Friday, January 30, 2009

Negative pediatrician story

I just interviewed a new potential pediatrician. I saw her info hanging in the clinic where M gets OT and music therapy. I thought I would try it since she specializes in children with disabilities. I made an appt. and went in to see her yesterday. I started my spiel "I have a child on the Autism spectrum, after learning more about what has gone on in his body we've chosen to delay further vaccines, how do you handle families who choose to delay or refuse vaccines?". Her response "well, I am classically trained pediatrician (at which point I went~this won't end well) and feel that this would be an area where we would have to agree to disagree. I feel the current schedule is appropriate and if you choose not to vaccinate you are exposing your child to dangerous and systemic diseases". GREEEAAAT. So here we go. She asks if I have read "The False Prophets of Autism". Ok so my face must have changed to a mottled red/purple color as I made a very unintelligent sound in my throat, almost a snort, and stopped her short before she could even finish her sentence and said "ah, NO". What was going through my head those was doing my head roll with a finger up and a big "OH NO YOU DIIIIDN"T" in my best Rosie Perez voice. Let's see, why would I read/believe a book from a man who receives lots of money from the pharmaceutical industry, what else would he say than vaccines are completely safe? He knows where his bread is buttered. Look at research articles and then check out which pharmaceutical companies pay those same doctors for consulting fees, research grants, etc. I think that is a biased opinion. Get someone to do research who is not tied to the outcome necessarily, and certainly not someone PAID by pharmaceutical companies. Can you say CONFLICT OF INTEREST? She then goes on to say that many people out there are preying on parents with children on the spectrum and encouraging them to use their "limited" resources on things that don't work, things that have no proof. I held up Matthew's labs results and said "Actually, I DO have proof, it is called my son". She stated again (since I mentioned we are working with a DAN! doctor on my son's treatment protocol) that these people are preying on parents, selling them special elixers to "cure" their children. I told her that my doctor does not sell such "elixers", he reviews labs and suggest appropriate vitamins and minerals and yeast treatments to counteract what has gone wrong in his body. I told her I am not blaming vaccines 100%, I do believe there is a genetic predisposition. I told her I was once premed and then switched to psychology but I know more about neuro chemistry than I ever wanted to. I understand the methylation process and the faulty sulfation that is prevalent in so many kids on the spectrum. I think her eyes glazed over. She just reiterated we would have to agree to disagree. She said she does see patients who aren't vaccinated, unlike other doctors who won't even see your child, because she thinks that of all the kids MY kids need her more than ever because they are the ones exposed to these dangerous infections. I told her I would rather nurse my child through a "preventable" disease like chicken pox (which I have, twice with M and once with E) than to try and figure out and treat damage from formaldehyde and aluminum which ARE still in vaccines. She said she thinks it is necessary to have a pediatrician to help get the resources we need, like hab and respite (is she serious here???). Believe me, I love me my hab and respite but I need the resources that are helping heal my child, and that ain't hab and respite if I can speak bluntly for a moment. She asked if we were getting PT, I stopped her short and said yes, M is getting OT, music, speech, hab and respite. I actually have a lot of hab hours, so many that other parents gasp and say "HOW did you get THAT many". No clue, I just did. But I am also honest with my support coordinator and tell them "No offense but in a few years I don't want you coming to my house every 3 months, I don't want to need OT or music or speech, I would LOVE to have this free time to just be a "normal" family with lots of downtime, and we are working damn hard to get there!". So they give me what we need, why? BECAUSE IT IS WORKING!!!!!! They SEE the progress reports, 1 communication goal mastered in the last 3 months alone at school. He keeps getting better, each visit they even notice the changes in him. Not bad for vood doo medicine, huh? So yes, I told her, we are getting services. So basically we ended with the fact that she would see my children (out of pity, sure they will be stricken with some horrible disease in the near future) but she would not agree with our family's choices. OK, so what you are saying is you are hard up for clients and will take us bottom feeders because you need to pay your bills. Sorry for the cynicism but that was how I felt. Well "DR" thank you for your time......Doesn't the hippocratic oath 1st state do no harm? OK so for the kids afflicted with Autism in part by vaccines, isn't that a failure to abide by that oath? I think so. So.......we shall stay with our naturopathic pediatrician. After the deductibles are met it really isn't THAT much more expensive. But I was still holding out this hope that I could find a "mainstream" ped who could understand our plight. I worry about managed care, I worry about forced vaccinations, I worry about the families who've had children removed from their home because of their refusal to vaccinate. I worry about this US vs. THEM approach to medicine and illness. I feel like you have to take sides. Mainstream medicine vs. holistic medicine. Why can't there be a middle ground? Why do we have to agree to disagree? Why cling so much to the dogma? Because it will open the field up to lawsuits from vaccine damaged children? Personally I think most families with kids damaged by vaccines would just be happy to move forward and heal their children, and not be looked at as crazy people. So she spoke of limited resources, yes that relates to financial resources which many families understand all too much. But there is also the resource of time. I think I will continue to spend our financial resources on our naturopath, our DAN! dr. and our supplements. And, I will reserve my very limited time resources for more research on treatments, recovery stories and no more pediatrician interviews.....lesson learned.

