Despite my disappointment with Emma’s last brain scan, the fact is she continues to improve. Richard reminded me of this over the weekend. Emma continues to make headway. She continues to progress. For years Emma was so constipated we were advised by various gastro intestinal specialists to give her Miralax (a laxative) every day, which resulted in explosive trips to the toilet, hours of clean up and it never did actually help Emma with her chronic constipation.
Emma’s constipation began when all the other “autistic” behaviors began to increase, at around 13 months old. Emma’s food choices became more limited, her speech tapered off, her desire for contact diminished, she became more obsessive and rigid in her “play”. And she became chronically constipated, often not having a bowel movement for more than two weeks. The first few days she seemed untroubled by the need to relieve herself. But as the days turned into weeks, we saw her distress and discomfort mount. Typically Emma came home, having not had a bowel movement in over a week, her little legs shaking, she ran/walked, with her bottom jutted out at an odd angle, then collapsed onto the floor and bounced up and down. A look of fear and pain crossed her face.
I tried to talk with her about it. “It’s okay, Emmy. Mommy will stay with you. Just try to let it out.”
“Noooooo!” Emma screamed. Then she grabbed my hands and pulled them around her waist.
I crouched down and held her while she sat on the toilet screaming. It felt as though I was watching her go into labor. Sometimes we would be there together for an hour, Emma screaming and me trying desperately to soothe her. There were countless times when I could not believe the enormity of her poop. How such a small child was able to evacuate such an enormous object from her rectum was beyond me. It was agonizing. But she would vault from the bathroom, leaving the toilet clogged, exuberant, as though the last week of hell had never occurred.
More often though, we left the bathroom defeated and exhausted. She was not able to go and I was unable to help her other than to comfort her. To watch your child in such physical pain, day after day is relentless, I cannot imagine what it must have been like for her. This went on for YEARS. I was frantic trying to find someone, anyone who might be able to help her. After going to half a dozen medical doctors specializing in GI issues I began to look for alternative therapies. I took her to a cranial-sacral doctor, a homeopath where we did a homeopathic chelating process, trying to rid her body of heavy metals. We had stool analysis, urine analysis, blood drawn, allergy tests done, special gluten free, casein free diets were implemented and tests, tests and more tests. It was because of her constipation that I started taking her to Master Ho, a Qigong master who I heard about through another parent of an autistic boy. She swore Master Ho had been the catalyst in helping her son. Her son was now at a school for learning disabilities, communicated well and was miles ahead of Emma. Hundreds of thousands of dollars later, (our insurance company would not cover any of these therapies as they were deemed, elective and alternative) Emma still had chronic constipation.
“It doesn’t hurt! It doesn’t hurt,” she screamed as her leg shook up and down, kicking me in the chest over and over again as I knelt in front of her where she was seated on the toilet. I sat with her in the bathroom like this every evening. It was our routine, doing whatever I could think of to ease her pain. I sang to her, tried to do deep breathing exercises, massaged her stomach rotating my hands against her stomach in a clockwise manner as instructed by one of the many practitioners I took her to, encouraged her, but I could not remove her pain and fear.
One does not need a medical degree to deduce that this is not normal or healthy. We took Emma to a Pediatric Gastroenterologist, Dr. Timothy Buie at MassGeneral Children’s Hospital and had an endoscopy and colonoscopy done when she was four. Dr. Buie is brilliant and I am filled with gratitude and admiration to him for his ceaseless work in the field of GI issues in autistic children. The test results confirmed our suspicions, her gut and intestines were a mess, she had inflammations, scaring, ulcerations and yet the remedy remained illusive. Miralax was again prescribed with talk of possible surgery down the road.
I spoke with one more autism specialist who had been a Pediatric Emergency Room doctor before choosing to focus his work on autism. He came to our apartment and looked at Emma who lay on the couch whimpering.
“Can you help her?” I asked.
“What are you holding on to?” he asked.
I chuckled, thinking he was making a joke about how it’s always the mother’s fault and then he said, “Sometimes the mother unknowingly causes or exacerbates her child’s problems.” He looked at me with concern and sadness.
“What am I holding onto?” I repeated, incredulous.
“Just think about it,” he said. “And in the meantime we can try a few other things.”
He went on to list a number of “treatments” such as Epsom salt baths, prune juice and the like. Things we had long ago given up on. I ushered him to the door, thanking him for his time and went back to Emma where she had not moved on the couch.
It was at this point I decided I was not going to continue giving Emma the Miralax. We had been trying it for almost a year with no improvement. The only other option was for us to give her an enema. Something she did not like, but tolerated. Those first few days I gave her an entire children’s enema. She immediately pooped. Each day I gave her a smaller amount, but she continued to have success. By the end of the second week of our new regime, Emma has using a quarter of the bottle and doing it herself. By the end of a month she was putting the bottle nozzle near her bottom and was able to go. After several months Emma was able to have a bowel movement on her own with no interventions. I remember those first few months, being amazed that this method was working. Over the last few years, we have had a few set backs, times when she wasn’t able to go and I had to get out the enema bottle, much to her dislike. But those times are infrequent.
Richard reminded me of the bathroom hell we were in for so many years and how over time she has gotten better. It is but one example of how Emma continues to progress, slowly.
When I am really sad, Richard will say, “remember poop hell?” And I do. During that period I could not imagine a time when it would not be a constant worry, a constant horror awaiting me when I came home from work.
Emma continues to progress. Emma continues to improve.