When Marley was 2 ½, her stool sample showed that she had enormous yeast overgrowth and bacterial dysbiosis (a lack of good bacteria) in her GI tract. Most likely the result of overuse of antibiotics, and possibly even passed on to her by my poor GI tract health caused by consumption of processed foods, pasteurized dairy products and my own lack of good gut flora as I was bottle fed as a baby. Marley was already dairy-free because she had a horrible IgE allergy to milk and taking her off gluten didn’t seem to do much for her. She was still having 5-10 loose stools per day.
After much consulting with the DAN! Doctor, we decided that she needed to go on the Specific Carbohydrate Diet. The SCD diet allows no sugar, (even VERY little fruit) and no carbohydrates in the form of bread, rice, potato, etc. The starches were out. Obviously, all hydrogenated oils were out. All food colorings were out. We were left with nuts, eggs and meats. It is very much like the Atkins diet.
As much as Marley was a good eater, I was scared to try but as soon as I started the diet, I knew she was a responder. She regressed and became physically ill. The first day, she was green. The second day she threw up and that is when the “black mud” started to flow. I was starving the yeast out of her. Her yeast die off was fast and violent. It went on for a week.
Now, autism is not for sissies. The amount of poop issues that we as parents deal with is insane. The messy poop, the poop smeared on the walls, the painful constipation and I will stop there to spare you anymore. But I will just say that Chris is permanently scarred by those years.
After that first week of yeast die-off, Marley was markedly more “connected”. Her eye contact was better. She seemed happier although she still was non-verbal. I think that diet worked for her because it controlled the overgrowth of yeast but still her dysbiosis was a problem. Even with continued probiotics. So her digestion was improved, but still not cured. We stayed on that diet for 2 years before going back to a more traditional Gluten/Casein/Soy Free diet with very low natural sugar found in fruits.
As the years passed, Marley’s GI problems only seemed to get worse, converting to more alternating constipation and loose stools. By the time she was almost 4, she became verbal thanks to hyperbaric oxygen therapy. (A story for another day!) But most distressing were her words. By age 4 ½, she would lift up her shirt and say “tummy hurts”…”boo boo kiss”. She was getting up in the middle of the night screaming. I went up to her room nightly only to find her curled up in a ball on her bed screaming in pain. When calmed down she would say, “tummy hurts”. I didn’t understand. She was pooping. Sometimes twice per day. Although sometimes it was still loose. While at a DAN! Conference in 2007, I pulled Dr. Bock aside. He was presenting that year. I asked him how I could help her. He told me we needed to get her scoped ASAP.
I was distressed. I was feeling helpless and at a loss as to how to treat her pain. In a desperate attempt to get her seen by a GI doctor, I took her to the pediatrician and begged her to phone in an emergency appointment at the GI doc. The best they could do was an appointment about a month out with a nurse practitioner. I said…whatever…let’s get her in!
So the next month, Marley was in. I told the NP about Marley’s problems. She listened intently. Then she pulled in the attending GI doctor. He told me that unfortunately, kids with autism have GI problems and there is nothing they can do. That was it…I had had it. I started to cry. Right there in front of him. And In front of a stimming Marley who was watching her portable DVD player. Then I started to beg. He must have felt sorry for me, so he agreed to do blood tests and a stool sample. But…he warned….if it all showed normal, there was nothing else they could do.
What do you know? All blood tests were normal and the stool sample was too hard to test. A clue? Not to the attending GI doc. But to the NP…yes. She called me up to tell me all the tests results were normal but she would see if she could get the attending to agree to a GI X-Ray. He reluctantly agreed. We came in the next morning and went straight to X-ray. By that afternoon, I got a call. It was the NP from the hospital. Her words stay with me. She said “Marley’s X-Ray showed that she is loaded with stool. There is no empty space in her colon or rectum at all. No wonder she has such horrible pain. This is the largest amount of stool I have ever seen in an X-ray. A problem like this is years in the making. The daily stools you are seeing are just the stool that can get around the impaction which was why it is loose.” Then she went on to tell me that normally, when constipation is this severe, they admit the child to the hospital for 3 days and put a tube up their nose and down their throat to pump fluids until everything is flushed out. However, she didn’t think this was possible with a child like Marley. Beside, BCBS had recently stopped paying for such interventions. So instead, she put Marley on regime of MiraLax, warning me that it is very difficult to clean out a child this impacted at home.
For a year, we played this game of …Marley is okay….then Marley is constipated again….then large doses of Miralax to fix it…then she gets bad again. This game was frustrating to say the least. And my poor baby was not getting much better. I was missing something. I knew it. I also knew she needed to be scoped to find out what was that something was.
So I was back to the attending GI doc again…a year later. Now Marley was 5 ½ years old. This time, I begged and pleaded for a colonoscopy. I told him how we weren’t getting anywhere and my daughter was suffering. He gave me reasons why they shouldn’t. I begged some more. I wore him down. He agreed but warned me that he was 99% sure they wouldn’t find anything. But I think he wanted to be done with me, so he ordered the works. He ordered an endoscopy & colonoscopy. He ordered a spinal MRI to rule out those problems.
Well, the MRI showed she had a syrinx in her spinal cord. A rare and incidental finding, but still important. The Colonoscopy showed signs of chronic constipation and murkiness. But the real finding came with the endoscopy. It showed redness and irritation. The biopsy showed she has eocinaphilic esophagitis. Her level of eosinaphils was 100. It is supposed to be less than 5! This means when Marley eats certain foods, white blood cells attack her esophagus.
We were sent straight to the allergist who did a skin prick test. She showed allergic to dairy (which we knew), eggs (which we thought and were told by a previous allergist that she outgrew), shrimp and cats. Our cat of many years had recently passed on. Now all we had to do was remove the eggs from her diet and keep her away from cats so she wouldn’t inhale the dander and keep her away from shellfish. Done!
Viola! Like magic. Her GI health finally started to get better. Her behavior started to improve. The meltdowns started to subside. I took her off the MiraLax and put her on a small dose of daily Ionic magnesium. She was a different child. We were on the road to getting my baby back.
I had spent years trying to uncover her GI problems and had to beg and cry to get the GI doc to listen. And even he was shocked by the findings. Let that be a lesson to ya doc! Our kids need intervention. MEDICAL intervention. I hope that next time he sees a kid with Marley’s problems, he won’t just dismiss them as autism problems. He will see a child with a medical problem.