Great biomed success story

I want to share an email I got from a friend the other day. I know I blog a lot about the progress my son is making. But, I think it is important to hear from other moms, also doing this biomed protocol and YES HEALING THEIR CHILDREN. It IS possible, regardless of what some will tell you. I have said it before and will say it again, a diagnosis of Autism does not have to rob you of your hope. It is a hard road, I will not lie about that. But it can be done, children get better, that is the purpose, right? We all need to be inspired to keep learning, keep reading the research and keep trying different things with our kids. It does work, my son is proof, his teachers and therapists will concur. So here is another inspiring story from a local mom:


Hi Everyone!

Let me start by saying this is a looooong email, so really you only need read the first couple of paragraphs if you want. Friend or stranger, please feel free to contact me any time, and please feel free to forward this as far and wide as you'd like. As many of you may know Rob and I have an 8 year old son who was diagnosed with Autism when he was four years old. Over the last four years, we have spent tireless hours researching possible causes and treatments, talking to parents and doctors, participating in research studies and trying new, progressive and sometimes even controversial treatments. It has been a long, hard road full of exhasting days and frustrating moments, but even more than that many grand moments of inspiration and victory. Our latest and most incredible news is this: Last month Ricky was re-evaluated by his psychologist, occupational therapist, speech and language pathologist and others to determine how he is progressing. I was called in to a meeting to discuss the test findings and I was told this: Ricky no longer meets the criteria designated to qualify as Autistic. Let me say that again. Our son is no longer Autistic. I asked if they had ever heard of anyone "losing" an autism diagnosis. They all said no. Never. The Psychologist said she considered it "nothing short of miraculous" and wouldn't believe it if she hadn't seen it for herself. At the end of the meeting I left the room and as I was walking away tears began to stream down my face. This is what we believed in, this is what we worked for, this is what we did. Autism is NOT a lifelong sentence. How could it be so if we reversed it?

Now, these professionals had never heard of someone "recovering" from Autism, but let me tell you - I am hearing it more and more. Our research led us to a fast growing and forward thinking group of parents and doctors who believe that Autism and related disorders like Aspergers, PPD/NOS, ADD/ADHD, speech delay etc are treatable and even reversible. I know of hundreds of families who are using the treatments we used and who are getting their kids back from these horrible afflictions.

Most parents will report that their Autistic children are born healthy and develop normally for the first year or two of life and then something happens.. something that takes their child away. They begin to regress, to slip away. Eye contact stops. Smiles and laughter go away. Language stops developing and often disappears. They aren't interested in other kids, in toys, in social interaction and emotional reciprocity. They become preoccupied with specific things or parts of things, become sensitive to touch, bright light or sounds. They exhibit self stimulatory behavior like hand flapping, spinning and rocking. The list goes on and on.

What happens that causes these kids to slip away? Western medicine will say this is a genetic life-long illness with little hope of improvement. How can that be if Autism has gone from 1 in 10,000 to 1 in 150 in just a few short decades? How can that be if our kids were fine for the first year or two of life and then lost them? Why can't we get them back? These were the questions I asked. Rob and I refused to believe that there was little to be done. We knew our son, we knew he was in there and we were determined to get him back. If he was fine, and then suddenly he was not... how do we fix it?

We have come to believe that Autism and related disorders are illnesses of the body that become so bad they affect the mind. Heal the body, heal the mind. The treatments we have done are nothing radical in our opinion, they make sense. We feed him healthy food and use quality vitamins, minerals and other supplements like probiotics and digestive enzymes. We use B-12, cod liver oil, glutathione (a naturally occuring anti-oxidant made by the liver) and most importanty in our case, treatments for out of control viral infections and chelation therapy to remove toxic levels of heavy metals. Our son was tested by doctors and found to have toxic levels of lead, mercury and aluminum in his body. Why? He wasn't exposed to any more than any other kid his age, but we found his body is unable to remove these metals on it's own. Look on the internet for the symptoms of heavy metal poisoning and they are nearly identical Autism. With each round of chelation we did we saw huge leaps in his social interaction, eye contact and social language. His fine motor skills improved and he started to write and draw. His recovery happened so fast and the reason became obvious to us.

