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 AutismActionPlan.org. 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 - http://lowoxalate.info/. 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??

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:

http://www.whale.to/vaccine/ayoub_v.html

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.

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 - http://www.brainchildnutritionals.com/Feel_Good_Reix.html

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!!

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!!

Chelation begins

So when does one decide to start the long, tedious and slightly frightening process of chelation? Promptly during the most harrowing wind storm the spring can muster up. Why? Because you can't sleep when you have to dose a child through the night anyway, right? As wrong as it sounds, this is exactly how it happened for us. All these weeks we have been gearing up for chelation, just to put it off for one reason or another, like trying to figure out supplements, we finally decided to get on with it.

We started with the very first pill at 5pm on Friday and it was as if we were waiting for some miraculous event to occur the moment it hit his tongue.....there it goes, we can't get it back now, this is it!! We gave it to him and well, went on with the day, feeling relieved, amazingly. Dave and I just kept looking at each other and smiling that smile that said, we are doing it, we are REALLY doing it, finally!! We just needed to remove the weight from our shoulders and do it. Last night was rough, as I mentioned, we had a disturbingly intense wind storm all night complete with power outages, beeping carbon monoxide alarms, pitch dark to enhance the already tedious job of waking Grayson to take pills and setting an alarm clock by moonlight just to lay in our beds restlessly while the storm whipped our siding with force that kept us all a bit tense. At one point, Grayson ran in screaming from across the house, he was terrified, then the baby chose 5am to wake me for his first feeding of the day, nice timing!! Needless to say, we made it through the first night and day. He did really well and today was a bit tired, but the yeast increase wasn't as bad as I expected it to be. I was so prepared for a fury of yeast symptoms based on my reading, but he was very mellow, calm and darn tired, poor thing. He even told US when he was ready for bed....7pm!! One more night of this and for once, I think I am actually looking forward to the week days when we can sleep all night and wake at a reasonable hour. Chelation is only done for a few days on "round" and then a break is taken that is at least as long as the days on, so most people chelating kids will do it on weekends so as not to disturb their school week since it can produce tired and "stimmy" kids. Works for me! We are one day closer to complete recovery. I so often see bits and pieces of the magnificent, calm, intelligent, patient, sweet, caring, and did I say calm little boy we know we can have on a daily basis. I can't wait to experience this day in and day out and I can tell you that I will never again take for granted the simplicity of normal life, with normal foods and no horrendous meltdowns over things like shoes, sleeves, wind, sun, birds under the deck, oh you get the point. We are headed there and today was the first step in that direction. Onward I say...

Traveling with 23 food allergies

So we thought it would be fun to hit Boston while the hubby was in Hawaii, don't ask!! Yes, work related believe it or not, ha ha ha. Anyway, I prepped and prepped and prepped for a small getaway with the boys and my sister. I think it took longer to prepare and pack the foods than it did to get there (6 hour drive)!!! I found this great cooler/refrigerator designed for cars, you actually plug it into the outlet in the car, very cool!! I made as many things as I could that could be frozen, like mini turkey burgers, chicken sausage slices, chicken strips and packaged everything separately into little individual sized baggies, teff pancakes, I even made and froze buckwheat cereal and millet stir fries. I put those into Glad containers for easy single serve and go options. I also bagged up more individual meal-sized frozen veggies for easy defrosting and heating. I had to make sure the hotel would have a fridge and microwave, of course! So I packed it all up to go, along with many dried snacks like millet puffs and Nutty Flax cereals, freeze dried fruits which are great for snacking or adding to cereals, nuts, yellow raisins (red are high phenol) and I even brought fruit (and a knife and cutting board). I had a few small coolers for all day outings and I used a week-long, four pill-a-day organizer for supplements and enzymes. What is great about the organizer is that I can grab the "day" sized container and throw it into our cooler for easy dispursement. It was like packing for a small army, but I must say, the food part was probably the easiest part of our trip! Sleep was our biggest problem, or lack thereof, I wouldn't recommend all sleeping in one room with a baby, a preschooler and adults....not a good plan!! I would say that although it's a lot of work to plan for a trip, it's doable, if you are adventurous enough and have good help. Don't let the food planning hold you back! Before the trip, I even looked for gluten-free menu options at restaurants in the area and we were able to hit one of these. It was just as easy to bring our own foods, but also nice to have options to make him feel like everyone else. So if you are thinking about a weekend getaway, I say go for it!! More than a week and it might get complicated, but with a freezer available, it's probably just as easy as traveling for a few days, just a few more servings to pack up.