learned at Spectrum of Hope was to phase out the prompts or reinforcers. I think the key was to keep going. Keep raising the bar. As soon as they could take one bite I knew to work towards them taking 2 bites.

Rather than make a GFCFSF lifestyle that looks like old favorites, my vote is to create a healing diet. Then someday (as we get now) you can always add in GFCFSF foods that look like the old family favorites. I let my kids have GF gram crackers now for example. But I watch it closely. Just now Tyler asked if he could have a GF gram after he's already had a GF cereal. My answer is NO....he's eating some cultured vegetables and eggs. I let them have GF treats now...but surrounded by healing foods. How I knew when to allow these things back into our life was that my kids weren't addicts anymore, they had good habits, they listened to mommy, and they didn't have asthma and autism anymore. If I see their health slip....my pantry will go back to those quinoa seeds.

Now for my fat self....I start my diet tommorrow...don't we all

Love

> >

> > ,

> >

> > You give prolific advice! You help us all. I so agree with you! My son

> > healed a great deal just by changing diet and adding metabolic supports. We

> > were pushed towards chelation, but Ethan's neutrophil count remained low for

> > several years and we couldn't consider trying it.

> >

> > It was hard to come to a decision to chelate, but the testing was done and

> > he was diagnosed with HMI at Children's. I regret doing IV chelation as it

> > was traumatic for him and us, especially when he had a reaction. And as I

> > said before, his stimming had disappeared before IV chelation, but returned

> > after it. My son still has mercury in his body, and for him I think it will

> > be a necessity if he has a chance at full recovery.

> >

> > However, I think diet and nutrition is absolute. I see very few children

> > improve whose parents have not made these dietary changes. I try to inform

> > parents as I meet them, but out here in the boonies, I am usually met with

> > the phrase, "That would be to hard!" I'm not judging them, I just admit I

> > don't understand that line of thinking.

> >

> > You are right; nothing about this road is easy, but my child is more

> > important to me than my freedom to do my own thing or my own comfort. The

> > thought that keeps me going is that my son is an only child, and my goal is

> > that he have his own, independent life. They say the people who are most

> > successful at anything are the people who write down their goals and then

> > also write down what they are willing to give up to achieve the goal.

> >

> > There is little I would not give up to improve the quality of my child's

> > life in a positive way.

> >

> > You've got me thinking about the things I crave in my diet, as well. You

> > are right that we ALL need to change our diets and the way we think about

> > food. I have know for a long time that when summer comes and we pretty much

> > stick to the veggies from our own garden, that we all feel better and more

> > energetic!

> >

> > I think everyone needs to keep a food diary. I've noticed for some time

> > that I do not feel well after eating a hamburger. I think everyone can

> > benefit from keeping a diary and then eating the foods that make them feel

> > good and alert afterward. Likewise it is important to note our children's

> > behaviors after eating. If stimming is increased after a certain food, it

> > should be eliminated. If behavior degrades after a certain food, it needs

> > to be replaced with something else.

> >

> > I may have asked you this before but can't remember: You never did any

> > chelation with your child? To be honest I had hoped we could heal Ethan

> > without it, but he just shows too many signs of mercury poisoning still, so

> > we intend to use ALA transdermally. If it works, it will be a bonus to us

> > as Ethan has come so far already. We are constantly looking at diet and

> > trying to get better. I will begin to look at what he is craving these

> > days. I am pretty sure potatoes of any kind will be leaving his diet soon.

> >

> > You said you fed no fruit for two years. I have never completely eliminated

> > fruits. Would you suggest total elimination or would acidic fruits still be

> > okay? Is it just phenolic fruits that are a problem or is it the sugar

> > content of fruits?

> >

> > Thanks for all your great advice! Happy New Year!

> >

> > Haven

> >

>

January 1, 2011

Oh ! I hear you about the weight! I am so disgusted with myself! I weighed 130 pounds four years ago when my father passed away, and now after four years of taking care of my mother and Ethan, I lost myself by gaining thirty-eight pounds, but I am determined to change. My recent cholesterol profile was not good.

I took your advice about the gf/cf/sf snacks. I stopped buying them. That saved some $$$. I focused on organic meats and veggies and some fruits.I am going to put him back on a rotation diet again, and I am going to limit his potato consumption --probably need to eliminate them entirely as he craves potatoes. I had been substituting parsnips and will return to that.

