We were now on our way. As Cameron began bio-medical treatment, we found ourselves in a brand new world with a very steep learning curve. I worked around the clock to bring myself up to speed on all of the new medical terminology, medical tests, special diets, supplements, and treatment possibilities. I was nothing short of overwhelmed. Then somebody informed me about Generation Rescue, an organization formed by parents of affected children. I visited their website and found a wealth of information as well as a local Rescue Angel whom I made contact with. She was able to give me further guidance, but also a tremendous amount of emotional support as I began making my way through this new world.
We decided to take a very controlled approach in our treatment for Cameron. We began by having baseline lab work run for Cameron. This would allow us to be able to measure Cameron's progress scientifically, while also help guide us to the best treatment options for our son.
Implementing a Gluten-free, Casein-free diet
Our next step was to begin a gluten-free and casein-free diet (GF/CF). We had heard from several other families and that the GF/CF diet had been very beneficial for their children, but we remained extremely skeptical. At the time, Cameron was only eating and drinking things that contained gluten and casein. We feared that if we took him off of these items that he would refuse to eat at all. We agreed to wean Cam onto the diet and give ourselves one month to attempt to have him fully weaned upon the diet and see if we witness any benefits. Our DAN doctor recommended to us that if the diet was not successful after this trial period then we should at least attempt to reduce Cameron's casein intake by limiting his milk intake.
I read as much information as I could on the GF/CF diet before we began. This was not only helpful in our approach to the diet but also for us to fully understand why the diet could be so beneficial to our son. We began the diet first by eliminating casein from Cam's diet. The following week we then eliminated gluten. We decided to take this approach for a couple of reasons. First, because some individuals may actually develop seizures when taken off both gluten and casein all at once, and second so that we weren't taking away all of Cam's food options at once. As we took away Cam's favorite gluten and casein containing foods, we started to offer him GF/CF substitutes. For instance, when we took away Cam's favorite chocolate milk we offered to him Vance's Chocolate Dairy Free instead (which I mixed up and put into an old cleaned out chocolate milk container so that Cam would be happy that it at least looked the same and would accept it).We were nothing short of amazed by the changes in our child after 2 weeks on the GF/CF diet. Physically, Cameron's asthma disappeared and he no longer required daily breathing treatments. Cameron slowly started to come out of his fog, his eczema cleared up and for the first time in three long years he began to feel pain again. It was a very odd feeling for us to celebrate the first time Cameron bumped his head and began to cry and say "I hit my head!" We were elated not only by the full sentence our son finally spoke but that he actually felt the pain appropriately.
Next, we began slowly weaning Cameron onto a host of supplements that his DAN! doctor had recommended. We chose to start with one at a time and having him on the full dose for 4 days before introducing another new supplement (in our case we began with Chelated Calcium because we knew from previous lab work that he was definitely low in Calcium). We chose this slower method so that we could take note of both positive effects but also realize negative side effects of each supplement so that we would know what was helping and what was potentially causing more problems for Cameron. This has proven to be very beneficial as not every supplement or medication effects every child the same. Cameron has had definite positive and negative effects of some things we have introduced to him.
Once we had Cameron weaned onto all of the supplements that his DAN doctor had recommended we were ready for our next big step Methylcobalamin B-12 injection (MB-12). We were asked to follow the protocol developed by Dr. James Neubrander for MB-12 injections. I decided to give Cameron his first shot on a Friday after he got out of school so that we could closely monitor its effects (I didn't want to send him to school right after a shot since we had no idea how it would effect him).
I could never have predicted the enormous change this tiny little injection would bring to my child. After giving Cam a quick shot in the butt, we made our twice weekly journey to my in-laws new home to monitor the construction for them. While we were walking up to the house an ice cream truck drove down the street. It was the same ice cream truck that had come every time we were there, and each time I had said to Cam "look Cam there's an ice cream truck!" Yet each time he stared blankly and kept walking to the house as if he could not hear the truck or Mommy's excitement about the truck. However, this day proved to be much different. While I fumbled for my camera and walked up to the house, Cameron yelled "an ice cream truck, an ice cream truck!!!" and took off running down the street after the truck! The only thing more amazing was that when I screamed to him to "stop!" and "come back here Cameron!" he actually did it! He actually for the first time in three years followed a direction (two part directive at that). I wasn't quite sure if I should jump for joy or fall to the ground crying as I witnessed my child coming back to me.
