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February 3
Took another trip to Winfield today to see Dr. Wagstaff. Luke's yeast is in control which is great news. Now we can begin testing other things in Luke's body, so he began with some chemicals and some viruses. Luke is affected by Epstein-Barr (a form of mono) so he will be treated for that, along with a few specific chemicals. I mentioned and thanked Dr. W. for the "cure" from pet allergies and he was very pleased that the treatment worked so quickly and so completely. Often the treatment will resolve up to 80% of a person's allergies, and for some it is less effective (unfortunately). In Luke's case, the fact that it worked so quickly means his immune system is in great shape and is working very efficiently. I asked, as usual, my variety of questions:
1. We are rubbing a Glutathione cream on Luke's liver once a day. Unfortunately, Dr. W. is skeptical of the effectiveness and has an alternative way to stimulate certain amino acids to increase glutathione production. He will test Luke and administer this treatment when Luke's body is ready for it. We will use the rest of the cream as it was $57.00 for a very small bottle, and discuss this with Dr. Bratt when we see her next.
2. I've read "Valtrex" (medication for herpes) is effective for these children who can have a range of viruses in their bodies. Dr. Wagstaff said the "Valtrex" hides or covers up the problems, and he treats the very specific viruses homeopathically, one at a time .
3. Since Luke was treated for the measles vaccine and measles-related damage last time, I asked about the other vaccinations and their possible damage. Dr. W. will test Luke for these in the proper time as well.
4. Should we have another "allergy" food panel test done when we see Dr. Bratt next? Yes, we can. It will show that some of the foods Luke was originally sensitive will have a decrease in their sensitivity. Dr. W. explained that he has done a "blanket" mop-up approach on Luke's allergies and whatever foods continue to cause allergic reactions (as will be shown on the new test) he will treat specifically (analogy to the "sticky" stuff still on the floor that the mop could not clean-up).
5. Is there anyone on the coast doing the same treatment as him? His answer was that very soon they will be beginning monthly clinics in Abbotsford and if people are interested in seeing him there, to please call his office at 250.766.3633. There was a discussion about a possible "explanatory/information" day where people could come and learn about his practices.
6. Our other son Joel has a possible fungus (under his big right toe). Dr. W. said that he probably has an underlying systemic fungus throughout his body (aka candida) which he got from us (the parents), so I was tested for my yeast/candida and I am loaded with the stuff (not really a big surprise to me). Luke's dad, Joel and I were given proper probiotics and a specific 2-week diet to follow in order to cleanse our bodies of this overgrowth of bad yeast. We will start on Saturday. In addition to Joel's candida treatment we will need to put one drop of iodine on the affected toe once a day.
7. I asked about mammograms as I'd heard the "painful" ones may actually cause cancer as they involve a small amount of radiation. He said "if a man who had testicular cancer had to be tested in a similar way to mammograms, there'd be a completely different option!" He said an ultrasound is just as effective, if not more so, and one could request an ultrasound test instead of a mammogram. Most other countries test using ultrasound... we've just spent so much on the current mammogram testing that we should use these machines. Interesting, hey? I'll let you know what kind of response I get when I call to book mine (I am 41, but am still breast-feeding my 21-month-old... he will be weaned at 2 years old — in May — so I will have to schedule my appointment shortly after).
He explained his process of testing for Luke: first he gets rid of the big problem that's in the way of all other problems: yeast. Since Luke's yeast is within normal range finally (after one year!!!) he can now begin testing for chemicals that have hurt Luke's system. In the next appointments, he will move onto pesticides and household chemicals. He can also begin testing for a variety of viruses (from 300-400). He did some of the "most popular" today and will, over time, test Luke for all of them. No, he cannot test everything at once as Luke's little body can only take so much change and treatment; and Luke's patience can only last so long. In the end, Luke was also given two bottles that will aid in calming his nervous system, and one more bottle of "Silver Birch" has been ordered. It was a hefty bill, again... sigh... but Luke's dad and I do believe were on the right track and are impressed with the results so far.
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Luke's dad and I will be attending the Autism Biennial Congress Conference in Vancouver at the end of the month. A lot of bigwig leaders of biomedical treatments will be there, so I'm quite excited.
