Saturday, December 26, 2009

Delayed reaction to egg?

So we were very hopeful after the first Bax3000 treatment and the first egg introduction went well, but don't forget that these foods can have delayed reactions in our kids too and for Grayson, most of them are delayed. We did a second day of eggs with Grayson on Christmas morning. His behavior was awful for the first half of the day, but we chalked it up to him going to bed too late the night before, waking too early and being overly excited about Christmas....ironically, he did great all evening at his grandparent's house. He played with his cousins well, he listened well, he shared and he was happy and silly. Even a late bedtime didn't rile him up, surprisingly!

So where did the problems start? We noticed on Christmas Day that he was starting to itch the sides of his face, under his chin and what looked like a little dance he does, when his ankles itch. He also rubs the backs of his hands across the front of his belly and sides. It wasn't too bad yesterday, but today (the day after Christmas) we are seeing it more. He can't seem to stand still and although it looks like he is just shifting his weight back and forth, he's actually using one foot to itch the other...and back and forth. When this is happening, people tend to ask him, if he needs to use the potty and he says, "No, I'm just itchy". The reason we are so familiar with this "symptom" is, because he had this same reaction (although MUCH more severely) to L-Carnitine. L-Carnitine is a protein and our doctor told us that he could be truly allergic to it, like IgE allergy....hence the severe itching. When we removed the L-Carnitine, the itching stopped almost immediately and a challenge confirmed our findings, Grayson is allergic to the protein in L-Carnitine. So why do I bring this up? Well, egg is a protein, as well, and when we had the NAET assessment for egg, I was told he reacted to egg on all levels, neurologically, immediate AND delayed. Now, I don't know if one egg interaction would have resulted in the same reaction, if having it two days in a row was the reason we are seeing a more severe reaction, but either way, I believe he is reacting still.

Before starting the study for the Bax3000, I spoke with another Chiropractor who has been using the Bax3000 for a year successfully with kids on the spectrum and he told me that it is necessary to clear "program 1" (chemicals, vaccines, etc) before doing anything else. I wonder, if this is why the egg hasn't cleared for Grayson? Only time will tell...stay tuned.

Wednesday, December 23, 2009

NAET on steroids!!

A friend of ours has turned us onto a new path, which may potentially change our lives, forever! She told me she enrolled her son into a research study regarding something called BioVeda Bax 3000. We were lucky enough to also be accepted into this study and are so grateful to the generous Doctor doing this study!! With all of the costs associated with caring for our son, we never would have had the opportunity to try this treatment. We are also very thankful to be a part of something that could change the face of autism in the future!

We had already begun using NAET treatments, which is the process of eliminating allergies by retraining the body to recognize allergens as safe. This process is manual, however, allowing for human error. So how does the BioVeda Bax 3000 differ?

First, let me explain a little bit about how allergies work, VERY basically. When a person is sensitive to a substance, wheat for instance, there is an increase in stress of the central nervous system and, because of our body's innate way of drawing connections, even the word "wheat" or the mere thought of it, can cause the same anxiety, believe it or not. This anxiety produces an inappropriate response by the central nervous system which in some people, depending on the allergies, can result in more severe cases, such as autoimmunity.

So here is my layman's explanation of this new device. It takes the same basic premise that NAET is built on and uses a digitized library of substances such as: foods, metals, vaccines, fungi, chemicals, and many other environmental substances. The technology imitates the frequencies of these substances and instigates nervous system responses from the body to determine what the person is reacting to. The treatment retrains the body by causing it to release endorphins while encountering the substance in question....essentially saying, "this is safe". It erases the body's inappropriate desire to attack the substance. This process is a combination of positive conditioning and biofeedback. When the stressful event occurs in the real world, the relaxation training is remembered by the central nervous system and the result is the elimination of this inappropriate reaction to every day substances.....viola, allergy GONE! This whole thing is associated with stress and the Bax 3000 ultimately reduces stress through relaxation training.

Last night we had our first meeting with the Doctor conducting the study and he told us that our case is considered severe (big surprise) and, because of the sheer number of allergies we are dealing with, we are going to start by treating for ALL of the substances in the first phase protocol. That should take us through about 25 treatments, then we will test for the need of further treatments more specifically. So we jumped right in and treated for egg last night. Why egg, you ask? Well, because egg is one of the more common sensitivities and it happens to be a protein that most resembles human protein. Do you see what could happen to an individual with an egg allergy? Do you think the body could eventually have the ability to be allergic to itself...AKA - autoimmunity! Really makes you wonder, doesn't it?

Now where were we....oh yeah, A cold laser holds the frequency that our body would recognize as egg and it is run from the forehead over the head and down the spine repeatedly while encouraging various changes in brain waves (ie - holding breath, breathing out, closing eyes, etc), then pressure points on the hands and feet are held for a period of time. This is the process of inducing the release of endorphins while the body is in contact with "egg"...or so it thinks! It's important to note that even with decreased or the elimination of symptoms, a blood test will most likely continue to show antibodies to these substances, because the body tends to hold onto antibodies for a long time. It's the symptoms that are more telling of what is happening in the body, since this is our natural alarm system. No symptoms = no no need for alarm!

So before I tell you how this treatment effected Grayson, let me give you an idea of what is involved in preparing for the treatment. There are a lot of guidelines to follow, which for an adult might seem easy, but for our kids....some could be more complicated.

- don't wear dark clothing (not sure why)
- don't take ANY supplements or medications for FOUR hours before the appointment. This is VERY hard for us considering Grayson requires treatment with anti-microbials every three hours in order to avoid symptoms and we give high dose probiotics at bedtime.
- drink lots of water for 24 hours before the visit
- don't wear anything tight
- don't wear jewelry
- no pain medication for 12 hours before (hard to abide by with a teething child!)
- don't consume alcohol (need to keep the kids away from the booze!!)
- no perfumes, strong smelling deodorant, essential oils, hand lotions, colognes, etc.

Then there is the list of things to avoid AFTER the appointment
- they must fast for 6 hours after the treatment (which is why we schedule our appts. for RIGHT before bedtime)
- you may not, shop for 8 hours, go to a restaurant, visit hair salons, barber shops, etc.
- avoid all chemicals for 12 hours, like gasoline, so refuel before the appointment
- do not bathe or shower for 8 hours
- do not chew gum, use breath mints, drink anything except water after arriving for the visit
- avoid massage, acupuncture, vigorous exercise, hot tub, sauna, steam room, swimming...all for 12 hours after treatment
- again, we have to keep the kids from hitting up the bottle for 12 more hours....darn! It helps them sleep at least, ha ha ha....just kidding, OF COURSE!
- and then there may be an additional list of things to avoid, depending on what you are being treated for. For example, the egg mixture includes poultry, feathers, and tetracycline (an antibiotic)

So now for the before and after effects we witnessed. I have to add that I could be over analyzing, but for at least a week before treatment, we were seeing a lot of old behaviors cropping back up, like sleeplessness including hyperactivity right before bed making the bedtime routine challenging, trouble relaxing and falling asleep, and multiple nightmares after midnight. He was beginning to sleep in very late (9:30am) because of the many nightly disturbances he was experiencing. His daily behaviors were increasingly getting worse too. There was an increase in frustration and defiance, he was becoming very negative, everything he said came with an err of irritation rather than just being able to speak to us, even simply talking to us was becoming a challenge. He would actually stomp, grunt and cry throughout it all. His tolerance threshold was nil and sensory seeking was back big-time! His interactions with his brother were becoming mean and vindictive, something I have no patience for, I might add. He was also showing signs of increased hyperactivity, verging on the edge of manic. He was throwing himself all over furniture, into people, onto the floor, he started rubbing things with the backs of his hands a lot, swatting at his head and ears, which we haven't seen in ages....the list goes on and on.

SO....we went into the appointment with him acting VERY hyper, attention-seeking and he was severely bloated and I mean like pregnant looking (even the Dr. commented on it and we took pictures). While we were trying to talk to the Dr. he was tossing books on the floor, instigating his brother, saying "no" to us when we discretely asked him to stop some of these things. He sat through the treatment VERY well though, probably because he was on daddy's lap and he saw his younger brother go through treatment before him. When we left the office, he still seemed a bit hyper and testy, but by the time we got home, he was mellow and happy. For the first time in probably a week or more, he was CALM and happy and not challenging his father every step of the way through his bedtime routine. He wasn't running everywhere, he walked!! He came and hugged Gavin and I without a battle. After he was put to bed, he only came out of his room once to tell me that he "heard bells" thinking Santa was already in the sky, ha ha ha! Then he stayed in bed, fell asleep easily and STAYED asleep all night! He woke fairly early, but was happy...maybe too happy! He was still showing some signs of being extremely hyper, but I thought it was interesting that he was controlled in the process of being bouncy and happy. He played well with his brother, teaching him and actually interacting with him, responding to his needs. They went to the playroom on their own (he's been SO clingy lately, this was amazing) where he found a building kit that he hasn't played with in ages and he built a colorful and very accurate caterpillar from it, all the while, allowing his brother to play WITH him! For the first time in a LONG time, I didn't hear Gavin crying from the other room.