I know this email is getting long so I will stop here. There are so very many things I could share and so many stories to tell, but this is an email and not a novel. The point is this:

Autism is preventable, treatable and reversible. We did it. Many other parents have too. It isn't always as simple as removing heavy metals or changing diet as each child is different, but sometimes the simplest seeming littlest things can make such a huge difference. I am more than happy to share our story with anyone anytime! Please feel free to forward this to anyone you know and I will gladly talk to anyone - friend, family or complete stranger - about what we have done. Parents need to know there is so much that can be done, and they can do most of it themselves. There is a huge network of parents worldwide that are out there doing these things and supporting one another. There is hope.

with much love

Lisa Mize
Ricky's mom

Wednesday, January 28, 2009

Another reason to avoid High Fructose Corn Syrup - the mercury connection

So I just blogged about my frustration at the recent propaganda out from the Corn Refiners Association, they are blanketing the commercials and Magazing ads (including in Family Fun Magazine!) with how "safe" High Fructose Corn Syrup (HFCS) is "in moderation". I don't buy it, I've read what this stuff is and what it does to your body. And it is SO prevalent, it is in many, many things, including ketchup. Over the course of a day with a typical American diet, kids are getting way more than you think they would be. But, there is new evidence out that shows how even more harmful this is due to the way it is processed in the first place. Over half of all HFCS has mercury in it. I think we'd all agree that mercury is a bad thing for the body and brain. As if just the HFCS alone wasn't bad enough. Here is an article that talks about these findings. I will let you read for yourself. Just one more reason to read those labels and get rid of all products with HFCS, not even in moderation.....

Tuesday, January 27, 2009

Salt can be good for your health

I know the hype is out there about how bad salt is for your health. But, if you look for the reason why our bodies need (and crave salt) you would understand the process. Salt used to be full of minerals. The average salt shaker has a scaled down, processed version of its former self. The salt we commonly consume does little to promote health and yes, should be used in moderation. However, using a Celtic sea salt with all the minerals that salt is supposed to have is actually very good for you. I even read a study that the reason children are drawn to salt is for the mineral content. Once you are using the proper type of salt, kids will stop craving the salty foods once they get the required minerals. Am I saying you should listen to every craving that your body has? No, especially in this day and age of all the forms of MSG which literally cause addiction in the body, along with other neurotoxins like aspartame, splenda, etc. that fool your brain. But, if we are eating primarily whole, unprocessed foods and are not used to those chemicals, our bodies can lead us in the direction that we need to go. We will crave the things we are deficient in and once we get that, the craving will be satisfied. But, if we grab that bag of chips and eat the thousands upon thousands of mgs of sodium, that won't be meeting our mineral needs. But, switching to sea salt with those minerals could put you on the path to 1) satisfying that salt craving and 2) giving your body the essential minerals we need but don't often get.

And if you want an even healthier snack, make your own "chips" using other veggies. You can use a vegetable peeler and peel carrots, zucchini, etc. and fry them up in coconut oil, add a little sea salt and have a yummy snack without as many of the negative health consequences as regular, processed potato chips. Or you can make your own potato chips. We used to but we've really tried to scale back our potato intake. Remember, they are still chips and still have fat from the grease but hey, you have to live a little. And the coconut oil is so much healthier for you than some of the other oils out there and the sea salt will be giving you some needed minerals. And if you switch out the potatoes with other veggies, you will get some small amount of nutrition to help offset the fried goodness a little, lol. There are so many ways to increase the nutrition of snacks. You have to be creative and work a little harder, but I think it is worth it!

