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just got back from pediatric GI doc (off topic long rambling)


Forum: June 2014 Playroom

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  #1  
April 3rd, 2014, 11:10 AM
rachelc0's Avatar 2 sons, 3 angel babies
Join Date: Dec 2013
Location: Minnesota
Posts: 534
for my son Keegan. and my emotions are sort of all over the place with this (pregnancy really doesn't help it either).


a few days before Christmas, Keegan (who is 2), started having diarrhea out of the blue. i wasn't very worried about it because it was holiday time and with all the parties, i was sure he had only been eating sugar and sweets. plus they were home that entire week with DH so i didn't worry about the daycare issue. i figured if it wasn't the sugar, it was maybe a little bug that he picked up and would just go away. the next week came and he still had it. again, not concerned. he has an older brother who goes to preschool, i figured must be a bug. another two weeks pass before i started wondering what was wrong with him. he had nothing but diarrhea (no harder stools, etc) for almost four weeks when i told DH we should take him into the clinic.

his primary doc is practically everybodys, so i figured we would have a better chance seeing an urgent care doctor and go from there. they sent us home with a few stool sample kits, said fill them up and bring them back. they were testing for viruses and other bugs that may have been in his intestines. it only took about two days (we made sure to use a few different diapers, otherwise we could have had the tests done in about 4 hours) and returned the samples. a week goes by before i finally hear anything back. clinic calls to tell me all his tests came back normal/negative. i said what should we do, he still has bad diarrhea. she was able to squeeze us into an appointment slot to see our doc.

during this time we were still seeing family from the holidays and everybody had to weigh in on what their take was. and most people kept saying celiac or a gluten intollerance. so we mentioned that to the doc, who said that really wasn't his area of expertise, but we should still run a blood test for it. ran a blood test for that and a few other things. one of the tests showed slight inflammation somewhere in his intestinal track, but it wasn't anything to extreme to become a problem (they didn't even tell us this, we just found that out today) and his celiac testing came back negative. they said he could still have glucose intollerance, but we would need to see an allergist for that. they sent us home with more stool samples to take and submit.

did em and returned them after a few days. then it was another few week wait to hear back. while waiting, we tried going gluten free (just to check), dairy and milk free, low calorie, low carb, we eliminated juice and limited fruit. nothing seemed to work. when the stool samples came back, they said we were giving him too much juice and that if we just cut back on it he would be fine. i wanted to reach through the phone and choke her! i told her that i took them two weeks to get back to us and for two weeks at least, this poor kid has been drinking nothing but water and lactose free milk and it wasn't helping. her next suggestion was to see the pediatrician.

so we made our appointment, and got him in. the pediatrician we used we've seen a few times and he is very good, so i had some high hopes. he ordered more stool samples. said he wanted to try and figure out where the diarrhea was originating from, if it was his stomach (it would be most likely a food allergy), if it was his intestines, then some sort of issue there. another week, tests come back normal. well at least they told us it was normal. by this point it was March and we were so frustrated. he had been in and out of daycare because their rules are if you have a watery stool, you can't stay. which i respect because if one of the kids has a flu bug, then they need to go home. DH and i were missing so much work and i kept telling the provider "we know it's not the flu, you're really not going to let him stay?" and she said no.

the doctor finally referred us to the pediatric gastroenterologist which is an hour and a half north of us. of course we had to schedule the appointment three weeks out. but talked to the daycare and she said as long as there were no 'blow outs' she would let him stay, knowing that we were doing everything we could to find out what the issue was.

today was our big day, and i have to admit i didn't have very high hopes. i figured we would leave the facility with no more answers then when we came. but actually i was quite impressed. the doctor had reviewed his chart from the clinic and all his testing and the first thing she says to us is "this poor guy has had more testing then most of my kids (patients) have when they are referred here". i was thinking "yeah i know, i've been paying on the medical bill". she said the last thing she wanted to do was more testing (THANK GOD!) and had determined based on his test results (that she went over in detail with us, when the clinic did not) and his charts, that it was very likely one of three things. either a bug or virus in his intestines that was missed, ulcerative colitis, or crohns. so she wanted to run him on seven days of antibiotics to see if that would help. if it didn't, then it was very unlikely a bug, and we would need to do a colonoscopy on him to check for the other two. but she kept saying "thats our last case senerio". i definitly don't want my two year old to have to have a colonoscopy unless he really really needs it.