Enter eggs (dun, du du dunnnnn) - After his NAET treatment for egg, I tried eggs twice and both times, he immediately became even MORE uncontrollably hyper and irritable, as hard as that is to imagine, it's even harder to live with. I had told a few other people that I didn't think it worked. My husband thought maybe we would see less and less of a reaction over time...? I didn't feel willing to go through those after-effects again and again. Well, this morning we tried eggs and let me tell you, he ate a LOT, probably 2-3 eggs, easily. He kept asking for more. His behaviors remained consistent with his waking behaviors. So while he didn't get less hyper (he is still fidgety), he is still playing nicely and being patient and affectionate with his brother, he is talking nicely, he is independent, he is even more flexible with changes in his expectations, in the past he would have major outbursts and end up crying.

So could this be a coincidence? Sure it can. The only way to know for sure is to watch the way things progress with additional treatments. I have to say though, I am already impressed. Here's to hoping (cheers).

Merry Christmas to those who celebrate it!

Tuesday, November 24, 2009


This is probably a new term for you so I will edu-ma-cate you first. Biofilm is a polyssacharide matrix that microbes develop to protect themselves. It allows them to survive in a less than optimal environment, AKA - a healthy body? These pests are smarter than us and always will be as long as we continue to use medical prescriptions to fight them. Biofilm is a sticky film that allows them to remain undetected by the body. So while we are doing all of our treatments trying to kill these little suckers, we see some progress, but then stopping the treatments proves to only result in yet another build up of the symptoms yet again.  So we know we probably have a biofilm issue at hand. Since the Flagyl antibiotics only addressed our bacteria issues for about two months, if even, both times we used it, we knew we had something more deep seated to deal with. This stuff has probably been setting up residency for a few years! We knew it was time for the BIG GUNS!! Hence, the biofilm protocol!

 The first step of this process is a few specific enzymes that poke holes in the biofilm by breaking down their cell walls which then allows the following treatments (natural antimicrobials/antivirals) to get in there and kill them while they think they are hiding. It's a process that takes time (months), but usually results in great long-lasting benefits....providing we are also removing the metals at play too! These things go hand in hand, microbes and metals protect and benefit each other.

Once we open the biofilm, we are essentially reactivating the body, because previous to this step, it was actually unaware of it's very well hidden intruders. This can result in a plethora of symptoms that can range from flu-like to stimmy and irritated. It's basically BIG die-off and the process requires a good mop-up step to usher out the toxins (like having a dead creature in your basement, eeeew, get it out, right? It's toxic), otherwise they will overwhelm the body (and the liver) and become neurotoxic in the process. So here is our daily routine now:

I am only doing the biofilm protocol once a day right now, but after 3-6 weeks, we will consider a second dosing schedule in the day. So essentially what I am doing is using the biofilm in the morning hours (getting the empty stomach is easier then) and then I continue with the dosing schedule we were using pre-biofilm in the later parts of the day, because, if we go more than 3 hours without dosing something, the yeast and bacteria start right back up. Then at bedtime we give hefty doses of probiotics to rebuild the good flora. More good crowds out the bad!

The "killers" as I like to call them (antimicrobials/antivirals) may be more than some kids can handle, but as I mentioned before, we get severe overgrowth pretty fast, otherwise. So while the biofilm is in place, I am hitting this stuff pretty hard and seeing results! Previously, if we went more than 6 weeks without Flagyl, we saw MAJOR bacterial symptoms (aggression, hitting, throwing, defiance, spacey interchanged with hyper, negative attitude all day, and a lot of emotions and crying).

We do a bit of rotation, because of leaky gut, so the food supplements along with anything that contains coconut (a #1 on his IgG panel) is rotated on a four day rotation.

1 - I keep the bottles of Klaire Labs Interfase (Important, NOT Interfase Plus, it has EDTA in it which is unsafe for mercury toxic people) and ViraStop (you could also use Lumbrokinase here which is GREAT for Lyme) with a cup of water on my nightstand since he comes to my room first thing when he wakes. This allows me to start the pre-food dosing asap. I give him 1 ViraStop and 2 Interfase caps on an empty stomach.

2 - When we get downstairs, I give him either his home made electrolyte solution or an apple cider vinegar drink made with warm water, baking soda and honey (depending on our rotation day). He drinks these right down on an empty stomach and looks forward to both of them!

3 - 30-45 min (I use the stove timer, lol) after the Interfase and ViraStop, I dose our "killers" (4-5 drops Bio-Alternatives OoO, 3 droppers full of NOW Foods OLE which is 300mg, 15-20mg Biotin, 3-4 drops GSE and/or Nystatin depending on yeast symptoms, and then we rotate either a full cap of Pharmax Caprylic Acid or a 1/3 of a cap of Natures Way Uva Ursi - this is a new add in for us so we are starting slow). We LOVE the Caprylic Acid and see a difference in him when using that on his rotation days.  A quick note about GSE here - In the two years since I've written this blog, we have learned that a few drops of GSE wasn't our ideal dose.  He is now on two Nutribiotic tablets (125mg each) PLUS 10 more drops.  I wish I tried this sooner, but working up slowly is also important for the sake of severe die off and liver tolerance.

4 - He takes digestion enzymes and two HCI (hydrochloric acid capsules), eats and has his supplements then I set the timer to an hour but anywhere between 1-2 hours is good.

5 - 1-2 hours after supplements and "killers", I give two PectaSol C by EcoNugenics to mop up. This is proven to also move metals. It's a Modified Citrus Pectin which interestingly our son does fine with considering all citrus was elevated on his IgG. You need a dr to order, but all I did was call and tell them that Dr. Woeller of (I am a member) suggested them and they let me order. It's expensive, $69 a bottle, but there are 270 capsules in a bottle. Everything we give seems to be expensive, ugh! I could be driving a brand new Mercedes, I tell ya!! Not even kidding...You can also use good old activated charcoal here though.

6 - I wait another 1-2 hours to start dosing our "killers" again and then we do that at 3 hour intervals so usually that works out to around noon or 1pm and again at 3-4pm. This is perfect for his school schedule this year, but I am seriously fretting about him in all day kindergarten next year.

7 - At dinner he has 4-6 ounces of kombucha (a fermented iced tea drink with enzymes, probiotics and B vitamins, it's the only way he tolerates the B vitamins!) and at bedtime, 3 Culturelle and 3 New Beginnings Probiotic Support which contains a good amount of Sacc B in addition to a broad spectrum (no-strep strain) dairy-free probiotic. We are doing well with these lately, I can tell by the way he wakes up the next morning. He is calm, happy and compliant.

So that is it, our routine, which now seems to be working pretty well. Sometimes we need to up our yeast protocol, especially when we are on a chelation round, but he responds well and quickly. We also do the epsom salt baths a few times a week, and I have recently added in a bentonite clay bath here and there to assist with the toxin die off. He gets various supplements three times a day as part of all of this, as well.

We had massive die off initially, probably for the first 5-7 days, but that seems to have leveled out, thankfully. I thought I would really lose it, but I stuck with the protocol, increased the PectaSol mop up a bit occasionally and sure enough, he has leveled out nicely, phew!! It's been a while since we have had a good constant without Flagyl. We still see some yeasty signs, as I mentioned, so we are working that out too. He's getting "bored" with school and I don't know, if that is related, but the teacher has been made aware so after the Holiday break, I hope he gets back into the swing of things. I have to say that this is the longest we have gone (8 full weeks) after ending the Flagyl, without major bacterial signs building back up!

I might also add that when I started this protocol with our 17 month old (who also shows signs of yeast and bacterial infections) we had the oddest BM and since he is still in diapers, I got a nice eyeful of a small compact ball of mucus and sticky green something-or-other, eeew! I have read that the biofilm is clear so I am not sure what the compact green stuff was, but it was all intertwined and weird, to say the least. Dr. Woeller suggested that it could just be a plug that was moved out by the protocol. It didn't even connect when I was changing the diaper, instead, at 5am the next morning my eyes popped open and I thought, "I KNOW WHAT THAT WAS..." AKA - biofilm response! Onward...

Friday, November 20, 2009

Bio medicine, just for the autistic?

