The Recovery Room: Can We Ever Abandon Biomed?
As I mentioned in my very first post, when I first thought about recovery from autism, I thought of it as something with a definitive end. Like the last chapter in a long, emotional, roller-coaster-of-a-book, I could turn the final page and be done with it.
That’s what I thought. That’s what I hoped. I didn’t realize, however, that autism would forever change me, and that frankly, that would be impossible.
None-the-less, in practical terms, I did believe it would at least be the end to a few things. No more IEPs. No more weekend rounds of ALA. No more carrying a cooler around in the back of the mini-van.
The supplement cabinet would be cleaned out. I would stop planning my Memorial Day weekend around Autism One. I could get off the computer. I could relax. And most important, we could eat…like a normal family.
Out of all the things I hated regarding autism recovery, I have to admit the thing I hated the most was the diet. Not only were there very few choices for us at that time, it was more than that. It was the way not participating in our culture in a social way made me feel even more isolated than I already did. Food is not only a form of love; it is also a form of socialization. It felt like I was depriving our family of both.
Every day, it seemed, I was on patrol as the food police. I had to battle family members who didn’t buy in and thought a slip of an M-&-M here or there was no big deal. I had to plan days, sometimes weeks ahead of time for a simple family birthday party to make sure we would not have an infraction, and would have an alternative to that piece of cake or cupcake everyone else was having.
Is there milk in that? Did you bring the enzymes? Where did she get that cracker?!
It made me crazy. It became easier to just stay home…sort of. Although more practical, that was more painful. Autism had already isolated us so much; now we were going to miss family functions and neighborhood parties? No way.
And so we endured. Doing our best to manage dietary decisions on a case-by-case basis. Hoping the enzymes would do the trick when I just couldn’t say no. Feeling guilty when I could say no and guilty when I couldn’t. Being done with the diet was something I looked forward to eagerly.
Additionally, as my little one got older and not only did she get better, but also more independent, micromanaging her food became harder and harder. I wasn’t with her every second of every day. I was grateful that with her healed gut came the ability to have more “normal” foods. Within a few years, as I had hoped, we were back to eating whatever we wanted.
And that’s how it’s actually been for a while now. We are not on the diet. We haven’t done anything other than a multivitamin and some keifer in years. We do keep enzymes as a part of our routine, just because they help with all of our digestion. For the most part though, we eat what we want, when we want, how we want...although we do eat very consciously, mostly homemade and organic food. It’s nice.
Or is it?
A recent trip down memory lane came in the form of some videos we were uploading to our computer. I hadn’t seen the videos in years and many of them brought tears to my eyes. When you are so focused on what your child can’t do, you forget sometimes what they can.
I watched in astonishment at her early and rapid gains only a year into treatment. Here she is only a year or so after beginning biomed. Considering she couldn’t converse, showed no imagination or personality, and looked like she was liteally on drugs prior, this video clip is pretty amazing.
As both my husband and I played the videos over and over again, one thing became very clear. She was sharper then than she is now. That’s the best word we can use to describe it. Her eye contact was crisper. Her responses were crisper. There is no doubt about it.
We’ve dabbled with the idea of going back to biomed for some time. We worry that over the years she’s accumulated more metals and without being on the diet, could have some gut issues that need to be addressed again as well. Even so, our comfort with our lifestyle right now has made us feel like, ah, well, maybe.
After watching those videos we realize it’s not up for debate. We’re going back on biomed. Which begs the question: Was I wrong to believe I could ever abandon it in the first place?
I’m thinking, yes.
Julie Obradovic is a Contributing Editor to Age of Autism.
We have no diet, and are not on an IEP. Though we did CFGFSF for over 2 years, we're no longer doing it. We do have a mostly organic, 'cleaned up' diet.
Your answer to a "sharper" and "crisper" child is in what you said here:
"No more weekend rounds of ALA"
After 100+ weekend rounds of mostly ALA (DMSA 1x per month) we've worked up to a a really great place. We keep going, now every other weekend, and longer rounds during long weekends and vacations. We'll do this until there are *no* symptoms.
Forget an 'autism' diet, and go back to the rounds. After a weekend of hard work you and your husband can exchange the "did you hear that?!" glances on Tuesday. It works.
Posted by: Michelle | March 07, 2013 at 05:15 PM
Maybe this is old news or not very relevant, but maybe some here have some experience with this? I've recently looked a little into soaking grains, beans, nuts etc., with differing methods, the point being to try to minimize phytic acid levels with the current understanding that high levels interfere with mineral absorption.
It seems like so many of the gluten-free grains, nuts, etc. had either higher phytic acid/phytate levels than wheat and/or lower phytase levels, an enzyme that helps convert phytic acid into an organic form, and I wonder if most of the pre-packaged/commercial-made gluten-free foods are not prepared in a way that attempts to overcome this?
