By Rachel Ford, Ed.S.
Our son Matthew was born a healthy full term baby on August 30, 2002. He was a delightful baby and toddler, hitting all of his developmental milestones right on schedule and charming everyone with his contagious smile and sweet personality. Among other things, he smiled at four weeks, laughed at 3 months, and loved social games like patty-cake and peek-a-boo. He was a very sweet, social, and alert baby and toddler.
When Matthew was a year old, he was not particularly happy about me going back to work full-time in August of 2003 (after having been off for the summer--I am a psychologist at a university), but he seemed to adjust well to his new babysitter and really enjoyed playing with her daughter who was born just one day before him. On December 4th of that year, Matthew was due for his 15-month vaccinations, and the doctor strongly recommended that he get a flu shot that day as well, which he did.
I had concern about adding the flu shot onto the other three vaccines (one of which was a 3-in-1) he was scheduled to have that day but the doctor assured me that it would be fine. Within days of receiving these vaccines, however, Matthew started to have noticeable problems. He still had his good moments, but he rapidly became more and more lethargic and unhappy, sleeping excessively during the day. Over the next few weeks he also lost interest in playing with his babysitter's daughter (which he had previously so enjoyed) or his toys.
My husband and I couldn't make sense out of these changes. Not making any connection to the vaccines at the time, the only thing I could come up with was that Matthew might be having a delayed reaction to my returning to work full-time. Basically, our normally happy, curious, and outgoing child suddenly started to seem depressed and unengaged a good bit of the time. By Christmas, Matthew did not show much, if any, interest in the festivities or the presents and his normal curiosity was significantly subdued.
Over the next three months, my husband Eric and I along with our families grew increasingly alarmed as we watched Matthew plateau and even regress in his development, gradually losing the words he had learned as well as his pointing and gestures. Like Jon Poling described his daughter Hannah’s regression, it was like someone turned a dimmer switch on his functioning and personality. My heart sank when I noticed that he could no longer even wave "bye-bye" to his grandma and looked at me with an odd quizzical stare when I asked him to do so. Matthew continued to be unengaged, unhappy and/or lethargic much of the time, but now it was interspersed with periods of energetic nonsensical repetitious activity. It got to the point where he had almost no attention span for anything except for certain music-themed videos.
I discussed my concerns about his language and lack of attention span with his pediatrician at his 18-month check-up. He said that boys are frequently late talkers and that is was early to be worrying, but at my request he gave me a referral to a speech therapist. In early April of 04, we had Matthew evaluated by this therapist who ended her session by saying that she did not have the "expertise" to work with him and, with a worried look on her face, referred us to the Wake County Developmental Evaluation Center, encouraging us to have Matthew seen as soon as possible.
In May of '04, Matthew had his first evaluation; he was found to be severely delayed in receptive and expressive language and he was thought to have very significant "sensory integration" and attention problems that were likely interfering with his language development. At almost 21 months, they said Matthew's receptive language tested as that of a 6-month-old. It was hard to hold back the tears as I wondered what had happened to our previously social, curious and talking little boy. The evaluators recommended speech and occupational therapy (to address his sensory issues) but they couldn't say at that point what his actual diagnosis or prognosis would be because he was so young. They recommended that we return in a year for a second evaluation at which time they could provide a more definitive assessment.
At this point Matthew was starting to "slip away" from us into his own world; he developed stereotypic arm movements and vocalizations, and he stopped responding to his name. His eye contact diminished. He wasn't interested in his old toys, and new ones seemed to make him oddly anxious. Instead of calmly looking at books like he used to, he would tear through them in a manic fashion and bend them at the binding until they broke apart. Fortunately, I was able to leave my job for the summer by requesting that my university position be permanently changed from 12-months to 9-months. I worked and played one-on-one with Matthew as much as I could everyday, often utilizing psychiatrist Stanley Greenspan's "Floortime" techniques to engage him with me. I remember feeling happy if he would imitate my motions with a toy for even a few seconds at a time. Matthew seemed to enjoy this time I spent with him and his mood improved considerably, but as every week passed it continued to be apparent that something was very wrong.