I do have some gf/cf/sf snacks hidden, but will use these as you say -- to get him to take bites of veggies. I am so glad you told me about the water at Body Ecology. They sell the enzymes needed to ferment there too?

I'm glad you mentioned the salt cravings. My son and I both crave salty foods. I have a mineral supplement from Kirkmans. should I up our mineral intake? Which veggies do you feed? I can get my son to eat spinach, cauliflower, beets, lettuce, parsnips, and tomatoes pretty well. green beans and peas are only fair. Of course he loves corn, so that is probably a no-no. Any other ideas? Are some fried foods okay so long as I use avocado or grape seed oil? I also have Macadamia nut oil and I rotate which oil I use. I can get him to eat okra and squash if I coat it in tapioca flour and fry. Or should everything be baked or steamed only?

I still let him have rice cakes and coconut milk yogurt. The yogurt probably has something sweet added, so if I buy plain, can he still have this with fruit?I know I need to focus on reading about body Ecology more. Right now I am reading Amalgam Illness and trying to make sense of that. Do you think chelation helped your child at all? We plan to use ALA only starting next Friday per the AC Protocol.

The most worrisome set back is the verbal stimming that returned after IV chelation. I'm thinking redistribution of metals and yeast. I have him on biotin and GSE. What else can I do to fight the yeast? Things like ketoconozole and nystantin have just never worked very well.

Today we played " go fish " together -- all three of us. He had us in stitches! He was scripting replies he heard on the " go fish " game on the computer. I'd asked him for a card, and he's say, " You better get some worms, 'cause you're going fishing! " He won the game!

When I think back to those days long ago, God I am so thankful for where we are and how far he's come, but we are not done yet.Thanks for all your help!Haven

January 1, 2011

I talk with so many moms that start supplements, diet, etc......give it a few months and then move on if they don't see any changes in behavior. At the end of the day, we just don't know what the right combination is for each of our children. It may be diet and supplements, and ABA, and HBOT, and chelation, and etc....... I say stay the course. When you start diet keep going, supplements stay with the basics (multi, enzymes, probiotics, vit d, omegas) and modify as you need to, therapies change as your child does. We are so accustomed to that easy button in our society. There is no easy button for autism. We are 4 1//2 years since diagnosis......never thought we would be where we are today. Hang is there......keep moving forward. Blessings,

Subject: Re: it is driving me crazyTo: Texas-Autism-Advocacy Date: Saturday, January 1, 2011, 11:20 AM

Haven I'd much rather a kid have an organic apple than say a GF waffle. I don't think there is a "right way." I'm sure other kids can get well without being as strict as we were. But I do believe if the child isn't well yet...keep going. I think just 5 years ago and maybe still today in some circles "experts" were saying that if a child didn't respond move on. My advice is keep going. I looked at SCD, but found that it served lots of acidic meats, fruits, and honey. (not good for our viral kids and yeast kids) Though the SCD recipes appealed to kids, that wasn't my goal. I wasn't trying to please my kids. I wanted them well. I didn't believe what SCD said about allowing honey. I saw how my little addict son was if you allowed something like this...and that was my answer. I eventually did bring in quinoa as a first grain, but found that I had to soak it for 48 hours. And we did bring in green apples, cranberries (unsweetened

juice), pineapple, and kiwi on rotation...but we ate these on an empty stomach (never with meat) and served with young coconut kefir water.On a happy note, each week I was whacking open those coconuts to drain the water to ferment. I used to sob cutting those things open. All the other moms were out having mom's night out and talking about the cute things their kids were saying. Anyway I'd wipe my tears and pray and be thankful that I had this healing food for my babies. The happy note is: Body Ecology now sells bottled ORGANIC RAW coconut water that you can ferment. I can't imagine having this luxury back when we did this. Another tip, I wouldn't take fruit away or even those GF treats until you have several healing foods on board. Use these foods they'll beg for to teach the new habits. I broke a banana into 12 little pieces ABA style and taught my kids to take bites of carrots, next kale, next onions. We used Spectrum

