Constipation and/or diarrhea is considered a co-morbid condition of Autism. My bird seems to have been born constipated. The first time we ever consulted a doc about it was at 12 weeks old. We were visiting family and friends in L.A. and she wasn't pooping. The next time this became an issue was at 7 months old. We were on Mackinac Island in Northern Michigan. It hasn't gone away since. Here are the things we've tried over and over since then:
Karo syrup, mineral oil, prunes, glycerin suppositories, probiotics, prebiotics, healthy yeasts, miralax (stool softener), metamucil, benefiber, enemas. I could go on.
When she was 3 1/2 we took her off all dairy. Within a week, she came running up to me declaring, "I pooped!" What?! I didn't hear screaming, crying, etc. We were on to something. About a month later, we took her off gluten. For about 9 months, she was pooping every other day without screaming in pain. She was doing really well during this time. Then it became every 2 days, then we recognized that we needed to do something else. That was around the time of her first round of flagyl. We were shocked by the volume of poop that followed. Where was all this coming from? How could she possibly fit all this poop in her tiny little body? I'm talking 4 times a day of poops so big, I wasn't sure they'd flush. After that first round of flagyl (last december- you can look back in the archives for your reading pleasure), we noticed that she pooped with a lot more ease. Did the flagyl help heal her gut enough for her to poop better? Who knows, but every time she's on it, she definitely gets cleaned out and then does so well for a few weeks. She's had 3 rounds in the last 9 months. I'm slow to put her on it again so soon. There are some side effects/hazards I worry about. Plus, the worst thing would be for the bacteria in her gut to grow resistant to the powerful antibiotic.
I've had thoughts like, "well, it's all gonna come out sooner or later, so I'll just wait." But the truth is that after 3 days of not pooping, she becomes withdrawn, overly hyper and extremely sensory seeking. She might flap more, spin, bang her head on things. She becomes more scripty than usual and can't focus enough to slow her brain down. She can't even finish one script before she begins another. Sometimes she stops talking altogether. It's so sad. Its so terrible to see your child go through this. As soon as she does poop, she's back: calmer, attending to tasks better, and more "present". There's definitely something to this.
Last December I decided to see the "best" pediatric GI doc in town. It took me 4 months to get in. When we saw him in March, he admitted that he had no idea why this was happening and even seemed unconcerned. All that really bothered him was how skinny she is. He suggested we add gluten back into her diet in effort to increase the foods she'll eat and pack on some pounds. She's 44 inches and 33 pounds (although that might be 2 pounds of poop in here- for reals!). We tried to add the gluten, remember? Didn't work. So, at the follow up appointment which was last week, I once again aired my frustrations and determination to get to the bottom of the constipation. His suggestion: metamucil, miralax, senna laxative (which we hadn't ever tried). He palpated her abdomen and said that he couldn't feel any poop in there. I suggested that could be because 36 hours earlier I'd given her a liquid glycerin suppository and she'd gotten some poop out. I also said, "trust me, it's in there. Because how can she poop such massive amounts when on the flagyl and so little otherwise? Where is all the poop?" In effort to appease me, he ordered an abdominal x-ray. His nurse called the next day: they found a mass of stool. Yeah, no shit! Well, actually... a lot of it. Their suggestion: senna laxatives, metamucil, etc. Well, here we are. I gave her 2 doses of the senna and 3 doses of metamucil in the 18 hours and NOTHING happened. This is not a normal, healthy child we're talking about. She's not going to tell me her tummy hurts from all these interventions: she's going to scream, cry, tantrum, bang her head and possibly hurt herself. I might not be able to leave the house with her. She's also not going to say, "mommy, I think I have to poop now so I'll just go into the bathroom." No, she's going to go where ever she is. So, I will have to keep a diaper on her if I start to see the signs. Autism sucks. Leaky gut sucks.
This is a battle I fight. The doctors don't take me seriously. Finally they see what I've been telling them: there's poop in there and it doesn't come out on its own; her behavior changes when she doesn't go. But then they kind of throw up their arms and say they don't know what to tell me. Then they say to come back in three months for a check up. I spoke with Little Bird's pediatrician a few days ago and told her they found this mass. She said, "good for you for following your mommy intuition. Now go blog about it!" So, that's what I'm doing while I wait for the laxatives to take effect.
my basket from CVS (the cameras are for Lena to take pics of the bird at camp)