Need help with GI issues

[Lizard]

I'll try to make this as short and clear as I can, but I tend to ramble. :(

DD2 is 5.5 months, and since birth she's had intestinal problems. Her belly gets severely distended, then after a BM it goes back to normal and she becomes happier. The distended belly makes her very, very unhappy and often disrupts sleep. It seems to be a gradual thing, she's "normal" right after a BM and then it gets bigger and bigger gradually. To me, it's almost like she doesn't have the muscle control to push it out, and eventually it just floods out. :( Oh, I should add that she gets VERY stiff, to the point where we can't sit her on our lap because we can't bend her legs. Her BM's are very, very runny and often stinky. We haven't started solids yet and she's EBF.

I should add, I've been on an MSPI diet since she was 2 weeks old, because of blood in her stool. At 2 months she still had blood despite my strict diet, so we were referred to her ped GI. She diagnosed her with MSPI and reflux (without doing any testing). I've started adding in soy and some dairy since Christmas, and nothing's changed with her. So I'm not sure it's MSPI related.

We have an appt. with her ped GI on the 27th for a follow-up. What kinds of things should I request? Has anyone gone through GI issues with their infant? I feel like no one is taking us seriously so far and I'm getting "she'll grow out of it" a lot. But mommy's instinct isn't telling me that.

Another item that may or may not make a difference... she isn't mobile at all. Doesn't roll in either direction and doesn't attempt to. She has started to tap and grab toys recently. We do lots of tummy time but after just a couple minutes she puts her head down, like she's tired. I brought all of this up to the ped, she said her muscle tone seemed good so she wasn't concerned. But I figured it was worth mentioning to you guys.

I'm sure there are more details I can add but I'll leave it with that. I'd love to hear some ideas. I'm so frustrated and I hate seeing her in pain. :(

[Ellyn]

I don't have much experience with this (DS saw a ped GI once for his spitting up), but I wanted to let you know that you should not give up on your mommy instinct. If you don't get results with this dr, keep trying with him/her or another dr. I was brushed aside after insisting something was wrong with DD, until someone listened (breathing and diaphragm related)...something was in fact wrong and I was right all along (I just had "that" feeling). She ended up with surgery and some other things, but I was so glad I didn't give up. I know the feeling...good luck! :)

[Dally]

Your poor baby. :( And poor mommy, too. It must be difficult to watch your baby go through this.

I have no advice, other than to echo the PP. Keep pursuing this, including getting 2nd and 3rd opinions from doctors, until you find a solution. It sounds like they haven't done a whole lot of testing yet. Sometimes you really have to push, unfortunately.

Good luck. Please keep us updated.

[littlemia]

Have you looked into delayed gastric emptying, also called gastroparesis? I don't know a lot about GI issues so I could be way off, but this was the first thing that came to mind.

[Lizard]

Have you looked into delayed gastric emptying, also called gastroparesis? I don't know a lot about GI issues so I could be way off, but this was the first thing that came to mind.

Hm, I looked that up and it doesn't really match. Thanks for the info though, I will keep it in mind. One of the symptoms of gastroparesis is malnutrition/weight loss, and DD doesn't have that. That's an odd thing really, when I look up her symptoms, many of the problems that come up have weight loss or failure to thrive as a primary symptom. She's 5 months and probably 17-18 pounds, so no FTT issues here. :)

I did read some info on intestinal blockage today, and it seems to match better than other things. I'm just not sure though. The 27th can't get here fast enough it seems.

Thanks for all the good thoughts... don't worry, I'm not going to let this fall by the wayside. They'll definitely get an earful at the appt.

[mkvh]

Liz--My husband had an intusseption of his large intestine as an infant. From what MIL says, his symptoms were similar to your DD's. She said he had incessant, uncontrollable "fussiness", extremely runny stools--explosive most times, vomiting. He DID NOT have FTT--he was 30lbs at a year. He wasn't diagnosed until he was a year old when he suddenly presented with an entire diaper full of blood and was taken for emergency surgery where they removed like 2 ft. of his intestines.

All that to say that it took a really, really long time and a dire situation for her to get a diagnosis. She knew all along that something wasn't right, but she couldn't get any answers.

I agree with the PP that your persistence is key. Hang in there!

[MrsSpencer]

Just lost my post ugh!!!

DS has the opposite problem..trouble going and his drs aren't doing anything either (which is stopping at his next appointment as I'm demanding some testing or something).