Thursday, January 22, 2009

Bait and switch to a whole new level

So one of today's stories on Good Morning America was on "fake" foods. I watched with interest, wondering if they'd actually cover anything with substance and I was shocked. They covered the issue of olive oils being "faked" with soybean oil. I actually gasped. Yes I did! If you are a follower of my blog, you know I avoid soy, no soybeans, so soybean oil, so soy lecithin, well you get the idea. To think the "olive oil" that I have been cooking with has really been soybean oil makes me spitting mad. It really does. This goes beyond even the usual slithery snakiness of food producers. The caveat was that most "bargain" brands could have been up to 90% soybean oil and yet labeled as olive oil. What are we to do? Shall we all set up labs in our homes to test products to make sure the things we bring home are true? And in this day of over priced everything, how can families NOT shop at bargain stores?? We are trying to go as organic as possible but we can't buy EVERYTHING organic! Then they touched on fish. I have known for a long time restaurants commonly do the bait and switch (yes pun intended) on your seafood order. You order an expensive, wild caught fish and what you really get is a cheap, farm raised tilapia or something like that. This happens with sushi all the time too. Even products labeled as wild caught salmon that you prepare yourself have been shown to be cheap, farm raised salmon with dyes and tons of toxins (PCBs). How can you tell? Does your salmon fade in color when its cooked? If it gets lighter when it is cooked, it is sure to be cheap farm raised, regardless of what the package said or how much you paid. The dyes fade in cooking. Isn't it lovely that we have come down to dying our fish to LOOK like real salmon. Disgusting. So buyer beware, seriously. If that 15 gallon vat of olive oil is $5.99 vs. $16.99 for a 32 oz bottle of name brand olive oil, you may want to spend the extra money if you are like us and want true olive oil and all the benefits. The news story said the FDA just doesn't have the resources to keep track of these issues......really?? They are too busy taking money from the dairy industry, artificial sweetener industry, corn industry and big cattle farmers and trying to push all those products, literally, down our throats and then counting their bribe money I guess......

On a related note, has anyone seen the absolutely ridiculous commercial about corn syrup? It goes a little something like this:

Two young lovers laying on a blanket in a park together, sharing a little afternoon picnic. The woman leans over to share some of her popsicle with her sweetheart. He looks at the popsicle in horror and asks "don't you love me?". She leans back shocked and says "well of course I do, why do you ask". "well" he says "that popsicle has corn syrup and you know what they say about corn syrup....." His sentance drops off like his brain has just seized up with too many trans fats. The woman has a condescending expression on her face as she realizes he can't substantiate his fear of this harmless corn syrup. She zings back "Corn syrup has the same amount of sugar as regular sugar and in moderation is just fine for you". He sighs a big sigh of relief and they turn their sparkly smiles towards the camera....meanwhile the bottom caption says

"sponsored by the corn refiners association"

Really??? Who could have guessed that this propaganda was being spread by the folks most hurt by America's wakeup call to these awful ingredients. Are we all that stupid? They must think so. I hope no one is fooled by this. Seriously. Between the sugar free products, the "corn syrup is safe" ads, ads for drugs, and the ads about fast food, I am sick, sick, sick of commercials. There has not been one commercial about anything really good for your health. I guess that is just another reason why TV plays such a big role in obesity in our country. So please don't be fooled. Do your own research and then see if you feel comfortable feeding this stuff to your family. I am confident once you know the true story that answer will be no.

