Posted By Posting
Jul 18, 2008
cjblack
Carrie
Mommy to William age 3
HELP! Need ideas/answers.
Jen R. suggested I join the forums even though my kiddo is not reflux. He is chronic loose stools, at least GI food reactions.... Here is his story: William was born at 39 weeks and weighed in at 7lbs 7oz. Of my 3, he was the biggest. We started introducing solids at 2 1/2 months or so, with the peds. premission of course. He was eating all the time and acted like he just need more (at this point he was on formula). Rice cereal just didn't seem to sit well so, after talking with the ped. pulled it and waited. At 4 months we tried again. This time with much better success. A couple of months later, a a few foods later, we came to pears. He ate one jar and promptly threw it up at me, they also gave him diarrhea and horrible diaper rash. Sweet potatoes just gave diarrhea and the terrible rash. At 10 months old he started having diarrhea. Nasty, nasty stuff! We went to the ped. and since he was otherwise healthy we were told B.R.A.T. diet and it should go away, not that I hadn't been trying this already. We went on vacation and things just kept getting worse. We kept up the diet and kept him hydrated. At 12 months old, really only about 6 wks after this started, he was allergy tested. Apples and bananas came back positive! Great, we thought. Pulling them did not help. At all. I found a GI. This man hardly even looked at my kid. Said to give him Imoduim daily and ordered blood for CBC and Celiac test. He also ordered a CF test. All came back normal, but the Imodium seemed to be making things worse. It took many calls to this doctor to get him to call me back only to have him say he didn't believe me! Off to a new GI we went. We LOVE her. She set up a scope, took biopsies to check for EOS and Celiac (yes she did the genetic test too). All came back fine. She was and still is stumped. We saw her for a few more months, but that's it. She said to call if we need her, but why go in if there is nothing "new" to report. Recently I took him to the only other ped. GI in town. This guy is a loser! Said he wouldn't do anything already done, even though we are more than a year out from anybody checking for anything and said tha food allergy testing is not reliable in kids under 7. Whatever! I have a 6 year old with food allergies, don't tell me that. (For the record: William only tested positive to apples and bananas that one time. He has been tested for them since and those results are negative. He still avoids them as they make his diarrhea worse.) So here we are, 2 years later and no closer to an answer. I have a kid with chronic, on again/ off again diarrhea, a rashy behind and tummy aches. He was falling off the growth chart for weight, but at his 3 yr check up a couple of weeks ago is now back on it. He weighs 28lbs. I have the paperwork in to National Jewish in Denver. We are stuck in the insurance approval part of the process. I also have the name of a good IBS doctor in Chicago that I may call (still waiting on copies of William's records--they need them to even talk to you about your kid). That's it in a "nut" shell.
Jul 18, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Carrie~

Welcome to PAGER, William doesn't have to be diagnosed with GERD for you to be here. We all know what it is like to have a kido in pain and not be able to "fix it". We are here to support and listen.

Hopefully everyone will pop in soon and have some good suggestions for where to go next. I am all for a children's hospital and maybe a pH probe might be a good thing to ask about?

Keep us up to date! We will be praying for you to find answers and for William to feel better!!

It was nice talking with you earlier! I am too old to be up this late. LOL!

~Jen
Jul 18, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Hi! I'm glad you decided to post. Even though this is mainly a reflux page, we cover all kinds of stuff. Several babies here have allergies. Hopefully some of those moms will be here soon.

Who did the allergy testing for you? I would def. see an allergist. If it was an allergist and they won't do much for you-I'd see a diff one. You seem to have already figured out that not all drs are helpful. Other moms here will agree on that.

I agree with Jen. I'd look into getting a pH probe to check for possible acid levels. Does he seem to be in pain when eating? Does he complain of belly aches?