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I've been looking into Hyperbaric Oxygen Therapy and am discouraged by the price-tag. Charities do not help unfortunately as it seems to be considered a "controversial" treatment. I've called a few places in Vancouver and I need to do a bit more research. The information is varied: one place wants to coordinate many families so they can run the "oxygen chamber" for a number of people at a time... Luke can have 1.5 hours a day, with a 40 hour minimum, at $100.00 per hour (with a possible discount if he qualifies for a clinical trial). Another place says Luke will have to be monitored closely (because of his seizure disorder) and there would be a minimum of 60 one-hour sessions at a discounted rate of $120.00 per hour. These sessions would be one a day (open M-Sa) which would mean me and the boys spending up to 10 weeks on the coast. I will look into a couple more options, one including talking to the company Oxyhealth... who will be at the conference. We shall see. I could wait until next summer as well, but apparently "the younger the better" and the lesser the treatments. Need to learn more.
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I've made an appointment with Insight Developmental Learning in Langley for Monday March 2 at 12:30pm. They take a different look at Luke's visual development and if perspective/perception are affected and if prism glasses are necessary, etc. Will have more information after we see them. We must bring Luke's prescription (he is near-sighted and has a stigmatism in one eye and we have the option to get glasses for him which we have chosen not to do just yet). It will be great to get another opinion on Luke's eye issues (Luke has never watched tv, but has recently begun watching a "Chicka, Chicka, Boom, Boom" DVD and within the last couple weeks has been requesting Joel's favourite "Backyardigans" DVD). I have heard the "tv" is difficult for children with autism to watch, but an LCD computer monitor is easier to look at (which is what we use for these children DVDs). The cost of this preliminary meeting will be around $45.00, and from there we'll see if Luke needs any further testing or help.
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As an aside... I send "ALL INVOICES" to our extended health insurance company. I never know exactly what is and isn't covered, so you never know. We are currently paying for our benefit plan (a LOT), but we're hoping my husband can get full-time work so he would have full coverage. Time will tell. I hope some of this information will one day breakthough to the government so parents can have more freedom to follow alternative (SUCCESSFUL) treatments with the funding.
February 16
We're halfway through our yeast and sugar-free diet (Luke's dad, Joel and I) and it's pretty tough. Never realized how much sugar and yeast were in everything. We've been making juice from scratch, so it's a lot of work, but it's only for two weeks. We totally crave sugar! It's painful. Can't wait for the weekend
Luke has been having a few setbacks lately which is discouraging. He seems a bit anxious again. He has also been wetting the bed in the morning. He's been raising his arm to "hit" and sometimes follows through, although a good stern look from me actually makes him think twice (and sometimes I get a kiss instead). I spoke with our speech therapist and she gave me great advice on redirecting his hand into either a high-five or grabbing it gently and placing it on my lap and asking him what he wants (as it's obviously an attention-seeking behaviour).
At preschool it's status quo... nothing exciting to tell. As usual, it's two steps forward, one step back. We seem to be in a step-back phase which is always disheartening. Broke my heart to take out all the chocolates and heart-candies from his Valentine "loot-bag". I hid them in the freezer and hopefully one of these years he can enjoy some typical children's treats. Sigh.
The good news is that we finally got a new BI and would you believe she lives just down the street! She also has a son with autism, so we talk treatments together. She'll be a great asset to our already amazing team... and she starts next week, so we're on-track for some intensive ABA months.
Luke's dad and I had a big discussion about alternative therapies and where do we go from here. I'm a planner, so I needed to know his thoughts. We've decided to postpone the Hyperbaric Oxygen Therapy for a year. We want to focus on the ABA, DAN treatment and homeopathy until Luke turns 6 next summer (2010), after which the funding is drastically reduced. We will look into HBOT next summer and at that point we can hopefully request charitable funding from Cops for Kids again (they actually seemed open to the idea, and we can apply for funding once a year). We are also not sure about continuing the Tomatis hearing training, as the subsequent "screeching" phase is really tough to take. This past one lasted almost 2 months. It's over now, thank goodness. He is, however, starting to say more words, so perhaps we'll look into it in June of this year as that is the recommended schedule.
