Supplements Need More Recognition

Nutrition in general and supplements are way under-rated. I guess because you can't pack them into a single pill (just lots of little pills taken regularly). They also aren't come by easily, unless you happen to be blessed with health-conscious parents who drum it into you from day one. If you aren't that lucky (as most of us aren't), it takes a considerable life style adjustment to eat the right foods and take the right supplements. I'm speaking primarily about health challenged kids/people who could benefit so mightily from good nutrition and supplements rather than drugs.

I've mentioned KSN before, a group I regularly follow since Demi has Kabuki. I've recently met a poster there who really gets it. I hope others in the group pick up on the benefit that nutrition (like Juice Plus, gfcf diet, allergen awareness, organic, etc) and supplements (fish oil (most of them do this already), melatonin, ALA, probiotics, yeast fighters, etc., etc.) could have on their children. Yes, it takes some effort (mostly in the learning, not the doing!), but it's SO much better than drugs with side effects and unknown long term effects.

I've learned most of it from the AutismNCD group, even though Demi doesn't have autism. She still has toxins and yeast issues that affect behavior. I specifically started her on Natural Cellular Defense because I thought it might improve cognition. I had no idea that I would discover so much more about nutrition and supplements that would benefit her.

My suggestion for a parent wanting to start but not knowing where: Just start! It usually doesn't matter where. NCD is easy to start with. Probiotics are easy to start. Just start with ONE THING and then build from there. It's not that hard once you get started!!

Moments of Brilliance?

Ok, maybe not brilliance, but brightness at least. Math is not Demi's strong point, but occasionally while doing homework, she seems to "get it." There's that moment of brightness. At least the answers come a bit more quickly and naturally. Rarely and for a very short burst. But they come.

I wonder where they come from? How do these moments of understanding happen?

Just today, I spoke to her resource (aka special ed) teacher who said she just doesn't get numbers. I guess she hasn't yet been dazzled by one of Dem's "moments of brilliance." While I recognize that's true most of the time, why does she get it sometimes and not others. It would be nice to know...

Roller Coaster Ride

This is one roller coaster ride I'd rather get off.
I'm sure I can't be alone.

One day it seems that things might be getting better. She's doing a little better. Maybe she's turned a corner. Maybe...
The next day, she can't seem to grasp the most basic concept that I repeat five or eight times. Her attention is totally gone; she can't focus for more than 2 microseconds. Then I get frustrated. Then I feel bad.

I get reports from everyone else who works with her that she does everything so willingly, she's so sweet, never complains. I guess she saves all that other stuff for me.
I wonder why no one else gets as frustrated with her as I do. Is it because they don't let the uncertain future cloud their emotions today? I try very hard to do that but often fail.

She IS wonderfully sweet and my heart practically bursts when just looking at her sometimes, fully enjoying the joy that she is today.

But then we have homework... :(

Ear Pain - Update

To update my last ear pain post, the pain/infection/problem never recurred after continuing the antifungal swabs. I continued for probably 4 more days. She was absolutely fine.
Never filled the prescription from the Dr.

Great First Week of School!

We started back to school last Monday - almost two weeks already!

Demi was VERY ready to go to First Grade. She was excited to tell anyone who would listen.

The first day was exciting for me because she came home with a phrase ("No Homework") written in her papers - and it was legible! She also had a list of spelling words (granted, very easy ones) - only five - that she already knew.

Her special ed teacher (same as last year) was gushing over how much better she was reading now. She has definitely come a long way since last year - but I guess that's true for all "normal" kids. Since Demi's not exactly "normal", it's just amazing to me that she's pretty much at the same level as her peers (just not as independent).

This second week of school has been a little more difficult (90 mins to do her homework on Monday!), but she seems to be getting the concepts in order to keep up. It just takes A LOT of repetition. Her reading is going very well. Math, not so well. Writing, despite the first day excitement, is also going slowly.

In therapy over the summer, her OT has been doing a lot of vestibular stimulation (spinning, crawling with a tennis ball, other exercises). It can sometimes positively impact writing and small motor skills.

We also made a change to her glasses which will hopefully help with the vision issues she seemed to be having last year.

Her speech is gradually becoming clearer, although she still has a long way to go. I would guess that people outside her regular sphere could understand 50% of what she's saying on the first try. Probably 80-90% after asking her to repeat it a few times.

She still takes her supplements every day. Over the summer, I got a bit slack at times (typically when traveling). I noticed behavior changes when she was off them for more than a few days. The changes were mostly decreased attention/increased distractability.

Ear Pain Lessened

Still haven't filled the prescription. (See the last ear post.)

The last post was on Monday; it's now Friday.
I got her back on her regular supplements, which include some yeast fighters, although I didn't double up on anything. We ran out of ThreeLac and I've not yet received the new, so she hasn't had that since Tuesday.

Although we have not seen any discharge, her pain continued Tues and Wed. I gave her acetominophen for the pain, every 4-6 hrs or so as she complained vehemently about her ear. The pain woke her up at night Monday and Tuesday.