so i left the place feeling very hopeful. maybe a simple dose of antibiotics would cure this entire thing. then i started to get mad, thinking "why didn't anyone at the clinic think of that?" i know they don't want to just give out antibiotics to anyone that asks, but if tests are coming back normal but he still has diarrhea, why wouldn't that just be the next logical solution? then i started to get worried and guilty thinking "what if it doesn't work. what if he has some GI disorder that he'll have the rest of his life. what else could i have done while i was pregnant or when he was younger to avoid this". so i'm trying to stay positive about the whole thing, because that's really all i can do at this point.
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  #2  
April 3rd, 2014, 11:18 AM
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*Hugs* That is quite the ordeal you have gone through. I hope the antibiotics work and that you get your answer shortly. I don't blame you for your frustration with the clinic - I am surprised they were so uncerned about it. Try not to focus on what you could have done differently (easier said than done) - I am sure there is nothing that you did or could have done to have changed this. You are doing the right thing in getting him checked out - that is all you can do. Keep us posted.
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  #3  
April 3rd, 2014, 12:54 PM
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My friend has been going through something similar with her 3 year old. He had on again off again throwing up and diarrhea that got so bad he was hospitalized for a week. They never found ANYTHING but treated him with antiparasite drugs which made the symptoms stop. However, they came back after the first round of meds. He just came off round 2 so hoping for the best.
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  #4  
April 3rd, 2014, 02:34 PM
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I hear you, questioning yourself and actions you took during pregnancy and in his early years, and then I hear myself saying the same thing about this baby and their heart issues. I have been CRAVING spinach. If spinach 3x a day hasn't built a right ventricle by now, it's not going to and there's nothing I can do to fix it. Knowing the thoughts in MY head, I can tell you that you have to let go of the thoughts, fears and concerns in YOURS. (I also know that this is easier said than done. Mom guilt bites big time.) It sounds like you have followed every logical course of action, right down to the potential food allergies and ample testing (none of which are easy on the Mommy). Hopefully, a dose of antibiotics will end the issue, however sometimes they can kill the good bacteria in the body too. Did they give you a probiotic to battle that? Have you tried one with him yet?
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  #5  
April 4th, 2014, 07:19 AM
trusting and believing
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Wow, that's quite a journey, and a frustrating one. I was frustrated just reading it! All this time and tests, and still no clear answers. You probably weren't prescribed an antibiotic by the other docs, because stomach bugs are typically viral and antibiotics don't affect viruses. I'm a little surprised that the pediatric GI went that route. But please do keep us updated. I was praying as I was reading for both you and the little guy. You have done a lot in addition to the medical visits to try and help him out with the avoidance trials and such. Just fyi, if it were a milk allergy, the lactose free milk wouldn't help. It still contains the protein component of the milk (which is what causes the allergy), just not the sugar component which would cause an intolerance. My son has both a milk allergy and intolerance. We do coconut milk or rice milk instead of cow's milk. I do hope you have answers soon.
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  #6  
April 4th, 2014, 08:58 AM
MrsPalumbo's Avatar Super Mommy
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Lurking here but my SIL went through a very similar thing with my nephew when he was a baby. He's almost 8 now and he's much better than he was. He didn't have a solid bowel movement until after 3yo. It was terrible. He had an endoscopy and colonoscopy before he was 1 1/2. He had severe GERD and lower GI issues, although I'm not positive on a specific diagnosis. I know you've probably scoured Google, but I came across this and wanted to pass it along....




Common Pediatric GI Complaints




Diarrhea/Gastroenteritis portion seemed strikingly similar to what you have described. I truly hope you're able to get some answers soon!!!
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  #7  
April 4th, 2014, 10:11 AM
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How are you doing today? Any new info or success with the antibiotic? I was thinking about you this morning. I hope you're feeling a little better today about everything.
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  #8  
April 7th, 2014, 09:01 AM
rachelc0's Avatar 2 sons, 3 angel babies
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as the doc said, the medicine was going to be horribly tasting and he may buck-it. and it has lol. giving him meds before wasn't too big of a deal. he has now taught himself to throw up so he doesn't have to take the medicine. so it's a battle. it's a 3x a day- seven day thing. so technically we are only onlike day three. nothing has changed, but i also know it can be a few more days before it would start to work. it's hard to dicipher what is diarrhea from another issue, and what he may be having from the antibiotics. so we're giving him probiotic as well. to make things even better, while DH was "watching" them, he swollowed a penny. so that's always good :S if nothing has changed by the end of the week, i think it will be a safe bet to assume it didn't work. which would be really hard to swollow.
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  #9  
April 7th, 2014, 01:04 PM
Super Mommy
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He swallowed a penny?? For sure, or just one on the counter randomly went missing? What a little stinker! And now he's throwing up just to avoid the meds? GAH! I feel your frustation with this little one...
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  #10  
April 8th, 2014, 11:31 AM
AtomicMama's Avatar CopperBoom!
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Oh my goodness! I'm so sorry! What an ordeal I understand your frustrations! I'm sorry it's been such a drawn out process. Please don't feel guilty! It's NOT your fault, at all. I'm hoping that it isn't anything serious, something they can treat very easily.
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  #11  
April 14th, 2014, 10:15 AM
rachelc0's Avatar 2 sons, 3 angel babies
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keegan update; we finished his round of antibiotics last friday, and for a few days things were starting to look up. hi stool (TMI) that used to be so watery was actually looking more like paste. it's not a complete turn around, but def looking in the right direction. then i changed a rather odd diaper ... it had one solid formation of stool (about golf ball size) but the rest was diarrhea. but i saw something that was actually solid and that was super exciting! (i never thought i'd be so excited about poop)

but this weekend, i don't know what the heck happened, but we have completely regressed. every diaper is watery again, and now his stool is so acidic that he is getting horrible diaper rash. but we're trying to keep positive, thinking maybe this diarrhea is a response to the antibiotics (he's had this once before while taking something for an ear infection, but it was WHILE TAKING, and after adjusting the antibiotic concentration, it pretty much cleared up). we have four more days before we have to report back to the doctor (and possibly schedule his colonoscopy).