of Hope. By the end of the week or two or as long as it took....I was the proud mama who could serve a bowl of veggie soup to my kids! Oh each little victory. Step by step I got them eating enough foods that I could phase out the fruits and GF baked goods, cereals etc.....The first question I almost always get asked when talking to a mom who sees Tyler and says "what did you do?" They then always say "did it taste good?"My answer is that I didn't care if it tasted good. I didn't feel like I had to please my kids. I felt as if I were saving them. I broke it down into managable steps. But I never made sure my "green drinks" tasted good. My kids didn't determine my decisions. I hear all the time "oh I'd love to do that, but he won't eat that." Well then...it's been decided and the kid knows this. Our kids are affected but not dumb. I was strict and firm....but very loving and very fair and my kids could trust me. What I

learned at Spectrum of Hope was to phase out the prompts or reinforcers. I think the key was to keep going. Keep raising the bar. As soon as they could take one bite I knew to work towards them taking 2 bites. Rather than make a GFCFSF lifestyle that looks like old favorites, my vote is to create a healing diet. Then someday (as we get now) you can always add in GFCFSF foods that look like the old family favorites. I let my kids have GF gram crackers now for example. But I watch it closely. Just now Tyler asked if he could have a GF gram after he's already had a GF cereal. My answer is NO....he's eating some cultured vegetables and eggs. I let them have GF treats now...but surrounded by healing foods. How I knew when to allow these things back into our life was that my kids weren't addicts anymore, they had good habits, they listened to mommy, and they didn't have asthma and autism anymore. If I see their health slip....my pantry will go back to

those quinoa seeds. Now for my fat self....I start my diet tommorrow...don't we all :)Love > >> > ,> > > > You give prolific advice! You help us all. I so agree with you! My son> > healed a great deal just by changing diet and adding metabolic supports. We> > were pushed towards chelation, but Ethan's neutrophil count remained low for> > several years and we couldn't consider trying it.> > > > It was hard to come to a

decision to chelate, but the testing was done and> > he was diagnosed with HMI at Children's. I regret doing IV chelation as it> > was traumatic for him and us, especially when he had a reaction. And as I> > said before, his stimming had disappeared before IV chelation, but returned> > after it. My son still has mercury in his body, and for him I think it will> > be a necessity if he has a chance at full recovery.> > > > However, I think diet and nutrition is absolute. I see very few children> > improve whose parents have not made these dietary changes. I try to inform> > parents as I meet them, but out here in the boonies, I am usually met with> > the phrase, "That would be to hard!" I'm not judging them, I just admit I> > don't understand that line of thinking.> > > > You are right; nothing about this road is easy, but my

child is more> > important to me than my freedom to do my own thing or my own comfort. The> > thought that keeps me going is that my son is an only child, and my goal is> > that he have his own, independent life. They say the people who are most> > successful at anything are the people who write down their goals and then> > also write down what they are willing to give up to achieve the goal.> > > > There is little I would not give up to improve the quality of my child's> > life in a positive way.> > > > You've got me thinking about the things I crave in my diet, as well. You> > are right that we ALL need to change our diets and the way we think about> > food. I have know for a long time that when summer comes and we pretty much> > stick to the veggies from our own garden, that we all feel better and more> >

energetic!> > > > I think everyone needs to keep a food diary. I've noticed for some time> > that I do not feel well after eating a hamburger. I think everyone can> > benefit from keeping a diary and then eating the foods that make them feel> > good and alert afterward. Likewise it is important to note our children's> > behaviors after eating. If stimming is increased after a certain food, it> > should be eliminated. If behavior degrades after a certain food, it needs> > to be replaced with something else.> > > > I may have asked you this before but can't remember: You never did any> > chelation with your child? To be honest I had hoped we could heal Ethan> > without it, but he just shows too many signs of mercury poisoning still, so> > we intend to use ALA transdermally. If it works, it will be a bonus to us> > as

Ethan has come so far already. We are constantly looking at diet and> > trying to get better. I will begin to look at what he is craving these> > days. I am pretty sure potatoes of any kind will be leaving his diet soon.> > > > You said you fed no fruit for two years. I have never completely eliminated> > fruits. Would you suggest total elimination or would acidic fruits still be> > okay? Is it just phenolic fruits that are a problem or is it the sugar> > content of fruits?> > > > Thanks for all your great advice! Happy New Year!> > > > Haven> >>

January 1, 2011

What a sweet boy! I think you know what you need to regardeing diet. Listen to

your gut. Id take a look at every smart question you asked.....you know what to

do. Id take fried foods away for a spell....3 months because you are likely

breading foods. Oils very necessary but when the liver is in bad shape you need

to take a break and use raw organic oils in a healing way. Example. A tsp or

raw c oil on a spoon or drizzled over steamed carrots. Good for you....keep

going and ill write more tonight....going skating now!

