Introducing Robbie: A Family Turning the Tide
Robbie was sick and compromised from birth. He lacked oxygen during many hours of labor, and was born barely alive. Afterward, he was limp and listless and would only sleep. For a couple days he was like that, no nursing at all for many hours. There was every indication that he had irreparable brain damage.
He always had issues that were obvious to me, a mother of 5, because my older children didn't have any of them. He was not vaccinated, never had antibiotics, and was breastfed until age 5 or 6...and still he was never, ever well. He had hypoglycemia, seizures, very difficult behaviors and obsessions, violent tantrums, and an extremely voracious appetite.
At age 9, he had a horrific bout of pneumonia, after never in his life even once being “sick”with a cold. While he had this illness, he became oddly normal. For those few days of pneumonia, he even began to read books, which he had never done. It was a flicker of health when his immune system was somehow functioning more normally for a short amount of time.
Immediately following the pneumonia, he regressed, and also developed asthma and horrific allergies. We tried anti-fungal and anti-viral treatments, because he tested positive for candida and all sorts of viruses. He tested positive for heavy metals, and genetic abnormalities. He tested positive for just about everything, but every single treatment and therapy and drug just made him worse.
I still wasn't ready to accept that good nutrition would be enough to help my son's body heal, so I approached nutritional “therapies” halfheartedly. I don't know what I thought would help Robbie, because it's hard to know what we thought back then. That he would straighten out somehow? That some doctor, somewhere, would figure something out for us?? We kept thinking it was his blood sugar, because that's what the pediatrician said. We went to doctor after doctor, specialist after specialist. I even looked up one of my old friends who was now a pediatric psychiatrist, and I called her.
We talked a long while and I remember her asking me what I thought were strange questions, such as whether Robbie got stuck on certain topics, or if he lined things up, or was "rigid." We answered yes to most of her queries, but still were not remotely aware of the connection between all of Robbie's disparate symptoms. After the call, she gave us the number of a very specialized, well-educated pediatric endocrinologist. We then retold our entire Robbie-hunger saga.
We were totally focused on his extreme hunger – his #1 symptom, and the thing that seemed to most affect and impact his crazy behavior. This latest doctor asked that we fly Robbie in to do a 24-hour observation and blood sugar fast. He would get best-of-the-best care and we would get to the bottom of his condition.
(My father (a doctor himself) had already died--and he had gone to his grave trying to unravel Robbie's hunger and behaviors. Dad was quite frustrated that the docs just kept saying Robbie had “blood sugar issues.” My father wanted to know why. He was sure that we needed to find the root cause, he wondered if it could be a tumor on his pancreas, or something genetic, etc. etc. He was intently researching these conditions in the hopes of helping Robbie by the time he died.)
However, at the point when we were talking with the pediatric endocrinologist, my husband got deathly ill and all my attention and energy went into getting Charles well and bringing him back from the brink of death. There were hospital trips and doctor visits and never ending infections and fevers and alarming weight loss, and more infections. In the midst of this turbulence and quite by accident and in passing, I found the ASD forum and learned about the Specific Carbohydrate Diet (SCD).
For awhile, I was on the online forum with Elaine Gotschall, who initially popularized this diet for ulcerative colitis, IBS, Celiac, and Crohn's patients. But for so long, I also thought that Robbie wasn't "that bad," because sometimes he wasn't, and we were coasting along and could control him if we just fed him frequently enough. He was difficult, but manageable.
And even as Robbie got worse, the autistic kids I read about just didn't seem to be like him. He did not even have a clear diagnosis, and he didn't have a “dietary problem” as far as I could reason, so even though I read about other parents treating their children with nutrition, I thought: “No need of a diet for us, and certainly not such a strict one.” I halfheartedly tried to implement the SCD at one point, but kept bread in the house since Robbie “didn't react to bread” (I reasoned), and he did not do well with almond flour and honey (which are SCD-legal).
