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I wrote this down to remind me later when I look back and wonder if it really did happen. Already it seems strange to think of my child as a non verbal, obsessively anti-social child. She would actually rather go sit in her room with the light off and the door closed in the pitch dark than be with us back then. I am sending it to you in return to everyone who told me their stories when I was first starting out (and beacuse Moria asked me to!). I hope it helps you as much as your stories helped me.
Thanks to everyone on this list. We really could not have made it with out you.
Melanie
MAISIE'S STORY
Maisie Elizabeth was born on July 12, 2001 at 38 weeks gestation following a fairly uneventful pregnancy. The only pregnancy complication was that I had to have my gall bladder removed at about 23 weeks. I received general anesthesia and narcotics, which I was assured, would NOT affect the baby in any way. Maisie reached all of the early developmental milestones at the appropriate ages and received all the available vaccines on the advice of our pediatrician, who encouraged us to do so saying "I gave them to my own children". We felt confident we were giving our child the best
possible health care.
At her 12 month check up, I proudly reported that Maisie was saying
13 words and a few word combinations like "Hi, Dada" and "sit
down!". She had a great sense of humor and loved to be surrounded by
all of us and the extended family. Maisie was given the MMR and
varicella vaccines at this exam. We were warned to expect a slight
fever 2 weeks later due to the shots.
By 13 months I noticed something was wrong. Maisie was not using the
words she had learned very often. Was I imagining it? By 14 months
I asked my husband if he noticed the same thing. He did, so we when
to the pediatrician who assured us that the loss of language was
probably because she was "working on other skills". At Maisie's 15
month check up I again expressed my concern over her loss of
vocabulary and was again reassured. I even asked about the possible
MMR-autism connection and was given a funny look and blown off.
Against my better judgment, Maisie received her 4th shots of both HIB
and DTaP.
Soon it was Christmas. What to get Maisie? We only knew that she
liked things that were round and the color blue. My sister-in-law
got her a play tent "so she could hide". By this point Maisie
preferred to be in her room with the door closed than be with
people. If you sat down and tried to play with her she would get up
and leave. Her language had disappeared entirely. She never tried
to tell us anything. She had no non-verbal gestures and no receptive
language. At 18 months I insisted that the pediatrician, who again
refused to admit there was a problem, give us a referral to the local
birth-three center for an evaluation.
At the evaluation a speech language pathologist, educator and OT/PT
gave her a barrage of tests. I remember watching and realizing the
enormity of Maisie's deficits. Among other things, she was asked to
pick out the spoon from 3 objects and give it to the examiner. She
couldn't. Maisie had no concept of "spoon" let alone the idea
of "give me". She was diagnosed "significantly speech and language
delayed". I cried for a week straight.
Fortunately, my older daughter's pre-school teacher knew what was
going on, recognized the early signs of autism and put me in touch
with another parent who had an older son with autism. This wonderful
woman pointed me in the direction of the ARI and DAN!, and gave me
plenty to read on mercury, MMR and vaccines. My sister, who is a
research immunologist and can actually read those scientific journal
articles, spent several days holed up in the University of Washington
Library reading everything she could find and emailing her peers in
search of answers. And after all this we were convinced: Maisie had
been damaged by her vaccines.
I found a local DAN! Doctor who told me to try GFCF. I went to
another DAN! Doctor in hopes of starting chelation right away, but
was again told to try GFCF first. I hate to cook! Reluctantly I
went to Whole Foods and spent 2 hours in the aisles reading labels.
I found gfcfdiet.com and ordered some food from there. I thought I
would try it for a month, it wouldn't work and we could try something
else easier. The first week I finally sucked it up and went GFCF, we
got results. I paused reading a book of colors to Maisie and she
picked up right where I left off! "Bwoo, gween, yell-yo, wed..." I
was too shocked to move for a minute, then I yelled for my husband
who came running to see Maisie do it again. The next week we were at
the park and Maisie again surprised us by picking up where I left off
counting to 10! And as more words came out every day, we were hooked
and knew GFCF was the way to go.
A couple months later we had our first evaluation for an "official"
diagnosis at Children's Hospital. We had put Maisie on 4 different
waiting lists hoping that there would be a cancellation and we could
get her in sooner than the 6-8 months we were told to expect. It was
exactly one week after Maisie's second birthday when we got the
news: Autism Spectrum Disorder. The doctor would not speculate as
to where she was "on the spectrum" due to her age.
At this point Maisie was saying about 50 words (44 of which she had
learned after we implemented GFCF) but we knew there was still a long
way to go. We started receiving ABA therapy 4 hours a week. I
bought a read the book "Treating Autism" and decided to try vitamin
therapy. I always thought it was odd that our doctor did not
recommend that our daughters take vitamins. No toddler diet could
possibly be considered nutritionally complete! I ordered Super-Nu
Thera (the basic liquid version) and DMG for Kirkman Labs. Within a
few weeks we noticed improved sociability in Maisie. She was
playing, actually playing, with her older sister! She had re-
discovered the joy of chasing the cat around the house; she was
seeking us out for interactions - even banging on the shower door to
get my attention when I was washing my hair. She started being
underfoot in that charming toddler way, just like a neurotypical two
year old! She even lost her stimming behaviors: spinning,
chanting "ya,ya,ya,ya" and repetitive opening and closing cupboard
doors.
