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May 12 2009

Oh poop

I’ve been writing this blog for a little over three years and have covered a wide variety of topics. But there’s one I’ve never touched, because I wanted to protect my son’s privacy. Someday he may read this little online journal and I didn’t want to embarrass him. Or give his girlfriend/wife tease-fodder. But I’ve hit the point of needing help; Dr. Google can only do so much and I’m at a loss.

A’s digestion has been craptastic (yes, a pun) since the moment of birth. A few hours old, he was given a little formula

SQQQQQUUUUUUUUUUUUUEEEEEEEEEEEEEKKKKKKKKKKK…. Now is a good time for me to state that if you’re a flat out, rabid Breast Only And If You Use Any Formula You’re The Cause Of All Evil believer, just don’t even start with me. I lived in the breastfeeding consultant’s office for A’s first three months. I have never had my boobs so man-handled. When your kid is starving in front of your eyes, you give him formula. Now back to my original post.

A few hours old, he was given a little formula and promptly threw it back up. When we finally had to supplement him because nursing was not working, he went onto soy formula. That stopped him up so badly that we had to add dark Karo syrup to his bottles. Lots of dark Karo syrup, to the point that it looked like chocolate milk. At one point he had a barium xray to figure out why he’d just be sitting there on the floor and upchuck. We joke that we moved from our condo because it was cheaper to buy a house than replace all the carpet.

When he was old enough for milk, he hit the Terrible Twos. At 15 months. And stayed there until his third birthday, when we discovered, completely by accident, that he was considerably calmer off cow milk. Noticeably. Remarkably. Amazingly. Calmer.

Potty training was hell. Unabashed hell. When I hear other moms complain about potty training, I just look at them and comment that I have stories that could curl hair. Things were trucking right along until J was born and everything went to shit. Literally. I’d walk into a room and there’d be a little poop staring at me. Or a little trail of poop. A would try to poop and wouldn’t/couldn’t. This would be after practically forcing him into the bathroom. He was also wetting his pants on a daily basis.

So, given a family history (that’d be me) of bladder problems, off we went to the pediatric urologist. Nope, nothing wrong with the whizzer, but the xray showed he was constipated up, over, and around. The entire large intestine, packed solid. Off to the pediatric gastroenterologist. That’s when our friend, Miralax, came into our lives. (He’s four at this point…and this is only part of the reason why I say he’s lucky I let him live to be five; behavior was another part)

Off and on to the pediatric GI over the next three years. Still problems with making it to the bathroom. Still ongoing pants-wetting/pooping. On and off wheat/gluten. I finally laid down the law with the GI doc, saying I was done with treating the symptoms and by God, we’re finding the reason. A had his first endoscopy in October and it showed eosinophilic esophagitis, no sign of celiac.

Off to the Eosinophilic Esophagitis clinic at Children’s. A second endoscopy and colonoscopy in February. Upped the Miralax to double the adult dose. Met with the EE team again last month to review testing. The EE team has no freaking idea why he has EE or gets so constipated. The EE team has no idea why he still craps his pants at least once a week. The eosinophilic esophagitis could be due to reflux, but not sure. Decide to take a “wait and see” approach…basically a “we have no idea and could use this time for patients we can help” approach.

A gets so constipated that he throws up. Happened several times last spring, which is why I finally lit into the GI doc. He missed a day of school last week from puking, and is home today for the same reason. We were slowly trying to lower his dose of Miralax; gave that up last week and he’s back to a capful a day, twice a day. Double the adult dose; he’s barely 48 pounds. One of the shortest in his class at just over 48 inches…and that disturbs me, given that I’m 5’11” and my brother is 6’4″. His four-almost-five year old brother is almost as tall. And the doctors who say that he’s stable on the growth chart at the 25th percentile can bite me.

So why am I posting all this? A giant poop post?

