|Dec 22, 2008|
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Autism-long but good read :)I COPIED THIS FROM CAFEMOM--THERE'S A LOT IN HERE ABOUT DIET. IF YOU DON'T READ ALL OF IT, MANY OF YOU MIGHT WANT TO READ THE PARAGRAPH THAT STARTS "The doctor we are working....."
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. My heart sank when I noticed that he could no longer even wave "bye-bye" to his grandma and looked at me with a 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 there and 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. 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 small child! 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. 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, 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. As my friend, Liza later said, "He did not seem comfortable in his own skin". 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-breads, chicken nuggets, egg custard, pancakes made with ground chicken, etc.-and I had to use flours like tapioca, potato, corn, and garbanzo bean. 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 questioning 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 therapist and tested in the low-normal range at 85 for verbal ability! Now that he is able to express himself, Matthew continues to surprise us every day with what he knows and thinks about. Gradually, as his fluency increased, he let go of his inclination to talk rapidly in jibberish and his hyperactive behaviors disappeared. It has been remarkable and we are so thankful to God for his healing and grace and for the prayers and support of our family, friends and therapists for all of us.
About seven months ago I found that Matthew was able to tolerate eating rice without much reaction, so now we can buy a lot of his foods from places like Whole Foods. This has been very liberating! However, a new sensitivity developed this past summer to one of his former staples-cashews/cashew butter. We all noticed that Matthew was not progressing at the rate he had been and was even regressing in some of his behaviors. Knowing that nuts can be difficult to digest and that Matthew appeared to be craving cashews more than usual, I decided to see what would happen if we eliminated them from his diet and within two days he was back to his new normal self, making good progress again. A month later blood tests confirmed that not only was Matthew now off the charts for "delayed sensitivity" to cashews (I guess we had overdone them in our search for viable proteins!), but he had also developed a "true" allergy and his regular pediatrician recommended that we have a epinephrine shot pen on hand in case of possible anaphylactic shock!
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 Mary Megson, MD and Michael Payne (Nutritionist) in Richmond, VA. Dr. Megson is a D.A.N.--Defeat Autism Now--doctor which is a consortium of about 900 doctors across the nation. You can find one near you at http://www.autism.com/. (Matthew has only seen them twice but we have had many phone consults.) Although Dr. Megson also recommended some mild chelating agents to "pull" heavy metals out of his body, we chose not to use them due to possible risks involved. Though it is reported that children can experience significant benefit from these agents, we believe there are also risks (i.e. redistributing heavy metals) if chelation is not done very carefully and tailored to the unique needs of each child. Obviously, these are very difficult decisions for parents to consider and we decided to err on the side of caution, especially since Matthew was overall progressing well without it.
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 the last couple of years, I think for us the special diet in particular 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-possibly 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 try 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 are working 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. It was certainly a mistake to add the flu shot onto an already full complement of vaccines. Additionally, she thinks the mercury in the vaccines has (among other things) 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. This might be compared in some ways to a child who has central nervous system problems due to Celiac disease. Of course, I know that every child is different and what worked for Matthew may not work for others. However, there is increasing evidence that these dietary and biomedical interventions can significantly help a substantial number (up to 80 or 90%) of individuals affected by autism. And the earlier you start (as with traditional interventions), the more impact they can have. There is increasing evidence of the plasticity of the developing brain and the ability of genes to be turned on or off by environmental triggers.
We still have our challenging moments (but they are nothing compared to what they used to be). We are just so thankful to have our son back in so many 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 good 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 recent dramatic increase in language. This past August, 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 loves to play with his older brother and he is now enjoying being on a soccer team as well. 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 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 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 first 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!
(Copyright pending, 2008)
**Many people who have read this story tell me that they have never heard of a child "recovering" from autism or losing their diagnosis. In actuality there are literally thousands of other parents who are experiencing similar results with dietary and biomedical treatments used in combination with traditional speech and occupational therapies. If interested, you can read about these stories at www.autism.com. Christina Adams has written her account in "A Real Boy" and Jenny McCarthy has written hers in "Louder Then Words" which came out last year. McCarthy's new book "Mother Warriors: A Nation of Parents Healing Autism Against all Odds" just came out in September, 2008.
For alternative vaccine schedules that may be safer for your child (part of the problem for Matthew was not just the flu shot, but receiving 4 vaccines for 6 diseases at one time) check out the alternative vaccine schedules at www.generationrescue.com. (And never let your child get a vaccine while they are sick--every good pediatrician should tell you this. You can always make an extra visit!)
For more about the possible links between vaccines and autism check out this website: http://vaccines-rvb.blogspot.com/2008/09/correlation-that-does-indicate_14.html
David Kirby has researched and written exensively on this topic: Just google: David Kirby, Vaccines, Autism