FIL had the problem the pp had, except it was over 50 years ago and in a poor town and he still has major problems today (his bowels developed scar tissue) and will block his bowels (intestines) and a few times a month he's in the hospital getting it unblocked. They can't fix it, because the scar tissue they said would come back (I don't know the details, but they can't fix it). I agree...fight for your daughter..and don't worry about what they say isn't wrong with her (like ds drs are telling me)...mommies know their children..we have that instinct for something.

Keep us updated!

[mcgwigan]

Lizard Does she also vomit? A blockage can also cause vomitting. I guess if I were you, I would call either the pediatrician or the GI doc to see if maybe you could get in earlier. They can do an ultrasound to see if there is a blockage.

[Lizard]

mcgwigan - She doesn't vomit, no. She doesn't even spit up very much. Everything seems to be centered around her belly.

I looked up the info on intussusception, and it does match quite a bit of what's going on. I'm writing it down to bring up to the doc. I think I'll also take pictures of dd's swollen belly, and what it looks like after it goes down. We all know that kids don't show symptoms when they're actually IN the office, heh.

Thank you all for your ideas and input.

[MrsSpencer]

I know what you mean about them not showing symptoms..ds is smiling in the office and screaming after we leave...go figure. Good idea about the pictures...I took a video of ds going to take more today to show his dr.

[mcgwigan]

Lizard Is her belly hard when it is distended? Our pediatrician feels DS belly and always comments that it's good when it's soft, but a bad thing if it is hard-although, I don't know what they look for if it is hard. I hope you get some answers soon!

[Lizard]

Lizard Is her belly hard when it is distended? Our pediatrician feels DS belly and always comments that it's good when it's soft, but a bad thing if it is hard-although, I don't know what they look for if it is hard. I hope you get some answers soon!

VERY VERY hard, yes. Like, rock hard from her rib cage down. Then after she goes, it's completely soft. :(

[merjmo]

VERY VERY hard, yes. Like, rock hard from her rib cage down. Then after she goes, it's completely soft. :(

Are you able to take her to the ped when it's like that for him/her to see?

[mcgwigan]

Lizard I agree-if you can't get in to the ped or GI Dr while her belly is hard, are you able to maybe go to an urgent care center? Maybe try to call either the GI dr or pediatrician next time and see if you can get in. I hope you get it figured out. Keep us updated!

[Lizard]

Are you able to take her to the ped when it's like that for him/her to see?

I think I could, provided I could catch it at the right time and they had appointments available. One nice thing about my ped, they're not overly busy and we could probably get in. Hmm... I'll consider that next time it happens.

[mcgwigan]

Good luck! Keep us updated!

[Lizard]

I just wanted to update, since we had our appointment this morning. I had hoped to take her to the regular ped before now, but of course all last week she was either fine, or had issues late at night. Go figure.

Anyways, the ped GI is considering 2 things. One, she's totally fine and just taking a longer time than most babies to "learn" how to poop properly. Her intestinal spasms may have something to do with this. Two, it could be Hirschsprung's disease. The problem with #2 is that she's a big, healthy baby and Hirschsprung babies generally have issues with failure to thrive and vomiting a lot. Also, it's diagnosed with a barium enema, and she doesn't want to put her through that right now. So, we're going to be more proactive with her anti-spasmodic drops, add in a probiotic and see what happens for a little while. If there's absolutely no improvement in a month or 2, we'll have to do the barium. :( I did bring up the intersuseption, and she said she doesn't really match that because the anti-spasmodic drops help her. I'm still keeping that filed in my head though, in case we have to do more in the future.

Anyways, just wanted to say thanks to everyone for your help, and I will continue to update when we know more.

[Lizard]

Just bumping up, mainly for myself because I need the info, heh. DD seemed to grow out of this issue somewhere around the 9 month mark and became a very happy, active baby. We thought it was behind us, but now in the last 2 months it seems to be returning - she's 17 months.

She poops about once a day, but every week or so she has a HUGE poop that goes through clothes, diaper, everything. It's very soft (all her poops are) but it still seems to take her forever to go, and afterwards she actually lays down because she's so worn out. :( Also, she has a very large belly - we always joke about her beer belly (she can't see her belly button) but then her belly gets even bigger and bloated about a day before she goes. So, pretty much the same stuff that was happening at 5 months, only she doesn't seem to be in pain this time around.

Guess we'll be heading back to the GI again. I need to re-read all the info you guys suggested.

[BTB]

I think it's the right choice to get back in with the pediatric gastroenterologist now that it's recurred. Sounds like s/he did right by your DD the first time through, and I hope things go well this time, too.