Tuesday, January 20, 2009

Autism....join the club

While driving yesterday evening, I was brought to tears unexpectedly. That is pretty rare for me. I was following a pickup truck (which is pretty commonplace here) and on it's tailgate was an Autism awareness ribbon (becoming more commonplace). My eyes have been trained to recognize this sign, sort of like a badge in this club that I was brought into, kicking and screaming, unwillingly, and now with some acceptance. My thoughts turned to "how many more?". At what point will we (families with Autism) be the majority? What will change our course, collison course it would seem, between our children and our environment. I am tired of the debates. I am tired of the lies from the CDC and the AAP, that vaccines are completely safe. I am tired of the debate that rates continue to rise even though thimerisol has been removed. It is NOT just thimerisol. When you look at toxic burdens, do we not think formaldehyde and aluminum are also toxins (which are still in vaccines)? Do we not think the prevalent use of bleach, pesticides, herbicides, irradiation of our veggies and nuts with jet fuel byproduct, etc. are to blame too, are these not toxins our young are saturated with? And what of aspartame, MSG, and other neurotoxins. Evidently sugar is the enemy but our allegience to "sugar free" is so much more deadly to our brains. This is SO different than my early childhood. I can remember when many of the "convenience" foods were starting to be born. Rice-a-Roni, boxed Mac-n-cheese, more fast food restaurant, many things with several forms of MSG. So, although some of the toxins have been removed from vaccines, there are SO many more forms we are not looking at. We now think of things like swiffers and clorox wipes as "must haves". But, what are they leaving behind, unseen? Once you have a child with Autism, the more you learn the more you want to go backwards. Go back to the old way of cooking, less convenience but more real ingredients. Growing our own food, using only vinegar and baking soda to clean with. Maybe extreme to some but facing Autism can strip you of your desires for convenience and leave in its wake an unending burning desire to find out what has caused this in your child and fix it, no matter what the cost. How can you convey that to someone carrying their first child? My mind goes there, everytime I see a pregnant woman. How do I tell her "Be careful!!". You can't, but I wish I had some clue, an understanding of our human frailty. The human body is miraculous and yet not impenetrable. We all have our paths but 1 in 150 children will be diagnosed with Autism. The rates just keep rising. Without some change, understanding, we will soon be the majority, and that is not a good thing. I have seen a look inside my son in a way few have without Autism in their life. I have seen the test results showing chronic inflammation, including in his brain. I have seen the signs that yeast has dug its way into his stomach lining, leaving holes that allow undigested proteins from wheat and dairy to get through. I understand better the intimate relationship between the gut and brain. I understand why "one bite of cake won't hurt him" is so painful to hear, because yes, just one piece can hurt him. I know the looks of people not understanding why my 5 year old throws himself on the ground screaming and crying when our 3 1/2 year old neighbor isn't out to play. Their development is probably closer than I would like in terms of milestones. Although dealing with the tantrum is not fun, I rejoice at his desire to even play with someone to that level. So I feel like we need a secret handshake. So when I see another mom, struggling with their toddler in the parking lot of school, the shame and frustration and pain evident on her face, I can approach and help with the understanding of "I've been there, I can help". I had this scene a few weeks ago. A little one, who was in M's class until he transferred out, on the parking lot ground, screaming as if he was on fire, the mother, young and slight, struggling to get ahold of his thrashing body. I didn't get to know the mom like I would have liked and so I was afraid to approach, having been in that situation before, just trying to get through it and back to your car to cry in peace. I wish there was a sign, an understanding, we are the same, I know what you deal with, even if it is not exactly like what I deal with. My heart has been broken too and is healing in new, different ways. We have been sewn together, in this quilt of Autism. Each our own patch, unique traits, gifts and challenges, but coming together to show the world we must change our ways. How many more squares to be added to that quilt before we are done?

Monday, January 19, 2009

Autism Tax Info

Ah yes, the wonderful tax season is upon us. If you have a child with Autism then you have potentially more work to do in preparing for tax day. Here are some things to think about when gathering up receipts.

1) GFCF Diet - if your child needs to be on a GFCF diet, you can deduct the difference of costs of items. For example, if your child eats GFCF bread that costs $4.99 per loaf and the average cost of a loaf of bread is $1.99 you can deduct the difference, $3.00 per loaf. A spreadsheet is VERY helpful, you put in the cost difference, then tally up the number of loaves and it will do the math for you. Then it will total the entire sheet with all your items. Things like Xantham gum (which is used because the flours we use do not have gluten) is 100% deductible. That is nice since even a small container of Xantham gum is about $10. TACA NOW has an example sheet for your reference if you need it. Get a note from your doctor stating medical necessity just in case you need one.

2) Out of pocket medical costs (duh). Just a reminder, if you do not have a medical flex spending account (or you are like us and always max it out before the year ends) any out of pocket costs can be deducted. Make sure you do not deduct any premiums that are taken out of your check pretax - that is double dipping and a no-no.

3) Mileage!! YES!! If you are like me, you drive A LOT to therapy and special schools. You get 20 cents per mile. What I do to make things easier is I have a chart (again in Excel) that has the mileage for that location (for example - speech therapy). I take out my calendar for the year and count up all the trips to speech and put in the number, Excel does the rest and tallies up the miles. You do that for each (including trips for doctors appointments too!) and you get your total miles.

4) Conference registration fees! If you attended any conference with the purpose of learning more about ways to treat your child's Autism, you can deduct the mileage and cost of the conference fees. I don't believe you can deduct the hotel or meals but still, its better than nothing.

5) Trips to see doctors out of your area. You can deduct mileage and I think hotel to see doctors out of area.

6) Supplements. If you have a note from your doctor that states your child needs supplements for biomedical treatments, you can deduct these off your taxes. YIPPEE! If you are like me, you could use a full time job to pay for supplements. As if you have the time or energy for another full time job (in addition to all the medical billing, supplement ordering and giving and therapy management that you already do in addition to caring for your family as a whole!).

