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.
Steve is a husband, father and pediatric and family chiropractor. His practice focus is on the care of children with various developmental and neurological issues from autism to epilepsy. As a father his focus is on doing whatever it takes to help his son heal and thrive.
March 7, 2015 @ 3:42 pm
Oh……..wow…..Thank you for sharing your heart! I had no idea! You never know….by sharing you could be helping someone else…..and I believe sharing is also healing at times!!! Sending HUGS HUGS HUGS to you THREE!!!!
March 8, 2015 @ 5:16 am
Thank you Janette! We appreciate your loving support!!
March 7, 2015 @ 3:55 pm
Thank you for sharing your story. This will be so helpful to others. So sorry for what you have been through.
March 8, 2015 @ 5:17 am
Thank you Rosemary. We don’t want to see any other children and families suffering when help is available. Thank you for the support.
March 7, 2015 @ 5:16 pm
Steve, Erin and Tyler…. I am so glad that you have found some answers and relief for everyone in your family…. Can you give more information on the special diet you mention, I think that would be helpful to myself and others…..
My Blessings to all three of you at this time. You are loved and appreciated so much for who you are and the healing gifts you offer to others. We miss you three so much here on the Central Coast, you are truly a blessed part of this community, and a very loved family.
March 12, 2015 @ 2:57 am
It is called the Specific Carbohydrate Diet. It was initially developed to assist those with Chron’s, IBS, and similar bowel related symptoms. The basics are no grains and no sugars or sweeteners (honey is the only sweetener allowed). There are several addtional restrictions which can be found at http://www.breakingtheviciouscycle.info/
Thank you for your kind words. We miss you all, too!
March 7, 2015 @ 5:18 pm
Thoughts and prayers of courage and strength for you and your family Dr. Tullius. Coast to coast. Thank you for sharing your story. I have consulted with a mother of a child with PANDAS. She struggles and feels powerless while looking for direction. I will forward this post to her.
Much love!
March 12, 2015 @ 2:55 am
Thank you, Dennis! Please share far and wide!
March 7, 2015 @ 6:56 pm
hi. I know Mark and Mary. Thanks for sharing your story. Does Tyler have tics too along with his anxiety and ocd? My son has similar sx’s. Dx Tourette’s. All along the same spectrum. Similar diets are helpful. We haven’t yet experienced the rage Attacks. Nervous about puberty as all I’ve read says its worst then. You aren’t alone. Soooo many kids out there with similar sx’s. Parents struggling with them. Would love to chat sometime. I’m a pediatrician doing all I can to help him without using meds. We’ve done yoga, food avoidance, chiropractic, reiki, meditation. Anyway. You are not alone in this
March 8, 2015 @ 5:23 am
Hi Jennifer, Tyler will display some very minor tics when the brain inflammation is elevated or his resources are low (not enough food or sleep.) Mostly he goes to pacing around the room or saying something repetitively.
I’d love to chat as well to see how we can help our children and the many more out there. Thank you for contacting me and for the support.
March 12, 2015 @ 2:54 am
Hi Jennifer,
I would encourage you to look into PANDAS a bit further. Our son’s worst symptom was the anger/aggression and anxiety, but this is not the case with all PANDAS kids. Some are Dx Tourrettes initially. The biggest difference with PANDAS is a sudden onset. As I explain in my most recent post,( http://savingourpandas.org/this-is-how-it-all-began/ ) though our son’s onset was sudden, there were extenuating circumstances that caused us to attribute the behaviors to, well…behavior. Continue reaching out. We would love to help you with what we have learned.
March 7, 2015 @ 9:32 pm
Steve, just know that all of us at the Sustainability Group are behind you and support you. Our thoughts and prayers go out to you and your family. We are all just a phone call away if you need anything.
Rick
March 8, 2015 @ 5:24 am
Thank you Rick. I sincerely appreciate you and everyone else for supporting me.
March 8, 2015 @ 12:30 am
All the best to your son and your family in your healing journey…while this has taken every ounce of you, you will never regret all you have learned. Thank God this child has parents that will accept nothing less than total healing 🙂 I immediately thought perhaps there was something during your travels that he was exposed to that triggered a gene or further exacerbated a previous exposure of some sort. Have you been able to trace back to that “upstream cause?” I know this article will be a benefit to you: http://drpompa.com/additional-resources/health-tips/248-the-autoimmune-answer-microbiome-epigentics-chemical-stress-three-legged-stool
March 12, 2015 @ 2:49 am
Hi Merily,
See my most recent post about the initial trigger. 🙂 Thank you for the resource!
March 8, 2015 @ 1:47 am
Dr. Steve,
My son also has PANDAS diagnosed by Dr. Sears and Maria is a good friend of mine ( who also recommended we come see you). We just started our journey as well. I understand what you are going through. Many Prayers !