we're holding out that now the antibiotics are through, he will start turning around and getting better, but before a diarrhea diaper, he still complains of stomach pain. keep holding out hope for us, we sure are!
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  #12  
April 14th, 2014, 10:52 AM
trusting and believing
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Thanks for the update. I said a prayer that someone would figure out what the problem is and fix it sooner rather than later.
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  #13  
April 15th, 2014, 05:01 AM
mrsdaiwa24's Avatar Amy, soon-to-be-mama of 2
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(((Hugs))) I'm sorry this is happening. Poor little guy. I hope you can find a successful treatment soon!
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  #14  
April 23rd, 2014, 06:52 AM
rachelc0's Avatar 2 sons, 3 angel babies
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UPDATE: we were so hopeful that we wouldn't have to do it, but because things still aren't getting better, we've scheduled Keegan's colonoscopy & endoscopy (whichever is through the mouth). scheduling it didn't seem as big of a deal as i thought. i was at work so i couldn't really 'break down' like i probably would have anywhere else. and after letting daycare and inlaws know about it, i had sort of forgotten about it for a few days.

until the packet showed up from the hospital with big letters on the front that say 'preparing your child for surgery'. i know this isn't considered surgery (or at least i'm not going to call it that) but getting the packet about what to expect, what we should do, etc made it all real. i seriously hate hate HATE the idea of my two year old having to have a procedure done that DH and i never have.

now we are a race against the clock, trying to have some answers for his stomach issues before Karson is born, and he is due in less than two months. Keegan goes into his procedure next wednesday so DH and i took the entire day off of work. what's worse is it isn't until 1:30p but he can't have any food after 4a, and no beverages after 10a. poor kid has to starve all day.
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  #15  
April 23rd, 2014, 06:54 AM
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Poor kid! I really hope that the procedure gives you some answers and Keegan is back to him old self soon!
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  #16  
April 23rd, 2014, 10:22 AM
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Poor little dude - hopefully this will provide you with the answers you are looking for.
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  #17  
April 23rd, 2014, 11:26 AM
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Poor sweet baby... I hope it gets better and that you find answers! Hopefully its not crohns or ulcerative colitis. I can only hope that maybe its a weird parasite, and maybe all he will need is a two week round of antibiotics.
My Dh's sister (my SIL) has Crohn's and I know hers is very manageabe. However I know drinking, smoking, and certain foods or combinations of food can give her a hard time... but fortunately she has figured out what most of those are. Im sorry Keegan has to go through this, I just hope you get answers soon and that this is only temporary!
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  #18  
May 1st, 2014, 07:27 AM
rachelc0's Avatar 2 sons, 3 angel babies
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time to update: yesterday was the big day for the colonoscopy and endoscopy (through the mouth into the stomach) and i was seriously dreading it. just as everyone was telling me "it's way worse for the parents than it is for the child" and they were right. while i was an emotional rollercoaster all day, Keegan took it like a champ.

the hardest parts were not letting him eat before, and being there when he was put under. but luckily the proceedure in whole only took about 30min (at most) and we had him back. the doctor came by to talk to us and said that everything "looked normal" but that doesn't mean anything can be eliminated just by what the naked eye can see. so they biopsied throughout his entire GI tract, and also pulled more blood for more testing. she said we should have those test results back sometime early next week. so we're right back to the waiting game.

my biggest fear is that everything comes back normal, but he still has his diarrhea. because then i don't know where we would go for answers. if it's a condition or an allergy, we can take that because there are ways to help treat it or help him cope with it. i'm tired of hearing "everything came back negative/normal" because it doesn't answer any of our questions.
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09/03/2014 - Chemical Pregnancy
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  #19  
May 1st, 2014, 08:03 AM
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Thanks for the update. At least each "test" is telling us what it's not. After all this, it'll probably be something so easy and simple and you'll be like we went through all this just to find out that!
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  #20  
May 12th, 2014, 08:33 AM
rachelc0's Avatar 2 sons, 3 angel babies
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UPDATE: we've gotten some of the test results back.

his celiac screen, ulcerative colitis screen and crohns screen all came back negative/normal.

we're still waiting to hear back on some of the food allergy tests that she is running (and god-knows how long that will take) but his little tummy still isn't getting better, it actually seems to be getting worse.

starting to lose my marbles over all of this stuff.
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09/03/2014 - Chemical Pregnancy
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