Wednesday morning, I swabbed an antifungal cream into her ear. Something similar to Lotrimin. I swabbed it again Wednesday evening. Wednesday evening, she slept through the night without pain. No pain meds on Thursday. I swabbed again Thurday night. She slept well again Thursday night, with no pain since late Wednesday.

I'll continue the antifungal swabs for another several days to make sure it's gone. Not sure if it was the supplements or the antifungal cream which got it under control. I have used NO ANTIBIOTICS, so it wasn't swimmer's ear as diagnosed by the dr's office.

The last time I used an antifungal cream, we only did it once. The infection seemed to subside immediately, but I didn't believe that was the solution because we only did it ONCE. Yet, this time, the pain seemed to subside relatively quickly once the cream was introduced.

Bilateral Otoplasty

Another event which has gone unreported was Demi's bilateral otoplasty. Back in April, she underwent a day surgery to have her ears pinned back and rotated slightly.

Before the operation, her ears were significantly cupped (see the darling picture at left). So much so that her hearing aids would not stay on without special straps to keep them in place. There was simply no "behind the ear" there. Without the straps, the hearing aid flapped in the breeze, attached only by the earmold.

Here are some "in between" pictures. After the surgery, they wrapped her head with layers of gauze like a helmet. She had to keep that on for three days. After three days, we got a headband to wear over her ears for protection and keep them flattened. I ended up making my own headband, because the pictured option was not the best. She wore the headband 24/7 for two weeks, then just at night for another two weeks. (In reality, she wasn't wearing it after the first two weeks, because it inevitably came off during the night.)

Here are the AFTER pictures.

Do they look normal, unremarkable? Yea!!

These two pictures were taken just last week and today.

We "lost" a little bit on the left ear - it's not quite as tightly pinned as the right. But they still look great compared to what they were before. (Take a look back at the BEFORE picture if you don't think so!) We're now 12 weeks post-surgery so they're totally healed with no complications.

The reveal:

Another Ear Infection

Way too long between posts, especially with all the stuff going on.

The latest has to do with those darned slimy ears. This time, we haven't reached the slime stage yet. Demi started complaining yesterday that her ear hurt - RED FLAG. Early this morning, she said it hurt "a little". Later, it was back to "It really hurts!" so I took her in.

Again, they diagnosed an outer ear infection - the standard Swimmer's Ear to be treated with antibiotics. I asked specifically about the fungal infection, but was told it was "unlikely" because she felt pain to the touch, which wasn't characteristic of the fungal infection. He gave me a prescription which contained both an antibiotic and an antifungal in order to cover both possibilities.

Instead of filling the prescription, I'm upping her yeast protocol to see how it works. Because of a trip to the grandparents, a camping trip, and sheer laziness for 4 days, she's been without her ThreeLac for two weeks now. She had been without most of her supplements for four days last week. After everything going smoothly for a while, I start to forget how important certain pieces of the puzzle are.

After the doctor, I immediately gave her two sachets of ThreeLac. She had already gotten SaccB this morning. She complained again that her ear still hurt and went to take a nap. Got up after an hour; it still hurt a lot. Back down after just 5 mins. After another hour, she got up again and said that her ear didn't hurt as much.

If it continues to hurt her, gets worse, starts draining, etc., I'll likely go get the prescription filled before it gets out of hand. If it stops bothering her, I'll continue with the extra ThreeLac and her normal yeast fighters. Hopefully it'll clear up just by getting her back on all of her regular supps.

Secret to Longevity

Have you heard this yet??

Science Reveals that a Rare Mushroom is the Secret for Longevity and Health!

Did you know there are people who have lived to be over 100 years old without developing any of the degenerative effects of aging? It's true, but their longevity didn't happen by accident. They had a secret weapon: the powerful Agaricus Blazei mushroom.

This mysterious mushroom was discovered in the mid-twentieth century by Japanese researcher Takamoshi Furumoto while observing an obscure tribe in Piedade region of Brazil. He was amazed when he found that an unusually large number of the tribe members lived to be well over 100 years old without suffering from the usual age-related afflictions. Upon investigation, he discovered their miraculous health and longevity was attributed to a special mushroom the tribe called "Cogumelo de Vida" or the "mushroom of life."

Further research revealed that the reason this mushroom, named Agaricus Blazei by scientists, has such life-extending power is that it's rich in beta glucans, which improve the body's defense against foreign invaders. They do this by enhancing the effects of macrophages, neutrophils and Natural Killer cells (NK cells), which protect against a wide range of physical challenges.

Because this amazing mushroom has proven to stave off such a broad spectrum of conditions, its discovery is considered as significant as the invention of penicillin. In fact, it's sure to revolutionize medicine as we know it. That's why Waiora is so proud to offer the age-fighting power of the Agaricus Blazei mushroom in its new product, AgariGold with H1X1.