I'd like to talk a little bit about bio medicine and something that tends to confuse many parents. Right now, much of the biomedical research being done is on the ASD (Autism Spectrum Disorder) community and the results achieved with biomedical treatments. Why is that? Probably because they are the most effected and we are reversing what was once considered a purely genetic and irreversible condition known as autism. But do I think these are the only people who would benefit from bio medicine? Absolutely not! We are seeing more and more research on bio medicine effecting those with autoimmune disorders like Lupus and Arthritis, Lyme Disease, and they are even reversing cancer! The rise of ASDs is an epidemic, so it's drawing attention and rightfully so. Twenty or so years ago, ASD afflicted 1 in 10,000 kids. Now? 1 in ONE HUNDRED at best! In the UK, it's 1 in 60!

So what is bio medicine, you ask? Well, let's dissect the word, it pretty much makes, like biology and medicine, hmmm, ok so here is the medical definition:

  1. The branch of medical science that deals with the ability of humans to tolerate environmental stresses and variations, as in space travel.
  2. The application of the principles of the natural sciences, especially biology and physiology, to clinical medicine.
So we are treating illnesses with nature, it's that simple. Anyone, wait no, EVERYONE can benefit from that.

Where we seem to get hung up, as parents, is hearing the term autism used in conjunction with this form of treatment. We conclude that, if we need to use bio medicine to help ourselves or our kids, it MUST mean they are autistic, right? WRONG! I think the only reason we see this connection is, because this disorder is single-handedly bringing bio medicine to the forefront of medicine. When we were first looking for natural ways to address what was going on with Grayson, I would see the word autism and turn around, change my path, just to come back to this dreaded word yet again. I kept saying, " but I don't get this, he's not autistic"....and no, he has never been diagnosed as being autistic, but why do I keep ending up here? Because it's working for kids of ALL degrees. Because it's basic biology people!! Remember, something as common as ADD is actually on the autism spectrum, and I repeat "spectrum".....there are all degrees of illness associated with this particular disorder. Label or no label, what it comes down to is there is a set of "symptoms" that come with the illness we are dealing with and whether they put your child on the spectrum or not is not what is important. What IS important is that you recognize these symptoms as something that needs attention. So is my child autistic? No, he's not. He's social beyond words, he's funny and he reads body language better than some adults I know, he is bright and very aware of his surroundings. Did he have symptoms of an autistic child? He sure did! He hand flapped, he started to loose eye contact at the worst of it (and still does when his health takes a turn for the worse), he has tantrums that aren't reasonable, he used to line up cars incessantly, he was and still sometimes is a sensory seeker (when his gut dysbiosis flares), he bounces off the walls and couches, he traces outlines of our cabinets with his hands, he has moments sometimes DAYS of being highly emotional....does any of this sound like it could be your kid? They sound like normal childhood behaviors, but what really is normal? Are we becoming accustomed to these behaviors over time, because they are more common and because the child isn't "autistic"? And when you clump all of these "behaviors" into one child, do they take on a different definition? Yes, they become symptoms of something that is very hard for parents to grasp. It's not necessarily autism, because what is going on inside of an autistic child's body can also go on inside of a neuro-typical child, which will then cause the very same symptoms that are often seen (to a more severe degree) in autistic children. I truly believe that the severely inflicted children who are at the far end of the autism spectrum are just the most fragile kids alive. Everyone handles things differently. Just think of how you handle a cold, your neighbor might have completely different symptoms with the same cold strain and allergies, you have one to mold and your cousin reacts to dogs, your child might react to milk!....These kids can't handle toxins, they cannot handle the pesticides, the heavy metals, the plastics, the cleaners and bleaches, the injections, the viruses, the EMFs, the radio frequencies, the chemicals in mattresses and fire retardant pajamas, the parabens in soaps and lotions and even TOOTHPASTES.....they are breathing, absorbing, eating....toxin after toxin and what is the one common thread they all have? More than 90% of these kids have low glutathione. This is a naturally occurring peptide in the body, a natural antioxidant. It drives our ability (or lack thereof) to detox these toxins that we encounter increasingly every day. You might be interested to know that Tylenol (our teething best friend at one point, right?) reduces glutathione. So a child who might have already been on the brink of low glutathione, give him or her Tylenol and you have just enabled his or her body to hold onto more toxins. Is it that simple, no it's not, there is a lot more that goes into this vast system, but this is one of the many things we are seeing more and more often with children these days. Do parents realize this when they reach for the Tylenol, because they just want their poor achy child to be comfy, no they don't! Do they realize that the reflux and ear infections are commonly from dairy allergies, probably not! Do they know that colic and loose stools often accompany gut dysbiosis and that their children probably need probiotics, I bet they don't!

So I am going on and on, and it's so easy to do once you get into the biology of it all, because it's all so connected, but my point is that every child could be effected to some degree. I see children in grocery stores and I think...."I wonder, if his parents know that those behaviors mean something more than "he's a boy". Having a child inflicted with a weak immune system that allowed him to accumulate more toxins than he can handle has made me hyper sensitive to those signs. They are universal and I believe that at some point, knowledge will expose the truth about our children's health. I honestly believe that we are at a state of emergency with our kids. If we don't start eating differently, cleaning our homes differently, reading the ingredients we put into our children's bodies, using water filters, washing produce, buying organic meats, we are going to see an incredible increase in autoimmune diseases in this generation and the generations to come. It is a documented fact that babies today are born with over 500 identifiable toxins already in their system, as tested in the umbilical cord fluids. So I encourage you, when you see a behavior that troubles you, or a rash that a doctor can't tie to an illness, or even a continuing sleep disturbance, consider this possibility. It's time to learn what we can do for our kids and their futures.

So now you are probably thinking, ok this is crazy, YOU Are crazy and what do we do about it anyway?! Well there are some really basic and simple things we can all start doing, like always washing your produce thoroughly, even thick skinned produce which will likely infect the protected inside when you slice through the dirty bacteria laden skins, you can shop organic as much as financially possible, you can clean with something as simple as vinegar and water, it's so safe you could drink it! And what about nutrients, get your kids tested for nutritional deficiencies, supplement with things like probiotics (always) and omega 3s. Switch to natural toothpastes without fluoride (you do NOT need fluoride for dental hygiene even though successful marketing schemes will have you believing that), replace your soaps, shampoos and lotions with natural and organic products to avoid the nasty chemicals our bodies don't know how to process (your skin is the largest organ of your body and you shouldn't apply anything to it that you wouldn't be able to eat), eat a healthy wholesome food diet and watch for reactions to foods (which isn't always easy since you can react up to FIVE days after ingesting a food), avoid ALL preservatives and colorings. If you can't pronounce an ingredient, avoid it! These things are simple, they take some time and thought, but the health of your child is a stake. If this doesn't fix the concerns you might have, keep searching for your answers. They don't call us Warrior Mothers for nothing!

Friday, November 6, 2009

Doctor doctor on the wall

I swear that is where I feel like our doctors are these days, posted like a trophy on the wall. "Look, I am a degree"...but where is the continuing education, where is the common sense, where is the research? I know, I know, I have been reminded by even my own pediatrician that they do NOT prevent, they are taught to treat illnesses, to be reactive, not proactive and they use medicine, period. We are so torn between going to our standard pediatrician who is covered by our insurance, but doesn't know a thing about what we are going through or going to our DAN! doctor who is a holistic doctor and handles many cases of children on the spectrum through biomedicine, BUT insurance will not approve any of his tests or treatments, they are considered "experimental", hence making the appointment ineligible for payment too. Until a parent is faced with these frustrations, you could never ever know how frustating it is to know that your child will only get better, if you are financially capable of fronting the cost for the doctors, many tests and the long-term treatments necessary to correct his or her health problems. How do you think it would feel to know that the only thing standing between you and your child's wellness or recovery is money, and a lot of it? Frustrating to say the least, unfair at best. On top of it, the parents need to highly educate themselves on the treatments, because there are SO many biomedical protocols out there. What works for one might not work for another, so in addition to spending a fortune, imagine spending a fortune on things that don't work so you end up with bottles upon bottles of full supplements that didn't work, just to move onto the next $40 bottle of something, that maybe doesn't work either! It's a never-ending battle and we feel SO alone since we often can't just pick up our phone and call a ped for advice. They wouldn't even run a viral titer so I can see if he has developed antibodies to the vaccinations he DID get.

Since we are caught in this position, I had some standard blood tests run on Grayson just to see where his health status is, at least it's covered by insurance. He doesn't have anemia, his hemaglobin is good, thyroid good, D levels are great, but his CBC showed elevated platelet counts. The range is 150-400 and his count is 532. I have done some researching and the scary things like leukemia aren't even an option, I won't even give that a thought, but some things did pop out at me on a few web sites. I saw mention of irritable bowel disease and clostridia as possible links. Now THIS would make sense. So while I am still uneasy at the results, I am somewhat relieved to see that the very thing we are battling could be at play here, again, supporting every route we have taken, confirming to me and anyone else who wonders about holistic quakery, that this autoimmune issue is, in fact, real! I am not trying to find something wrong with my child, I don't WANT him to be like this, he just is. The recurrent medical findings confirm that my child is not a case of hypochondria, he is ill, very ill on the inside and I intend to fix it, even if I have to do it alone! If your child had a heart disease, you would do everything, and more, in your power to help him, this is no different.