I am NOT a tax professional, just a mom who has to keep track of all of this stuff! So, please double check this info with your tax professional or IRS tax codes. Medical costs have to be over 7.5% of your income to count towards Federal Taxes but at least you can deduct from your State taxes. Something is better than nothing. Even though it takes a little more extra work, I think every family with a child with Autism can use every penny they can get back!! So save your receipts, save your insurance claim EOBs and save all your spreadsheets in case you need them later. I think every family should get a huge filing cabinet and endless manila folders with their diagnosis. Goodness knows huge amounts of paperwork will be a part of our lives from that day forward!

Wednesday, January 14, 2009

GFCF Tortillas and Lasagna Noodles and GREAT granola recipe

For those readers who are or have their children on a Gluten and/or Casein Free (GFCF) diet, here are a couple of products worth trying.

The first is the brown rice tortillas from Food for Life. I thought tortillas were long gone from my son's diet. But in our last order from Azure Standard, I decided to try the brown rice tortillas from Food for Life. I was skeptical but we'd give it a try. We planned a taco night and first of all, my son was thrilled to be eating tortillas like everyone else and he liked it. I am not sure whether he liked it because of the taste or for the simple fact that he was eating a tortilla like the rest of us. In any event, he ate it. Win win.

The next item was Tinkyada's Brown Rice Lasagna Noodles. I prepared it like I would normal lasagna, just sans cheese. We (my husband, daughter and I) just sprinkled some raw cheddar cheese on top and it was great. My son loved 1) being able to again eat what everyone else was eating and 2) It was really good. I could not tell the difference. So, if you even are wanting to just reduce the amount of whole wheat you get in your diet, this could be another alternative too!

Lastly, I was watching Good Morning America on New Year's day and they had a homemade granola recipe that looked really good. I went to their site here and got the recipe. I was really disappointed that they call for Canola oil. If you read my blog regularly you know Canola oil DOES have trans fats but in a sneaky kind of way. But I think trans fats are trans fats so we don't do Canola oil. I substituted coconut oil which is our favorite here. I worked off of that recipe and used the oats, ground flax, shredded coconut, almonds and sunflower seeds. I did add the peanut butter and honey mixed with the oil. It is DELISH! Perfect way to start the morning with some great protein, carbs and good fats not to mention fiber. To make it GFCF compliant I used GFCF Oats and I skipped the peanut butter for my son's, I think he is reactive to peanut butter. But, he also loves it so an all around hit. Hopefully you will try it and let me know what you think. Our nutritionist really cautions the use of regular breakfast cereals. Most have mainly carbs and not enough protein and healthy fat and the overwhelming carb load does funny things to your blood sugar. The recipes also said you could add in dried fruits but if you have a child with Autism (or without for that matter) who struggles with yeast, I would avoid that. Dried fruit will feed yeast which is the last thing you want to do.

We have our monthly phone consult with Dr. Woeller coming up and if we do another OAT test and my son still has high yeast and bacteria, we may be switching to the Specific Carbohydrate Diet (SCD) which basically starves both of those organisms. Now that won't be so great from the standpoint of that 20 pound bag of rice flour I just bought last month from Azure but oh well....So, in the meantime I will be reading Breaking The Vicious Cycle and finishing Julie Matthew's book and learning as much as I can about the switch from GFCF to SCD. Could be interesting but many, many people (even without Autism) have reported great things by eliminating lots of the yeast and bacteria feeding foods until the body can heal and then slowly adding them back. I think my son has had a lot of healing in just the last 6 months but yeast and bacteria, once they take hold, can be tenacious and can take years to resolve. So maybe I will have a whole new arena to blog on coming soon.

BTW - Kombucha is bottled and I have 2 more batches brewing. I was disappointed to find that one gallon didn't go as far as I'd like. I only got 8 bottles out of it! I hadn't sat down to do the math but still, I thought I would get more than that. But, we've got SCOBYs growing and hopefully soon we will be producing enough to drink daily plus give away to friends (who save their bottles of course, lol). Stay tuned for more kombucha fermenting pix!

Friday, January 9, 2009

Nutrients for ADHD and the role of sulfation & glutathione in Autism

While at the DAN! conference in San Diego last October, we heard data that said supplementation with iron was AS EFFECTIVE as Ritalin if the child had low iron. Wouldn't it be great to test your child for iron deficiency and supplement as needed and not give your child a prescription that has all sorts of negative health effects? Why aren't most doctors looking at these levels prior to prescribing drugs?