>

> Oh ! I hear you about the weight! I am so disgusted with myself! I

> weighed 130 pounds four years ago when my father passed away, and now after

> four years of taking care of my mother and Ethan, I lost myself by gaining

> thirty-eight pounds, but I am determined to change. My recent cholesterol

> profile was not good.

>

> I took your advice about the gf/cf/sf snacks. I stopped buying them. That

> saved some $$$. I focused on organic meats and veggies and some fruits.

>

> I am going to put him back on a rotation diet again, and I am going to limit

> his potato consumption --probably need to eliminate them entirely as he

> craves potatoes. I had been substituting parsnips and will return to that.

>

> I do have some gf/cf/sf snacks hidden, but will use these as you say -- to

> get him to take bites of veggies. I am so glad you told me about the water

> at Body Ecology. They sell the enzymes needed to ferment there too?

>

> I'm glad you mentioned the salt cravings. My son and I both crave salty

> foods. I have a mineral supplement from Kirkmans. should I up our mineral

> intake? Which veggies do you feed? I can get my son to eat spinach,

> cauliflower, beets, lettuce, parsnips, and tomatoes pretty well. green

> beans and peas are only fair. Of course he loves corn, so that is probably

> a no-no. Any other ideas? Are some fried foods okay so long as I use

> avocado or grape seed oil? I also have Macadamia nut oil and I rotate which

> oil I use. I can get him to eat okra and squash if I coat it in tapioca

> flour and fry. Or should everything be baked or steamed only?

>

> I still let him have rice cakes and coconut milk yogurt. The yogurt

> probably has something sweet added, so if I buy plain, can he still have

> this with fruit?

>

> I know I need to focus on reading about body Ecology more. Right now I am

> reading Amalgam Illness and trying to make sense of that. Do you think

> chelation helped your child at all? We plan to use ALA only starting next

> Friday per the AC Protocol.

>

> The most worrisome set back is the verbal stimming that returned after IV

> chelation. I'm thinking redistribution of metals and yeast. I have him on

> biotin and GSE. What else can I do to fight the yeast? Things like

> ketoconozole and nystantin have just never worked very well.

>

> Today we played " go fish " together -- all three of us. He had us in

> stitches! He was scripting replies he heard on the " go fish " game on the

> computer. I'd asked him for a card, and he's say, " You better get some

> worms, 'cause you're going fishing! " He won the game!

>

> When I think back to those days long ago, God I am so thankful for where we

> are and how far he's come, but we are not done yet.

>

> Thanks for all your help!

>

> Haven

>

January 1, 2011

Haven, coconut milk kefir is much different from young coconut water kefir.

It's always best to stick with raw and organic. The store coconut kefir has

lots of sugar. Rice cakes too will feed yeast.

It sounds like Ethan would do well to go off of all yeast feeding foods for a

period of time. 3 months may do it! I'd really take a look at breads,

crackers, cookies, anything baked/breaded.

As for vegetables we eat a lot of steamed kale, carrots, brocoli, zuchini,

onions, and spinach. A lot of RAW cucumber, parsely, celery, romaine, and

cultured/fermented vegetables daily. I make cabbage, beets, carrots and garlic

blend fermented with a body ecology starter culture. We also eat ocean

vegetables like arame, wakame, and dulse. For about 4 years straight we

basically ate 80% vegetables on the plate. But this took me many months of hard

work teaching the kids to do this.

You might give only raw unrefined coconut oil for a few weeks. Then add in good

oils like ghee, raw cultured butter, flax oils...even by the spoonful. The

liver needs good oils to function well...but if congested (our kids yes) it's a

good idea to give the body a break for a spell. The coconut oil will be

processed by the body differently and should be ok for a few weeks while you are

giving the liver a break. A warm organic fresh lemonade with stevia each

morning first thing would be a great idea when thinking of the liver.

Hope this helps!