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I will try to make this to the point but that is not my nature…so here goes: 32 week preemie, no complications, macrocephallic, global developmental delay, 25 mos.- light bulb (thanks to mother who had the guts to not hide anything from me), went out to buy the book suggested: “Let Me Hear Your Voice”, bought 6 others, husband picked up “LMHYV” so I read “Unraveling the Mystery of AUTISM and PDD” by Karyn Seroussi,
2nd Light Bulb flashed, My graduate biochemistry leftover fragments told me that what this book was telling me was: these kids don’t have a “brain” problem but a “biochemical” problem. (period) Day 3 – Newly Diagnosed Meeting (re-affirmation), Day 8 – GF/CF Meeting where parents talked about GF/CF helping, but then soy/rice/corn problem, my suspicious brain said: A.) What does that mean and B.) We need to do an allergy profile sooner vs. later.
Somewhere, somehow very, very early on in this process I just got it in my head healing my son is a doable deal, it is possible, I just have to fit all the pieces of the puzzle together. Plus at this point it seemed like we had a child with a “mild” case. Our son was too sick at this point Only over time I have come to realize this wasn’t just any old puzzle in a nice box with a picture to use on the front. Rather, this was an old shoe box full of pieces of a lifetime of puzzles bought for a quarter at a garage sale from someone who found them in the attic, but felt pretty sure there was a least one complete puzzle inside.
Off to the gastroenterologist who said “you should go on a date because parents of autistic children have a 90 % divorce rate, but your son is fine, unimpressed by the diaper full of acrid, yellow, undigested “did you really bring this disgusting thing with you” poop, and offered the unbelievable, un---reassuring, infuriating opinion his gut was “FINE” (& this was not a self-motivated by quotas HMO guy, this was a recommended (because he freely distributed Nystatin upon request w/o expectation or reservation) not on our list, cash on the barrel head guy. The good news was we seemed to start with the worst. Went to MANY doctors (one friend referred to us as “Doctor sluts”) all of whom seemed frustratingly patient & un-aggressive which left me hungry for answers. Innumerable hours spent joined in communal curiosity, internet searching with zero expertise (I don’t even do e-mail). Every +autism +word of interest, always bringing up gold mines of info (always more than I could possibly implement). Found the EdelsonCenter.com, the concept resonated, but the cost made me question legitimacy, tagged it and moved on typing in +autism +amaranth (to clarify ambiguity & controversy about gluten in amaranth) and up popped “SpecialFoods.com” again it resonated and seemed more reasonable in expenditure. By this time he was GF/CF/Soy-corn-rice FREE & 30 other foods he was sensitive to, but not yet on a rotation and felt lost and crazy like I was just waiting for the other shoe to drop with the food thing. So we signed up to do Special Foods and have been on a modified version of her diet ever since, which we feel is a huge part of our son’s continued improvement. By this time my modes operand was to listen to the parent’s who felt they were healing their children and do what they do and research organizations who claim to be curing these kids, figuring if they made this huge claim at minimum they probably had a piece of the puzzle. So we did the Special Foods program with the diet component at 100% and environmental 90% and felt good about response, but this program also began to lose legitimacy because of the cost involved with increasing requirements to purchase additional environmental products. One of my friends did the program 1000% and the cost was staggering and way beyond initial expectations. 3rd Light Bulb flashed when I was reading a Home Improvement magazine (we were having to remediate for mold) and saw a description of Multiple Chemical Sensitivity and it matched AUTISM (if you happened to be an adult and were already verbal & had social skills). Then I looked back at the Special Foods literature and all of her graphs compared the response of autistic children to her program with food allergy/MCS children. Never explaining that these principles applied to the autistic population. Voracious reading and researching on this possibility, more and more resonating, back to the EdelsonCenter.com, now my suspicions turned into confidence that this Doctor got the whole thing. Signed up. Husband went for 1 week of tests and later 1st 5 weeks. Immune Drips, Ozone, IV – DMPS, sauna therapy, tons of oral nutrients. Jan 1, 2002 moved to Georgia with family, total of 7 months of therapy including 375 saunas. He improved 32% (before and after ATEC scores). After 3 mos. Leveling of improvement, 6 weeks off, return to program, chelation challenge mercury pre- 258, post-28, but all other metals still high. Moved home happy with our decision to go to the Edelson Center but apprehensive about suggesting it to other parents because of the extraordinary expense, and the belief that with a good guiding ACAM physician and a sauna you can accomplish a lot, especially if you have a sound knowledge base and a place to do IV’s.