I am desperate for help here. Something is wrong with my son and I can’t find out what. He’s been tested for celiac twice, both times during the endoscopies, and both were negative, as was a blood test. Added to all this is that he’s on an ADHD medication that screws with his appetite. We think that the reflux may be due to him finally eating when the meds wear off late afternoon until bedtime and then lying down. I believe that blogging is a community, and I have to believe that someone knows someone that might be able to help me. I am open to homeopathic and/or Eastern medicine; I gave Western medicine its fair shake and it couldn’t figure out what’s wrong. Dietary changes, you name it, I’ll do it.

Someone, please, any help. There’s something not right with A. My Mom Sense has been tingling for years, and it just keep jangling louder and louder. The answer is out there somewhere, but I need help finding it. I’ve hit a dead-end.

***************************************************

A: I’m sorry. I’m sorry I had to finally tell this story, but I need to find answers to help you. If you get teased about this, I’m so sorry. If this makes you uncomfortable because I shared so much about your pooper, I’m sorry. But, my sweetie, I’m at a loss. I will do anything to help you, and unfortunately if it means plastering this story up on the internets for God and the whole world to see, I’ll do it. I’m going to find the answer, sweetheart. You shouldn’t have to go through this. I know you’re upset that you still have accidents, I know you’re confused that you sometimes throw up for no reason, and I know you’re getting old enough to know something isn’t right. The answer is out there, my love. I’ll find it. I promise.

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  1. RC

    Off to retweet. No ideas… None. I can tell you this – we’ve had similar issues at times, but less often then you have had. Little Dude will puke for no reason (I’ll think he is getting sick again), but then he is fine. Usually it appears he is stopped-up as all get-out, which we realize after the fact.

    That being said, I can still chalk his up to his dairy protein allergy and some minor reflux issues at this point.

    As for your guy – I’m lost. But as I work in healthcare (don’t let that get around), I will ask around…

  2. Tendrils

    Oh! Poor Kid! Ignore my Twitter reply! I thought he was home with the flu bug! Poor guy! 🙁 I wish I had answers for you! {{hugs}} to you both…

  3. s@bd

    oh sweet woman – your mommy sense is SO RIGHT to be tingling.

    I wish I had a solution!
    Have you tried a naturopath (sp?)?

  4. TeacherLori

    (((((((( big hugs ))))))))))
    Been there, done that with the potty training. It’s hell.
    But you definitely have something else in play. I pray you find a cause AND a cure.
    Blessings on you and your boy,
    Lori

  5. childsplay

    Have you been down the alternative doctor route? There isn’t a lot available outside of Co., but we’re in alt. medicine mecca, and it’s where I’ve started turning for anything that is unexplained by MD’s.

    🙁

    It’s a horrible feeling to know something is going on but not know what..especially when it involves the pooper of a kid.

  6. cursingmama

    I almost hate to say this —- but… Mayo?
    I know they don’t / can’t help everyone but it could be a shot.

  7. Chelle

    No advice here, just lots of good thoughts for you guys. And, wine, lots and lots of virtual wine. Hope it helps.

  8. Heather J.

    Um, not sure what happened with the links in my last comment … sorry.

  9. Robin

    I wish I had something concrete to offer, but all I’ve got is listen to that spidey-sense. You KNOW there is something there that needs to be found. A has the best possible advocate in you, and you WILL make them listen to you and find it.

    ((((bighugesquashyhugs))))

  10. melissaz

    Oh wow. I’m so sorry. I wish I had something other to give you than a hug.

  11. Queenie

    Thanks for stopping by and visiting my blog today – I can’t believe you took the time after I read your post….my heart goes out to you. Stick with your instinct, honey, you will find an answer. NO ONE will advocate for your son like you will. Keep searching – there WILL be an answer. I’d even write to Dr. Oz for help. Anything.
    Strength brings persistence which reveals hope. Good luck, Queenie (Sharon)

  12. Jamie

    We are leading parallel lives. I am so very sorry. There is a disease of motility that I know almost nothing about other than the name. ( http://www.agmd-gimotility.org/PediatricV.html) Have you looked at any of this?