Ever since Matthew's problems started, I lay awake many nights trying to figure out what could have happened to him-did he have an injury I didn't know about, did his babysitter hurt him and she somehow hid it from me? Then one day in July of 2004, I was walking though Whole Foods market and I saw the cover article for Mothering Magazine entitled, "Keep the Mercury out of Your Flu Shot.” I couldn't believe it because I thought the mercury was out of all the vaccines recommended for children, just like I had been told by the nurses at our pediatrician's office before Matthew had gotten any of his shots. I rushed home and checked Matthew's vaccine record and came to the chilling realization that all of his symptoms had begun within days of him receiving the flu shot which he received along with 3 other vaccines (for 5 diseases) at his 15-month "well baby" visit.
Now when we look back at the many videos we took before and after this event, there is an obvious difference in Matthew's overall demeanor and behavior beginning immediately after this set of vaccines. I guess we didn't make the connection at the time because it was a gradual but striking regression that occurred over about a three-month period. I did some research (and checked his vaccine lot numbers) and was upset to learn that not only the flu shot he received that day, but also the DTaP shot contained mercury in the preservative thimerosal (which is 50% mercury by weight). Apparently, these vaccines are stored in 10-dose vials and if not shaken properly, one child can receive an alarming amount of mercury (although any amount of mercury seems alarming to me), especially considering their small size and the fragility of their developing brains. Matthew's vaccinations were in 2003, but even as late as May of 2005, I found out that our--now former--pediatrician's office was still using thimerosal-preserved shots for ALL of their DTaP vaccinations and flu shots!
As soon as I could after reading this Mothering article, I had Matthew's blood tested. It came back positive for the presence of mercury and he had never consumed even a taste of fish, nor did I eat fish at all while pregnant! This was now eight months after his shots. The day we got the results, Matthew's pediatrician even admitted that there was mercury in the flu shot, but that the CDC had informed them that it was "only the amount one would find in a piece of fish.” My immediate thought was what type of fish, and do they account for injecting it directing into the bloodstream of a toddler! We ruled out household contamination by having myself and Andrew tested as well, which revealed no detectable level of mercury. Although Matthew's blood mercury level was not high at this point in time (mercury is known to "hide" in tissues of the body), other tests revealed that his system was struggling to recuperate from a major toxic insult, presumably the mercury. In particular, his glutathione (a primary antioxidant) level was quite low. Because of this, he was rendered especially vulnerable to other toxins in his environment and hair analysis showed that he was high for arsenic, as a result we think from playing on our (unbeknownst-to-us-arsenic-laden) deck, and high for other substances like antimony, found in flame-retardant mattresses and plastics. Needless to say, we discontinued Matthew's playtime on the deck and we special-ordered an all-cotton organic mattress, as well as switching to all-natural household cleaners, wax paper instead of plastic, and aluminum-free cookware, etc. I learned that there's a lot of potentially "neurotoxic" stuff in our everyday environment that all of us would probably be better off without!
In researching Matthew's symptoms around this time--he was now 23 months--it was gradually becoming clear to Eric and me that the closest diagnosis was autism even though this had not formally been ascribed to him yet (he would formally receive this diagnosis six months later). By admitting to ourselves that Matthew might have autism, we were able to find that there was an amazing amount of helpful information on the Internet and more recently in published books and that some children were even recovering completely.
Several of the studies I read showed that many of these children respond well to a diet free of gluten, found in wheat, rye, barley, and oats, and casein--found in all dairy products. Unfortunately, since Matthew was an extremely picky eater, wheat and dairy products like milk, pizza, chicken nuggets, and macaroni and cheese were literally the only foods he would eat. Such a diet seemed like it would be impossible, but when urine (peptide) and blood tests revealed that Matthew was sensitive to these foods, we decided to give it a try. Actually, we first gave him enzymes designed to help break down these foods, and the effect on Mathew was remarkable. Less than 24 hours after taking the enzymes, Matthew clearly said his first precious words (since his regression at 15 mos.) to request things he wanted! However, we noticed that the enzymes themselves made Matthew even more hyperactive than usual—almost manic--so we decided to just go ahead and begin the diet.