One other thing to be so grateful for is that as of yesterday, Luke has been seizure-free for one whole year. Woo Hoo. We're hoping that after the next EEG we'll be able to start weaning him off the medications.
February 23
Luke seems to be doing well again. We've strategized about the bed-wetting in the morning and just have to be a little more patient and tricky into getting him to pee before he goes to bed. It's worked so far.
We had a team meeting last week and Luke seems to be doing well in his programs. Anything that he seems to be stuck on, the team leader just changes approaches. He does seem to have a thing for numbers. Our new BI will start full-time next Thursday (she's at training Mon-Tues this week), so we'll be in full-swing soon. She is also willing to work every-other-Friday as well.
Luke's words that he uses all the time: hata (hat), no, gacka (cracker), mo (mouse), die (light), bye (chips - yeah, i don't know why), doe (juice), awa (water), upa (up), dow (down), moh (more), daddy, mommy. Words we've heard once or twice: cow, stawbye (strawberry), pe (peach), nene (lemon), Elemen (Honda Element - our car).
February 28
We're back from the conference and our appointments. I am personally overwhelmed again. While we were very affirmed in our path to healing Luke, we realized we are still at the beginning of the journey. There is new information all the time in the research of the biology of these children. We have discovered that cholesterol levels are low in these children and fortunately we had Luke's levels tested last October (I had heard about the cholesterol issue last summer). Luke's levels are very low and so we will begin supplementing a cholesterol supplement (each supplement is the equivalent of one egg). We had taken eggs out of his diet a year ago because of an allergy sensitivity to them. We should see results soon, but it will take a long time for his levels to increase to normal.
And that was just one thing we learned... here's a quick summary of many other things:
• Some potato chips are dipped in flour prior to deepfrying, and this does not need to be put on the list of ingredients for whatever reason, so Luke's "addiction" to chips is because he may be getting gluten. After more than a year on the strict diet it is very discouraging to realize we might have been hurting him. So, he's off chips again.
• Oxytocin levels, in combination with cholesterol are critical (we will look into testing for and supplementing oxytocin if possible);
• Aluminum is highly toxic: must remove non-stick cookware, aluminum foil, and juice boxes from children with autism;
• Arsenic is also highly toxic, and is used to keep chicken feed from molding, so non-organic, non-grass-fed chicken has arsenic in it;
• Antimony is also toxic and is everywhere... used as a flame retardant in children's blankets, clothes and on furniture;
• Lead is everywhere: toys, household paint
• We need to check Luke's iron... a deficiency in iron can explain restless sleep;
• Cod Liver Oil helps with visual processing and reduces inflammation;
• Some Calcium supplements contain lead (check your product);
• Syndion is a new product that is available which is a replacement for the standard multi-vitamin. We will be purchasing this for Luke.
• Testosterone makes heavy metals like mercury more toxic, while estrogen "protects" which can explain the ratio of boys affected to girls (4 to 1).
• If possible, get your water tested... it can be full of metals. Our naturopath just moved into a new (old) house and was concerned about her son's regressive behaviours and after getting the water tested, realized there were horribly high levels of chemicals in their water. In any case, you should install a Reverse Osmosis filtering system.
• The Hannah Poling case in the US, against the vaccine companies, was granted a monetary payout (no court trial) because the parents had such a solid case (dad was a neurologist with PhD and mom was a lawyer and a nurse). They discovered a mitochondrial disorder in Hannah that they now believe to be prevalent in 80% of children with autism, and it's treatable with supplements (Luke's on a lot of these already — yay).
• Dr. Jeff Bradstreet (world-renowned) spoke on the fact that autism is both an inflamation of the guts and the brain, with the child's autoimmune system working overtime to ineffectively combat all the assaults (heavy metals, vaccines, environmental toxins, allergens). These children are coping with intense oxidative stress and inflamed immune cells which are alleviated by mild hyperbaric oxygen therapy, as well as supplements and chelation.
• Siblings of children with autism are "in-between" autism and NT (neurotypical) children so we MUST keep an eye on them and should test them over time and treat them with appropriate supplements.