I didn't for one second believe Robbie had autism, because he was high functioning and smart and articulate and everyone thought he was super bright, and he was precocious and cute when he wasn't tantruming out of control.
Then, when Robbie got an Albuterol inhaler for his asthma, he began to lose his mind--not responding to his name, running away, becoming extremely hyperactive and later suicidal, violent, and totally insane. By the time we made the connection to the drug that was precipitating some of this, it was too late to stop the decline.
We consulted psychiatrists and so many more doctors. Already since Robbie's birth, we had been consulting specialists for every one of his symptoms, all to no avail. Each medication in turn made him much worse, and some almost caused his death.
At this point, we turned to holistic practitioners, and did a biomedical DAN protocol with at least 55 different supplements. We did chelation. He got even worse.
And right about now, my son didn't have a future--we were staring death or an institution right in the eye. I get this from parents all the time: “Oh, but my son's not as bad as Robbie was!” Well that's true--but there was a time when Robbie wasn't as bad as Robbie became. Just because a child is all right now, doesn't mean they will be all right in ten years or as an adult. Because now, Robbie required three of us restraining him multiple times per day. Day after day, we had to overcome violence like few can imagine. We lived with deadbolts on our doors to keep him from running away, and closed windows and shades due to his screaming and outbursts.
The worst day of my life was the day he completely lost his mind, ran away, and was subsequently found and then drugged and restrained in a psych ward. This truly was the most awful day of my life (and probably his as well).
Thanks to a brave psychiatrist who dared to tell us that psych wards are not places to heal mentally ill people, we brought Robbie home the next day. But now...every single doctor, all the traditional ones, all the holistic ones, had all given up and “fired” us. I had not a doctor who would work with me.
I can't tell you the panic I felt when the last alternative doctor, Dr. V., told us that he was out of ideas for Robbie. I begged him to keep us on and he did, only to later restate that he was out of answers and options. I appreciated Dr. V.'s honesty and actually learned a lot from him, as he was instrumental in helping us change our diet from straight-up McDonald's. It was on his website, reading his articles, that I got the courage to go to Whole Foods (first time ever!) in May of '06 and buy cauliflower. I came home and cooked it along with some chicken for breakfast. (Some people have joked that I should write a book called “Cauliflower for Breakfast”!) He also told me to go buy raw milk and kefir grains, both of which I did, and as afraid as I was, I left that godforbid raw milk on the counter for 24 hours, and fed it to Robbie (and all of us).
Robbie was totally suicidal, violent, dangerous, and physically and terribly sick with so many symptoms--and he went on a hunger strike, eventually ending with me spoon feeding each bite of food into him. This continued for a long time. We locked the doors and this is what three of us did all the day long in order to recover him. He was like an addict being taken off of heroin. And I'm a good step-by-step kind of person--but I had to battle french fries and McDonald's, and get him to bites of cauliflower.
Talk about blindly following! But I was desperate, and some of this stepping-out in faith requires a bit of desperation. You've probably heard that old joke about the man falling off a cliff, who finds a branch, and clings to it for dear life. He calls out to God to save him, and God answers, "Let go of the branch." And the man replies, "Is there anyone else up there?" So have we followed along, letting go of each branch that appeared to give us safety, and free fallen to greater health. Oh, does it take faith to let go, though.
And after Dr. V fired me that second time, I had to--again out of desperation--dig deeper still.
Robbie was twelve years old, and we had been doing “diet” for two years. I now decided to remove all the supplements, and stop all the drugs, and heal my child with food alone. I would use only real foods that God intended. We had nothing else left to try and certainly nothing to lose.
I just knew there HAD to be a way. We always knew to love him, and tell him at all times how wonderful he was, and how proud we were of him, and how we knew he wasn't bad, but rather just very sick. We gave him this message of love each and every day, countless times per day.