Before starting this diet in December of 04, Matthew had become frequently self-stimulatory and quite difficult to engage-he would engage in repetitious and odd behavior, vocalize excessively with babbling or jargon, and sometimes just run around in circles. At times Matthew would appear to be in a trance during these activities and it was very difficult to interrupt or redirect him. When we took all dairy products and some wheat out of his diet, Matthew calmed down quite noticeably and started tuning into the world around him. He literally stopped running around in circles and he could focus! In addition to prompted words, he started saying some spontaneous words and demonstrating a much greater understanding of language-we were amazed. Then we gradually took away all wheat and gluten products (this was hard!!) and he improved even more. Eventually, we realized that he was also very sensitive to soy and rice as well. This meant that for over a year I had to bake/cook almost all of his foods completely from scratch. Getting these recipes mastered and accepted by a picky eater like Matthew was challenging and time-consuming but the changes in his behavior, ability, and awareness were so dramatic that it was worth it.
In March of 2005, after we had just started the dairy and gluten part of the special diet, Matthew was deemed by a team of experts (his second visit to the Wake County Developmental Evaluation Center) to have autism and a nonverbal IQ of 50. When the evaluators gave us this news, they repeated what we had heard before--that autism "is a lifelong disorder and there is no cure.” We told them about some of the striking changes we were just starting to see at home with Matthew's special diet (admittedly not very evident in the testing situation) but they discouraged us from getting our hopes up. Although their words were disheartening, I was more determined than ever to continue with the diet and biomedical interventions that were undeniably having an effect on our son.
Matthew was evaluated again in August of that year at the well-known Center for Development and Learning at UNC-Chapel Hill and his tests results placed him at an IQ of 68 (an increase of 18 points in 5 months of implementing and improving his special diet!) and one of the UNC evaluators was already beginning to question his diagnosis of autism, noting some of Matthew's improved eye contact and social interactions. Eight months later in May of 06, Matthew was evaluated yet again-this time by his speech therapis,t and tested in the low-normal range at 85 for verbal ability! Gradually, as his fluency increased, Matthew let go of his inclination to talk rapidly in gibberish and his hyperactive behaviors disappeared. In addition to a special diet, we have been giving Matthew a careful regimen of vitamins and minerals, designed to help him naturally "detoxify" his body of metals and other toxins, calcium, purified pharmaceutical grade fish oil, and probiotics. We have been doing this under the guidance of a DAN doctor in Richmond, VA.
Matthew has also participated in a significant amount of early intervention, including "applied verbal behavior" (typically a natural-setting positive reinforcement program that avoids the somewhat coercive feel of formal ABA behavioral therapy), "RDI" (Relationship Development Intervention), speech, and occupational therapy (for sensory integration and fine motor), tutoring, and as much one-on-one time as we could manage. After observing them, many of the therapies or techniques can be replicated at home during structured play and in spontaneous moments throughout the day. Matthew is now in a "typical" classroom and is well liked by his classmates--one of the other mothers recently informed me that her daughter can't wait to have a play date with him. One of Matthew's strengths has been his ability to imitate, so getting him into increasingly inclusive environments as soon as he was able to participate in them was very important for his language and social development.
To sum up our story, I think for us the special diet along with supplements was/is like taking away the proverbial tack that Matthew was sitting on so that he could begin to attend, learn and act appropriately with his peers. I believe it enabled him to get the most out of his preschools and the other therapies we have been doing both in and outside of the home--playing the central role in changing the trajectory of his development. I would never have believed that dietary changes (eliminating "highly reactive" foods as well as gluten and casein) could have such a profound effect if I had not witnessed it myself as well as a return of symptoms when we have accidentally or purposely had infractions. I also think the zinc, magnesium, vitamin C (which boosts glutathione), and other supplements we have been giving him daily since he was 21 months have helped to detoxify his body and nervous system, while at the same time we have tried to reduce any new toxic exposure in his environment as much as possible. The right probiotics have also been a big part of Matthew's intestinal healing.