The changes with MB-12 kept coming (and still are today). He chose a new book at bedtime that first night on MB-12 for the first time in over 3 months (one of his OCD symptoms). His stimming reduced and his OCD reduced. He began picking at his mouth and nose. We were told that this was a sign that the nerves in his mouth area were repairing (neuropathy from the metal poisoning). As the weeks and months past, Cameron began speaking more clearly and started to choose a few new foods that he formerly rejected because of texture. Cameron did become more hyper. We weren't sure if this was a side effect of the MB-12 or because he was suddenly more aware of and therefore stimulated by his surroundings. At this time we consulted a local DAN! doctor who recommended adding FolaPro (a type of Folinic Acid) to Cameron's schedule to help complete his methyl cycle and decrease the hyperactivity. Since we were following Dr. Neubrander's protocol (which recommends not changing anything during the first five weeks of MB-12), we decided to wait until after our next DAN appt to add anything new (which was in a couple of days).
During our next phone consult with Cameron's doctor he recommended waiting the full five weeks unless the hyperactivity became intolerable (at home or school). We decided to add the FolaPro which was a good choice for us as it did reduce Cam's hyperactivity and ability to function appropriately at therapy and in school.
Cam's First Labs Return
Cameron's lab work which indicated that he was indeed high in several heavy metals and low in competing minerals. His labs also confirmed that Cameron was currently highly allergic to gluten and casein. Additionally, the tests indicated that Cameron had a bacterial infection in his digestive tract. The doctor made recommendations for adjustments to Cameron's daily supplement schedule and recommended that we begin the chelator, transdermal DMPS (TD-DMPS) to begin removing the metals from Cameron's body. Our appointment with the other DAN practitioner was finally approaching, so we decided to consult with her and obtain a prescription for a chelator at that time.
By the time we consulted with our next DAN practitioner we felt Cameron was well on his way to recovery. It was very emotional to witness our baby boy slowly (yet not so slowly) coming back to us. All of Cameron's behavioral symptoms of ASD were decreasing. He was becoming more social and empathetic. Finally, for the first time he was aware of his little sister and they had begun playing together. It was the first time Cameron was playing with any other child since he was 18 months old. Physically, Cam's asthma, dark circles under his eyes, constipation and eczema were all gone and he hadn't been ill once since beginning bio-med (when he had been chronically ill previously).
Our trip to the next DAN dr's office offered us additional pieces to Cameron's puzzle. While other lab tests had not identified yeast overgrowth (which is extremely common for kids with ASD) she had a dark field microscopy test done on a sample of Cameron's blood which showed the presence of yeast overgrowth within his blood. This test also showed that Cameron's red blood cells were oblong and stuck together (they should have been round and free floating), presumably from the metal poisoning. She prescribed Nystatin to treat the yeast (which Cameron had a severe negative reaction to and we ended up having to take him off of and now rely on oral probiotics). She made several other treatment recommendations including homeopathy, supplemental additions, and magnet therapy (with use of magnetic mattress pad from Magnetico). She offered a protocol for the use of a far infrared sauna (FIR) that we had recently ordered for our home to offer a natural detox means. Upon her recommendation we also began giving Cameron Epsom Salt baths (1 cup Epsom Salt and 1 cup Baking Soda) or application of Magnesium Sulfate Cream every day to help him naturally detox. Additionally, her office performed MTHFR genetic testing on Cameron, my husband and myself as we sought to make sense of this puzzle we were dealing with.
Before leaving her office, the doctor ran a "challenge" test on myself. She gave me a challenge dose of IV-DMPS to determine what level of exposure (if any) Cameron may have had to heavy metals inutero. This test would later come back negative for Heavy Metals. It appeared that Cameron's source of exposure was indeed his childhood vaccinations.
When it came time to decide on a chelator we found ourselves in a bit of a pickle. This doctor would not use TD-DMPS (the chelator that our first doctor had recommended) and was recommending oral DMSA for Cameron. My husband and I were planning on attending a professional conference a few weeks later, so we decided to gather as much information as we could at the conference and then make a decision on which chelator to use after the conference.
Professional Conference Brings New Options
While at the conference we had the opportunity to hear many doctor's speak and network with many parents. We were extremely impressed with the treatment approach of one doctor in particular. We spoke to other parents who had seen this doctor and only heard positive things about her. We contacted her staff and made an appointment in her office immediately. We decided that we would use this practitioner as our third opinion regarding a chelator.
Also while at the conference, we had the opportunity to hear Mary Bolles speak. She is the founder of the Sensory Learning Center. We were intrigued with their treatment approach and after speaking to the founder, we suspected that Cameron may be a good candidate for this type of sensory treatment. There was not a center near our home and the treatment would involve twelve days (twice a day) at the center followed up with another 18 days at home. We decided to schedule an appointment for a consultation (and treatment if Cam met criteria) in Farmington Hills, MI where my husband had an office to work out of and we still had family and friends living near.
