Autism recovery stories: Amanda's journey
Sara DiFucci didn't start using "biomedical" interventions because she thought they would cure her daughter Amanda's autism spectrum disorder. Her motivation was simply "to treat the metabolic train wreck inside her body."
But "it just so happened that as I (used alternative interventions) my child began to lose her 'autistic symptoms,'" DiFucci wrote. "Many just disappeared such as the toe walking, hitting herself in the head and eczema."
Biomedical therapies used to treat physical symptoms related to autism can be costly and often produce discouraging results. In addition to 46 hours a week of traditional intervention (including occupational and speech therapy, school programming and ABA) Amanda underwent at least 22 different alternative or "biomedical" treatments.
But while many of the treatments didn't work, three of them--trans-dermal chelation, melatonin and hyperbaric oxygen therapy-- did.
Here's Amanda's story in Sara's words:
"I've been married for 13 years and have two beautiful children. Jake is my six year old neuro-typical son. Amanda is nine. She was diagnosed with an autism spectrum disorder, PDD-NOS, in April, 2002, just two months shy of her 4th birthday.
Looking back at her 4th birthday party it was like having a party without the child. Amanda had no desire to participate. She sat on the couch and watched TV. while the other children were playing on the jump bouncer, getting their faces painted and watching the clown make balloon animals.
Amanda said nothing during her party but protested with temper tantrums when we sang happy birthday and again when we tried to gently encourage her to open her presents. The party went on while Amanda watched the same Disney Sing-A-Long video for the millionth time in a row.
It still pains me to think of that time in her life when she avoided interaction with others at all costs and the amount of stress she was under on a daily basis was unfathomable.
Our story is like many other families with minor changes in the details. We had a typical developing baby who met all the major milestones on or well ahead of schedule. She became sick shortly after her 15 month round of vaccines and was hospitalized for dehydration.
At that point, the regression into her new world began. My easygoing, happy toddler began to change and was always in fight or flight mode. Yelling and crying all the time. She hardly slept and was very irritable. There was very little joy in her life.
Family members began making subtle hints that they thought something was wrong just after her 2nd birthday but we were in complete denial and their questioning fell on deaf ears. (Why doesn’t she answer when you call her name? Why does she line up her toys like that? Why doesn’t she play with the other kids?).
Her descent into autism was a slow process and we passed off the odd behaviors she developed such as repeatedly hitting her head, lining up her toys, crying all the time, obsession with certain videos and toys and toe walking as part of Amanda's unique developing personality. We thought as she matured she would grow out of these behaviors.
My mother was a pediatric nurse for the last 40 years at a very large hospital and she too began to voice concern that there was "a change" in Amanda but she didn’t have any idea what was happening. In her 40 years of nursing she only saw one case of autism and that child’s autism presented differently.
About a year later we became concerned that Amanda’s language wasn’t developing appropriately. She appeared to be lagging further and further behind her peers. She wasn't "growing out of it." She had the ability to label but at three years old she could not answer simple questions or follow simple one-step directions so we went to the pediatrician for advice and he said “nothing was wrong."
We began to question some new physical signs such as developing chronic constipation and the severe eczema that Amanda would scratch until she bled. We were told these weren't things out of the ordinary. I went back to the same doctor nine months later and again voiced concerns that her behaviors appeared to be getting worse and more odd behaviors developed.
Many sensory issues began to emerge (aversion to loud noises, tags in clothing, not wanting to touch sand or finger paint). I told him I was beginning to be concerned for her safety too because she would often wander away. I once found her outside in the backyard by herself at 3 a.m. and we had to place combination pad locks on the doors because she was able to manipulate every other type of lock we tried. Again, our concerns were brushed off as "normal."
I decided to seek out help on my own and made an appointment with a developmental pediatrician who gave us the dark news. I felt like my whole world ended. When I asked the pediatrician "where to go for help" she didn’t have any resources for me except for a book about hyperlexia. It was a very lonely feeling.
I began making arrangements for traditional therapies such as speech and occupational therapy but I wanted answers as to why my child descended into this new world of hers. Upon researching the Internet, I learned of DAN! (Defeat Autism Now) and made an appointment to do some diagnostic testing even though I did not believe Amanda had any physical problems aside from constipation and eczema.
She was the kid who NEVER got sick. I would pride myself that I was doing such a good job of keeping her healthy so that she never caught a cold. Little did I know that my daughter was very sick and I learned from initial laboratory tests that my child had auto-immune issues.
In addition to an overload of heavy metals (especially lead, mercury and aluminum), food allergies, oxidative stress, disordered amino acids, demyelination, abnormal EEG, reduced glutathione, leaky gut and improper food absorption.
We have tried a large assortment of biomedical interventions. Some worked really well and some did nothing. One thing that makes our story unique is that when Amanda turned six we moved across country due to my husband’s job. We stopped all traditional therapies and had every intention of starting them back up again when we got settled.