The doctor we worked with in Richmond thinks the high, but not unusual, number of vaccinations (6) given at one time when Matthew was 15 months old adversely affected his immune system. She feels it was definitely a mistake to add the flu shot onto an already full complement of vaccines. Additionally, she thinks the mercury in the vaccines caused damage to Mathew's intestinal tract causing him to have a "leaky gut" which might explain why he has been so reactive to many foods. When the gut wall is not fully intact, microscopic undigested proteins can travel through the bloodstream, blocking pathways in the central nervous system and to the brain, affecting behavior and learning. Of course, I know that every child is different and what worked for Matthew may not work for others. Evidence supports that the earlier you start (as with traditional interventions), the more impact they can have. There is increasing scientific evidence of the plasticity of the developing brain and the ability of genes to be turned on or off by environmental triggers. In essence, it appears that the brain can be "rewired" with proper interventions and lack of interference (as may occur with food reactivity or continued exposure to toxins).
We are so thankful to God for his grace and for all of the pioneers in biomedical treatments who have gone before us. We now have our son back in all the ways that were elusive in the past, and he is delightful! The thrill of hearing him say, "I love you, Mommy" after such a long silence is indescribable. Matthew seems so much happier now than he did two and a half years ago. Gone are the tantrums that occurred when he wanted something or was upset but had no means of telling us what was going on for him. And it is so wonderful to have conversations with him and to see the special bond that is developing between Andrew (age 7) and Matthew. The boys are great friends and play well together most of the time--they have the normal sibling rivalry too! It has been challenging at times for Andrew to make sense of all of the rapid changes in his brother, especially Matthew's dramatic increase in language between age 31/2 -41/2. This past August (‘06), the boys bounded into the house after a day of playing together at their grandparents' house and Andrew eagerly informed me, "Mom, Matthew's been tricking you! He's not autistic. He can talk...and do everything!"
Update (September, 2007):
Matthew has continued to make outstanding progress. We just had our first teacher conference of the new school year where Matthew, who just turned 5, is attending a "transition" pre-Kindergarten class with same-age "neurotypical" peers. His teacher informed us that he is at the "top of the class"-he is one of the first to finish his work and he is demonstrating strong beginning reading skills. He is very friendly and well liked by his peers-he also has three "best buddies.” When I explained Matthew's history with autism and developmental delay, his teacher couldn't believe either diagnosis could have ever applied! Matthew no longer receives any special services.
Recent blood tests revealed that all of his previous food sensitivities (26!) are now essentially non-existent and his previously low nutrients such as calcium, iron, and zinc are now normal! It's like the special diet and supplements have allowed his gut to heal. We have recently reintroduced gluten with no discernable adverse effect. We are pretty much holding off on dairy/casein (just to be on the safe side) but so far, minor infractions there seem to be inconsequential. Matthew and Drew are now best friends and they both love all kinds of sports. Matthew is especially enjoying playing on a soccer team. Of course, his parents and grandparents couldn't be happier.
Update (August, 2008):
Matthew just had his first day of regular public school Kindergarten. He is almost six now. He appears to be fully recovered! He can eat whatever he wants, but we still try to give enzymes with milk products to be on the safe side. Today on his first day he rode on the bus with his friends and asked by himself for help in finding his classroom. His teacher said he had a great day! Matthew has lots of friends and even had several sleepovers this summer. He has also become a great soccer player, one of the ones who can really drive it down the field and make goals-it's exciting to see his joy and pride about this-he is no longer on the sidelines! Three weeks into K-garten: still doing great--teacher says he is "doing a fantastic job of listening, following directions, and making friends.” What more could I ask for.
Regina, where are you? Does your son have an egg allergy? Go to our sponsor Generation Rescue and search for a Rescue Angel in your area. And go to our sponsor TACA and call their hotline.