It has been a real journey for our family, but a very fulfilling one. We feel as confident as ever our son will make it all the way home, which he hasn’t yet.
I am going to skip here to our current protocol: 7 day rotation of basically specific carb diet (but after 1 year & 7 months he can handle “deviations”), he lives in a basically VOC free home, is outside as much as possible, we muscle test his supplements whenever possible, & we try to have his IV nutrients muscle tested & give him what he wants (including everything in a typical immune drip) & DMPS or EDTA, We do Alpha-stim up to 80 minutes a day, especially before & after chelation, ABA 30 hrs/wk but will fight for 40 at upcoming IEP, cranial-sacral treatment when his cradle cap flares up, Energy Healing…I am probably forgetting something!
So here it will get a little repetitive because I started over in a different file & haven’t edited it.
This will be narrative style because I’m not clear how to do it any other way. Here goes…I was that over-achiever, people-pleaser who learned from my (left when I was 9) daddy (who I love very dearly now) that you can do ANYTHING!!! And this wasn’t a spiritual thing, because that does not seem to describe my dad (but who am I to climb in his brain & judge). This was the awestruck witnessing of him underneath his ElCamino (with naked lady mud flaps – mortifying to ride in) yanking out the rusted chunks followed by screwing in a piece of scrap metal under the carpet…Jaw dropping experience for me! What was that???? And what would make him think he could do that?…followed by the resounding feeling that I could do anything! In addition to this my mother was always someone who felt she could do it herself, especially when her saved up grocery money (only spending money she ever had without a fight) couldn’t buy it as cheaply as she could make it (e.g. Perfectly re-upholstering the couch & chair with a borrowed sewing machine & clearance fabric)
These were just the more memorable examples…my life was full of parents who by example told me I COULD DO ANYTHING!!! I don’t think they really intended to do this, or avoid this, but that is how it played out…
…Skip to:
December 9, 2001: Youngest Daughter is born (3 yr old sister, 2 yr old brother)
December 25, 2001: Oldest daughter breaks her arm (Christmas Day)
December 31, 2001: We are told to evacuate our (2 yr old) home due to MOLD
To this day we are in a lawsuit & still not able to live there.
January 21, 2001: Our son is diagnosed as autistic
I buy 6 books on Autism & begin my voracious search for answers
January 23, 2001: Go GF/CF (cold turkey) & eye contact returns…Wow!
January 25, 2001: Stop GF/CF for fear we would not get diagnosis because at this point my son was so sick he didn’t stim, but mostly sat perseverating-drooling
Gave my husband 1 week to get diagnosis to return to GF/CF
January 28, 2001: Attend Newly Diagnosed Meeting (Amazing way to start)
January 31, 2001: Attend GF/CF Meeting that raises confidence in my ability to step in and help my son but questions of limitations of GF/CF and complete awe & unadulterated envy for the moms who seem like they started with a PhD in Biochem
February on: Every lead on a doctor we could find, culminating in my frustration, moving rental house to rental house, Mastitis, Ear tubes, etc. This was all accompanied, now that I think back amazingly enough, by the confidence that we could heal our son…another WOW!
March or April: I presented at the GF/CF meeting the hypothesis listed on this website first page and launched my website (this one), but with the only item: The current dictionary in this website now ( I haven’t updated it yet, so it has the same content but I did add formatting & hyperlinks).
I came & presented at 120 miles an hour & had almost a 100% casualty rate (not one mother left empowered by my presentation), but many who felt intimidated, overwhelmed , skeptical, even hostile, but at least a few who benefited in an apprehensive type of way. My distant memories of writing a thesis & taking graduate biochemistry were coming in handy now. From my thesis writing I knew I had to start with a hypothesis. From my bio-chem I was able to recognize stuff when I read about it. I had a foundation that proved invaluable. Basically, I was able to process pre-digested material. In addition to the blessing of my educational background, I had as much help as I needed to do endless research, a loving, available, participatory, somewhat challenging (still apprehensive about the direction – alternative medicine – I have gone) husband, and the financial resources to chase any “piece of the puzzle” presented itself. I was also very blessed to live in the Los Angeles area and meet amazing women doing amazing things (gutsy…wow!), running amazing information-filled meetings, shoulders to cry on, ears to listen …but most importantly of all the willingness to share everything…success & failure. All of these moms wanted you to start where they left off and proceed from there. Even though they knew the world of “The biochemistry of Autism” was changing daily & they knew they had done everything in their power to heal their child & they thought the odds that your newly diagnosed child would get better were better than their “older” child, but they still were there for you, rooting, sharing, caring, sometimes warning, but truly hoping for the best.