And it turned out that it was a blessing, the day that Dr. Mom had to take on the case. I had to realize fully that it was this diet thing, or nothing. There was absolutely nothing left out there for my son that I hadn't tried, and this was my last ditch effort. This was when I put my head down and decided I was going to do it to the nth degree and give it my last ounce of strength and energy. I had days and days when my faith was gone. Thank God for people on online lists who just told me he would be well. I clung to their words and their hope for us.
I was not giving up on my son, not for one second was I willing to believe that he would stay that way. And it was then that I found Amy Yasko, and Donna Gates' Body Ecology Diet (BED), and slowly began understanding the dietary approach. It made sense to me that the body had to be detoxified and the deficiencies had to be corrected. And we had to get his body to do this healing by nourishing it with food, because none of the supplements or drugs had managed correct anything. I was going to get the job done this way, and I dared believe it could happen. Because it was believe in that, or give up.
Then I found a woman who had healed her son on the BED list - Donna's cousin's son. Up til little Thomas became autistic, Donna had only worked to heal people with Candida. But Donna suggested to Thomas' mother Diane that she try this antifungal protocol on small Thomas, to see if they could cure his autism. Happily, Thomas recovered. I paid Diane to talk to me on the phone and I begged her for guidance. I wanted for Robbie what she had done for Thomas. I was beyond excited to think about this possibility. I dove in and read all I could on healing foods.
Like I said, I already had kefir on board, but there was yet so much more. I had never bought kale or chard or collards. I didn't even know what they looked like. I had never had seaweed or sauerkraut or broth. A whole new world was opening up to me and the possibility of Robbie recovering this way seemed attainable. Donna said to stay away from people who would tell us it wasn't possible, or who would have a negative attitude or energy around us. She said to believe and visualize my son well. I couldn't always, honest to god, I couldn't. I would try to see Robbie playing with other kids and going to school and having fun and I could not. All I could see was foaming-at-the-mouth Robbie biting my arm bloody...oh how I tried to visualize him well. It was harder than anything I had ever tried to do. I clung to my new online friends who told me that Robbie would heal. I read and reread their emails and saved them because they kept on telling me he would be well.
And after all, if other organs and body parts can heal, why not the brain? When he was younger, for no apparent reason, Robbie used to lose consciousness constantly. He also had had several falls that yielded traumatic hits to the head along with the loss of consciousness. We had every reason to believe that his brain was severely damaged, he exhibited all the symptoms of Traumatic Brain Injury, and he seemed utterly hopeless in every way: physical, mental and emotional.
But I was going to die trying to recover him. If there was any human way or even superhuman, I was going to find it. I learned about Dr. Natasha Campbell-McBride's GAPS protocol (based on the SCD), and created a hybrid BED/GAPS protocol of my own. I decided that I needed to introduce as many and as much probiotic fermented foods as I could possibly get into him.
And I didn't have great success for a LONG LONG LONG time. Those first two years, I had done things maybe 80 percent perfect, and he didn't get well. The third year after the pneumonia, when I really dove in, I did it one million percent and he didn't get well either. Oh, but that 4th year, I caught a glimpse of healing, very slim and short lived. We had a day when he was happy and had no outbursts, quickly followed by more bad days. Eventually, we strung together two good days. One day, we realized that there were more good days than bad. Then came more and more hints that he could get well. There were days with no bad behavior at all. His insatiable hunger disappeared, his bloated belly was going down, his constipation was dissipating, his sleep was good....
By the end of his fourth year since the pneumonia (second year of strict dietary healing using BED/GAPS), the physical changes were obvious and amazing. His body really was getting well, and we longed for his mind to follow. I knew that Dr. Natasha says that this is often the last part of the healing.
And now, we are beyond the 5th year since pneumonia (third full year of strict diet). He began by excelling in martial arts, and then went up 7 grade levels in several months (he had been at a first-grade level with no writing skills, and now is doing algebra and complex abstract learning). Robbie is now ahead of grade level. He is exploding cognitively and in every way. He wakes up singing and laughing (since Robbie's birth and until he began healing from this diet, we never had one single good morning. He would wake up screaming and angry every single day). Moods and emotions certainly correlate to health and well being, because now Robbie is pleasant and loving, has empathy and compassion and loves life. (He used to say every day that he wanted to die and kill himself.) His belly is totally flat, his social skills are spot on, and he has many, many friends. Robbie is now fifteen years old.