  13. Leah

    E-mail me, I have a lot of ideas. My son has the same thing but not as severe yet.
    Leah from HP

  14. Tiruba Tuba

    Hey. I adopted my daughter when she 11. She came to us with pooper problems. Big time. Everything had supposedly been tried before she came to us. We took her to a Gonstead chiropractor and worked on calming techniques (because going had become incredibly stressful by the time we got her) and we haven’t had an issue in 2 years. She has underlying health issues like cerebral palsy and fetal alcohol so there are other contributing factors. But the chiropractor was what helped. Also, if you don’t already, by law we avoid the ABC’s: apples, bananas, and cheese. Don’t know if this helps cause every kid is different but it is cheap and easy. Has to be Gonstead though.

  15. Jennie

    A friend’s younger brother had the same issue. His poor mom would practically be his labor coach on the toilet. It turned out he had actual anal retention and saw a therapist. It helped a lot. I guess once the contstipation starts it can become problematic pyschologically and it’s just a downward spiral. Worth checking into at least.

  16. Jennifer

    Wow – my heart goes out to you and I can say that we have been there done that with several of your issues…. my little guy when he was an infant would go for days and days without pooping..picture this – an infant who hasn’t pooped in over 4 days, he’s in severe pain and miserable and nothing and I mean NOTHING is making him go…so we were taught how to <> stimulate his hiney…needless to say, my little guy had projectile poop that went everywhere through that method…quite a scene. After a week I was furious at the doctor and wanted to know what the heck was going on. We know he was already diagnosed with bad reflux/gerd and we tried the whole booby thing too and nothing going with him…he decided he could only tolerate the $18.00/can Alimentum formula and he is lactose intolerant. For 2 years he had issues with pooing and being constipated…did the laxitives, prune juice, you name it. Doctors found nothing wrong internally…so we kept digging. We also noticed some other issues with my son about being very sensitive to many things…and he was diagnosed with Sensory Processing Disorder when he was 3 (not on the autistic scale though…just super sensitive). I learned that SPD children usually tend to have issues with pooping because they do not like the sensation/feel of the whole poo process – it is painful to them so they hold their poo. This makes it worse because then they start to get backed up and things get more painful and then when they finally go it hurts like all get out causing them to further want to hold their poop the next time….bad cycle. We started to use a stool softner and lots and lots and lots of positive reinforcement on the potty (you can email if you want more info) and we broke his cycle of holding it for so long. He is 6 now and still has issues with poo but it is much better. Hang in there and trust your instincts – keep digging!

  17. MFA Mama

    If you find an answer, please let me know. My almost-four-year-old is on an entire capful of Miralax a day, throws up regularly, and is on Neocate (elemental formula) via g-tube and a buttload of reflux meds. Nobody knows why. He is also below the 3rd percentile for height although he’s near the 50th for weight and both his brothers are in the 95th for height. Sounds familiar. We’ve done endocopies and barium studies, and tried going to a world-famous fancy-pants pediatric GI doctor, and all we have is “maybe he’ll grow out of it by five.” Sigh.

  18. goodfountain

    Sorry that I don’t have specific experience with this to say we had it, and here’s what worked. But I do have thoughts.

    Have you tried IgG testing?

    There’s some debate about the accuracy of the results, but there is, I believe, some truth to the idea that food sensitivities can wreak havoc on our systems.

    Another thought – MFED – Multiple Food Elimination Diet. Written about in a book by Doris Rapp. If you google that you’ll find a clear explanation.

    Since it’s digestion issues you’re concerned about – I believe the first place to start is what what he’s eating.

    From there -I’m not sure. But it’s a place to start.

    Good luck!

    (PS: Clicked over here from your post on Hopeful Parents)

  19. Cathy

    I don’t know if you’re willing to travel, but you might consider seeing Dr. Baptist at Allergy Link. His website is outdated but gives some basic info about him (www.allergy-link.com). He is in Kansas City.
    He works a lot with food sensitivities (IgG) and with kids with ADHD, sensory issues, etc. He just might be able to help you where others haven’t.
    And if you’re wondering, I found your blog because I get google alerts on EE because I have two kids who have it, and yes, I go to Children’s in Denver for their care 🙂 even though we live in Kansas City.