Another great supplement is called pycnogenol. This is an anti-allergy, helps glutathione (major detoxifier/anti-oxident) and helps with iron.

If you have a child on the spectrum (and yes, this includes ADHD/ADD, they are at the far end) you should really understand the role of glutathione. Glutathione plays a primary role in detoxification in the body. It is a great anti-oxidant. Glutathione can be severly depleted in children on the spectrum and that is a very bad thing. Increasing your child's methylation (through methyl B-12 injections) can help that cycle but you can also get glutathione supplements (IV, transdermal and liquid). I just found out why high oxalates are a really bad thing. My son had the highest oxalate levels our nutritionist, Julie Matthews, had ever seen. When you have a child with poor sulfation, the cells will take in excess oxalates instead of the sulfate (because it is not there). So instead of getting sulfate and then going on to do its thing, the cell oxidizes because the oxalates don't function like sulfates and there is a lack of glutathione to counteract it. Oxidation is basically rust for lack of a better term. Oxidative stress is also very common in children on the spectrum. I also just learned on an Autism Action Plan live video conference that eating sulfate rich food (broccoli for example) actually helps the poor sulfation.

And if you have a child with poor sulfation, oxidative stress, and Autism, maybe you too should look at these supplements. I read an email from Susan Owens who is a doctor specializing in sulfation problems. She wrote about the role of sulfation in the production of oxytocin which not only sparks our labor and milk production in child birth but also controls the center of the brain for bonding and recognition. Maybe this faulty sulfation is part of the reason some parents with children with Autism report that they seem to be just another piece of furniture to their child, their child does not recognize them as a person or have any emotional attachment. Anyways, she discussed her own faulty sulfation when her labor did not progress, her uterus did not clamp back down after delivery and her milk took two weeks to come in. As I read this to my husband he thought this was MY OWN account of my son's birth.....hmmmm....note to self, order nasal B-12 or talk to naturopath about methyl B-12 injections AND start eating a lot of broccoli!

As I say again, the apple doesn't fall far from the tree. I think that our kiddos have a certain predisposition that for whatever reason got "turned on" through vaccines, environmental toxins, etc. Why it didn't happen with us I will never know but some of the same issues my son faces to the extreme, I and my husband probably also have. We always seem to put ourselves last, especially while healing our children with Autism. But, I think it is worthwhile to take some time and maybe even have some of the same tests run on ourselves and assess our methylation and detoxification processes. We could probably ALL benefit from some of these things that are helping our kiddos!

PS - if you think you or your child has faulty sulfation - AVOID TYLENOL products!!! And by the way, many kids on the spectrum have faulty sulfation - wish I knew that years ago...

Saturday, January 3, 2009

Autism and reflection on the past year

Historically I am not a "resolution" kind of gal. If there is something I want to work on, I start right away, I don't see the beginning of the year as a necessary jumping off spot. However, I do think it is as good a time as any for a refreshing pause in the chaos of life to reflect on where you've been and where you are headed. Often times, speaking in terms of having a child with Autism, my head is down and I am going uphill against the wind. And this is a metaphor for many aspects of my life in regards to my son, his school, diet, supplements, therapy, testing, behavioral challenges, etc. It is good to stop, catch your breath and make sure you haven't gotten off track. This past year brought us so many challenges and successes, it was a tough but good year. We found an amazing doctor, Kurt Woeller, who has guided my son's recovery in a way that no one else could before him. My son's progress has been amazing. Here's what has worked the best:

GFCF diet - going on 3 years now and we see a huge difference
Methyl B-12 injections + folinic acid - this has enable my son to sleep and also to be much more social
Low Dose Naltrexone (LDN) - this has modulated his immune system so that he is healthier and also his social initiation is way, way, way up
Gaba / Theanine - this has helped his anxiety
Caprylic acid - this is a new addition and I do see big changes since adding, primarily at combating the ever present yeast overgrowth
Good multi-vitamin and multi-mineral - we use New Beginnings brand of supplements and we use their basic nutrient plus and chelate mate. I have noticed a big difference in clarity and development since adding these two
Aloe vera juice - healing for gut
Nystatin/Diflucan - yeast is something we STILL struggle with, what can I say?
Flagyl - bacteria issues, which I hope are finally gone?
Kombucha - great fermented product to help with yeast and bacterial overgrowth