Email me off the blog if you'd like:
KimStagliano@gmail.com
KIM
Posted by: Stagmom for Regina | April 02, 2009 at 10:42 AM
I have a problem and don't know where to turn. My son is 20 years old, very thin,
developmentally delayed and was given 2 flu shots in 2 weeks. Ever since he breaks out
on his chest, arms and back, it's red and itchies like crazy. If he gets in the shower or puts ice on himself it goes away,
his doctor said it's not due to the flu shots but I know it is, who do I go to in
order to find out for sure, any advice greatly appreciated.
Posted by: Regina | April 02, 2009 at 10:37 AM
Meredith,
I know it can be a difficult decision, but I personally, along with my husband, have decided not to let our two boys, especially Matthew, have any more flu shots--or any more shots for that matter. (We have religious exemptions for both boys.) The risks seem to outweigh the benefits for our sons.
That said, I was nervous this past week when my older son came down with the flu. But we gave him a lot of TLC and boosted his immune system with Vit. C, D, and Zinc and after four days he was fine. If God forbid, he developed an infection we (as most Americans) live close to good doctors and hospitals so I believe the risk of serious complications is quite rare. (I have read that it is a fallacy that 36,000 people in the US "die from the flu" every year. I believe the true number is closer to 2,000--see Dr. Mercola's website for the information about this.) I guess when it comes to vaccines it all comes down to risk/benefit and everyone has to do their own research. The VAERS database (though limited because vaccine reactions are greatly under-reported) is a good place to start as well as the website www.vaccinationnews.com.
Good luck with your decision-making!
By the way, the most recent good news about Matthew was that on December 19th of last year, Matthew's autism diagnosis was officially removed by school officials at his final IEP meeting. Even the principal, who attended the meeting, was asking me questions about the GF/CF diet, etcetera.
On the "Summary of Evaluations" Form that went into Matthew's record in the county school system, it read under Social/Developmental History: "No major health or medical problems reported. After receiving toddler vaccines, he demonstrated regressions. After a strict diet and interventions, he improved dramatically. He no longer is on the diet and does not currently display signs of autism or developmental delay." (This was their summary under that category--not mine--I was pleasantly surprised at the "inclusive" wording.)
Posted by: Rachel Ford | March 24, 2009 at 08:48 PM
Meredith,
My kids won't get a flu shot ever. I vote for the religious exemption or just don't send her to preschool.
She's 23 months, and a little slow to talk?
And with your history of a *reaction* to a flu shot?
You might be able to get a medical exemption if you work with the right doctor.
Good luck. I hope you come back and let us know what you decide.
Posted by: Terri Lewis | March 16, 2009 at 01:25 PM
Rachel,
Thanks for posting Matthew's story.
I have been doing a lot of research on flu vaccine side effects, and vaccines in general as I live in NJ, a pharma-loving state and they are now FORCING parents to give flu vaccines to preschoolers. No vaccine=no preschool.
I used to believe in flu shots, until the last time I got one. Two days after I got the shot, I became very achy which I dismissed as a mild side effect, but then it continued to worsen and I developed arthritis that lasted about 1 year. I am now pretty much back to normal, but I'm pretty certain it was the vaccine that started the arthritis.
I let the pediatricians give many of these newer vaccines, Prevnar, Rotateq and so on to my now 23 month old daughter, (who seems ok, but isn't talking much yet--compared to her 11-year-old sister at that age). I just cannot get over how many shots these kids get now (many causing high fevers); it makes me wonder how many my kids' kids will get? How can the body possibly tolerate all those? I am a product of the over antibiotic use era of the 70s. I have serious digestive, sinus and yeast problems due to candida overgrowth caused by way too many antibiotics as a young kid. I believe you can get too much of a good thing, such as antibiotics, vaccines, etc.
I don't know whether to try to get a religious exemption, not send her to preschool at all or let them vaccinate my young daughter with these yearly flu shots until she's at least five (they will probably begin mandating to 18 shortly) which aren't always a good match anyway. I know you can get mercury free, but then they can have aluminum, formaldehyde or other preservatives and God knows what else.
Pediatricians swear by these vaccines! they tell you "I vaccinate my own kids with the (poisonous) abcdefghijklm vaccines, so you should too". Or "don't call me when your kid is in intensive care from the xyz virus", What's a mom to think!