AgariGold with H1X1 features a patented blend of the Brazilian Agaricus mushroom with another powerful Agaricus strain, which has resulted in a hybrid more potent than the original Brazilian Agaricus alone. This unique and highly powerful hybrid has been combined with Sasa Bamboo, possibly the world's most efficacious antioxidant, to create Waiora's groundbreaking AgariGold with H1X1. The result is a revolutionary life-enhancing superfood that also contains amino acids (including the essential eight that our bodies can't manufacture), vitamins, minerals, antioxidants, enzymes and essential fatty acids.*

It's a powerhouse of nutrition in just a few drops a day. Go to http://www.agarigold.com/ to find out more today!
* These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure or prevent any disease.

Mushroom Superfood - You gotta try this!

We just learned all about the fabulous new Agaricus Blazei H1X1 hybrid mushroom product exclusively from Waiora! What an amazing product!

This amazing product has the highest level of beta-glucans available in any Agaricus Blazei product on the market. It's 3000 times more potent than any other product! Beta-glucan is a complex polysaccharide which is water soluble, non-toxic, and orally effective. It works to stimulate immune function by binding to and activating macrophages in the blood stream.

Agarigold also contains ergosterol, which increases absorption of calcium and decreases tumor growth through decreasing angiogenesis (growth of blood vessels on the tumor).

Agarigold also contains linoleic acid, an omega-6 fatty acid which is also an aromatase inhibitor (lowers the amount of estrogen in post-menopausal women who have hormone-receptor-positive breast cancer).

The final ingredient of Agarigold H1X1 is Sasa Bamboo, which acts as a powerful antioxidant and natural preservative. The preservative effects are so strong that a bottle over 3 years old maintains 100% potency and 100% purity.

I'll be back with lots of testimonials. Gotta get back to the conference!

Perfect Home-Based Business

Nina Restiva relates why she's so excited about Waiora and this amazing business she has discovered! This self-employed massage therapist enjoys the products, the people, and the support a business needs to succeed from home.

Running out of NCD

We ran out of NCD last week. I tried to make it to the end of the month and over estimated. It didn't help that DH had a problem with a bottle - the cap came off because it was stopped up and he lost the entire rest of the bottle. (Waiora was great about sending out a brand new bottle!)

Anyway, so Demi has been without NCD for the past week with no obvious ill effects. Early on (~2 yrs ago), there was an obvious difference when she didn't have it for some time - she'd get very spacey. I'd have to repeat something 4-5 times before catching her attention. This time, however, although she may have been a bit more hyper, I didn't notice any spacy-ness.

I've read frequently about how some kids regress after coming off NCD and others don't. I suspect it has to do with where they are in their toxicity perhaps. Or maybe something else. But, after being on NCD for an extended period of time, Demi did not regress when taking an unintentional one week break this time.

So, does that mean she no longer needs the NCD? I don't think so. I think it's still doing the job of mopping up metals and toxins which may be floating about in her. There's just a lower supply now. Plus, since I'm still using ALA, I still need the NCD to help get that stuff cleaned out.

Autism: All in the Family

Great show last night on Blog Talk Radio about autism recovery. Fleur Elmslie told her amazing story about health challenges with all three of her children (all three with ASD, as well as other issues) and the steps she took to address those issues.

She talked about starting with the GFCF diet, moving on to Secretin spray (with good temporary results), then PCA-Rx (with moderate results), detox foot pads, clay baths, and finally NCD and ALA - which seemed to be the "magic" combination for her children.

It's definitely worth listening to. Very good information within an overall great story. She also mentioned that she's written a book (not yet published), but she has to go back to write several more chapters now. She sent me a copy of the book - I thought it was excellent - at least the part I've read thus far. I can't wait until she gets it published!!

No More Slimy Ear

It's now 10 days after my last Slimy Ear post.
The ear actually cleared up almost immediately after my last post.
1) The primary thing: we stopped using the antibiotic drops (which possibly made it worse)!
2) We bumped up her anti-yeast protocol by adding Sacc-B back in (never meant to stop it anyway) and jumped up to three sachets of ThreeLac each morning.
3) We tried the OTC anti-fungal cream - with a q-tip in a clean, dry ear. But we only did that for a day, so I doubt that was the solution.

So, anyway, we've been Slimy-Ear-free for at least 9 days now!

Cancer Fighting Foods

“Let thy food be thy medicine and thy medicine be thy food.”
--Hippocrates (460-377 B.C.)

I've been more appreciative of that statement in recent years. This information is great to know for that very reason - we can use FOOD to keep disease at bay. ...As long as it's the good foods keeping it away rather than bad foods bringing it in.

Several cancer fighting foods help prevent cancer. These cancer foods can prevent breast cancer, lung cancer, colon cancer, prostate cancer, skin cancer, ovarian cancer, cervical cancer, liver cancer, etc.

For quite some time, a growing body of research has shown that fruits and vegetables, especially richly coloured varieties, can reduce the risk of cancer with raw vegetables being more beneficial. [Note: Vegetables like cabbage, broccoli, cauliflower, kale, and brussel sprouts should be taken raw in moderation as they contain oxalates, excess of which can lead to gall stones.] Never overcook vegetables in order to retain their nutrients and benefits.

