Our family vacation was a disaster.
Thanks to Dr. Boris, the autism and allergy king of New York, Christian's myriad allergies are normally under control here in New York City. The special nose spray Boris prescribed for Christian has alleviated the worst of his suffering in New York City. You name it, Christian is allergic to it: gluten, trees, grass, wheat, mold and so on. Because Christian also has a severe case of Inflammatory Bowel Disease, whenever his allergies are triggered, his bowel disease rapidly worsens. As all autism parents of kids like mine know, the immune system and the gastrointestinal system are one.
Christian used to love visiting my parents' home on Nantucket because he can swim in their pool and because we make daily trips to the beach, which he loves. To watch a kid who works so hard 40 hours a week trying to re-learn saying his name have a blast learning to surf is a beautiful sight. What kid deserves a vacation more, right?
However, unbeknownst to Andreas and me, Nantucket was experiencing record high pollen and ragweed levels. The New York City allergy nose spray was not cutting it on Nantucket. These allergies soon triggered the nightmarish IBD. Whenever Christian ran on the grass, walked around the town, tried to ride a bike, he started screaming, crying, lying on the ground and eventually pounding himself on the stomach.
Thanks to a strict SCD diet, low on nuts, high on coconut, the IBD has been under control. There is no cure for IBD. It is a horribly painful and debilitating disease that came close to ruining his life and made school and therapy all but impossible until his pain was under control. Andreas and I watched our formerly healthy baby regress physically, cognitively and biologically into a screaming miserable, pain racked 2 year old who had 10 messy diarrhea stools a day. After a bowel movement I could not merely clean Christian off with wipes, I had to put him in the shower, or if it was summertime, clean him off outside with the garden hose. Like many parents we tried to contain ourselves as many doctors labeled this problem as "behavioral." I am still trying to understand how a 2 year old forces himself to have diarrhea and what he gets out of it, other than misery.
It was a family vacation. The only vacation we take in a year. My siblings and their children were there as well. It would have been wonderful for Christian to enjoy their company and get to know everyone better. Instead whenever we were outside, poor Christian was screaming, hitting himself, biting his hands until they bleed and having diarrhea. We soon were back to 10 messy stools a day. Parents of kids like Christian know what these screams are like: absolutely heart piercing. Andreas and I had to work over-time trying to attend to Christian, keep him comfortable in an air-conditioned environment with all the air purifiers we could find, while one of us was with his younger brother, trying to allow him to have the vacation experience Christian cannot have. We struggled to explain why his brother is screaming and smearing his bowel movements- again.
My poor shell shocked family hears the screams, the cries, sees the diarrhea, the blood. All attempts at "fun" activities were aborted and everyone felt so sad and helpless. The pain Christian endures because of his bowel disease, a disease we feel triggered his autism, is unbearable. He lies on the floor screaming, biting through the skin on his hand, as sobs wrack his body. As any parent knows, Andreas and I would do anything to alleviate our child's horrendous pain. If only I could have the pain, his disease. If only I could have cancer instead, anything, in exchange for stopping this pain.
We cut our vacation short and returned home early. Christian's health rapidly improved and the IBD was back under control. I had to buy new clothes because so many of the pants and shorts Christian wore on vacation were unsalvageable. The bowel movements reeked of acid and ate through some fabric. I had to throw everything out.
My intention in sharing this horrific story is not to shock this unshockable readership of AoA. Parents of kids like Christian know all about this heartbreak and torment. I am writing this because I want to express my support and validation for all the parents who have felt their child's pain questioned and marginalized by the GI / measles study recently published. To watch your child live with this pain is horrible enough, to see your child's pain dismissed or ignored or beyond human endurance. And we are parents who can endure a lot.
I was so confused to read that Dr. Hornig and Dr. Lipkin claimed that their 38 person study definitively proves "Wakefield wrong." From what I understand the Lipkin and Hornig study utilized the exact same lab that Wakefield used when he discovered that his patients did indeed have the measles in their gut. How does that prove "Wakefield wrong"? That lab is correct on in cases where it does NOT find the measles virus? I admire Dr. Honig and Dr. Lipkin and know they have made great sacrifices in pursuing autism research. They have also received tremendous community support from grateful parents, who I believe have the right to expect more from this team.
Rather than framing the study's conclusions as definitive proof of the unspeakable GI disease afflicting so many autistic children, the talking points focused exclusively on "Wakefield is wrong!" and "no measles in the guts of ASD kids!" and how this is great news for the MMR! Wow, I can hardly wait to tell Christian all this good news! He will be so thrilled!
There were 38 children in the study, all were vaccinated, only 5 had the type of regressive autism my son has, there was no control group and all of the gut tissue was collected 18-24 months post MMR. They expect us to believe that is a definitive study? I say it is only a start and a disappointing one at that. While the CDC and the study's authors celebrate their results, hundreds of millions of American autistic children endured unbearable pain today and they will endure it tomorrow and the day after that. I guess that fact illuminates the key difference in these two studies. One study is about trying to understand what is wrong with so many sick, regressive autistic kids and the other is about providing alibis.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.