We returned home and prepared for Cameron's "world tour of treatment." Our first stop was the DAN doctor's office. We reviewed all of Cameron's medical information, protocols, and progress made to date. Together we decided that TD-DMPS appeared to be an appropriate chelator to begin Cameron on. We obtained a prescription, learned the protocol and decided to begin the chelator after finishing the treatment at the Sensory Learning Center.
We made a brief overnight stop at the home of some college friends on our way to Farmington Hills. We watched our children play with their new friends and were reminded again that Cameron indeed was beginning to lose his diagnosis. He was playing and interacting with both the children and the adults similar to any other little boy.
Our emotions were wide and on the surface these days. We were elated by the progress that Cameron was making, frustrated that it had taken so long for us to begin finding real answers, angry with the pharmaceutical companies and government for spearheading the conspiracy that had harmed our child (and millions more), and sad that so many other children still were not able to receive the same care and treatment our son was now fortunate to have (either because of financial restraints or because their families and pediatricians did not know that treatment was available).
When we arrived at the Sensory Learning Center, we again went over Cameron's medical and treatment history with the ophthalmologist at the center. Then he examined Cameron. The doctor explained to us that it appeared that the heavy metals had reached its peak burden at the same time that vision becomes the dominant sense (the second year of life). At that time the cone on the retina is developing physically. Because of the burden of the metals, he apparently developed double vision. To compensate for this double vision he developed two coping skills. One, looking to the side of something he was trying to see (thus the end of direct eye contact) and two, suppressing the vision in his right eye. He first began to do this manually by closing it or winking when looking at things but then he became able to actually cut the connection of that eye to his brain so that he could suppress its vision without closing the eye.
The doctor explained that because Cameron was not able to fully integrate his senses (and particularly vision) it was contributing to his speech and other developmental delays. The doctor explained that it was very important that we continue the bio-medical treatment we had already begun but that the treatment at the sensory learning center could help Cameron catch up developmentally regarding sensory integration the time he had lost because of the poisoning.
The treatment would involve 12 days at the center and an additional 18 more days at home. He would receive treatment twice daily for 30 minutes. Cameron did not mind his first session at all. We had him convinced that he was taking a ride on a spaceship. As the days wore on, Cameron began rubbing his eyes and they began watering. This was a good sign that his right eye was turning back on again. However, he also began regressing behaviorally during the treatment. His OCD became a problem again and he had several meltdowns a day. We were told that this is common during treatment at SLC, however it was heartbreaking to watch our child backslide. As the weeks passed Cameron's eye contact became fantastic. He actually began taking my face in his hands and making me look at him when he was talking.
On our way home, we had one more stop to make. We stopped in Xenia, Ohio to visit 4 Paws for Ability. We had completed an application for an Autism Service Dog for Cameron prior to beginning bio-medical treatment. Our training class would not be for a few more months, but we decided to take this opportunity to visit the training center and introduce ourselves to the staff. Cameron's new dog was being trained to keep him safe, track him if he ran off and got lost (which has happened twice before), sense panic attacks and provide Cameron with touch to overcome them, provide behavior interruption for stimming behaviors, bridge the gap between Cameron and the outside world by teaching Cameron how to socialize with other children, provide him with an opportunity to learn empathy and how to take care of another living creature, and help provide Cam with deep pressure at night so that he can get the sleep his body needs (and the sleep that Mommy and Daddy so desperately need as well). We hoped that one day Cameron would no longer need the aid of a service animal but that currently it would help him not only to operate in our world but to help him recover.
We returned home just in time for Christmas. Cameron was now almost 5 years old and this was the first Christmas he was aware of. Last year we had to open all of his presents for him because he was completely unable to. This year he was singing Christmas Carols, sitting on Santa's lap and telling him what he wanted, opening gifts and was truly excited. Even with the recent regression he was a brand new child this Christmas.
Cameron's chelator arrived and it was time to begin. I knew the chelator itself would smell. It was four parts glutathione which is a sulfur smelling substance. I knew that the sulfur smell going in also results in sulfur smell coming out (Cam was already taking glutathione orally). However, Cameron's stools changed significantly and smelled more like rust than sulfur to me. As we continued to chelate, this odor along with new behavior changes (increased interest in potty training, broader speech, and acceptance of new foods, etc.) we felt that Cameron was definitely dumping metals. Now we waited to run lab work to see what and how much we were pulling out.
Witness Our Journey Continue in Our Journal
Disclaimer: The material on this site is for informational purposes only and is not to be meant as medical advice. Please consult a trusted and knowledgeable physician when making medical and treatment decisions.
This site was last updated 01/10/09