March 12, 2015 @ 2:48 am
Kristin,
This is something I do not wish on any child or any parent. Please continue to reach out and connect. We are only as good as our support system. Love and a hug to you and your kiddo.
March 8, 2015 @ 2:45 am
I am so so sorry for all of your pain and struggle trying to find a cure. My major is Applied Developmental Sciences in Child Adolescents so I am grateful you shared your brave story and educated us on PANDAS. You are an incredible family and I know Tyler will get through this because of his loving, selfless and dedicated parents. Sending love your way and keeping your family in my prayers. <3
March 12, 2015 @ 2:45 am
Thank you for your support, Mandi. Love to you and your family.
March 8, 2015 @ 4:28 am
I just wanted to share that the supplement AHCC (mushrooms) stopped my son’s recurrent fevers after he was diagnosed with PANDAS. It’s an incredible immune booster. It was a very scary two years for us, but he’s doing great now. We too, follow a special diet and supplement regimen. Takes time to heal. Best wishes!
March 10, 2015 @ 4:52 am
Hi Kathryn, thank you for sharing what has worked for your son. Can you describe the dosage and frequency for the mushrooms? Does your son still take them and do you feel your son has made a full recovery or does he have flares from time to time? Thanks!
March 8, 2015 @ 12:17 pm
I just came across your blog doing reading on PANDAS. We have started gluten and dairy free along with the Feingold diet. And have seen improvements. I believe Diet is SO important. We however are also dealing with a strep infection so we had to use antibiotics as well. I am hoping there is no relapse once we are off.
Good luck to you and Tyler!
March 10, 2015 @ 4:49 am
Hi Lisa, thank you for sharing your results with diet. Diet is HUGE as we have found out. Tyler has always eaten incredibly clean. Mostly all organic and gluten free as we noticed early on that he did not do well with it. (My wife is also extremely sensitive to it.) Even with that diet however, it wasn’t until we implemented the Specific Carb Diet that we really started to see a very noticeable change. Good luck to you and your child as well! 🙂
March 9, 2015 @ 4:39 am
You and Erin are brave and strong. I know because I am also brave and strong and have been through something similar. My son got his diagnosis of Aspergers at age 8 but that one word doesn’t begin to describe the last 17 years of being the parent of a boy who suffers from sensory overload, severe dietary issues, anxiety, and being misunderstood. Your son is lucky to have you both, as mine is lucky to have me. XXXOOOO
March 10, 2015 @ 4:50 am
Thank you Heather for your kind comments. All my best to you and your son! 🙂
March 9, 2015 @ 10:34 am
Our Tyler is amazingly bright, inquisitive and a very creative child. The love and affection I have for him cannot be matched. To see him struggle with this illness breaks my heart. I know he will beat this thing with the help of Erin and Steve, and their dedication to his recovery. I love Tyler…
March 12, 2015 @ 2:44 am
Thank you, Dad for all your support.
March 10, 2015 @ 6:57 am
Dr. Steve,
This is what I love about you. You are so personable and you can relate to our struggles. You understand what we go through. Tyler is very lucky to have you. Thanks for being an angel along our path!
March 11, 2015 @ 1:59 pm
Hi Steve,
Don’t know if you remember me, but we met at Purposeful Connections in Mexico. My wife Joanne was also there. She has a son (now my stepson) that was diagnosed with severe, profound autism at 18 mos of age. Her first intervention was diet. She started him on gluten and casein free at 15 mos of age and later did the specific carb diet. She has done many other interventions from supplements to ABA and lots more. Today at 14 he is fairly “normal” and has not had an aide in school for the past 3 years. It takes a lot of love and a lot of disciplined work. Keep it up my friend! If there is anything we can do, please contact us.
March 11, 2015 @ 6:30 pm
I know this Maria that you speak of. I read her story on someone’s Facebook page and contacted her for help with my son. She was telling me things that my doctors were not even questioning. Life is wonderful that way ….the whispers turn into something BIG and REAL and the connection is made. That was our first step to healing my child. I am so happy to hear this protocol is helping your son! He sounds well on the road to recovery.
March 12, 2015 @ 2:39 am
One day at a time, but currently, the good days are outweighing the bad. Major progress! Thank you for your support!
March 12, 2015 @ 4:05 pm
So your sons initial trigger was not strep? We’ve been doing this for over 3 years and I never heard of the leaky gut theory. Although, makes sense being as though so much of the immune system is in the gut. Has he never had strep?
Thanks!
March 12, 2015 @ 11:05 pm
Hi Kristen,
It isn’t that he has never had strep. He never had classic strep symptoms. That being said, the leaky gut likely allowed the strep to invade his system. My newest post gives some more background as to the initial onset nearly 3 years ago. It is our belief that the strep is merely an opportunist. We still have many unanswered questions about our son. It is possible he has problems with methylation or gene mutation which would have had an effect on his immune system’s function. We will provide more information as we learn more.