Cancer fighting vegetables and fruits:

Avocado

This powerful antioxidant is a strong source of phytochemicals - betacarotene, vitamin C, folate, vitamin E and unsaturated fats. Recent studies (2007) at Ohio State University indicate that extracts from Hass avocados could kill oral cancer cells as well as arrest their growth. The phytochemicals present in avocado either kill the pre-cancerous cells or stop the growth of pre-cancerous cells in the body without affecting normal cells.

Broccoli & Cabbage

The cruciferous vegetables, such as broccoli and cabbage, contain isothiocyanates and indole-3-carbinol which are known to lower cancer risk. The indole-3-carbinol converts cancer promoting estrogen into a protective element called sulforaphane. Sulforaphane raises the levels of certain enzymes which defend the body from cigarette smoke, pesticides, fumes, and other toxins. Researchers at the Roswell Park Cancer Institute in Buffalo, New York reported at the meeting of the American Association of Cancer Research in Dec 2007 that just 3 servings a month of raw
broccoli or cabbage can reduce the risk of bladder cancer by as much as 40%. The effects were most striking in non-smokers. [Juice Plus+ has Broccoli and Cabbage]

Papaya

In addition to containing vitamin C as an antioxidant and folic acid, papaya may reduce absorption of cancer-causing nitrosamines from the soil or processed foods. Antioxidants and folic acid have been shown to reduce certain cancers. [Juice Plus+ has Papaya]

Pineapple

According to researchers at the Queensland Institute of Medical Research, an extract of crushed pineapple stems, bromelain, proves promising in fighting cancer growth. [Juice Plus+ has Pineapple.]

Garlic and Onion

It contains alluvium compounds that improves immune power, block carcinogens from entering cells and slow tumor development. Studies have linked garlic and onions to lower risk of stomach and colon cancer. Fresh raw garlic is more beneficial. According to research carried out in 2007 by Carlotta Galeone of the Istituto di Ricerche Farmacologiche in Milan, people whose diets are rich in onions, garlic, and other alliums have a lower risk of several types of cancer than those who avoid them.

Kale

Containing certain nitrogen compounds, isothiocyanates, and phytochemicals that may stop the conversion of certain lesions to cancerous cells in estrogen-sensitive tissues, kale also may suppress tumor growth. [Juice Plus+ has Kale]

Sweet Potato

It contains lot of betacarotene, vitamin C and folic acid which may protect DNA in the cell nucleus from cancer causing chemicals outside the nuclear membrane.

Grapefruit, orange and citrus fruits

The citrus fruits contain contains vitamin c, betacarotene and folic acid that help to prevent cancer and reduce cholesterol. [Juice Plus+ has Oranges]

Tofu

Tofu contains estrogens that could help prevent breast cancer and prostate cancer by blocking and suppressing cancerous changes.

Tomato & Broccoli

The results of a recent research conducted at the Food Science and Human Nutrition at the University of Illinois, indicates that eating tomatoes and broccoli together may offer better protection against cancer than eating either vegetable alone. "Separately, these two foods appear to have enormous cancer-fighting potential. Together, they bring out the best in each other and maximise the cancer-fighting effect," Erdman said. [Juice Plus+ has Tomato and Broccoli]

Apple

Apples have anti-cancer properties. An apple can either inhibit or kill cancer cells, according to a Cornell University research carried out in october 2007. The research team identified about 10 compounds, called triteroenoides, in the apple peel that have potent anti-proliferative activities against human liver, colon and breast cancer cells. [Juice Plus+ has Apple]

Gluten free, Casein free

So, Demi's gluten free, casein free (GFCF) now (mostly).
I knew it was something we should try, but I just didn't want to because I thought it would be such a pain in the arse.

I talked to Anjellica, who recovered her son from autism (listen here). Something in the conversation really convicted me - I really needed to at least try it for Demi's sake. What if it DID make a difference? I owed her the effort at least.

So, I made a few tentative steps - got some rice milk, read some labels. I talked to Anjellica again specifically about the diet and supplements she used. I thought in terms of what she could eat rather than what she couldn't. I discovered a friend in corn and anything corn-based (tortilla chips, corn tortillas). Potato chips (Lays) - typically only three ingredients (and you actually know what they are!). Hummus or salsa (for dipping those tortilla chips). Any meat, fresh vegetables, fruit. See? Lots of stuff!

It really has been considerably easier than I expected. However, I only went for GFCF. I did not bar soy and sugar, as did Anjellica. I'll get there when I get there. One thing at a time. Surprisingly, Demi readily accepts the reason "it will make you sick" when I tell her she can't eat something, even something she's eaten numerous times before. Perhaps it helps when I explain to her that a baby-hood friend of hers also can't have milk (cheese, butter, cheetos, etc) because it will give her an ear infection (a story that was quite true). And perhaps it helps that we are currently struggling with that ear saga (part 1, part 2) so she knows firsthand what "sick" will mean. I have been ecstatic with her acceptance of it all.

So, she eats oatmeal (Quaker) or Rice Krispies (HFCS- not good, but not gluten - which evil is worse) for breakfast. She might eat a ham/mustard "sandwich", using corn tortillas for bread. We typically eat meat/chicken/fish cooked at home, along with frozen vegetables, for supper, which works for her. We don't eat a lot of fast food anyway, so I'm learning how to navigate that land-mine.