Wednesday, November 4, 2009

Long time no chat

Wow, it's been months since I have updated the blog. School started and things got crazy! As the old saying goes, "No news is good news" and this is true in our case! We had such great changes with the Flagyl in July and then in a matter of months, we were seeing an increase in the bacteria-behaviors like anger, aggression, defiance and the resurgance of sensory issues occasionally. So back on the Flagyl we went...I wanted it addressed before school started and what a great idea that was. Last year when he started school, he was a mess, an absolute mess with hitting, very vocal meltdowns, temper tantrums and acting out. This year he is the perfect dream student! He is older too, of course, and he loves helping the younger students which I hear he does very patiently...that's my boy! We have been off the Flagyl for about a month and so far so good. We try to keep the bacteria at bay naturally with daily Olive Leaf Extract, Oil of Oregano, Biotin, we rotate in Capruylic Acid four days a week and I recently bought peppermint gel caps, but I haven't really gotten them into the action yet. I am still researching that front. Then at bedtime he gets four doses of probiotics - two dairy free Culturelle and two New Beginnings Probiotic Support which contains Sacc. B.

We are still chelating and just finished with round 14. We had a few blunder rounds....forgetting to wake up for a middle of the night dose, oops, so we had a few do-overs, ha ha ha. It's going really well though. He handles chelation great, comes off the round fairly well, with just a tad of the high sensory stuff like shirts bothering him and pajamas not fitting right, the covers on the bed are annoying and won't lay right, but that is fleeting thankfully. If you read my earlier posts you see how much of an improvement this is! I have to say that since starting chelation we have seen AMAZING and permanent changes in him and of course keeping the bacteria down makes Grayson the perfect child so that helps. He was never able to peddle a bike, he hated even trying, it was just exhausting for him. Suddenly one day he hopped on and peddled around in circles, whizzing around me like a bee. That just came out of left field. He has no problem walking beside us when we are out now, he used to cry that he had to be in the shopping cart or stroller and that he was just too tired to walk. He still prefers the stroller some days, but he doesn't fight us if we say no. I believe his mitochondrial function is improving based on these changes. A silly change I just noticed yesterday...He is normally afraid of bugs, won't go near them, but was always intrigued by them. His little brother who is 16 months old has no problem grabbing a hold of the elder box bugs as they sun themselves on our deck, but Grayson would always partake in the action from a distance. Last night the baby noticed one in the house and next thing I know, Grayson is holding the bug in my face asking me if I want it. Talk about a shock! I was SO not prepared for that, ha ha ha. He had the bug crawling all over his arms and body, giggling from the tickles. I have never been more excited to see my boy acting like a BOY! He's always had these fears of things that most kids relish in, getting his hands dirty, birds, frogs and bugs. I am all for it, get dirty, get can change and wash clothing, life is too short to not enjoy being a child. And I am enjoying watching it!

Friday, August 21, 2009

Hand sanitizer - make your own!

The fall is coming and with the swine flu scare on the horizon, I want to be prepared with a hand cleaner for the go that isn't dangerous. In all of my research I have, at minimum, determined that I don't even want to touch Purell ever again! So if you are concerned about the resistance to bacteria caused by hand sanitizers like Purell, try this one out. I found a recipe that works great, is nice going on, and doesn't smell bad.

Start your natural hand sanitizer by choosing a container. This recipe will work in plastic squeeze bottles, or mini spray bottles. I also have a great source for amber bottles that are best for anything containing essence oil and of course they don't leach chemicals! If you prefer plastic, just remember to look for a BPA and plathlet free bottle.

Here is the link for the site I buy our bottles from -

They also carry HDPE plastic bottles (like the kind your milk comes in) -

Use the following recipe---
2 parts aloe gel (NOT juice)
1 part distilled water (NOT tap)
1 part grain alcohol-vodka (NOT isopropyl, we used Ciroc grape-distilled vodka to avoid the grain-allergen issues)
4-5 drops essential oil of choice (NOT fragrance oils). Hint: tea tree is a great antibacterial and one of the best essential oils to add to a hand sanitizer recipe. I also added a few drops of oil of oregano which is an anti-fungal, anti-bacterial, anti-microbial...among SO many other things.

Essential oils, to date, have not been shown to allow microbes to develop resistance.

Mix all ingredients in glass bowl (preferably) with a plastic spoon. I don't use metal dishes or utensils because of potential reactions with the essential oils. Pour your hand sanitizer into your containers. You can add less water if you prefer a thicker product.

This is the link where I got it -

Thursday, August 13, 2009

RECIPE - a staple in our house - pancakes

With a year of GFCF (among many other "frees") under our belt, I have had a LOT of time to experiment with pancakes! Pancakes are a favorite and with the limited breakfast options we have, we NEED them and they must be healthy, hearty and easy to make. The other great use for pancakes in a gluten free diet is to replace bread for sandwiches. Other than muffins and cookies, it's the only bread-like substance in Grayson's diet.

We have tried all of the gluten free flours out there in pancakes and our favorite, by far, is teff. Teff is native to Northern Africa, but is now grown in the US primarily in Idaho. If you are culturally savvy you will probably know that it is the primary ingredient used for injera bread which is served as your utensil with Ethiopian or Eritrean food. It has a bit of a nutty bitterness to it when used alone, somewhat like a sourdough bread. There are also three types of teff, white, brown and red. The red is more nutritious and less bitter but the white is used more often and is the choice for injera bread. I use Bob's Red Mill red teff.

The low down on teff is that it packs more protein than wheat, has a high concentration of nutrients like calcium, thiamin and iron and is very high in fiber. The iron from teff is easily absorbed by the body, calcium (387mg) in one cup of cooked teff is about 40% of the USDA recommended daily allowance, and has twice as much iron as wheat and barley! Teff is an energy enhancing grain which makes it favorable for athletes.

Fun facts about teff - It is one of the smallest grains in the world measuring only 1/32 of an inch in size, in fact, it's name is derived from the Amharic "teffa" which translates to "lost", as in - it can be lost if dropped! ( Amharic is a Semitic language spoken in North Central Ethiopia) 150 teff grains are equal in size to one wheat kernel. 3000 grains weigh only 1 gram. Teff is used to make home brewed alcohol, is grown in Ethiopia as forage for cattle and has been used in adobe construction. Sounds like a Jack of all trades to me although I will stick with the pancake route.

Ah yes, pancakes, that is the point of this post, isn't it? So here is the recipe I have been experimenting with and have finally come to my ideal gluten, casein, egg, soy, rice-free pancake.

1 1/2 C teff flour
1/4 C quinoa flakes
1 tsp baking soda
1 tsp cream of tartar
1/4 tsp salt
1 1/2 C milk sub (I use hemp, but chocolate almond is really tasty too!)
3 tbsp oil
2 tsp xylitol

Mix it all up and drop it on a hot griddle. These are hardy and dark. We love the chocolate almond milk, but I know that some people avoid almond milk for either nut or soy sensitivities. The quinoa flakes don't change the flavor like quinoa flour does in higher quantities, it just adds some bulk to the recipe, because teff alone can be too flaky and flimsy for pancakes.

These are not very sweet, which makes them ideal as a bread substitute so adding more sweetness might be preferred by some people. So here are some great variations to this recipe. If you are adding these things into the pancake, blending is the key, because anything too chunky makes the pancake not cook through well. These could also be drizzled on top.

-blended zucchini (or any veggies)
-blended berries in or on top of the pancakes
-blended apples with cinnamon
-blended banana and chopped nuts
-organic blended pumpkin and cinnamon

I make double batches, separate them with wax paper and store them in the freezer double-bagged in freezer bags. Reheating is a snap in the toaster! They are great when you need to be on the road too, just hand a pancake (or two or four if it's my child) to junior and go.

Wednesday, August 12, 2009

Amazing video about autism

This video covers it all and in such a thorough fashion! Dr. Masson is a Harvard-trained pediatrician with extensive knowledge of the causes and biomedical treatment of autism. Her practice is focused on autism and the biomedical approach to treating it. She also has a video on the prevention of autism, during pregnancy. Of course, for us, it's too late for that.

Tuesday, July 28, 2009

Obsession or hyper-focus? Mother Warrior Mode!

If you are reading this and you don't have a child on the spectrum or one who requires biomedicine, you probably wonder what all the hype is about. If you are reading this and you DO have a child in one of these categories, you know where I am going with this, don't you?