My game plan, subconsciously at first, was to listen to the mom’s, doctor’s, organizations that claimed to be healing/curing kids. I realized that perhaps they didn’t have the entire solution to my puzzle, but with such lofty claims, probably at minimum owned a few pieces. This is what I found to be true. My hypothesis was formed from:
The close to 20 hours I spent on the phone with Karen @ SpecialFoods, referring back to her documentation and realizing all of her graphs of improvement were comparing “Autistic Children” to “Kids with food allergies/MCS” with no further mention/explanation of what MCS is. But I didn’t get it yet so I looked for weeks on the internet to try to figure out what/if/how she was accomplishing what (if anything)with these kids. I got the basic concept: remove all allergens (food & other)/irritants/toxins & they begin to heal naturally. I focused on VOC’s & xenobiotics, and all the properties of diet that have a positive impact (zone, good vs. bad fats, phenol level, Ph level, huge variety providing essential phytochemicals), innumerable other internet sightings, and the AMAZING support during my hypothesis forming phase of the most dedicated/aggressive/intelligent/outside-the-box thinking/been there done that-added it to the pie/mother of Maria, and all the other moms who answered the phone when I called with my endless brain-storming rambling (you know who you are). But I was not yet armed with the “label” of Multiple Chemical Sensitivity so my research was still limited to the Internet: Yahoo +autism +any word of interest. Then I was reading a Home Improvement Magazine (we were remediating for mold) & I “happened” upon an article on Multiple Chemical Sensitivity (MCS) – LIGHT BULB!!!!!!! Oh my gosh…where is all that Special Foods stuff: there it is, search, AHA…MCS is MCS is Multiple Chemical Sensitivity…Voracious searching trying to link MCS & Autism, but not much out there, but The Edelson Center popped up again. Very early in my search I had found the Edelson Center but was quite skeptical. Here was a doctor who basically was saying if you give me a ton of money, I/you will work really hard on your kid & he/she will improve substantially. Intrigued, but not yet trusting. Anyone could say they will take your money & claim to “cure” your kid, so why should this be the truth. I marked it as a favorite & moved on. But now I had DIRECTION…If what Karen (SpecialFoods) had claimed was true, than these kids could benefit from everything that applied to MCS. Then I came to realize some believed MCS, Fibromyalgia, Chronic Fatigue Syndrome, Gulf War Syndrome, and for that matter all Auto-Immune Disorders were actually more accurately described as Multiple Chemical Sensitivity. What helped one helped all…(helped Autism!!!!!!!!! My part of the conclusion) The difference I felt these autistic kids had (mostly listening to Karen @ SpecialFoods) was that …and this is HUGE…these kids are addicted to the opiode effect of the allergenistic response to food culminating in the release of partial peptides (of any food – especially a predominately polysccharide-dense food with a protein component) This made the 7 day rotation of hypo-allergenic foods an essential foundational piece to calming the immune system. It also made sense out of the stories about GF/CF & soy/corn/rice, with allergy/sensitivity constantly mirroring habitual intake. The other foundational piece was a VOC Free environment. The foundational pieces she does not utilize, and I think accounts for her “non-success” stories are detox supported with appropriate, non-allergen creating supplementation (muscle tested prior to delivery & avoiding the gut whenever possible) including homeopathics (Thank you Melanie & Dr A) & chelators.
What I felt like I had discovered was there were people out there who were “in the same book” but different chapters. Being in the book at all made them feel they were complete, but didn’t realize had only one chapter. As a result some kids would benefit tremendously, but not usually complete recovery. Bringing them together, was much closer to the whole puzzle, but not quite. There were still chapters: Energy Medicine (Brain Protocols), Alpha-Stim, Electro-stimulated chelation, Muscle Testing of all substances before introduction, Neurofeedback and many more I am sure I haven’t found but are out there, and many more yet to be discovered. But I believe enough of the book is available to recover these kids!!!
February 28, 2004