The Slimy Ear

How pleasant! Attempting to clean slime out of an ear while it keeps slipping off the q-tip. Yes, a lovely image, I know.

I've mentioned Demi's ear infection saga before, although I was surprised I hadn't related the whole story. Last month, her ear started leaking again. It thought it was another perforated ear drum. This time, we got to the Dr a little sooner, so there wasn't as much fluid in the ear. They dx'd it as Swimmer's Ear, since the ear drum did not show a middle ear infection. (Ok, that's good!) They gave us the same ear drops as before to use for 5 days.

The leakage continued as we used the ear drops but seemed to subside, so I stopped the drops. A few days later, the leakage was back. Perhaps I didn't use the drops long enough? I continued them for longer; it seemed to subside; I stopped; it returned.

Recently, I read some posts on the awesome Kabuki Support Network that I follow daily about fungal ear infections. One mother described an infection that "leaked slime down his neck constantly" which sounded exactly like Demi's issue. It certainly didn't look like any swimmer's ear that I had ever heard of, since it drained constantly, coating her hair, cheek, and neck at night (until we stuffed her ear with cotton 24/7).

After going online, I learned that the ear drops used to treat Swimmer's Ear could actually make a fungal infection worse, which also coincided with Demi's symptoms. It also said that 95% of fungal ear infections responded to standard OTC athlete's foot remedies. We'll try that for a bit, along with bumping up her anti-yeast protocol in general, and see what happens.

Mushroom-based Superfood - H1x1

Waiora is introducing a brand new product next month. Check out the video above for details. AgariGold is not yet available - not until March 13th. Research H1X1 and NK cells.

More details: Zeolite Wellness Team Z and Waiora's site

New progress

We had a new family in the neighborhood this school year. Not new anymore since we see them everyday. One child in the family has some minor quirks, sometimes trouble in school - mostly handwriting, and the mom mentioned medication.

I have mentioned NCD the possible good it could do. She said she might be interested, but didn't really seem to be. I suspect she was just being polite to me. Unfortunately, doctors/insurance/schedules conspired such that she her supply of medication for her child has run low and she needs some other alternatives.

Last week, she finally tried NCD. I advised her to start very slowly, just adding one drop each day. She has now worked up to 5 and 5 (day 7), forgoing a late dose to avoid any sleeping issues. Just today she said that she hasn't had to remind him to do things in the morning. A small gain, perhaps, plus a modicum of extra peace on busy mornings. She has seen nothing negative thus far. We'll see how it works out...

Red Dye 40

I've heard about and read about the possible negative impacts of various dyes, food coloring, additives, etc. I knew it was probably in things that we ate and drank, but I never went looking for it. This is another instance of why this whole process is a journey for me - I hear about something, I learn about it, and then, finally, I get around to doing something about it.

Yesterday, I met a woman with a 15yo autistic son. After years of using medications, she's trying "alternative" means and has seen some results in less than a week. One particular problem she had with her son was meltdowns after school every day. He was fine at school but became extremely upset soon after getting home. One of the recommendations of her consultant (the same person Demi saw last month!) was to discover a source of Red Dye 40 in his diet. After a little investigation, they discovered that he chose red Gatorade for his drink with lunch every day. This choice could contribute to two things: 1) A huge source of Red Dye 40 and 2) A huge sugar high, followed by a tremendous low when he got home from school. Since he's been off the red Gatorade (less than a week!), his meltdowns after school have disappeared and he's sleeping much better (which could be due to Carol's treatments - the alternative health practitioner).


I don't believe Demi ever had a severe reaction to Red Dye 40, had no reason to go looking for it. But this morning, we were out of kool-aid, which I normally put in Demi's milk. Of course, being the cheap-o that I am, we were using Great Value brand drink mix (which I'm beginning to loathe), which was full of Red Dye 40 - both in the Grape mix and the Cherry mix. Ok, no kool-aid from that source any more. At least I could take the unopened Cherry mix back for a refund.

On the subject of Great Value brand, I've noticed that almost every single package, regardless of the contents, has "Manufactured in a facility that also processes wheat, nuts, etc." - the message varies somewhat in specifics. I checked the can of black beans we had last night - "processed in facility that processes wheat"! Beans and wheat together?? I checked several other containers - everything had a message like that or said "gluten-free". I only found the sour cream (which Demi doesn't eat anyway because of CF), garbanzo beans (we use those a lot in homemade humus which Demi loves), and canned corn to be totally gluten free.

Obviously, my shopping habits need a makeover. It's a journey...

The Rising Epidemic

I took Demi to a birthday party yesterday for a boy from her class. I'm very used to Demi being the only "special" child at parties. As usual, several parents were hanging out while the kids jumped around (one of the blow up jumping places).

I started talking to one parent whom I didn't recognize. She asked me what I did and I explained it in a very summarized form, mentioning that I had gotten into supplements because Demi had special needs. She asked many more questions about Demi and then revealed that her own daughter (who was at the party) had been diagnosed with autism, her son had Asperger's, and her other daughter had ADHD. Wow! A triple whammy!

