Don't read this if you are squeamish. This is pretty detailed, but I don't know what to do and I am extremely frustrated with Chase's heiney. I'm so incredibly stressed out about this.
This isn't a funny poop story. It's a medical cry for help!
So, a history: Chase had Hirschsprung's disease. He had it surgically corrected when he was 2 1/2 weeks old. The surgeon was able to remove about an inch of lanrge intestine with a pull-through. It was a one-step procedure...no colostomy or anything (Thanks, Dr. Attorri- YOU ROCK!).
Since then, Chase has just always been a really poopy little dude. Like, 6-8 poopy diapers a day. Always. He's 16 months old now. You do the math. That's a lot of freaking diapers. I've asked the surgeon, the ped, and the GI doctors, and they've all said that some kids are just poopier than others. Guess we're just lucky. No one seemed concerned.
Oh, and the GI doctor said that yes, Chase may have some reflux, but it's not bad enough to medicate since he wasn't losing weight (I think that was when he was 7 months or so). The throwing up was constant. All the time. My carpet looks like hell.
So...moving onwards and upwards to the last 3 months...the poops have gotten worse. The diaper rash is mean and relentless. I'm kicking myself for not buying stock in Desitin as we are single handedly financing the entire company. We started eliminating foods, and it seems that when we took away milk, the reflux was better as were the diapers. We switched to soymilk for a week and it seemed to work, but then it got exponentially worse.
And on top of everything else, he's only gained 5 ounces in 4 months. He's started crawling since then, and is definitely more active, but still. He is a little guy.
*Ok- funny poop story amongst all my angst: I checked Chase's diaper before going to bed and it seemed a little squishy. So I picked him up, resting his butt on my forearm with his head on my shoulder. As I did this, it apparently smooshed everything that had been in the diaper up and out the back of his pants, splooshing on my arm and dripping-- like pumpkin pie batter-- onto my leg. Oh. My. God. I can't even put him down anywhere, I'm so afraid that more will come out. So I run, holding him under his arms, a foot in front of me, to my bathroom across the house, praying that Bryan is somewhere close so we can engineer some kind of solution to getting him undressed, undiapered, and into the shower without any additional, um, crap. I can't tell you exactly how we did it, but somehow we were able to peel him out of the layers of soiled jammies and rinse him off. Anyhoo.
Back to today. Chase is off milk, soymilk, rice milk, and wheat. Planning for meals is impossible. Chase refuses to eat almost all the substitutes that I give him. His diet consists mostly of bananas, rice chex, green beans, sweet potatoes, applesauce, grapes, and peaches. Diapers are still gross, but less gross than they have ever been. I have nightmarish thoughts about Celiac disease.
I took him to the pediatrician and she did an allergy panel and the preliminary bloodwork to test for celiac. The results came back today: Negative. For everything. No celiac (yay!) but also no allergies. WTH??? Seriously, every time the kid had milk, he'd puke. NO ALLERGIES? Not a ONE? WHAT IS WRONG WITH HIS SYSTEM THEN???????????????????????????????????????????????
I've called the GI guy. We're going to see him next week. Oy.
Oh, and another thing. I feel really stupid about this. But since Chase has been eating larger, less cut-up foods (take green beans, for example), I've noticed that they come out in his diaper, well, whole. Like someone dumped a bowl full of beans down his pants. Seriously. That whole. Same for black beans, corn, etc. And the sweet potatoes...they come out looking essentially unchanged. At first I attributed this to his lack of teeth (something that I had no experience with since Ian had a mouthful by his first birthday), but I'm beginning to wonder...is this normal? Is this an indication that nothing is being processed? Does this happen to anyone else's kids?
So. HELP! SOMEONE! ...anyone...?
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6 comments:
Are you a member of any support groups for the families of children born with HD? I am the volunteer director of Pull-thru Network and I really believe that we can help you with the poop problems and the frustrations you are feeling. Check out the PTN website - www.PullthruNetwork.org. You are not alone with what you are experiencing with your son. I'm so sorry that the doctors are so clueless about the problems after pullthrough surgery, especially for HD kids.
Best regards,
Bonnie McElroy
PTNmail@charter.net
OK, I am clearly NOT the expert on poop, although I have seen my fair share of it. I have seen the whole-bean thing many times in my boys' diapers. Mainly Eli's, my oldest...and he has been a very healthy kid; I mean, he's never had any digestive issues or anything like that. I think they just aren't chewing their food; you know, eating too fast.
Could Chase maybe be getting too much fruit? That also wreaks havoc with Eli...makes him poop like crazy, and not to be graphic, but it's very, very mushy or liquidy. Always after he's had a lot of fruit. It would probably be the same for Evan, but he hates fruit. So. There you go. More than you ever wanted to know about my kids and their excrement.
Milk made Evan spit up a lot too, when he was younger. Not so much anymore. He might not be allergic to it, but he might be sensitive to it.
Yikes. I hope that GI guy gives you some answers. Ones with easy solutions.
Oh, you have my sympathy and commiseration. It's a really long story but we've been dealing with lots of poop issues with Nick, now nearly 6, since about 18 months when he had a really nasty stomach virus. He also had issues with vomiting milk. Switched to rice milk and things were better but still multiple BMs. Last year, another stomach virus and things got really bad again, he didn't gain ANY weight for 18 months but did grow some. Did the celiac panel, various and assorted stool tests, allergy panel... Nothing came except celiac IgG (I think). Went to see the GI Dr. and he prescribed a trial of Alinia siting a possible sub-clinical infection. It worked for about a month. Down to 1 bm or less per day. Then started having more BMs per day, did another run with Alinia and things were better. We'd been giving Nick rice milk, switched to regular milk and things were even better. One theory is that the rice milk was giving him a form of toddler diarrhea seen in kids who drink too much juice. He still had a pattern of several bms in a day and then none. My current theory was that he developed IBS from the infection because there is definitely a connection between diet and bm consistency and number.
Anyway, last week diarrhea started again, but accompanied by a fever and he's still got it. I'm afraid we're on that merry go round again and that it's something more serious, dropped the stool samples off this morning. Yuk!
(Oh the joy of internet discussing your child's bms with a perfect stranger.)
Very similar story here. Did not have H's disease, though. My son (7) has celiac. If your son has been off wheat, and then you took the test, it is not a valid test. He must be consuming wheat/gluten, for the body to produce the antibodies that are being tested for.
My son's celiac disease is under control, but we still are having the poop problems. Going to a specialist in Chicago next month for more help, as GI at local children's hospital was not helpful.
Hi Laurie, poor Chasey-fruits & juice will cause runny poops. Does he get any protein and fiber?? That might help. Mostly I'm so excited about the comment from Bonnie McElroy-hope she can help you. Hugs & Kisses to all!
Love~Mom
Hi there! I wanted to introduce myself. My name is Jessica and my son is 16 months old and also has Hirschsprung's Disease. I came across your blog sort of randomly and read this post. I feel the same way you do! I should definitely be part owner in the Desitin company. :) Anyway it made me smile. Check out my blog here: http://motherhoodispoop.blogspot.com. I feel like i'm drowning in pooh some days!! I'd love to chat with you about our little ones. Feel free to email me!
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