I hear this often..."But it's just one, can one really hurt him?" and "Does he really need all of those pills?" The perception of mothers like us is one of obsession, we research and we fill our kids with gobs of supplements daily, we restrict our kids from chlorine in swimming pools, we avoid sugar, artificial colors, preservatives, wheat and MILK,....why? Is this really necessary? Don't kids need milk? No they don't, and yes this IS necessary. The only way to recovery is complete...well, you might like to call it obsession, but I prefer hyper-focus.

Mainstream doctors don't get it, they don't get us, they don't get our kids. And why is that? It's simply, because they haven't studied biomedicine. Would you go to a heart surgeon for GI problems? I think not!! My son has quirks, yes, and so do I, BUT he also has an overgrowth of yeast and bacteria, sensitivities to a plethora of foods, high oxalates, malabsorption, vitamin deficiencies, sensory issues, the list is lengthy and I could go on explaining the symptoms I used to see on a daily basis (in fact, just read the beginning of my blog for that), but I would rather tell you what this hyper-focused mommy-warrior mode does for us. Plain and simple, it turns a very unhealthy child into a healthy one with a bright future. What mother wouldn't do this for her child, if she knew it was possible? I don't see it as anything other than necessary!

The medical community forces us to this, we need to help our kids by researching, talking to other moms, trial and error, meds and supplements. The other thing that drives us is that we are told that there is a window of opportunity when it comes to recovery and we are right in that window with Grayson now. The best and most permanent results are seen when treatment is started between the ages of 1 and 5. Beyond these years and we risk a slower recovery and perhaps a less permanent recovery. This is called "Managed Recovery" in our world. Many of our kids will actually require this and it means that they are healthy, with their previous diagnosis removed (IE-autism, ADHD, PDD-NOS, etc) however, it's the diet, supplements, chelation that are possibly continuously required to maintain this level of health. It has been described as an autoimmune disease and it's believed that it will be renamed in the near future. We wills top calling these symptoms autism and start seeing them for what they are...autoimmune dysfunction.

People who meet my son now think he is just perfect, and truly, I hear that word a lot with him..."perfect". No one is perfect, but to me as a parent, I agree, he IS perfect, however, he is far from healthy and the reason he appears "perfect" to others is because of everything I do. My job as his mother is to make sure he is given the best opportunity at a healthy (and fun) life.

So I repeat, is this an obsession? Perhaps. Is it necessary? Absolutely!

Tuesday, July 7, 2009

Chelation - round 8 - added supplements to capsules

I am so glad we stuck with the ALA. When we first added it to the DMSA, I was terrified by the results, the incredible increase in stimming and negative behaviors, but we stuck it out, used it again in smaller quantities for two more rounds and now he is doing fine on it. The last round was a little rocky, emotional, but not nearly as bad as the first ALA round. It could be that we have also been using prescription meds for the yeast and bacteria which chelation will ultimately flare up. So other than being utterly exhausted with the round the clock waking, this round is going so smoothly! He is on his last day of chelation today and we are seeing some emotional outbursts, but up to this point, he has been wonderful! NO stimming at all, no sensory seeking, and even when he gets emotional, he is recovering himself pretty well! I might be able to credit his level behaviors to the fact that I added his calming supplements into each dose of chelators. When I split his capsules, I also added an additional 250mg of vit C, vit B, 100mg of Milk Thistle, 180mg magnesium and a 1/4 of a capsule of ACE daily. The C and B help with the stress ont he body, Milk Thistle supports his liver, the magnesium is calming and necessary for the absorption of many other nutrients and the ACE addresses the adrenals which are often fatigued during chelation. So needless to say, I will continue this method of dosing going forward.

Saturday, July 4, 2009

Seeing the WOWs, but what did it?

We are seeing AMAZING changes and we are even starting to see some consistency, things were all over the place before. I just can't put my finger on which was the major "wow-factor" or if it was a combination of things. Here is what we have done recently, and in this order:

1-Started Flagyl and Diflucan (based on yeast and bacteria markers in Organic Acid Test), also started SeriPhos for anxiety.

2-Added artichoke extract to the milk thistle we were already using to add more liver support (trying to address his whole body itchiness with either anxiety and/or liver stress as the cause)

3-Added OLE daily (200mg)

4-Started Nystatin once a day

5-A gland that has been raised on the side of his neck since he was a year old (and I mean VISIBLY raised) has gone down significantly, some days it's not even palpable! This is major.

6-Increased buffered Vit C to about 1000-1200mg a day to help with irritability (we had reduced it for oxalate issues and found him to become increasingly more irritable without the high levels of C)

7-Noticed his tongue was spotted and almost coated looking and pimples on rear (probably related to the die off from gut bug meds)

8-Stopped giving calcium (suspecting hypocalcemia), as a rial, just giving 360mg buffered mag oxide instead

9-Increased Nettle tea (about 1/2 cup a day) for calcium and possible allergies (we had used this before in smaller quantities)

10-Stopped first ten day course of Flagyl and Diflucan

11-Added 1/4cap of ACE (Adrenal Cortex Extract) for possible adrenal fatigue (we started seeing major changes about here, literally immediately)

12-Increased Milk Thistle by at least 200mg per day for itching, seems to have helped, but itching is still there throughout the day (still can't quite figure this out, but may be related to toxic release)

13-BMs have FINALLY gone from a very loose, strange consistency and foul smelling to NORMAL and not smelly, still undigested materials in them though (nuts, buckwheat groats and sunflower seeds seem to remain undigested)

14-OMG, as I was writing this, I noticed a crazy rash all over his upper torso! It looks like chicken pox! They are evenly spaced little pimples, he said they don't itch. They go from his collarbone and back of the neck to his mid-torso, they are not on his arms, legs or face....We just started the OLE 11 days ago (it is a top rated antiviral) and strangely, that coincides with when we saw the gland go down! The gland originally popped up right after his 12 month vaccinations, it came with what looked like a mild case of the chicken pox then too! But it also coincides with when we started the Nystatin, so it could also be from die-off of gut bugs. We haven't given him a bath, put any lotions or anything new on him either.

The point we are at now....verbal stims are almost non-existant except when he seems to need some OoO (3 drops), Biotin (20mg) and 1 No Fenol for yeast, we give this 2-3 times a day, we haven't had any meltdowns in DAYS, the anger is gone, the anxiety is non-existant, he is silly and talkative, almost hyper, but more appropriate kid stuff and he is listening well when we ask him to calm down, defiance has subsided. He must be feeling good. He goes to bed around 8pm and wakes no earlier than 8 or 8:30am, even 9-9:30am some days (and this is a child who used to wake a 5:45 before chelation!!). He is still itching, but now I can't tell if it's habit, a stim, yeast, related to allergies (he has no other signs of environmental allergies), or just plain die-off side effects. Between cleaning out the liver, killing off the gut bugs and chelating metals, he has a lot that could be coming from his pores. This is the first time in almost a year that we have had consistent days like this. We will be going onto another course of Flagyl and Diflucan. Once we go off the Flagyl, we will retest with another OAT (Organic Acid Test) which our DAN! might have actually gotten covered by insurance!!! WOO HOOOOOO!! (happy dance)

These have been the biggest WOWS we have had. In fact, yesterday we had a play date with two boys we haven't seen in ages, he was FABULOUS the whole time, playing nicely, sharing (wow), laughing. The play date we had before this last one was one disaster after another, he hit the boy, he cried, he lost his temper, screamed and had no patience the whole time, grabbed toys left and right, but this was just a few days into his meds so I am sure we were dealing with die-off.

Tuesday, June 30, 2009

Way of life and death...of BUGS!

So today I was one of the lucky homeowners to spot an ant in my house, IN IT, where they DON'T BELONG!! Eeeeeew!! First it was one, then another....and another, this one was bold enough to steal a morsel of food from my kitchen, which actually isn't that hard to accomplish with two young children. I managed to find a handful of them coming from the front half of the house, which makes sense, because that is the part of the house that is at ground level, the back is at the second story. As you know, having a chemical sensitive child means I couldn't just run and grab some ant spray to get the suckers. I stood there thinking, "Now what?" This isn't in the biomedical manual!! Ok, so thinking along the terms of natural the first natural volitile thing I could come up with was VINEGAR!! I ran for the bottle, poured some into a squeeze bottle and went around soaking every crack and crevise on that side of the house, all the while big-toe-squashing the little buggers I found along the way. They don't die easily either so I finally got smart enough to soak a paper towel with the vinegar and use that. I sprayed outside along the house too. At least vinegar is a natural cleaner too, so I killed two bugs with one stone...hardy har har.

In a matter of 30 min, I managed to douse my house in vinegar, but I am proud to say there wasn't a pesky bug in sight for most of the day and it was squeaky clean to boot. Every now and then I would find a straggler roaming the middle of the room. Apparantly, what the vinegar does (which I didn't know before I soaked my house with it) is it masks their trail. They leave a trail that allows them to get back to their home, so when you get rid of that, they literally get confused! So I went on the hunt for more natural bug remedies and found these little tid bits:

* Vinegar can be used to destroy ant trails.
Without clear trails, the ants will get confused and may stay outside for a while. You can use it diluted with water or straight. And, of course, vinegar is also a great household homemade cleaner, so not only do you get rid of the ants, you get some cleaning done too.