It seems no matter where I go, I run into people who either have or know someone fairly close who has an autistic child (or perhaps ADHD, PDD-NOS, etc.). I'm fairly certain that mom's groups when I was young didn't spend their time discussing which medications work best for their child or how the IEP process works at this school or that. Does anyone else see that??

I've recently started an "internet radio show" on Blog Talk Radio. Tomorrow, I'm excited to be talking to Anjellica Guthrie, organizer of our local Autism, Coaching, and Education (ACE) group, who has finally RECOVERED her child from autism. She's amazing!

The show is at 11:00am (EST). Just visit http://www.BlogTalkRadio.com/ZeoliteWellness at that time and you'll be able to listen to the information and even call in to ask questions. The show will also be recorded and will be available at the same address after the fact, but you won't be able to ask questions. Through all of her work with her son, Anjellica is a wealth of information!

Too Many Supplements!

Gosh, it sure gets old pulling out all the bottles and getting out all the pills, juice, and drops to give Demi every morning and night. It really only takes a couple of minutes (plus the numerous reminders until she gets it all down), but it seems like such a chore. I'm thinking I'm not alone in this (?).

But, even though it seems laborious at times, I've never considered not doing it, because I believe it's helping her. If anything, I'm just more motivated to read more stuff to figure out something that might help her get further. Most things I've tried have made a difference at first, which eventually led to a plateau. A few things (like GABA, for us) didn't seem to make a difference. But each advance to a plateau is progress forward - which is definitely going in the right direction!

I just wish she came with instructions on what exactly works best with her body in what amounts. Alas, that book has yet to be written. I'll be able to write it after the fact when it won't do any good.

Kindergarten Birthday Party

Just took Demi to a birthday party today. The usual crowd of parents stuck around with the kids, some drop them off and come back later. Today, I really would have liked to have dropped Demi off, because I had to do something with Dana (she played with a friend for the duration). But, since she doesn't act like a "normal" 6yo, I'm afraid to leave her without close supervision.

Last month, I started Demi on a number of new supplements - namely digestive enzymes, probiotics, and GABA. Honestly, I haven't noticed much change, so I'm wondering if I should continue. At the party today, one of the parents who volunteers occasionally in the classroom, so she's familiar with Demi (the parents who know her always make a point of telling me nice things about Demi), mentioned today that, although Demi is usually rather quiet, last Thursday, she had rattled off an entire conversation, taking great interest in this family's new dog.

So, hmmm, are the supplements increasing her language skills? Given the nature of the conversation about the dog (is it a girl or a boy?, what color is it?, what's it's name?, etc), I'm thinking that's not the case. Those are questions that Demi asks her speech therapist ad nauseum, even though she already knows all the answers.

But it was nice to hear that she was interacting nicely with an adult and the adult seemed to understand everything she was saying. That's a step forward. Maybe the additional supplements are working after all.

Autism Study and Comments from Boyd Haley

Although Demi does not have autism, I follow the comments, research, and supplements closely because I believe many of the treatments for autism can potentially help Demi. Many kids with KS also have a diagnosis of autism, which further validates similarities between the two.

I found these comments from Boyd Haley interesting:

RESPONSE TO 2008 R. SCHECHTER AND J. GRETHER PUBLICATION "CONTINUING INCREASES IN AUTISM REPORTED TO CALIFORNIA'S DEVELOPMENTAL SERVICES SYSTEM" WHICH ADDRESSES CALIFORNIA DEPARTMENT OF DEVELOPMENT SERVICES DATA ON EVALUATION OF THE RELATIONSHIP BETWEEN THIMEROSAL AND AUTISM8
January 2008
by Boyd Haley, Professor of Chemistry,University of Kentucky, Lexington, KY

We should all consider that there are two top priorities in thevaccine/autism issue every American should be concerned with. We need to develop a safe vaccination program, and we need to find the causeof autism and eliminate it if possible. I have been a strong proponent of investigating thimerosal as the casual agent for autism spectrum disorders based on the biological science that shows thimerosal to be incredibly toxic, especially to infants. I know of nothing remotely as toxic as thimerosal that numerous infants would be exposed to before 3 to 4 years of age. Below I present several comments regarding this issue and the 2008 Schechter-Grether study that I think are relevant. Mainly, while the Schechter-Grether study appears to be a well done study it suffers from the fatal flaw of assuming that thimerosal was removed to safe levels in vaccines by 2002. They also cut a fine edge as to time when a significant drop in autism rates would be expected. Further, no study exists that proves our vaccine schedule alone is safe, let alone the current one that still exposes infants to thimerosal, a concern they do not address. The alarming concern is that these authors seem more involved at providing material saying thimerosal is safe than they are concernedwith the obvious fact, openly presented in their own data on autism rates, which strongly indicated that increased rates of autism started with the CDC mandated vaccine program. References to support the comments are readily available in many recent publications.

1. Autism was not a known, described illness until about 1941-3, 8 to 10 years after the introduction of thimerosal and similar organicthiol-mercury compounds in biological mixtures used in medicine and other areas. This argues against autism being a genetic illness.