I haven't had a long time to try this out for our family, and I'm wondering if it is a good idea. If any children that seem to need a low carb diet sometimes do a little better with more attention to soaking seed foods or if this may be effort that doesn't really address any of the intestinal/immune/detox issues?
Posted by: Jeannette Bishop | March 05, 2013 at 10:38 PM
We have thrown the kitchen sink at the problem for 5+ years .We have chopped and changed a fair amount but have been consistent with the level of our efforts . Each success seems to lead to another problem that needs to be overcome . I try to concentrate on the outcome , I am positive or stupid enough to believe that one day we will crack this . But in truth the recovered children seem to get recovery quicker than we are seeing it ... oh and the recovered I've seen are at about 80-95% ... and compared to where they were , this appears to be nothing short of a miracle . Where is my child currently - maybe 50% - if I'm lucky . But its my firmly held belief , that everything needs to occur to give these children any chance at all . So a restricted diet but highly nutritious-organic whole foods , chelation is a must surely , supplements & minerals & vitamins , and we also do the hyperbarics . Add to that fresh air , exercise , sunlight and a loving home . We are doing all of that , and we still arent anywhere near where we want to be .
Add to that : Campaigning parents who are complaining everyday against the so called authorities who have decided to amplify and magnify this criminal conspiracy to hit children in their millions .In fact its our entire extended family who are now at war with the so called authorities .
Deliberately murdering and injuring children - have they no shame ! what a crime .A vaccine crime .
Posted by: Jilly Ann Beret | March 05, 2013 at 08:36 AM
Having spent eight years on GF/ Cf with my adult son, we gave up. He had a horrific withdrawal from these foods, which seemed an indication that there was a problem, but it made no difference. SCD made him very much worse and we later found that this was because of the high oxalates in this diet. Low oxalates were very helpful, but as pointed out, adults can make their own choices. My son chooses to eat vast amounts of chocolate which has made him really disturbed. It is a constant struggle to get it through to him that certain foods make him ill.
Not the case for him that lots of healthy vegetables are good for you. In fact it seems that the ones with the most ant- oxidants contain the most oxalates!
It all boils down to gut bacteria, I'm sure, as they are trying to develop an oxalate digesting probiotic. Other research shows benefit from a different bacterial strain. It is in the pipeline. I am very sure that this will be of benefit in lots of conditions, not just ASD.
Of course we will all need clean uncontaminated food and minimum antibiotic use to stay that way.
Posted by: Christine MacVicar | March 05, 2013 at 04:59 AM
I was very stringent with my daughter's diet for several years, but it was a constant battle with my family who thought it was just plain stupid to think FOOD could make a difference with an incurable disease. Sigh. The past year or so I eased up on the diet, allowing occasional lapses, and stopped the supplements. I thought I would do it for a few months, but before I knew it, almost 18 months had slipped by. My daughter has continued to make progress, but I too have begun to suspect that she isn't as "sharp." She flaps more and struggles to recall words. I've been trying to muster the energy to return to the supplements, which frankly, are a pain. Thank you for giving me the needed push.
Posted by: Cynthia Patton | March 04, 2013 at 10:49 PM
Wow I related to this post, Julie! We saw multiple DAN doctors early on--took best bits of each of their protocols- but ended up with over 50 supplements and not much coordination of efforts. Finally, our last stop- a brilliant physician in Austin said "you can chelate metals forever, kill pathogens forever, and do a gazillion lab tests and give a gazillion supplements...but if you haven't healed the immune system you will never get your child back." We began the healing journey in 2008 with a severely nonverbal child and both of us weary, skeptical, and out of time and money. We sold/traded most of the supplements and GFCF foods, autism help books, DVDs. After 3 years of slow (sometimes painfully slow) improvement, we finally got my son's immune system healed and now we are on maintenance mode of keeping a clean diet (organic, Paleo) and we avoid most of the sugars and starches in GFCF foods. He is speaking now, doing grade level work, and continues to recover but he is almost 13. I don't regret biomed. We learned a lot. Especially how to detox and avoid environmental triggers that could cause him to regress. But, biomed can be a band-aid if the neuroimmune system is not healed first. Had we known this, we may have seen faster recovery and had less expense...
Posted by: Biomedmomarella | March 04, 2013 at 10:25 PM
I have also looked forward to the day we could anything we wanted. But as time goes on, it makes sense to rotate a wide variety of foods and to eat unprocessed foods. The SAD is bad and more and more evidence confirms that. I just started reading "Wheat Belly" - just confirms how much damage happens when we tinker with food. Really, none of us is practicing good health by eating the typical diet.
Posted by: Shelly | March 04, 2013 at 04:11 PM
Being on the diet has improved the health of everyone in the family. Once you learn about what the SAD really is, you really can't go back. There are easier options that are Non-GMO with fewer ingredients, but even those items shouldn't be eaten daily. If you look back just 100 years ago, most folks made everything from scratch and didn't eat all of the bread and pasta and sugar that we eat now. I don't think eating "normal" food is something to aspire to.