* Cinnamon and black pepper are both increasingly being used in garden and
indoor insect control. You can try dusting the outdoor nests with either of these spices.
Cinnamon is more beneficial as a natural barrier to stop them from coming in -- it's most effective when you find the source of where the ants are coming in.

* Add borax to sugar.
Many people believe that you should use a 50-50 concentration, however, ultimately the goal is to have the ants bring borax back to their nests. Starting with a lower concentration such as 5% or 10% borax to sugar and gradually increasing it to 40%-50% will allow the ants to have more time to bring more back. The mixture should be placed where you see the ants or on the ant trails.

* Baby powder or talcum powder is not appreciated by these bugs. The theory is if you dust the ants and the trail, they stop coming.

* Liquid soap diluted with water is an easy way to wipe out your pests while
not harming your people. When used outside as a spray, you'll want to dilute the soap (such as Dr. Bronner's Organic Castile Soap) -- roughly 1 or 2 tablespoons per quart of water to kill the pests but not your plants.

* Bay leaves,
cloves, and cayenne pepper have long been used for ant control. Try putting one of these at their entry point, and in drawers, shelves, etc., where the ants are going, to prevent them from coming in.

* Peppermint can be sprayed around your home's perimeter and at ant entry
points. This will deter them from coming inside. More resources:, Sugar Ant Hotel from Care2.

Fruit flies
* Clean up any ripe fruit droppings and take out the trash (or if you are a green superstar, your compost!) nightly for a few days -- fruit flies lay their eggs in overripe fruit.

* Apple cider vinegar is a great natural way to get rid of fruit flies. Pour some into a glass, and place a paper funnel over the container. Fruit flies love the smell and will fly into the glass, but will not find their way back out the funnel (for 4 of 5 fruit flies...).

* Leave a glass of cheap wine (apparently, fruit flies particularly like chardonnay) out. Mix a bit of detergent in it. The flies will sip on it and die shortly thereafter.

* Make your own fly paper by boiling water, sugar, and corn syrup together. Spread the mixture on brown paper grocery bags and wait for the flies to stick.

* Suck up flies through the back of an old hair dryer. The flies will go in the hot back end of the dryer and fry.

* Basil deters fruit flies. Mix some basil oil with water and spray your kitchen.

* Make a trap from an old soda bottle to catch wasps. Using a 2-liter soda bottle, cut off the top 1/3 of the way down. Flip the top so that the bottle neck is facing down into the rest of the bottle. Tape or staple the bottle neck to the outside of the bottom piece so that it fits tight. Fill the bottle part way with soda or fruit juice. You could even line the top of the bottle with jam to help attract the wasps. Wasps will enter the bottle but will not be
able to get out. Clean and refill the trap daily or as needed.

* Remove the nest. If you find a hanging nest, wait until the wasps are less active (namely, at night). Carefully approach the nest. Put a cloth or plastic trash bag entirely over the next and quickly tie it off at the top. Remove the nest from wherever it is hanging, then submerge the bag under water and weigh it down with a rock.
More resources: EarthEasy, Get Rid of Things.

Slugs can be a huge pest in any garden. They're fond of eating plants, shrubs, and mosses, much to any gardener's chagrin.

* Fill small bowls with stale beer and place the bowls strategically in areas
of the garden where the slugs are most active. Slugs apparently like stale beer, so they climb in to drink and they meet their maker (they drown in the liquid).

* Other eco-friendly slug-fighting tactics include liquids that work similarly such as grape juice or a tea made from yeast, honey, and water. More resources: Mother Earth's Garden

And I found this post on a message board thread, makes you really want to think twice about using Equal (HATE that stuff):

"Aspartame is great for killing small ants if they are in your house... We dumped
a few packets of Equal in the corner of our kitchen and the next morning had a
little sad pile of dead ants. Makes you think twice about dumping the stuff in
your coffee, for sure....

It's funny I read that aspartame used as an ant killer was an "urban myth" or
something before we tried it, but in my own little experiment it sure worked.
Makes you wonder who is really controlling what we read."

My mother has always said, "Necessity is the mother of invention" - it sure is!

More questions, as usual

Another new layer unfolds. It always appears that with our gains, comes the confusion of additional changes. We have been seeing major gains in Grayson lately, he is just flourishing in between rounds of chelation, but with each round we unveil yet another new possible problem. It seems like we change his supplements about heavy on the wallet? And with each new issue comes the recommendation of more testing...also out of pocket expenses for us. We just can't keep going at this pace or we will be out of a house in no time! We are trying to pace ourselves, but this is something that is very hard to do. A parent wants to do EVERYTHING possible to help their child, NOW, not when the paycheck allows it. It is painful to know that we need to be doing more for him, but we are forced to decide on what is most important at the time...ya know, like eat dinner or try a new supplement that MIGHT the gas bill or run another test to see how his liver is handling the chelation. How does one prioritize these things when they don't have a decent flow of income, is beyond me?? I am grateful for our ability to at least do what we can.

So the antifunal and antibacterial meds worked wonders, wow, what a difference!! We see such marvelous gains in him, he is calmer more regularly, he is waking in a GREAT mood, sleeping well and until after 8am every day (heaven!) sometimes I even have to wake him after 9:15am! The down side to the meds is that they put additional strain on the liver, which mercury and chelation also do. This is such a balancing game. We have increased the appropriate vitamins: vitamin C, B and E three times a day, plus we have added an additional liver support, artichoke extract. We also figured out that he probably has adrenal fatigue, which would cause the severe mood swings so we added Adrenal Cortex Extract, perhaps this is the cause for our recent wows. He has been pretty amazing for the past three days or so...hmmm, yes, it might be the ACE after all! BUT....isn't this always the way, with all these great changes we have seen a significant increase in itching. Crazy, frustrating, nonstop all over body itching!! He uses the back of his hands rather than fingertips, he rubs under his chin, across his forehead, along the sides of his head and ears, up his forearms rubbing them along the sides of his body, then he truly itches in the classic sense, his shins and ankles, both sides at the same time. This goes on all the time lately and it has been irking me trying to figure out the cause. We have spoken with Dr. Woeller and Dr. Schmidt. We have considered allergies, although it's not consistent with anything in particular (we tried removing foods and using Benedryl, which interestingly sometimes helps for a while) but nothing seemed to be addressing the root cause. I posted this concern on the Autism-Mercury Yahoo Group site and one person struck a cord. He said that liver stress can cause whole body itching. Between chelation, heavy metals moving through his body and then taking the additional medications, this makes complete sense. Of course, he recommended more testing, but he also said that if we increase his liver support and the itching subsides, we have our answer. I tested this tonight and it seems to have actually worked!! Although, only for about 2 hours or so. I am going to work with his Milk Thistle (which I don't think I have been dosing enough daily) and artichoke extract and might even add in another liver support, maybe going back to the liver life. Even with this newest event, we couldn't be happier with the results of the medications! We have to go back on them for one more round, to be sure we got all of the spores in every stage of their life cycle. Then about 7 days after we stop the Flagyl this time around, we are going to do another OAT test and see how his levels have changed. This is all fine and dandy, but what I am really curious about is how we will keep them down naturally, after we have stopped all of the meds. That is yet to be determined and only time will tell, but for now, I am enjoying the ride!

Thursday, June 18, 2009

Here I am as the mad scientist! This is what it looks like when I split capsules. I wear the mask, because the DMSA and ALA give me a headache even to breath it. Since I am still nursing and have silver fillings (50% mercury) in my mouth, I like to take this precaution so as not to mobilize the mercury.

Antifungals and Antibacterials

Is that a word, antibacterial? It doesn't seem like it should be. So anyway, with the constant battle with yeast and clostridia, and his OAT test showing such high levels of each, Dr. Woeller recommended prescription strength meds. We added some bacteria fighting probiotics like Sacc. Boulardi and Culturelle, which do seem to be helping, but just not enough. Yesterday we had an appointment with our local DAN! doctor. He prescribed flagyl for ten days with a ten day refill, Diflucan for ten days on, ten off and another ten on, as well as Nystatin sort of indefinitely. The flagyl is an antibiotic specifically for clostridia, it will also address any hidden gardia spores. The Diflucan and Nystatin are both for yeast. Since Grayson had levels of tartaric acid, it means the yeast is interacting with the gut lining, nice huh? When I hear these things, I am envisioning little battles going on inside of his already little body, ACK! Not something a mother wants to picture. The Nystatin is not absorbed, so it will get the yeast floating throught he blood, etc. The Diflucan is more of a systemic and absorbed treatement to get the yeast that is consdiered "gut boring"....eeew!