Overall what do I think has gone on since August when we started the bulk of the supplements? I think his gut is healing. He has grown like a weed, finally catching up to where he probably should be. He eats food! I do not have to puree his food, his tone issues are better as are his severe sensory issues. He can actually eat things like rice and carrots (lots of tiny pieces) that would have been impossible for him to eat just 6 months ago. I can now fix a (GFCF) meal for the whole family with no extra preparations, whoo hoo!! He can eat SOME refined sugar or dyes (like in a gum drop on his GFCF gingerbread man) without a major and immediate reaction. Chalk that up to gut healing! I can hold a conversation with him. He regularly asks for kids to come over and play with no prompting from me. He fights with his little sister and takes pleasure in grossing out both of his sisters with poop and throw up references (pretty appropriate I would say!). He transitioned out of the Autism preschool class and is officially in the integrated preschool class. My son potty trained this year!!! YEAH!

How does this effect our family? What can I say? Any family with a child with Autism can be rough. Hey, 80% divorce rate says it all. It can tear you down and yet watching these accomplishments builds you back up. But knowing what we are doing is helping is awesome. We have so many more moments of pure joy, less of the screaming meltdowns (not counting tonight when I think we are having another food reaction). So many things that other families take for granted we relish, it really is the little things. For that I am thankful of this experience. I personally think my earlier aspirations of pre-med are finally coming true, even though I sucked at chemistry in college. I have gotten a lot better, even keeping up with the neuro-chemistry data presented at DAN! Who knew I could really understand chemistry after all? I think my brain is full though.....

What does this next year bring? Well for one I am scaling back his outside programs. This is his last year before Kindergarten and he is gone so much and really I want to buckle down on some things he needs to work on prior to Kinder. Being the anal retentive Type A, I feel like I can do that best. He has also been really, really resistant to some programs and that is my cue that something is not right in that environment. But, we still have plenty to keep him busy, preschool in the mornings plus OT, music and speech therapy. So much work for someone so little!

So from the standpoint of reflection, the New Year is a really good place to do that, especially for those with children in school. It is the midpoint of the school year. Can it be?? Really?? That just hit me that the school year is half over. How quickly time flies. In any event, that is our plan and I hope you all had a fabulous 2008 and are looking for an EVEN better 2009!! Here's to awareness, new found discoveries, progress, tolerance, patience and a whole lotta love in the new year!

Friday, January 2, 2009

Gastrointestinal support for Autism - Aloe Vera Juice & Slippery Elm

So a hot topic on Dr. Woeller's parent chat forum was about slippery elm and aloe being good digestive supports. In case you don't already know about Autism Action Plan, click here and find out

Anyways, a few parents were talking about digestive healing/support which is huge for most children with autism. But, as I did research on Aloe Vera juice, I realized we could ALL benefit from it. Now the key is to find pure aloe vera juice and find the ones without citric acid and/or sodium benzoate. We like George's brand that we buy from Sprouts or Azure Standard. I also read that aloe vera juice, if given with supplements, increases the digestion of the supplements something crazy, like 2000%. So off we went to try aloe vera juice and slippery elm. Slippery elm gives added moisture to the stool so it is easier to pass. Within 3 days of trying these my son was pooping on the toilet! Hurray! That was huge for us since he was very resistant to any sort of discussion of this. He would scream bloody murder if we tried to get him to sit on the toilet to poop. Now he hasn't looked back. I posted a query on Autism Action Plan about whether the two could have contributed to either his awareness (since we know with sensory issues that my son has often he cannot feel that he has to urinate or defecate, we struggled with that aspect for a long time) or consistency of stool. Obviously harder stools means pain in passing and a resistance to going. Plus there is the general fear that goes into that level of potty training. Dr. Woeller responded on the board to say that it could have been the consistency issue and also a general toning of nerves by the supplements that also helped his accomplishment. The aloe vera juice we give with 2 doses of supplements so he gets about 2 ounces per day. The slippery elm we've kind of slipped on since it has to be given between meals and it is harder to work into the schedule given school and therapy.

So, if you suffer from any digestive complaint, you may think about 1) removing foods that you seem sensitive to and 2) adding in some digestive support like slippery elm and aloe vera juice. From what I read, aloe very juice gives your food "an exit plan" which is always a good thing! But, as with everything I post on here, this is what I read and reasearched, I am passing that on with the hopes that you too do your own research. And, if you find any additional info out, please share it! In the meantime, do a shot of aloe vera juice, it just may do you some good!