  20. mrsvierkant

    (((Hugs))) I wish I had advice, knowledge, or help of any kind. You are right to respect your mommy sense on all of this. If you do decide to visit Mayo, let me know.

  21. Another EE Mom

    This totally sounds like the struggles we’ve been through with our son, including the potty training. Our boy has EE and it can effect their entire digestive system from a physical and psychological perspective. Not sure where you’re at in your EE treatment but it sounds like you need to be visiting the steroid and elimination diet routes. Our son has been seen out of Children’s in Chicago for two years (after 4 years of misery) and we have been pretty successful with the 6 food elimination diet. Did steroids at the beginning to get him under control. Have they eliminated eosinophilic gastritis or colitis during the scopes? If these are present, my understanding from our GI is that they can only be treated with systemic steroids. You may want to also consider Children’s in Cincinatti. I’m heading there at the end of July for the APFED conference. The more we can all learn about EE the better. I’d love to correspond with you to share my experiences in hope they help. I have spent years beating my head against the wall (as have so many other EE moms) but I think I’ve reached something closer to the acceptance stage of this disease (except on the really bad days or after a bad scope!). Send me an email if you’d like to talk.

  22. magneto bold too

    My brother suffered like this as a child. Wouldn’t go for weeks and then I remember the screaming and mum literally having to take the enormous poo out of the toilet and bury it in the garden cause it couldn’t flush.

    He was on laxatives all the time. Now as an adult he is better. Lots and lots of exercise helped.

  23. Virginia

    Hello – I am a trauma surgeon, and a friend asked me to look at your blog and see if I had any ideas. Let me state clearly at the outset that my comments are NOT to be considered medical advice, as I have never seen your son. Your story is very moving, and I thought I might offer up a couple of ideas.

    My first thought upon reading your story was that it sounds a lot like something called “Hirschsprung’s disease” which is a disorder of the innervation in the lower part of the colon. I would bet that your son’s doctors have already considered this, but I didn’t see it mentioned in your blog. The diagnosis is easily made via an outpatient procedure, and the condition is eminently correctable with surgery.

    The other thing that I wonder, is whether your son has seen a pediatric surgeon. I know he has seen gastroenterologists, but it might be worthwhile to get a surgical opinion, as they see lots of severe constipation. And, as a surgeon, I would like to state up front that about 80% of my patients never require any kind of operation. What I’m saying is that surgeons can (and usually do) find a solution that paradoxically doesn’t involve operations.

    Anyway, good luck, My heart goes out to you.

  24. Karen (pediascribe)

    Lost your email in my inbox but tonight I was laying in bed and all of a sudden the word “hirschbrungs” came to me. Of course, I had to dig deep in my inbox to find the link to your post.

    Then I find out a trauma surgeon beat me to it! 😉

    I have actually cared for these kids as infants. And a nursing school classmate of mine had a brother with it.

    Something to look into anyway.

    I’d explain it more, but I know you’ll google it anyway. 😉
    🙂

  25. ASDmom

    If you haven’t yet, you should read the book Healing the 4A Disorders by Kenneth Bock. If your son is allergic/sensitive to cow’s milk, I’d bet there are other things too, and this book may help you pinpoint them. It’s been a tremendous help for my son, who was diagnosed with moderate autism less than a year ago and, with a lot of dietary changes and nutritional supplements, has recently been rediagnosed with mild Asperger’s.

    My kiddo spent over a year going from constipation that lasted for days to days of explosive diarrhea, so beyond the behavioral and verbal gains, he’s a much healthier and happier little kid.

    Good luck – I hope you find a solution!

  1. Looking forward « Never A Dull Moment

    […] to me magneto bold too on Oh poopAnother EE Mom on Oh poopmrsvierkant on Oh poopCathy on Oh poopgoodfountain on […]

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