We have been advised to start the Diflucan and Flagyl today then add the Nystatin in on day four, so we don't get severe die-off. Die off with gut bugs like this is hard on the body, especially the liver and gallbladder, because they are toxic little buggers and once you kill them, they are even more toxic, and are floating through and out of the body in high quantities. These chemicals they release are neurotoxic so we will likely see a worsening effect in about 48-72 hours. I ahve read that these symptoms can last from days to possibly even a week or more. Looking forward to it (hiding head under pillow).

Ok, well it's Friday which means it is time for me to get my mask on and make some compounded DMSA pills. I might even go out on a limb and try the ALA again at a lower dose, since we have the meds in place to help with yeast overgrowth, here's to hoping!!

Monday, June 15, 2009

RECIPE - Turkey Roll-Ups

If you are like me, you are probably always searching for new and exciting recipes. With a limited diet like Grayson's, that is quite a challenging feat! Lunch seems to be our more challenging meal, oh and snacks, ugh! I try to make food fun when I have the time. Here is a simple recipe that always goes over well, the toothpicks make it a fun food! I even enjoy this one, he he.

Applegate Farms smoked turkey deli meat (prepackaged)
cabbage (or lettuce of choice, we love raw cabbage)
grape tomatoes
dressing of choice, we use an all natural honey mustard
bacon is a nice addition although we didn't use it this time (forgot, whoops)

I like to dry off the turkey meat, since it is packaged in some minimal fluid, then all you do is line the turkey with the ingredients all in a row, roll, pick and slice!

Here is Mr. Man himself, ready to grab his plate and go. I had to hold him back to take the picture above, he had his hands all in the pictures!! He ate two plates full of this faster than I could clean up the mess!

Wednesday, June 10, 2009

To ALA or not to ALA

Alpha Lipoic Acid....ahhhhh the joys of chelation. So, the typical protocol for chelation involves first lowering the body burden of mercury using DMSA, which is what we have been doing for 5 rounds, meaning five sleepless-emotional-yeasty weekends full of fun! ha ha We take 4 to 11 day breaks in between those weekends and lately it appears that we are best with 11 day breaks. Then comes the ALA, dun duu duu duuuun. ALA is the only known chelator to cross the blood brain barrier. This is the scary part, because mercury can get into the brain and for some reason, it gets lost or comfy in there and doesn't come back out, and then you have....yup, neurological problems and for many it's called autism! So I repeat, ALA is the only known chelator to cross the blood brain barrier, which is the very same barrier that is SUPPOSED to protect the brain. The problem with this is that it's a two way street, the ALA can help remove the mercury, but it can also usher mercury INTO the brain, if there are any current exposures to mercury going on. In other words, if you have silver fillings - AKA amalgams - DON'T TOUCH THIS STUFF WITH A TEN FOOT POLE!!! Amazingly, ALA is a supplement that many people unknowingly take without realizing that they could be causing damage, especially if they have fillings. So anyway, I could get so easily side tracked on this topic.

We added the ALA at the same dose we are using with the DMSA. That means that I am splitting a teeny tiny, itty bitty 50mg capsule THIRTY TWO ways! UGH!!! The texture is very funny too, it's like cotton candy rather than powdery, so every time I would try to split a mini pile, it would pop or jump into little shards of annoyingness! And picture this, me with my face mask on (because I have a mouth full of silver and immediately get a headache from opening the capsules) using little pieces of paper to split these teeny weeny capsules a trillion ways just to fill an enormous capsule with this pin head sized portion of cotton candy for Grayson to take. It's practically empty!! I think I might start adding his vit C, B and magnesium into these very same capsules so he doesn't have to take a different capsule for each and it would fill up the emptiness of the capsule, it's like he's swallowing a bunch of air. Here you go Grayson, it's time for your air....I mean, ALA. Gulp, burp!

Getting back to the point, yet again, the ALA, ummmm yeah! Not so sure we are ready for this. It caused a whole slew of symptoms that we were unprepared for. It's not uncommon to see some signs of yeast overgrowth during chelation, but we are now two days post chelation and he is STILL verbally stimmy. He is doing this strange random giggle that has nothing to do with anything happening at the moment. In fact, he could be just sitting and doing nothing or looking out of the window in the car and he giggles. Not even a funny ha-ha type of giggle, it's a weird gutteral giggle that sounds more like a nervous tic. So here is the list of "symptoms" we experienced this round:

- very sensitive emotionally (although this isn't unusual for him with ANY
changes to weather, diet or schedule)
- swatting at his head, overall head and face itchiness (he used to do this a
LOT before biomedical treatment and we don't see it too much in between rounds
except with yeast overgrowth)
- defiance and resistance galore (lucky us)
- he did mostly well during the middle of his round, but at times he was highly
stimmy, verbally (strange random giggles even when he was alone) and with touch
(he had to trace everything with his hands).
- when the ALA wore off, things got crazy. For example, we went out to dinner for my birthday and had ended our last two doses with just DMSA to "sop up" any free floating mercury. It was only 2 hours from our last DMSA, but about 5 hours from the last
ALA. At first, he was great at dinner, then suddenly, it was like a switch
flipped on him, he started itching like CRAZY, everywhere (legs, arms, face, ears, head
swatting), he started turning around in his seat to trace the outlines of the
chair rungs, he was whacking the chair sides with his elbows over and over,
rubbing his wrists on the table, swatting his head like crazy (this is one we
had constantly before biomedicine), and he was a ball of emotions, couldn't
handle ANY changes to his expectations (finding pine nuts in his salad threw him
over the edge). He just couldn't sit still and relax, his anxiety level seemed
through the roof! Oh and the energy, after dinner, we went out to walk around
outside and he was loud and running and running, so not like him!! He had a
hard time going to sleep also.
- then the day after ending the round, the random giggles continued, but
he is more level-headed emotionally so far.
- his first two BMs of the day so far have been one very very pale and floating
one followed by a very loose and slightly darker colored one. Both had a lot of
undigested foods in them. (Sorry if that is TMI!)

So I am researching and asking tons of questions to doctors and fellow moms who are going through this. I can't decide, if we should stick it out for another round (Lord help me, if we do) or if we should back off with the ALA for now and just continue with the DMSA until we get his body burden down more (leaning more this direction). I have been told that, if we up his yeast protocol and give doses of vit C and magnesium with each chelation dose, we might be able to help the side effects. We just haven't decided yet. Any great ideas?

Tuesday, May 12, 2009

Enter Dr. Woeller...

We found a GREAT resource for our gaps in treatment with Grayson. We felt pretty good about our direction until we got to chelation and had some areas of question about behaviors and symptoms that come and go. We felt like we needed Dr. guidance, but don't have access to indefinite finances to visit a DAN! Dr. an hour away who has a waiting list a mile long. Just when we were belly-aching over the lack of insurance cooperation, the lack of doctors to help with these issues, the jekyl and hyde symptoms we experience....a fellow blogger told me about Dr. Woeller at He is a DAN! Dr. in California who has dedicated his last 10+ years on biomedicine for the autistic community. Now, while Grayson is not autistic, he does share the exact same health issues with the autistic and I DO believe that he was headed down the path to mild aspergers syndrome. So back to the point, Dr. Woeller!! He has a website dedicated to parents just like us, with kids who need biomedical treatment, but can't afford the many Dr. appointments that are necessary to get to the bottom of what is going to cure our kids. Of course there is a fee, but paying for a whole year with him is less than three visits with an actual DAN! Dr. He provides indefinite personal attention to every question (he even gets back to us on weekends!) and membership includes conference calls twice weekly where we can see him talking while we type questions to him, it's like being right there with him, except that I can look like I just rolled out of bed, if I want to. This is like having a doctor come visit us in our house to answer questions, it doesn't get any better than that!! This is the smartest thing we have EVER done. Now, with this comes the suggestions he has for getting to the bottom of Grayson's issues and treatments, so unfortunately this also means spending more money on tests and treatments, but at least we are doing things we KNOW he needs, rather than guessing.

So what is the latest you ask? Yes, we have been wrapped up in things here, so here is the latest. We ordered an OATS test and what is that you ask....."The Organic Acid Test (OAT) measures 62 different compounds. These are important markers regarding a wide variety of metabolic and biochemical imbalances with specific attention paid to yeast and bacterial toxicity commonly seen in autism-spectrum individuals."

Grayson's results mirrored those with autism.

I expected the high yeast, but his bacteria (clostridia) levels were frightening and shocking to us. It does explain some of the behaviors we weren't able to figure out though. Yeast typically results in a giddy, hyper, stimmy sort of behavior, like laughing inappropriately and appearing almost too happy. Bacteria normally results in aggression, frustration, and signs of stress. His stress hormones are elevated and so are his oxalate levels. More foreign language talk, right? Oxalates - Here is a link about oxalates and the low oxalate diet - So yes, we need to add or should I say, REMOVE more foods from his diet. I think it's time to consult with a nutritionist....?