Jul 18, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Hi, and welcome! I agree, you're totally welcome here reflux or not! I don't have much time right now...we have to get everything off all our carpet so that the cleaners can do their stuff tomorrow morning (ohmygosh I had no idea how big a project that's turned out to be!). I have GI issues myself, and my son has both reflux and food allergies/sensitivities so I will think things over and post when I have a little more time. I know there are some mommies here with kids with CSID, which is an enzyme problem that can cause constant diarrhea...I'll be getting back to your post but I wanted to say welcome and that you're not alone. GI problems...especially 'functional' diarrhea (meaning you're not losing weight or becoming dehydrated or something) are so darn frustrating! Anyone who's experience them can tell you it is not *functional* to be having to constantly run to the bathroom, weight loss or no!
Jul 19, 2008
cjblack
Carrie
Mommy to William age 3
Answering questions
Jen asked me about a ph probe earlier. We have never had a doctor even mention it. Initial allergy testing was done by the ped. whose specialty is allergies and asthma. Foods have also been tested by a pediatric allergist. Our local children's hosp. is pretty good though the GI's aren't. The one we have seen, that I like, is not with Children's and is baffled by my kid. No point in continuing to pay her if she has no ideas. Ya know? He does have days where he says his tummy hurts. Potty training a kid with on again/off again diarrhea is no fun!
Jul 19, 2008
amber f
Hi Carrie~ I don't have much to add but I wanted to welcome you and I hope that some of the other mom's out there can shed some light on it. I can't imagine how frustrated you are. We talk about all sorts of things on here not just reflux. Good luck in your search. Amber
Jul 19, 2008
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
Photobucket
What about Crohn's disease? I don't know how they diagnose it but my grandfather has it and he gets horrible spells of diarrhea if he doesn't take his meds for it. Might be something to reasearch. Also, my middle dd has taken Bentyl for suspected IBS. I don't know if that would help him. Her GI said that it helps with stomach cramping and diarrhea.
Jul 19, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Hi and Welcome. I've seen an allergist (well my son has) trained @ National Jewish and even tho they are #1 in allergist I was not impressed. He was of the mind that since he is educated in medicine and I am not then I know nothing. So, my suggestion is kidswithfoodallergies.org and ask for recommendations for GI/allergists in your area. MDbarbagallo will probably pop on in here and give you some advice as well.

what happens when he gets the diarrhea? does he just have loose stools several times a day? is it mostly water? does he get stomach cramps only during the diarrhea? or does he have them at other times during the day? how is he with dairy? does he have seasonal allergies to pollen/ragweed? does he get sick @ the beach (mine does) my kiddo has issues with food on top of reflux so that's why i'm asking all these ?s.

btw diarrhea can cause diaper rash because you have to wipe several times a day. My kiddo has loose stools often-explosive ones sometimes-and gets rashes often.
Jul 19, 2008
jmom
Josh 12 yrs colic as a baby
Jenna 6 yrs dream baby
Jessica (6/11/07) Silent reflux dx at 3 weeks
Went off meds successfully at 3 mos
Went back on Prevacid 8 mg TID 1/3/08
Have you thought about seeing a geneticist and a pediatric endocrinologist? Hopefully they will set you up with that at the Jewish hospital in Denver. I'm so sorry your family has been thru so much. Big HUGS. Keep us up to date on how you are doing. Cristy
Jul 19, 2008
cjblack
Carrie
Mommy to William age 3
More answers to your great questions!
1) I have been a member for KWFA for years. :) Love them! There are not too many from Oklahoma on there though and we have seen every ped. GI around here. Not too many to choose from, sadly. 2) Crohn's doesn't seem to be the case. I have known people with it and colitis and William is just not that bad. 3) Diarrhea can range from pure liquid to just loose that looks like mushy cream of wheat. Make sense? Not normal 3 yr old formed BM's. On really bad days everything comes out as liquid, as much as 8 times a day. 4) Tummy cramps seem to come and go with no rhyme or reason. 5) He does have seasonal allergies, like most that live here. He comes by them naturally, unfortunately. 6) No beach here. 7) I have a 6 year old with food allergies. So we have watched for them from the beginning. Dairy does not seem to be an issue. I have tried pulling it with no improvement. 8) His diaper rash gets worse as the poop gets worse. It's no fun! 9) We have not seen a geneticist or endocrinologist at this point.
Jul 19, 2008
jmom
Josh 12 yrs colic as a baby
Jenna 6 yrs dream baby
Jessica (6/11/07) Silent reflux dx at 3 weeks
Went off meds successfully at 3 mos
Went back on Prevacid 8 mg TID 1/3/08
Just thinking out loud but if he hasn't always had diarrhea maybe a pediatric infectious disease doctor appt too? Cristy
Jul 19, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi there. I want to share some ideas I have, but I am going to have to wait until tonight...just wanted to let you know I am thinking of you!
Jul 19, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
hi :) i am a mom of a little girl with CSID, this is a sucrase enzyme deficency where she can not digest sucrose. this means we deal with diarehea.... We also deal with normal stools and constipation as well depending on if she gets sugar or her medications or not. There are a few different enzyme disorders that cause diarehea, CSID is only one of them. Fructose is another one that is commonly overlooked and misdiagnosed. both these enzyme deficiencies can be determined by breath tests at a GI office or a endoscopy biopsy. Pancreatic and liver enzyme enzyme deficiencies can also cause diarrhea so ask about that as well. the rash stumps me b/c rash does not (as far as i know i could be wrong!) accompany many enzyme disorders.