2. In 1977, 10 of 13 infants treated in a single hospital bytopical application of thimerosal for umbilical cord infections died of mercury toxicity. This same topical was used on adolescents without obvious ill effects which strongly supports the concept that infants are very susceptible to thimerosal toxicity.

3. The recent increase (starting about 1990) of autism spectrum disorders correlated well with the advent of the CDC mandated vaccine program which increased thimerosal exposures with increased vaccinations. Due to its toxicity, thimerosal would have to be suspect for causing autism.

4. As expected by science, extensive searching for a genetic cause of autism has not turned up a significant find that would explain the recent increased rate in autism. The latest genetic find, at best, might explain 0.5% of autism causation. Most agree that a genetic predisposition is likely (like those that lead to low glutathione levels), but that a toxic exposure is absolutely needed. Consider also, that this increased toxic exposure would have had to occur in all 50 states at about the same time as all states have reported similar increases in autism rates. Only something like the government recommended vaccine program fits this need for a time dependent, uniform exposure of a toxin throughout all the states.

5. In the Schechter-Grether study it is implied or assumed that all thimerosal containing vaccines were gone by the end of 2002 due to their expiration dates. I don't think this is a valid assumption. I have talked to mothers who asked to see the vaccine inserts as late as 2004 and found thimerosal present as a preservative in infant vaccines being used in certain clinics. Also, in 2004 the influenza vaccine was recommended by the CDC for infants 6 months of age and older. It would appear as if a thimerosal free vaccine time-frame would be very hard to identify, if one ever existed. I have read that the average age of autism diagnosis is near 44 months of age. Therefore, while it does seem reasonable to expect a decrease in autism after 4 to 5 years of complete thimerosal removal, assuming a consistent diagnostic protocol was used, it appears this has not been accomplished. This means the Schechter-Grether study is likely somewhat premature in reaching the conclusions reported in that enough time has not passed for the expected decrease to occur and that they were quite optimistic in identifying the dates of thimerosal reduction and underestimate exposures occurring between 2002-4.

6. If, indeed, the complete removal of thimerosal from vaccines was not followed in an appropriate time by a decrease in autism then this would be solid proof that thimerosal was not causal for autism. However, thimerosal has not been completely removed from vaccines and thimerosal used at the original levels in the manufacturing of these vaccines with "trace" amounts left in the vaccines when bottled. I don't know what level "trace" is since it is not a term used in science to describe an actual amount. Some called the 12.5 microgramsmercury in the older vaccines a "trace" amount. Bottom line, the infants are still getting some level of thimerosal, a "trace" amount that is free and an amount of ethylmercury that is bound to the proteins that induce the immune response. If vaccines are causing autism and it appears this is a strong possibility based on the California data and, if removing thimerosal added as a preservative really does not reduce the autism rate then the causation is much more complex.

Consider the possibilities that:
A. Autism may be caused by a thimerosal modified protein that sets off an immune response or causes some other biological reaction that can cascade with injurious effects. Since the vaccines are manufactured with thimerosal present in abundance it is quite likely that any cysteine containing proteins would be modified with ethylmercury. Removal of most of the free thimerosal (or just not adding it) would not decrease the level of any toxic modified protein produced during the vaccines production that might be causal. Removing the thimerosal added as a preservative would not decrease the amount of this ethylmercury modified protein in those vaccines with "trace" thimerosal levels.B. That autism could be caused in susceptible individuals by very low thimerosal or ethylmercury modified protein exposures due to their genetic susceptibility or other factors (general health, gender). In this scenario the higher thimerosal exposures are not required and the induction of autism is not thimerosal concentration dependent at the old and new thimerosal vaccine levels, but just requires a significant exposure level that is met by the vaccines containing the lower"trace" amounts of thimerosal and past thimerosal levels in vaccine production processes. Bottom line, if genetic susceptibility is involved then causation of autism may not increase linearly with increased thimerosal exposure. Causation may only require low thimerosal exposure or exposure to modified proteins. It is possible that the reduction of thimerosal as in the "trace" was just not enough to produce a safe vaccine. Not all toxins work like alcohol and the old "dose makes the toxin" is not always correct. As long as they are used, the mere use of "trace" thimerosal in vaccines along with higher levels in the flu vaccine will always prevent a conclusive answer to thimerosal's involvement in autism causation. What should be studied is the "no exposure" versus the "exposed" populations with regard to autism rates.

7. If indeed autism is rare among the non-vaccinated Amish populations, as reported by Dan Olmstead, I find it an amazingly oversight that the CDC and others responsible for infant health do not fund a study in this area. This study could go both ways, if theAmish have autism rates identical with the rest of the population the argument would be over---neither vaccines nor thimerosal would be causal for autism, and I personally would argue in this direction. If, however, the autism rates in the Amish are exceptionally low then vaccines would have to be considered as a prime suspect in causation with the presence of the highly toxic thimerosal the main suspect. If the results in the 2008 Schechter-Grether study hold up with time, and complete removal of thimerosal does not cause a drop in autism rates and the autism rates in non-vaccinated populations are low then something else in the vaccines would have to be considered the major causation factor for autism. However, without doing the non-vaccinated population studies there cannot be a conclusive statement either way about either vaccines or thimerosal as being causal for autism. The steadfast refusal of the CDC and others to support such studies being done is part of the reason that many parents, scientists and physicians have severe doubts about the sincerity of their efforts to resolve this issue. This is how I think, when I review a paper submitted for publication I always ask why an obvious experiment wasn't done. The study of non-vaccinated populations is a very obvious experiment that the CDC and its supporters appear to refuse to consider. This makes me suspicious that this knowledge exists and is being suppressed because knowledge of the rate among the non-vaccinated population would answer many questions.