• An extensive test at the Phillipe August Laboratoire in Paris, France is highly recommended for a thorough test of the child's chemicals, toxins, bacteria, and appropriate levels of porphyrins, pterins and amino acids (proteins). Since we've completed most of these tests through the Great Plains Laboratory last January, Dave and I have decided to have this test done again with the Paris lab, in order to see the changes (in comparison) and to detect new biomarkers as it is a much more comprehensive test (and similar in price). Our naturopath is more than willing to review the test results and glean information from her network of skilled colleagues for an appropriate interpretation. We also have the option of having the test results sent to Dr. Bradstreet for interpretation, with follow-up and treatment being performed by our naturopath (Dr. Bratt).
• Metal toxicity is so damaging to these children because they cannot properly excrete these toxins; and the cummulation of all these different heavy metals (lead, arsenic, aluminum, antimony, mercury) is exponentially damaging. Chelation is imperative.
• List of good foods: whole foods, unprocessed, organic, fermented foods, grass-fed/pastured meat and eggs, good fats; List of bad foods: artificial colors/flavors and preservatives, MSG, pesticides, aspartame, excess sugar, nitrates/nitrites;
• Good Omega 3: fish/cod liver oil; flaxseed oil; DHA; EPA; Good Omega 6: borage oil, evening primrose oil, black currant oil, hemp seed, nuts, grapeseed oil; Good Omega 9: olive oil, avocado, nuts/seeds; Good saturated fats: coconut oil, palm/red oil, animal fats, ghee/bacon; AVOID: vegetable oil, safflower oil, corn oil, and soy oil.
• Seizures generate oxidative stress, and then we give the children medication which actually damage the inner cells (we plan to wean Luke off his low-dose medications after his next EEG sometime in May).
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After the conference we had an appointment with Dr. Bratt and we will be implementing the following things:
• Cholesterol, start at one capsule and increase to 4 a day.
• A sample product called NeuroPro (from www.aor.ca in Calgary, not for sale yet) which contains ingredients shown to reduce symptoms and improve cognition. Some of these, which we have not yet given Luke but were looking into, include: l-glutamine (heals gastrointestinal lining), and lipoic acid (for mercury chelation and for glutathione production), and carnosine (for seizures). I'm excited to start this, but we will begin with the cholesterol; and then this product (in a couple weeks).
• Syndion is also a new product that is an antioxidant multivitamin and mineral supplement formulated for children and adults with special nutritional needs and food sensitivities, so we will purchase this when our other vitamins are finished.
• We will look into whether or not we can purchase oxytocin somewhere (our naturopath cannot get it);
• Tumeric is VERY GOOD for yeast control (we will be purchasing this) and goldenseal is great for infections;
• Riboflavin is also great for the mitochondrial disorders (along with CoQ10 and L-carnitine which we are already giving Luke).
Luke still has diarrhea which is why we will be doing a follow-up organic acid test with the Phillipe August Laboratoire... the results will tell us if there's something we missed. We will also take him off chips which may resolve the diarrhea as well.
Hyperbaric Oxygen Therapy is back on. I will be researching all our options. I spoke with the Oxyhealth company at the conference and was told it would be $2500.00US per month to rent a chamber (plus shipping) or $20,000.00 to buy one (ayiyiyi). I've sent an email to other parents in the area who might be interested in splitting the cost? There is a company in White Rock and a company in Fort Langley that I will get some information from as well.
We will also be requesting a blood draw to test for cholesterol, prealbumin, complete blood count (CBC) and iron when Luke is at Children's Hospital for his follow-up EEG in May.
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After our meeting with Dr. Bratt we went to Langley to the Insight Developmental optometrist who did a number of visual tests on Luke (including basketball shots and trampoline bouncing?!) and he recommended that we fill his prescription to help resolve Luke's stigmatism. So Luke will be getting glasses. We will work with this doctor over the next year to gradually increase the prescription to corrective lenses to additionally resolve Luke's myopia (near-sightedness). Both of these issues are genetic (he got them from me), and are not autism-related. Luke is too young to properly test for Irlen Syndrome, an autistic-related problem resolved by corrective prism glasses. Luke also did not seem to have any perception issues which we once thought he did.
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