At the same time we began a new method of chelation, TD-DMPS (trans-dermal). We tried chelation (oral DMSA) in the past but Amanda had some trouble with overgrowth of yeast in her gut which created additional constipation so we had to stop.
Eight weeks into trying the new chelating agent, TD-DMPS Amanda became potty trained virtually overnight. Over the next few months Amanda’s teachers were noticing a boom in expressive language; she was becoming more sociable and willingly joining the group.
The temper tantrums decreased, many of her sensory issues diminished. We saw more improvement in Amanda in those six months without using traditional intervention than we did in the prior two year and we were able to tease out what intervention was making the difference.
During this time Amanda did attend school, however, did not have any additional therapies as she did previously. Biomedical intervention became our main focus. Chelation was working! Six months later we began adding speech therapy and ABA back into Amanda’s regimen of therapies and she no longer required private occupational therapy.
Next to chelation, the intervention I would place second is the use of melatonin. Amanda was the type of child who seemed to lack any need for sleep. She was one of those kids that had trouble falling asleep and would wake in the middle of the night many times at 2-3am and would be up until the following night. The lack of sleep was the most trying time for me as a mother. When she began using melatonin I felt as though we hit the jackpot.
"Melatonin is considered by some to be an antioxidant vitamin. It’s a vitamin only to those who cannot make enough of it in their own bodies, and this group appears to include a majority of autistic spectrum individuals.”
The third treatment that helped Amanda the most is mild hyperbaric oxygen therapy also known as mHBOT. From the TACA website:
"HBOT is a safe, effective way to get more oxygen into the body at the cellular level by using pressurized air chambers.
"According to the Laws of Physics, an increase in atmospheric pressure allows for more gas to be dissolved into any given liquid. Oxygen exists as a gas at room temperature, and the human body is made up almost entirely of water. The chambers used at the Hyperbaric Therapy Center use filtered ambient air with an additional oxygen concentrator to safely administer oxygen to the body with many therapeutic benefits. By allowing more oxygen to penetrate otherwise oxygen deficient areas, relief for many common ailments can be sought, because mHBOT enables the body to carry out oxygen dependent processes by dissolving oxygen directly into the blood, plasma and cerebrospinal fluids.”
We didn’t see any big 'wow!' changes with Amanda that some parents report. For Amanda, she was experiencing slow but consistent gains using biomedical treatment, however, when we added mHBOT the gains began to come much quicker especially in the areas of speech and language. She was able to hold longer conversations, inquisitive about the meanings of new words, processing issues began to disappear.
We currently do 1.5 hours dives 2-3 times per week. We have a chamber in our home. This was by far the most costly biomedical intervention we have incurred.
I did not view using biomedical intervention as the tool to “treat” Amanda’s autism. I was treating the metabolic train wreck inside her body. It just so happened as I did this my child began to lose her “autistic” symptoms. Many just disappeared such as the toe walking, hitting herself in the head and eczema.
No one would suspect the living nightmare Amanda was once held captive by. Today, the average eye would not be able to make an autism connection. Last year, the school system called in an outside psychologist to develop a behavioral intervention plan because Amanda can still become stressed in certain situations. The psychologist said that while observing the classroom she was not the child he would have picked out from the crowd as the one who had autism.
Today Amanda is the happiest we have ever seen her. Her health is being restored. She attends a mainstream 3rd grade class at Conley Elementary School in Huntley. She is very bright academically (A/B student). She can appear awkward in certain social situations but she has friends and children genuinely like her.
I don’t consider Amanda "fully" recovered, however, I can finally see the light at the end of the tunnel. My child is gong to be o.k. She’s going to overcome autism. No amount of biomedical intervention will teach Amanda the social skills and non-verbal communication skills she still lacks. We continue to use traditional therapies to address those issues.
There wasn't an organization like TACA available to help mentor/guide me through the maze of information. I was overwhelmed with all the information. I had no plan as to where to start, what was most important to do first, how to obtain services, or how to advocate for my child.
There wasn’t a journey guide such as the one TACA has today that helps parents survive the first year upon diagnosis. I had to sort most things out on my own and many times I would find conflicting information and have to try to determine on my own what was right.
Treating a child with autism is an enormous task and I found solitude in other parents who had children with autism that were able to give me answers. I just wish I found a way to connect with these families early on. TACA does just this.
We offer families hope, support and assistance in speeding up the cycle time from diagnosis to getting a parent/caregiver the appropriate information that will lead to effective treatment and support. TACA strengthens community.
Biomedical intervention is not guaranteed to work nor is it easy to implement, however, the payoff can be enormous. What helped my child may not help another, however, one will never know unless they try. Treating autism is a marathon not a sprint and it takes times so don’t give up if the first few interventions don’t help your child.
Find an experienced parent to help – they often know more than the doctor. Never give up. Autism is treatable and recovery does happen."