And now, after 5 years, of healing--3 strict years of diet--he is soaring. What if I had stayed at 80 percent with this diet, or stopped after 1, 2, or 3 years? I wouldn't have gotten him well. I chose to continue on faith, that this could and would work, that I would not let up until my grave.
The great thing about my son's recovery is that he was in direly bad shape. Not too many can tell me their kid was worse than mine. Not many people can suggest a therapy or treatment that we didn't try. We truly were staring death or an institution in the eye. I'm here to let people know that if my son could heal, others can as well. I chose to quiet down the negativity and to believe that he could heal. We can choose to believe maybe they won't or choose to believe maybe they will. I chose the latter and I have been right. There are others who have been right too. I would say to anyone: keep going and dare to believe in this protocol, in the power of the body to heal itself when given the building blocks it needs. After all, there are no side effects to feeding your child good, healthy food!
Call me crazy, but I really believe in the human body. I tell myself that it's not too late to grow even Robbie's bones. I feel that no matter what I "did" to Robbie in utero by running long-distance and eating fat-free and being undernourished, that his body has the power - like the seeds you plant outside - to sprout and heal and regroup and have a "do-over". I choose to believe it's possible. Every single day I look to see if Robbie's teeth are straighter because I believe his teeth will get so they fit in there. I keep telling him that too. (If so much else has changed in his body, why not more?) I refuse to focus on what I can't change, the past, the genes, the pregnancy, the childhood lack of nourishment, and I press on to what I can change now, and by golly I am determined.
Donna Gates used to tell the moms that our kids have something she called "seed power" - this energy to heal and overcome that adults don't have. Don't you love that concept? Kids can push through the obstacles (the hard soil) and burst forth in their healing, when we give them these healing foods/ferments. Donna had such a soft and sweet way about motivating us, and I loved her for that vision. It kept me going. I still believe in my son's seed power!
James is so happy to have a brother finally. I love this aspect of healing.
Robbie does things now, like the other day when he picked up the guitar out of the blue, and decided to learn to play... We had given Robbie guitar lessons for about a year when he was younger. I went to the music shop and asked all the musicians who worked there if they knew a guitar teacher who would come to my house. Robbie was still really bad at that time, but we figured if he had something kind of normal in his life, like a music lesson, it might ease the pain of his situation in life.
And so Jack began to come once a week to “teach” Robbie guitar. Well, of course, Robbie couldn't learn guitar and so almost every week, we would meet Jack at the door, hand him a check, and ask him to return next week. Poor guy, he was so perplexed by us. We told him that Robbie had been "very sick" and couldn't really practice or learn, but just having Jack sit next to him once a week with a guitar might be good for him...Jack was not to expect anything from Robbie, just do us the favor of coming over to sit with a guitar in hand for 30 minutes.
So back then, Robbie never learned much at all and never once practiced, he only hung out once a week (or month) with Jack. After all those lessons, Robbie didn't know one bit of guitar playing or music, which was fine.
So imagine our surprise when Robbie, at age nearly fifteen, picked up the guitar, and played for hours! Charles, James and I thought it was incredible.
And he plays piano too, because he has been taking lessons at the homeschool co-op, and will have a recital soon. He really can play piano and read music now! Our little jumpy being can do all this.
It is impossible to overstate how Robbie has made leaps in every area of his life, physically, mentally, cognitive, socially. He is doing theater and landing himself exciting lead roles. He is homeschooling and learning algebra with ease along with his music and dance--tasks that he could have never mastered when learning was impossible for him.