So now it's time to develop a plan for treatment which may require prescription level meds to bring down the yeast and bacteria so that we can attempt to maintain them. That is going to require an actual doctor visit with someone who can and will look at the test results we have and act on them appropriately. His stress hormones need leveling out so that adds more supplements (GABA and Theannine) to the already enormous list of pills he takes in a day. They are necessary though, for him to have normal day to day functioning. His body isn't able to absorb the proper nutrients (not to mention the nasty little gut bugs who eat up the good stuff on him, grow and produce neurological toxic waste) which results in many deficiencies, hence, his symptoms. It's much deeper than that, but without getting technical, this is the gist of it.

So are you still concerned with your day to day "normal" issues like not cleaning up their toys and wanting something different to eat? Just one day in our world of chasing symptoms, popping pills, mood swings, diet limitations, chelation therapy and well, life is looking pretty sunny comparably, isn't it??

Tuesday, May 5, 2009

Vaccine-Autism link - FACTS

If you ever had ANY doubt that the two are linked, watch this, it will change your life, if you have children.

Just two quotes that stuck with me from this video and they don't even state the crazy statistics he shares:

"If a doctor dropped a vial (vaccine) on the floor, it would be toxic waste, but they are injecting into children"

"Children with milk allergies have problems with excreting mercury"

And one other thing to be aware of, Tylenol reduces glutathione levels which is necessary to excrete heavy metals....there is so much to learn here:

Oh, and if you think mercury has been removed from vaccinations, think again. When an ingredient is reduced to "trace amounts" it no longer has to be listed as an ingredient. I saw a study where the current vaccinations that claimed to be thimerosal free did in fact still contain trace amounts when tested. The trace amounts are still higher than the safe threshold!! And what do you think that does now that it is combined with the newest preservative, aluminum?? Together they are highly reactive. This has all transpired since this video.

Tuesday, April 14, 2009

Reishi Mushrooms AKA Ganoderma Luciderm

I personally have been using this for over a year which resulted in much better sleep, less hayfever when the seasons come and go, a more calm overall feeling, and probably many more benefits that I haven't even linked to the reishi.

I know exactly what you are thinking.....So what is it and how do you get it?? Reishi Mushroom is technically known as Ganoderma Luciderm and is a medicinal mushroom with very coarse texture, like the bark of a tree. It can't be eaten like a portabella, but it's extract can be taken in various forms. There are special healing effects of Ganoderma herb on circulatory system, nervous system and immune system as well as its anti-cancer effects. This is not a theory, it's been scientifically studied for years with proven numerous health benefits!! It is used in Japan for their mainstream cancer treatments, it's not even considered alternative medicine there.

Here are just some of the benefits of the reishi mushroom:

Reishi is commonly used for:

  • Longevity and prevention of diseases
  • Insomnia
  • Stress
  • Influenza and common cold
  • Asthma
  • Allergies
  • Cancer
  • Hypertension
  • Heart Disease
  • High Cholesterol (LDL)
  • Diabetes
  • Headache
  • Stomach ache
  • Arthritis
  • Back pain
  • Skin Care
  • Hair loss
  • Chronic Fatigue Syndrome (CFS)
  • Hepatitis

The scientific data accumulated over the past 30 years help explain why Reishi is effective in all parts of our body:

  • Immune System
    • Cancer: Reishi is an effective anti-tumor medicine
    • Common Cold
    • Influenza
    • Cough
    • Inflammation
    • Rheumatoid Arthritis
    • Allergies
    • Lupus
    • Stomatitis (canker sores)
    • Reishi acts as an antioxidant against free radicals
    • Reishi protects against the effects of radiation
    • Reishi has anti-inflammatory effects
  • Respiratory System
    • Asthma
    • Chronic Bronchitis
  • Endocrine System
    • Problems associated with Menopause
    • Irregular mentruation
  • Nervous System
    • Insomnia
    • Neurasthenia
    • Stress-induced tension
    • Over-sleep
    • Headache
    • Toothache
    • Cataracts
    • Muscular Dystrophy
    • Myasthenia Gravis
  • Circulatory System
    • Hypertension (High Blood Pressure)
    • Hypotension (Low Blood Pressure)
    • Coronary Heart Disease
    • Arteriosclerosis
    • Arrhythmia
    • Stroke
    • Reduction of Cholesterol (LDL)
    • Anemia
    • Cold Extremities
    • Hemorrhoid
    • Elevation sickness
  • Digestive System
    • Gastroenteritis
    • Ulcer
    • Hepatitis
    • Liver Necrosis
    • Reishi regenerates the liver
    • Obesity -- Reishi removes fat in the blood
    • Underweight -- Reishi improves appetite
    • Diabetes
    • Constipation
    • Diarrhea
    • Gallstones
  • Skin
    • Aging of the skin
    • Ugly spots on the skin
    • Acne
    • Hair loss
    • Dermatitis
  • Excretory System
    • Nephritis
We currently give the boys Reishi in a Reishi-Carob syrup that is to die for. I've never tasted such a yummy supplement!! I HIGHLY recommend this product!! You can use it in shakes, in cereal, you can mix it into milk substitutes and Grayson likes it right in his mouth like a little treat, ha ha ha. We get it from Brainchild Nutritionals -

Round 2

Round 2 went much better than round 1, we cut his DMSA dose in half and stayed on top of yeast. We also used high doses of buffered vitamin C (from cassava) with magnesium to address irritation and it works like a charm! We started to see spaciness and agitation, I addressed yeast and irritation in one shot and our child was wonderful in a matter of no time. So far the day following the round is going perfect too, phew!!

Wednesday, April 8, 2009

Round one - Success!

We got through round one with flying colors and if it's any indication of how Grayson will be after chelation is done....(doin' the happy dance)!! He was amazing during the round, calm, well behaved, happy, patient, he was showing signs of very complex thoughts, what more could the parents of a three year old ask for? Maybe if he could just put his toys away without being asked....ok, maybe that is asking too much still, so anyways...

This is a cute little story showing some of the things we experienced while on round. We took him out to lunch (with his own foods, of course) but he read the kid's menu anyway and wanted a side of sliced apples with his lunch. He couldn't wait to order it himself and practically blurted it out while flapping the menu at the waitress before she was done introducing herself. He enjoyed his lunch and apples, chatting along with us throughout lunch like a mini-man. After lunch, he grabbed the survey questionnaire, which we have never explained to him by the way, and promptly said while looking at the card, "I want to say thank you to her, do you have a pen? How do you write thank you?" Dave and I looked at each other with our jaws dropped, very obviously having to digest what he just said. We spelled the words, he very neatly wrote even sized letters on the lines and then circled all the "3"s "because he is three!", ha ha ha. Of course, we had to explain to her why she only got a rating of all threes, but she was thrilled with her little survey card from Grayson and he was thrilled with the smile it resulted in from her.

Our weekend was full of little tidbits like this. He was flourishing, intelligent beyond his years! He was also very tired by the end of each day though and for two of the three nights, he told US when he was ready to go up to bed, the last day it was 6:30pm! He slept like a rock between doses and woke up at 8am every day, fully rested and rearing to go, dressed before he came into our room and smiling ear to ear! I had read over and over again to be prepared for the yeast monsters to increase with chelation, but amazingly, they weren't out of control during chelation, it's now, afterwards, that I feel like it's slightly out of control I don't know why that would be. Unfortunately, with the highs that we experienced during the "on" days, come the dreaded days that follow stopping the round....redistribution days. During the round mercury gets flowing out of the body with the aid of the DMSA (it's like an usher, pulling the mercury ions with it, on it's way through the body and out through the urine). The key to dosing is to keep the DMSA actively in the bloodstream (hence the every 4 hour dosing schedule day and night), as soon as that stops, everything that was moving also stops and you guessed it, needs to go somewhere. So the loose mercury will find body tissue to bind with and then you experience the down days of chelation which for some, can be like mercury poisoning all over again. The first day wasn't as bad as I expected, however, day two and three afterwards have been no fun. The yeast is out of control, he is feisty beyond words, he is showing signs of sensory dysfunction all over again (probably the overgrowth of yeast) and I can't seem to dose enough Biotin, OoO and No Phenol to get it completely under control. I can even see that he WANTS so badly to control his emotions, he tries to, he starts to talk with a high pitched wavering squeal that sounds like he is holding back the tears, trying to keep his cool and then he looses it and the anger of his lack of control lets lose. He crashes and smashes things, before running out of the room in tears. It's been a while since he has had these experiences on a regular basis, so I know it must baffle him as much as it does us. So it's on to more reading for me, but overall, I give this process the big thumbs up!!