Posted by: meredith Quinn | March 16, 2009 at 12:45 PM
Yesterday I got the results of recent testing at Matthew's school in order to figure out what to do with his expired and now (thankfully!) completely irrelevant IEP. The school psychologist did a full battery of tests for IQ, autism, and learning disabilities. She observed him on the playground, in the classroom, and on four different test days. She saw no sign of autism whatsoever and said he actually has "very good social skills". She said when she watched him on the playground he was a leader (playing "quarterback" in football) with his friends, but also took turns readily and sometimes complimented his friends when they made good plays!
As far as IQ, on most scales he was between 108 and 110. The exception was the subset that tested for knowledge which was around 89. To me this is not surprising because he lost about 2 plus years of experience/knowledge-gathering while he was in, or still coming out of, his vaccine-induced fog. Since he has "improved so drastically" (her words) from his initial IQ at 2 yrs, 7 months (it was 50 then!), she said we probably won't know his true IQ until he is about age 8.
Posted by: Rachel Ford | December 05, 2008 at 12:48 PM
Makes complete sense, eh? Decreasing the mercury increases the IQ (plus overall health!)...it's such a simple concept yet so many like Offit will continue to tell you that it must just be a conikydink. Because clearly, our kids must have had leaky guts and lost all their language BEFORE their shots and we just didn't notice. Of course, not putting any mercury in our helpless babies makes the MOST sense, right Dr. Offit? Oh, maybe he's the wrong person to ask.
Amazing story and even more amazing parents. Kudos to you all!!!
Posted by: Julie Swenson | November 15, 2008 at 10:23 PM
Wow! It's a small world in cyberspace. Terri, thanks so much for commenting.
Terri was Matthew's OT through the county and worked with Matthew when he had just turned three (almost completely non-verbal, "stimmy" at times, very weak fine-motors skills, and still not potty-trained) when he was in a cross-categorical special ed. classroom. She saw him progress during that year to the point where he left the class before the year's end for a more inclusive environment. By the time she started working with him again 5 1/2 months later at his 4-year old church preschool class, she couldn't believe the change in him. She said "He is a different child!". Of course, he's also come a long way since then. It so wonderful to have professional witnesses to the changes in Matthew when some people (even some family members!) dare to say that he just "grew out of it".
Terri, Thanks so much for your fine work with Matthew (you wouldn't believe his penmanship now!) and for your kind words and support. The children with autism and related disorders you work with are so blessed to have you!
Posted by: Rachel Ford | November 15, 2008 at 05:37 PM
Rachel,
I just happened to find Matthew's story this morning as I was googling flu symptoms. Even though you had previously shared Matthew's story with me at the Kirk, reading the updates and seeing the picture of Matthew playing soccer made me smile and brought tears to my eyes. I had heard from Vicki that things were going really well. I am so happy for Matthew and your family. I have worked with several students since Matthew that have reminded me of him. I always think, "Maybe he/she will be another Matthew". I wish all kids were as lucky and had such dedicated parents as you. I look forward to future updates.
Terri Bailey
Posted by: Terri Bailey | November 12, 2008 at 04:50 PM
Just wanted to share some information from an online friend of mine who recently posted this information. I've told her about the DAN protocol but does anyone have more info. to add:
MY SON RECIEVE A FLU SHOT AT THE AGE OF ONE. AT ABOUT 15 MONTHS HE STARTED TO LOSE WORDS AND BY 18 MONTHS ALL WORDS WHERE LOST. AT 21 MONTHS HE HAD A MRI DONE THAT SHOWED THAT THE WHITE AND GRAY MATTER IN HIS BRAIN WAS DECREASING ON THE LEFT SIDE. IT DID EVENTUALLY STOP, BUT THE NEURO STILL DON'T HAVE A CLUE AS TO WHAT CAUSED IT AND IN THE MIST OF HIS BRAIN DECREASING HE NOW SUFFERS FROM SEIZURES AND THERE HARD TO CONTROL WITH MEDICINE. HE'S BEEN TO SEE GENETICS, WHITE MATTER CLINIC AND NO ONE HAS A CLUE, BUT IF YOU ASK ME I THINK IT WAS THE FLU SHOT. MY SON WAS NORMAL SPEAKING AT 8 MONTHS AND WAS SAYING ABOUT 6-8 WORDS INCLUDING HAMBUGER. IF ANYONE HAD THIS EXPERIENCE OR KNOW OF A GOOD DOCTOR THAT CAN HELP I WOULD GREATLY APPRECIATE IT.