He has been able to socialize out in the world with other adolescents at an age that is awkward for many. He hosted a get together with boys and girls from his theater group recently, and was an amazing host. He has even attended two overnight youth group weekends successfully, as well as a week of sleepaway summer camp. We continue to keep him on the diet without any objection from him, because he is grateful to have it in order to feel so well.
Last month, we took our first family vacation in over five years.
For 8 days we were gone from home and never once veered off the diet. We drove 20 hours with our frozen meats and raw milk. We stayed at Mariott Suites and I cooked for the road, and while there I cooked all our meals. We brought our food to the parks each day, including kraut and kefir. I even made a pot of broth at the hotel! We were never hungry or had any cravings, and ate only our foods. It really can be done with some planning and determination.
Of course the best part of the entire event was the MAGIC. I don't mean the Magic Kingdom magic, but the magic of seeing a child who for 3 years could not leave the house, be out and about and fully recovered.
I get afraid to say these things, but there is no denying that our son is WELL, beyond well. He is a healthy teenager, and he is an AMAZING person whom we had never ever met before. He is happy and calm and he says all the "right” things to people, like "Excuse me" and "Please" and oh so many many "Thank Yous". He used to only scream and rage and be self injurious and downright psychotic and dangerous and violent. The contrast is nothing short of miraculous.
He looks strong and beautiful in his physical sense. His body has been dramatically transformed into vibrant and healthy. His mind is clear and sharp and able to learn and process whatever comes his way. His moods are even and he is often singing or laughing or smiling or appropriately interacting with family, friends and even strangers.
This has all come at a high price in terms of time and energy and effort and total commitment to this protocol. Without compromise, we have followed it faithfully and fully, day after day, pouring in ALL of the healing foods. The pay off is gigantic. I firmly and unapologetically believe this works IF you are able to implement it as Dr. Natasha and others advise. Dr. Natasha reminds us that healing the body using a nutritional protocol like this takes “Two to three years, if you're lucky.”
On a sad note, we saw countless children (adults too) who are like our son used to be. They are all around us. One particularly heartbreaking moment was when a child had to be taken off the Rock 'N' Rollercoaster because he wouldn't hold onto the handles, but instead could only cover his ears. Not one person seemed to understand, not even the father who just yelled how ashamed he was at the poor boy. My boys did get it, though, and they expressed such concern for the many who suffer.
At the Disney parks, I kept seeing kids and situations that made me pause and be overwhelmed with gratitude and a fearful awe and a deep concern for the future. It's like we are actually IN one of those movies, the protagonists in a move like Day After Tomorrow or Outbreak or one of those. I know it sounds crazy and alarmist, but it just might be true. Dr. Natasha said in a lecture, and I've heard it before, that the CDC--and does it get any more mainstream than this?--has already said that this is the generation that will bury their children. Never before has this been the case in the history of the human race as we know it, that the previous generation will outlive the subsequent one.
Every time one of those dire cases of mentally ill children and teens and adults come into my view, there's still a small voice inside that says, "Robbie was like that", and, "He was that bad and that far gone".
And I can only just bow my head a bit and let that wash over me, the severity of it all and how we averted disaster. At a concert recently, there was a mother with a teen in wheelchair and he was deformed (like Robbie got on the one Haldol microdose I gave him), and so skinny that his limbs were the width of the actual bone. It was bone covered with a thin layer of skin. It hurt to look. She was trying to make him dance and moving his deformed bony arm back and forth and singing to him. I was worried it would break right off, no kidding. He was completely out of it, drooling and needing her to wipe the spit off his mouth as she sang. She herself was totally obese. A few feet away, there was a strong and robust and totally happy, singing, dancing Robbie.
The stark contrast was enough to make you cry. And then I got a twinge of, “What did I ever have to complain about, look at this poor woman!" But this is when that small voice said to me, "I want you to see that Robbie was THAT bad, THAT malnourished and THAT sick." And I sat in silent awe and reverence with a profound sense of the need around me, and my personal need to help. And then Charles leaned over and said, "I will work and earn money, you keep helping everyone who writes or calls."