Posted by: Planetpj | March 04, 2013 at 03:09 PM
I so hope & pray you are wrong, but eating healthy unprocessed uncontaminated food at least should be a lifetime habit. Who knows, one day the ability to visually tell whether a food is wholesome enough or nutrient dense enough or too contaminated will be as simple as holding up some sort of scanner while walking through a restaurant or cafeteria, maybe it will be programmed to recognize energy patterns for various substances and/or proteins and or fats to meet your personalized criteria within a certain range.
Here's a technology that's coming close, from Lumora, in the UK, and can recognize not just GMOs, but viral loads, and bacteria types in food, crops, blood, and urine. Maybe someday it will sit on the bathroom counter of every household w/gut dysbiosis and digestive problems so that instead of running to the doctor to understand your child's current balance, you do it yourself. It's already designed to be portable, not needing to be at a special lab facility. Dare I wonder if an insurance company would cover the cost of it? Maybe it's the basis for a future handheld device.
BART is an entirely novel class of reporter system especially developed to address the needs of molecular
diagnostics. In particular, it provides a route for increasing the uptake of molecular testing where either the
cost or fragility of previous tests has impeded uptake.
BART has been demonstrated to work with several different isothermal NAATs without any adverse affect on
their inherent sensitivity or specificity. In fact, faster kinetics using BART have been demonstrated compared
to using fluorometric reporter systems. As such it represents a highly versatile reporter system.
Both in-house and in collaborative studies, BART has been demonstrated to work on a wide range of targets
including bacterial and viral pathogens, GMO material and human SNiPs from a very wide range of matrices,
including foods, crops, blood and urine. Where appropriate, details of this work are available under
confidentiality as are prototype hardware units and freeze-dried BART reagent.
And maybe someone will be able to easily investigate the overlapping similarities in the role of metabolism in all these chronic diseases, and even maybe do before & after vaccination profiles to understand how toxins & vaccines affect metabolic processes, to at least prevent future problems with more autism.
And this is kind of nice: The first child who was cured of HIV after a round of anti-virals. Maybe it's a basis for a new round of talks about attenuation. And what was going on in his life for those 6 months outside of doctor's care?
I notice no talk of "must have been a misdiagnosis" bullshit.
It's not easy to maintain, but today I choose hope & faith.
Posted by: jenny | March 04, 2013 at 02:16 PM
The SAD (standard American diet) is bad for everyone. I took a bit of a food 'vacation' this weekend as my parent's celebrated 50 years of marriage. Dinner at a restaurant, brunch at a restaurant the next day and I woke up both nights with heart palpitations and gut pain as my body tried to process and remove what was undoubtedly stuff that wasn't really 'food' (preservatives, GMOs etc.). There was a hint of a plastic/chemical taste in the meals so in the end, it wasn't even really worth it.
My son has been on the GAPS diet for the last 13 months after years of allergen/elimination diets. GAPS has been the best thing for his guts/health and for my family's. We are starting to transition off of GAPS but we will be eating a Nourishing Traditions diet (WAPF) for our lifetime because the food is so much better tasting and better for the body. It's amazing how well the body will work when given the right fuel! Is it a pain in the ass? Yes. I'll take pain in the ass over pain in the gut (or head, or joints) any day.
Posted by: AmyinIdaho | March 04, 2013 at 11:06 AM
We gave up the diet when it stopped working. He plateaued and we stayed there for a while remaining on the diet and then we didn't see the point anymore. So we went back to regular food with the plan that if he slipped back, we would start up the diet again. He hasn't had a problem in the two years or so since we stopped the diet. The problem with the diet, and you touched on these points, is that as they get older, it's harder to control it. A good percentage of our kids gain some independence...even if they don't have as many friends as we would like or they don't get invited to parties, still they grow, mature, and want to have some modicum of control over their own lives. And that's the way it should be! So they're going to eat what they want to eat and it's not going to be sugarless, casein-free/grain-free waffles. And I, for one, say good for them. If they have enough cognition and ability to make a reasonable choice (e.g. I don't like it so I want something different) they should be allowed that control to a certain extent. Every human being deserves that.
Posted by: CureNOW | March 04, 2013 at 10:55 AM
I personally think at the minimum, a diet free of gluten, dairy and food additives, as well as low in sugar and grains, does make sense for anyone with a less-than-optimal health.
I would think for someone 'recovered' (whatever that means), occasional infractions are OK (unless there is celiac disease for example), but eating the above on a daily basis can really slowly sink the boat.
And eating lots of vegetables and anti-oxidant-rich foods. Remember daily home-made vegetable soups, with extra olive oil, as a way to get kids to eat a wider variety and larger amount of vegetables and antioxidants.
Posted by: Karin | March 04, 2013 at 10:20 AM