Posted by: Rachel Ford | November 06, 2008 at 11:03 PM
This sounds like a wish that could possibly come true--at least I think I could come to NJ or you could certainly use my story (with before and after video clips and pictures) to help make a statement. I do think our experience is a little bit unique in the sense that we did blood tests by Matthew's mainstream pediatrician (at my request of course) for mercury exposure somewhat close in time to the administration of the vaccines and Matthew came out positive (certainly before he ever consumed any fish). In addition we quickly ruled out household and water contamination and Matthew was cared for almost exclusively in our home from birth to two.
So let me know when your community is having this fundraiser and I will try to be there or send a DVD for you to use.
Posted by: Rachel Ford | October 12, 2008 at 10:15 AM
Rachel Ford - and Katie Wright: "I wish autism researchers would study the incredible journeys of the Matthews everywhere."
I join with you, and also have a wish: as a special education teacher (who sees so much in the disability characteristics of my students and many children that correspond to all we are understanding about the array of affect caused by vaccine ingredients), and as a mother of a 16 year old with autism, whom we have been treating for mercury exposure since 1999 when a co-worker handed my husband a small UPI newsclip stating that vaccines had turned up on a list of products containing mercury slipped into a bill by a minor representative in NJ, motivated by environmental concerns, I think...
...my wish is that next spring, when the gung-ho autism advocacy community in my school district and county of residence undertakes annual fundraising for Autism Speaks (being more successful each year)...that somehow, a clear, simple illustration (like this, provided by Rachel) of etiology which many people who are not otherwise as tuned in or skeptical of the vaccine connection may accept...and perhaps along with a targeted statement from Katie, along the lines of her recent endorsement of Autism Speaks' new commitment to funding research which aligns with our point of view....
....I could request that if the fundraisers insist on sticking with Autism Speaks as the beneficiary (and they are pretty stuck)...the funds raised could at least be contingent with application to those ends, of harm caused by environmental factors, including vaccines.
Posted by: Therese Brosnan | October 11, 2008 at 11:02 PM
Allison,
We have a lot in common! Dr. Megson was great and I am very glad we found her but we didn't go along with everything she suggested and I am also very glad about that. Matthew's progress was slow with roller-coaster periods but overall steady. I think (if you can!) slow and steady is a good way to go, while being very consistent with certain interventions like the diet and most supplements (in the right amounts for your child). That said, Matthew responded well to the diet and may not have been as physcically sick as other kids with autism and he was an "over-methylator" so even transdermal glutathione cream made him hyper. One B-12 shot and he was off-the-charts-hyper for a week! I guess the bottom line is that you have to follow your mommy instincts about every intervention like Jenny McCarthy says!
We are not very happy with our former pediatric practice, but a fellow autism mom thinks at least one or two of the docs there may be coming around.
We have now found support and significant interest in Matthew's story at Western Wake Pediatrics. Dr. Michael Smith helped us work with Dr. Megson and Dr. Tabrizi has been very interested in Matthew's story.
Posted by: Rachel Ford | October 11, 2008 at 01:50 PM
Lisa, It's my understanding that many, if not most, DAN! doctors are also treating ADD/ADHD, auditory processing disorders, sensory processing disorder and other learning disabilities. Visual therapy by a functional optometrist might also be helpful for the girl you mentioned. I think many of these disoders overlap and have their beginnings in vaccine injury. Barbara Loe Fisher, director of the Nationa Vaccine Information Center (www.nvic.org), said that her son developed learning disabilities after his DTP shot. You can locate a DAN doctor near you at www.autism.com. Good luck!