Finally, the Schechter-Grether study may be good news to the vaccine manufacturers and those who recommended and use the mandated vaccine program as it serves as manufactured uncertainty about the thimerosal involvement in autism causation. However, it presents a major concern to the parents and families of infants since it implies that our vaccines, even with most of the free thimerosal removed, may not be safe and that our CDC does not have a clue about what to do make them safe. Common sense would lead most to attack finding the cause of autism instead of trying to prove something besides thimerosal is causal. The major question is "are our vaccines causing autism"---only comparing the non-vaccinated to the vaccinated will answer this question. Common sense would have lead to this comparison being done first and being done 10-15 years ago. In the recent past I have recommended that parents vaccinate their children with thimerosal free vaccines as I considered them safe. If Schechter-Grether are correct, and vaccines, but not thimerosal, correlate with increased autism rates, then I am in error assuming vaccines are now safer with regards to autism risk than they were 2000.

©Copyright 2008 by Vaccination News, A Non-Profit Corporation. AllRights Reserved. This content may be copied in full ONLY withcopyright, contact, creation, authorship, and information intact(including all links), without specific permission, and ONLY when usedin a not-for-profit format. If any other use is desired, permission inwriting from Sandy Gottstein is required.

Update: Serious Health Issues

When I went back to check when I had last updated about my aunt's serious health condition, I could only find something back in August '06. Did I never give any other updates?? Anyway, here goes.

Diagnosed with serious health condition in July (lungs), started NCD in August, surgery in September (never measured before surgery), followed by radiation and chemo and such things that might treat a serious health condition. She took NCD on and off as she could remember it. She eventually healed from the surgery, suffered through the treatments and was pronounced serious-health-condition-free in April '07. Yea! Celebration!

However, the joy was not to last. Less than two months later, her next check up revealed that it had returned. :( This time, however, because of the difficult time she had had with previous treatments, they told her there was very little they could do for her. After numerous tests, they finally told her that she could undergo another difficult surgery to remove it, but there was a chance, if it was in a certain place, that they would not be able to do anything.

So, last October, she elected for the surgery as the only recourse against the serious health condition invading her body. Unfortunately, they discovered that it was in such a place that they could do nothing to help, so they sewed her back up. She has slowly been healing from that ordeal. In late November '07, she decided, since she had no other recourse, that she would give NCD another try, so she started taking it more regularly, trying diligently to take 15 drops at least 3 times/day.

In early December, I called to see how she was doing, only to find that she was out Christmas shopping for the second day in a row and was feeling great. She had told her husband once, while in the process of taking her drops of Natural Cellular Defense, that she wasn't sure if it was the NCD or not, but she sure felt more energetic.

Earlier this week, I spoke to her again. She reported that she had come down with a cold a couple of weeks ago, so she stopped taking the NCD. Once her cold was mostly gone, she resumed the NCD and immediately felt peppier. She says now that she really thinks it's doing something for her. And we're still praying for her miracle.

She doctors have told her officially that she has about 6 months left. We have a family reunion scheduled in June. We're planning a Miracle Celebration that weekend for her because she WILL still be there to celebrate!

Demi's Progress

I'm so proud of Demi's progress in school!

When school let out for Christmas break, Demi's special ed teacher gave us a list of things to work on, including working with coins, counting, writing, and reading. She gave us three new readers to work through, two with new words and a third review one.

Just about each day of Christmas break, we worked at least a little bit each day on homework. We're making progress on the coins - she knows all of the coin amounts, but she had trouble identifying them. Writing is a struggle. She can pretty much do all the numbers and capital letters (with a couple of exceptions) and we're starting on the lower case letters. Her progress in reading is the easiest to measure, since each reader has a definitive test before moving on to the next. After finishing the 10th reader, she has about 30 words and can sound out countless more.

Over Christmas, we saw Demi's grandmother (a 3rd grade teacher in SD) and a cousin (a kindergarten teacher in CO). Both of them said that Demi was way ahead of the kindergarten classes they knew. Their kindergartners were still working on letters and wouldn't get to blending sounds into words until the spring. (I believe that's a function of GA's preK program and an excellent school district.) I was so proud of Demi when she could read each of them a story from her reader! She's working so hard!

I remember a year or so ago when I heard about another Kabuki child reading in kindergarten. I was so surprised, amazed, and encouraged. I feel the same way with Demi. That's what makes me continue the regimen that she has. Anything I can do to help her body and mind function better will help.