In the fall of 2003 we completed a one dose DMSA challenge test that
showed very elevated levels of cadmium, antimony, aluminum and tin.
We decided, with our DAN! doctor to try 4 rounds of DMSA every 8
hours on the 2 week cycle. The first round we noticed no change.
The second round was amazing! My husband went to get Maisie out of
bed on the second day and she looked right at him and said "Good
Morning Dada!". We were thrilled! Every round brought more
wonderful results and we started looking forward to chelating
weekends like kids anticipate Christmas.
About this time I attended the Fall DAN! conference. I was pleased
to see both of our DAN! doctors were there as well. The conference
was encouraging, informative and inspiring. I created a "to do" list
of new things to try with Maisie. The first was to adjust our
vitamin protocol. We switched Maisie to Super-Nu Thera with P5P
without A&D and added Cod Liver Oil. Maisie still took a bottle of
soymilk twice a day so it was easy to slip her supplements in without
too much protesting. We also added a daily dose of vitamin C to her
sippy cups of juice. Again we saw a convincing change in language
and sociability. Even Maisie's ABA therapists (she is up to 7 ½
hours a week of ABA plus the 9 hours a week she has at the Birth-3
center) noticed the improvements. One reported to me that her
colleagues did not believe that Maisie had autism. There were
referring to her jokingly as "the typically developing child
with "autism"".
We entered into a study to try to replicate the great results Jill
James had received with the methyl B12, TMG and folinic protocol we
heard about at the DAN! conference. Unfortunately Maisie did not
tolerate the TMG, she had diarrhea, tantrums and started spinning, a
stim we hadn't seen for months! We had noticed a slight improvement
in focus and expressive language on the days she received the B12
injections, but not enough to justify the trauma of giving her
shots. I crossed this protocol off my idea list and we went back to
chelating. This was during the winter holiday break from the Birth-3
center and when class resumed her teachers were impressed with all
the progress she had made in the 2 weeks that they had not seen her.
One remarked, "We don't know why she is in this class!".
It is now January of 2004. It has been 18 months since Maisie
received those 2 live virus vaccinations. It has been 9 months since
we began following the DAN! protocols. Our daughter has made a
remarkable recovery. We can take her out in public and not be
embarrassed by her wild behavior, she follows directions and has
strong and clearly explained opinions. Tonight she got mad and
yelled at me "NO! WANT CHOC-YAT MILK IN A CUP!" when I poured her
vanilla soy milk accidentally. Maisie does not stim; she loves
people and animals and greets new people and places with enthusiasm.
She has a made great gains in language, she asks and answers "who,
what and where" appropriately, she generalizes new words and skills
as well or better than a typical child would, she understands and
uses mine & yours, and identifies people as being man, woman, boy,
girl, or baby. She hollered at a woman in the grocery store who
caught her eye: "Merry Christmas, Lady!". She has some small
language delays that we are still working on. Her eye contact is
normal, her pretend play skills are excellent and she is developing
empathy and co-operative play skills. We will be putting her into a
normal pre-school class next fall. No one thinks she needs or would
even qualify for special education classes in our school district.
We will continue ABA to address any language or social issues that
arise over time, but we expect them to be few and far between. We
hope to continue the rest of the school year at the Birth-3 center
but will not be surprised if we are asked to give up our spot.
On January 12th we went back to Children's hospital to have Maisie's
6 months post-diagnosis follow up visit. The doctor was amazed at
her progress and asked WHAT on earth we had done with her. I
proceeded to explain the DAN! protocols we had followed but when I
got to the describing the chelation he rolled his eyes at me and
shook his head. The doctor then when on to tell me that he must have
surely "misdiagnosed" her and she was obviously "just a late
bloomer". When asked why she had had a major regression in language
and social skills her didn't have a ready answer but eventually
stumbled over "well, there's a school of thought that a child can't
progress developmentally until they successfully complete stages of
development...". At which point I couldn't restrain myself and
countered with "You mean like Erik Erikson? No one believes that
crap any more, that's older than Freud!". The doctor didn't have
anything to say to that other than he would have to go back and
review the video made of her evaluation.
About a week later one of the mother's in Maisie's autism class had
been to see this same doctor with her 2 autistic children and her
baby in tow. The doctor asked her out of the blue what she planned
on doing for the baby's vaccines and she replied that she was
considering doing them one at a time. This doctor told her that
under no circumstances was she to vaccinate that baby until he was at
least 2 years old ! I guess he really did review the video of Maisie!
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