A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Wednesday, July 28, 2010

Poop- or lack thereof

Yes, I'm gonna talk about poop again. And probably again after that, too. Poop is such a huge part of Little Bird's Autism. Actually, it's the lack of poop: chronic constipation. I've talked about this so many times, I can't even think about going back and giving you links to read old posts. Just trust me.

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)


Acting Balanced Mom said...

my son's OT keeps after me to try a naturopathic doctor... he has the opposite issue - regular extremely wet stool... and she seems to think that we are missing a dietary/mineral component... but a full work up is $$ and of course not covered by insurance... so we are playing trial and error with the supplements like you are... hope you can find something that works consistently!

Leigh Hope Fountain said...

Good luck getting to the bottom of it Dani, (no pun intended). Hope all is well with you, and hope all becomes well with Little Bird's poopinzees. XO

Leigh Hope Fountain said...

Good luck getting to the bottom of things Dani! (No pun intended). Hope all is well with you!

Ren- Lady Of The Arts said...

I always find these posts you do about LB poop interesting because both my monkeys have issues with constipation. Since I started reading your posts I have been more aware about how it affects them. I now put it in same category of 'tired, hungry or thirsty' when they are overstimulated or just off.
We started using epsom salt baths after I read about you doing it on your blog- I did extra research and really feel that it helps soak out the toxins in their body, relaxes them and contributes to their regularness.
LB is lucky to have you as her warrior.

On another note- if you get a chance check out this post by The Claw.

Devon said...

I do not have an autism kid, but my anxiety as a kid led to some poop problems. My gut also has some weirdness to it, and I'm not autistic, but my mood will really change when I haven't pooped for a few days. Us bipolar folks also have gut troubles! Corn and yogurt are my secrets. Corn or popcorn because you don't digest it and it sweeps everything else along, and yogurt (organic!!!!) because of the healthy bacteria. I've also heard that activia does wonders for bad digestion. I'm wondering if too much fiber might work against the bird? If she'll eat watermelon, bring it on - it's a lot of water which helps things slosh and come out well. Also a good tickle (if she will tolerate it), releases hormones and uses her stomach muscles, both of which stimulate a release that can help poop move along. Oh poop, what a grand topic, eh!

Heather said...

I always wonder if there will be a point in our lives that we don't talk about poop anymore, wouldn't that be glorious?

Good for you for keeping on top of it! :) You are such a great mommy to LB!

Lynn said...

I can't get enough poop talk. I need to know more about her poop. When she eventually does go, is it really hard or loose? I must know exactly what her poop looks like. As Audrey would say, "email her poop to me."

sugar magnolia said...

Aaaargh, I feel for you. I have had constipation issues with my ds (age 6). Used to give him Miralax; now he goes nightly without, but still have issues sometimes and have to use an enema. No fun for any of us.

Grandmother Crone said...

Constipation is a big issue with me and getting worse as I get older. While I don't have the physical difficulties of autism, I still suffer. Cranky, impatient, pain, I could go on.
When I am stressed, when I don't drink enough or at all. I also discover ed psyllium husk powder. You can find it in a health food store or Whole Foods if you have one nearby, it is a natural plant or herb. I use the powder mixed in juice and shook (?) up.
I think your sweetie would need just a bit mixed in juice, then 8 oz. of water after.
BTW, Wouldn't we love to see those drs. after they haven't sit for a week.

Elizabeth @ My Life, Such as it is... said...

I'm so glad to read that someone else's child has poop issues! My son is not autistic but ADHD and still doesn't poop on the potty at 5.5yrs. He goes only about once a week if that. We're trying the fiber gummies and laxative route plus play therapy for the ADHD. Kiddo just doesn't seem to recognize when he needs to go but does tell us when he's "poo-ed myself".

visiting from SITS

Dani G said...

I knew I wasn't the only parent dealing with this!
It really is so common among kids with special needs.

Yes, we've tried the fiber gummies. She doesn't like them. Plus, I don't think its nearly enough fiber. She does take the metamucil which is vegetable fiber. The psyllium husk usually contains gluten.
The activia does work well for people with just a slight irregularity. LB is on a dose of probiotics that is WAY higher than any activia could ever provide. And still... we struggle.

Devon said...

Anyone tried flaxseed oil?

Dani G said...

we haven't used flaxseed oil, but we have used ground flaxseed. I mix it into pasta sauce or pizza sauce (same thing, different application!) and always into oatmeal.
Greg puts it in his oatmeal each day and I put it into my cereal, which is fiber one- no wonder I don't have this issue :)

Tooje said...

Autism or no, I think it's amazing how in tune us mommies are with our children's bowels. I worry that there is something seriously wrong with my son's internals because he poops WAY too much, in my opinion. We're talking 4-6 times a day, maybe more on occasion.

It stinks that she has to go through that. :( And I can only imagine what it's got to feel like to her. :( I hope you find the right combo/solution very soon.

I'm blog hopping today...happy Thursday.

Laura @ The Things I Said I'd Never Do said...

I don't have any advice but I just wanted to say that you are a totally awesome mom for putting up a serious fight for some answers!

I hope you find the right treatment soon.

Ticky and Mimi said...

I totally appreciate and *love* your terrifically honest posts.

Tammy P. said...

Very informative post, thanks! My Aspie also has chronic problems with this. We had considered removing gluten but haven't worked up the nerve (> meltdown risk d/t being deprived of foods she likes). She does well with the occasional laxative or stool softener. We also try to push the fluids/fiber with mixed success. Might try the flaxseed; good tip.

Tilly said...

Here via 'blog gems'. We're very lucky that we don't have any poop problems with our aspie son. Though I have to say he poops a huge amount for a little boy who doesn't eat very much (very fussy eater). Hope something works for your little one very soon - and well done for telling the doctors how it is!

jazzygal said...

Hi Dani G..back here via Jen's Blog Gems!

Wow..this so resonates with me. My WiiBoy still constipated and nearly 11 years old.

The very scary part of this condition is that YES the poo is in there and if it doesn't come out the right way it will come out the wrong way....beware of perforated Bowel.

I DO NOT say this lightly...we rushed WiiBoy to hospital in early January in agony. he couldn't walk. His bowels were badly distended :-( he's on Movicol since then. We tried wheat free diet for a while (he has distended tummy too even when not constipated)seems to have helped but too difficult a diet to maintain.

Keep hollering DaniG..'cos i too intend to AND to sort out his distended tummy!

here's the Poo Post I wrote!!:


xx Jazzy

Suzie @keatsbabe said...

Oh goodness, the trouble we had with my son failing to 'go' for 10 days at a stretch! Lactulose or dark brown sugar in water did the trick, so I am forever amazed he still doesn't have any fillings. Good teeth or constipation? What a choice!

@jencull (jen) said...

Luckily for us we haven't had either extreme, but what a nightmare. Poor Bird, it is so uncomfortable. Going to have to go through your archives to see if there is an update! Jen

Amanda said...

We're going though this with our son too. The worst part - probiotics make him even more constipated. We need Dr. House.

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