I’ve been putting this off for some time now.
I haven’t quite known how to start it I suppose. The truth is, I don’t even know where this story begins.
All I know is that my son and our lives have been stuck for quite some time in a struggle just to get through the day, hoping that the next will be better.
For most people this will seem quite strange as I’ve not been very vocal about it.
And if it weren’t for my wife speaking up and asking our friends and family for support, I’m not really sure where we’d be or if I’d even be sharing this right now. But what I do know is that in that giant step to share our story and the intimate details of our lives, we were showered with tremendous love, support and prayers that filled us enough to push forward out of the depths of depression and guilt into action and results.
And then the music stopped…
Everything seemed so perfect.
A year off to travel the world. To spend an extraordinary amount of time focused solely on each other, seeing the many sights of the world and experiencing new things. It truly was a trip of a lifetime. One I am sure we will have again, but also one that set Tyler’s expectations of years to come on a pedestal difficult to attain. Especially on returning to “home” to little more than the shirts on our backs.
The first year back in the United States was tremendously stressful. Tyler seemed to handle it best, however as I look back I realize it was very difficult for him as well.
What seemed liked increasingly defiant behavior soon turned into bouts of extreme rage. As I think back now it all seemed so gradual as to not notice how bad it had become. Episodes on a daily basis that would almost always have me wondering if the police might show up as a result of a neighbor calling to investigate why Tyler was screaming at the top of his lungs.
It is very hard to describe to someone who has not experienced looking into their child’s eyes and seeing pupils dilated almost to their entire iris and an angered glare back devoid of the loving child you know. The only thing often bringing him out would be his own tears or my wife or I sobbing in desperation and despair. When it would get that bad, it was as if the loving little boy we knew somehow was able to break through what we now know to be an autoimmune induced opioid rage.
SO what happened to Tyler?
That was the question that racked our brains. He was always such a sweet, kind, loving child. He was very conscientious and truly cared about others and his family.
When things finally reached a breaking point, we knew it was much more than behavioral issues.
SOMETHING was not right inside. We decided to make a trip up to Robert Thiel, N.D., a trusted naturopathic specialist who had helped my wife and many of my former patients when I lived on the Central Coast. He diagnosed Tyler with a fungal (Candida) overgrowth and depletion of several other organ systems.
We had already started using a high-quality probiotic which did seem to help. For years Tyler had had a small “bumpy” rash over his T12 spinous process (mid to lower back). It was very strange as it was only the size of a small coin and would flare up from time to time if he ever ate gluten, sugar and/or red dyes (a rare occurrence as Tyler’s diet was one of the cleanest around). Dr. Thiel said that the rash was being caused by the candida infection. He recommended a natural supplement to help kill off the yeast as well as several other supplements.
Sure enough, the rash started to go away more than we had ever seen it but it still persisted as did Tyler’s episodes of rage and anxiety. About a month later we decided to make an appointment with Bob Sears, M.D., a pediatrician who specializes in autism spectrum and other developmental issues and who has a more naturalistic perspective and approach. After sharing Tyler’s story and symptoms, Dr. Sears said that it might be PANDAS.
“PANDAS? That’s what Maria had said it probably was,” I thought to myself as I heard Dr. Sears utter the word.
Months earlier as Tyler was going through difficult times, I had shared some of his symptoms with a trusted mom and practice member who is an autism specialist herself. She has, after all, helped her own son recover from the symptoms of autism to the point that he no longer has the diagnosis.
Yes, I know. Many people don’t realize that can happen but recovery occurs and there are many other families out there who have recovered their children. (Here are some resources)
At the time she said it, I was honestly unaware of what PANDAS actually was. I don’t feel bad about it as most doctors as well as the general public are completely unaware of it despite that some specialists estimate that up to 25% of children with mental and emotional health issues such as ADHD, OCD, etc actually have PANDAS. (If you have a loved one or friends who seem to have a similar story, please share this as it may save their child and family.)
So what is PANDAS? That is a good question. One that few really understand. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. However, it is part of a more broad classification known as PANS, Pediatric Acute-onset Neuropsychiatric Syndrome. Another sub-group is known as PITAND, or Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorders.
Whatever you want to call it, it sucks.
Basically the child’s gut becomes leaky from various stressors, the leaky gut causes material to enter the bloodstream that normally should not and the body’s natural defense system kicks in to attack the invaders. This causes a massive and cyclical barrage of inflammation which reaches the brain and causes the various neuropsychiatric symptoms.
Fortunately for Tyler, our naturalistic philosophy and scientific knowledge of how the body works allows us to see this in a different light than those in traditional camps. Even though it is still considered experimental, the traditional approach is to use strong antibiotics for a prolonged period with some doctors believing these children need them prophylactically for life. Even then, it is reported that these children have “flares” if they encounter these pathogens again and that many children stop taking the medications when they become adults and fall in to severe psychosis.
That was not an option for us. At least not without first using all of our skill, knowledge and seeking out specialists from around the globe who can help our son make a full recovery.
There is no scientific reason for me to believe otherwise.
A Bright Future
And as I write this right now, I think of how difficult this has been for my wife and I. Yet my son is the one experiencing it more intimately than either of us. I often wonder how much of this he will even remember.
My wife says that parents of children with PANDAS often don’t remember anything or very little from the crisis time periods. I can see why. Tyler often doesn’t remember a conversation or action that occurred just moments before, much less a day or two.
In all of these terrible events however, a bright light has begun to shine.
Immediately upon receiving the PANDAS diagnosis from Dr. Sears, we began the recommended Specific Carbohydrate Diet. Almost immediately we saw a big improvement in Tyler’s behavior, anxiety and especially the rash on his back. It’s a very strict diet designed to clear his body of the yeast and actually easier to implement than most might think. Both my wife and I have also felt much better since adopting this diet for ourselves.
The most recent addition to Tyler’s healing journey has been through the recommendations of a specialist in the UK, a homeopath named Alan Freestone. The remedies he has recommended have been nothing less than extraordinary. Tyler has been taking them for about 3 weeks now. Upon taking the first remedy, Tyler actually asked my wife to leave the house. He had not done this for months previously and we would often have to physically pick him up as he fought us if we actually had to leave the house with him. The next day he asked if we could go to the beach and we did.
Tyler has been having more and more great days. The OCD symptoms, rage and defiant behavior have been dwindling. His anxiety, while still high at times, is manageable and he has been leaving the house.
I see my son coming back home and its the greatest feeling I think a father could have.