i would love to write more but i just got both girls down for naps and i HAVE to do laundry... if you run a search through this site with the words CSID or Sucrose, you will find prior posts i have made to other people with a lot more information. i bet you hear a lot of "oh it's just toddler's diarehea" right? well i'm pretty sure it's not and there is a reason for it and i hope you find it soon, he is such a handsome little man!!! if you have any questions about what we have gone through or need more info, my e-mail is wicked_lg@yahoo.com
Jul 19, 2008
kubicki5
Probably has...but has he been checked for intestinal parasites. They can be hard to detect because they lay eggs at different times. May take a few stool sample to catch it.
Jul 19, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
Hmmmm... what about c. diff? C Diff is a bacterial infection that is started ( and ended ) by being on antibiotics. I also agree about the stool testing. Has he had any done? I'd also be asking about a GES ( gastric emptying scan ) to see if he's dumping ( moving food extremely rapidly through body ). I might also put him on a no fructose / no corn syrup diet and see if that helps. You'd have to be uber diligent ( as I am sure you already are, dealing with food allergies ).

As for the diaper rash, you might try vaseline. Good old plain regular sticky icky super thick vaseline. Lots of it. Lots and lots and LOTS of it.

What's his diet like? Bananas are usually constipating rather than causing diarhea, which makes it a little odd for him to have it worse after bananas.

Diarrhea isn't exactly my thing if you can't tell... Mila barely poops once a day - and she's already on HUGE doses of lactulose!

Welcome to pager!

Jul 20, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
You did get lots of good answers and questions. Gotta love getting a ton of moms together! ;) HTH!
Jul 20, 2008
cjblack
Carrie
Mommy to William age 3
More answers. :)
1) Diarrhea issues started at 10 months old. Would you call that always? It sure feels like it. :) 2) CSID seems like a reasonable answer. Did/ Does your daughter have "normal" -- something other than totally runny -- stools sometimes too? 3) LOT's of "It's just toddler's diarrhea." 4) I am 98% sure he has been tested for parasites. 5) He has been tested for C.Diff. No GES. 6)No frutcose/no corn syrup diet. That's an idea. 7) Bananas are supposed to be constipating, unless you are William. :) He didn't read the rules on that one.
Jul 20, 2008
cjblack
Carrie
Mommy to William age 3
THANKS
Thanks for making me feel welcome!
Jul 20, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
bananas are not constipating to emily either, i am sick of hearing about the BRAT diet b/c it doesn't work for her. Banana and apples have sucrose in them rice and toast are starches, both no-no's for CSID. she can have these in small amounts and not cause diarehea or other symptoms but when she is going through what i call a "flare" in symptoms she can not have any.

if i am totally diligent about emi's diet and do not, in anyway give her fruits or veggies, (or just give approved ones she tolerates) she has completely normal stools that she actually needs mirilax for her to evacuate. when i give her small amounts of stuff with sucrose she gets loose stools but not watery, which they still consider diarehea.

he has probably had the whole bunch of stool tests run right? I HATE doing those lol

oh yeah you can go to www.csidinfo.com to check his symptoms. i have more to write but my dd is terrorizing the baby!
Jul 20, 2008
cjblack
Carrie
Mommy to William age 3
Emily's mom
I am going to email you off list.
Jul 21, 2008
cjblack
Carrie
Mommy to William age 3
Got the call from National Jewish this afternoon. William is approved to go! Now we have to get him scheduled. I am hopeful they will also get us in with one of the GI's at Denver Children's.
Jul 30, 2008
cjblack
Carrie
Mommy to William age 3
WWYD?
so here's my WWYD question: We have gotten William into National Jewish in Denver. It will probably be a year before I can take the time to make that trip. They tell you to plan on 2 wks. They would do all the allergy testing and probably send him to the GI team at Denver Children's. OR I can follow another lead and go to an IBS specialist in Chicago. Chance that he could get in sooner, but not sure. If it's not soon then it would be at least Christmas if not next summer before we could get there. I am torn between the 2 choices. Right now he is okay. Tomorrow, that could change.
Aug 08, 2008
dljpan
forum monitor
Hi, can I suggest you make a new post. Since this thread is older the moms will not see it unless they search for it. I am sure the moms would love to hear from you.
Check with your
doctor first!