Posted by: Rachel Ford | October 11, 2008 at 12:03 AM
LISA --
I'd just like to chime in regarding ADD and ADHD. Our doctor (who I believe is also Rachel's doctor in Richmond) has treated ADHD kids with great success (some have recovered completely). These issues we deal with in autism are the same issues that our neighbors are dealing with with their ADD/ADHD kids, they just don't know it. The first thimerosal (mercury) study done (then conveniently covered up) by the CDC in 1999 found a significant statistical link between not only thimerosal-containing vaccines and autism, but thimerosal-containing vaccines and ADHD and ADD. You can find it on the internet - it is "Phase I" of the Thimerosal Vaccine Safety Datalink Study. When I share my son's story about how he was injured by mercury in his vaccines, I am frequently asked by skeptics "Since all kids are vaccinated, why didn't it affect all of them?" My answer is always "How do you know it didn't affect them all?" When you go past the autism epidemic and consider the sheer numbers of kids in school today with ADD and ADHD, you begin to get an idea of the scope of the damage that thoughtless over-vaccination in the 1990s has done.
Thanks for being a great teacher who cares about kids!!!!
allison
Posted by: Allison | October 10, 2008 at 11:02 PM
Thanks for this great report, Rachel. We are in Wake Co and see Dr. Megson! Your story is so similar to ours in many ways. I am thrilled for you and your family that Matthew has made so full a recovery! Only moms with injured children can know what an unbelievable gift healing and recovery is!! My son is 10, has come a million miles from the horror he lived in when he was two and three, but is still not fully recovered. But "Never Give Up" is our motto, and God's timing and plan is perfect.
I'd love to know who you're pediatrician was , and if you have found anyone in this area (ped or family doctor) who has been open-minded and supportive of your efforts.
Thanks, and God Bless!!
Allison
Posted by: Allison | October 10, 2008 at 10:44 PM
Thanks for all of the kind words and comments. Someone asked about enzymes. The enzymes we currently use are DPP-IV complete from Kirkmans Lab. It seems to limit Matthews reaction (peptides?) when he eats occasinal dairy products. Of course we avoided dairy like the plague when he was younger (very strict gf/cf/sf), but now he seems to be able to handle it. Still I think if we overdo the pizza or have dairy too many meals in a row, he will be a little "off his game". Fortunately, Matthew himself seems to realize this now and will sometimes go along with me when I suggest an alternative food to his favorite pizza.
Ellie, I would love to meet with you and offer any help or support I can.
Katie Wright, Thank you for commenting on my story. Best wishes to you and your son and all of your efforts to educate parents. I've been following your story for the last couple of years.
Posted by: Rachel Ford | October 10, 2008 at 04:09 PM
Wow! Your story is our story in so many ways - I'm overjoyed to read this. I am going to share this with all of my family and friends so that they will have a clearer way to understand what our lives are filled with today. We also live in Wake County - would LOVE to meet you - and our son who is 2 has just been diagnosed this summer, he's on the diet and just now, seeing a DAN doc.
I too believe that his shots at 1 year and 15 months are what sent him into hibernation.
I'm so encouraged by your story and hope that I can share our successes one day, as well.
Cheers!
Posted by: Ellie | October 10, 2008 at 10:22 AM
Managing Editor's Note: Hi, Lori. Many of us use Houston Nutraceutical's brand enzymes in conjunction with the diet. Some use the enzymes in place of the diet. Click into our sponsor OurKidsASD's ad on the right sidebar. You'll find the enzymes there. Best, Kim S.
I'd never heard of enzymes that can help break down casein and gluten. Can you tell me the name of them or anything else about them?
Posted by: Lori Edwards | October 10, 2008 at 06:36 AM
Thank you for sharing your inspirational story about Matthew, Rachel. The thrill of hearing your son say, "I love you Mommy!" must have been so amazing. I so admire your dedication and drive to follow your instincts. Your family worked so hard for that to happen. I wish autism researchers would study the incredible journeys of the Matthews everywhere.
Comgratulations!!! I know in time it will happen for all of our kids.
Posted by: Katie Wright | October 09, 2008 at 06:11 PM