New - Looking for information

[mamawith2girls]

Hello All!

I do not have a child diagnosed with IBD, however, it was recently put on our radar, and I was hoping to get some information from the real experts (parents).

My daughter, now almost 4, had severe GERD from birth to 18 months. She vomited multiple times a day, and ended up being FTT (failure to thrive). She received behavioral feeding therapy and since 18 months, has been a wonderful eater, eating better than most toddlers I have met, yet she still struggles to gain weight and height over the past 2.5 years. She'll be 4 in March and is only 27lbs, 36 inches tall.

At age 2.5, she filled her diapers with nothing but mucus for two days. On the second day, there was blood inside the mucus. She does have an allergy to eggs, so her allergist said she could have gotten into something, and basically brushed it off. We never completely removed eggs because she had always tolerated them in baked goods and in stuff like pasta. The only symptom she has ever had was severe vomiting from eating scrambled eggs. Her allergist said we could make the allergy worse by removing it completely.

At age 3.5, she started passing mucus with blood in it during bms about 6 times over a 2 week period. Because she was also experiencing knee pain her doctor suggested IBD and a GI consult.

We basically wanted the consult to find out if allergy could actually cause this bloody mucus. We no longer see our allergist because he didn't feel like her allergy could manifest itself in the GI tract, and he also thought it was weird she only had one allergy, but refused to test for anything else??? Her new allergist is at the hospital clinic, so he's very busy. Her blood allergy levels in May for egg were low, so they scheduled a food challenge....in a YEAR! We feel like if her levels are low and she is eating egg as an ingredient, then it might not make sense that this is caused by allergy.

So, the GI consult got booked and they scheduled a colonoscopy for the same day as the consult!!! We are not even sure that her symptoms warrant this type of procedure, but it's been 3 months since her symptoms started and stopped, and we still don't have answers because of the referral process. So, we are going to go through with it.

After all of this, I guess my questions are:

This is not the typical presentation of IBD, right? She seldom has diarrhea or tummy pain, BUT she is very bloated in the evenings.
Is it possible that it was an infection that resolved, even though the stool samples were negative?
Would symptoms of IBD be ongoing?
If she has something like allergic colitis, will the colonoscopy show this?
If this was due to inflammation at the end of November, will the colonoscopy show inflammation in February??

Our daughter has not been suffering as some of your sweet little ones, so I hope this post is not offensive in any way....We are just really looking for the cause of her poor growth, bloating, and bloody mucus in her stools. We are hoping we have made the right decision to go through with the scope, because really, she's only had two episodes in the last year.....well, the last episode lasted for 2 weeks, but you know what I mean?

Any reassurances or guidance would be greatly appreciated. I have pictures I could share of her bloating and mucus, but not sure that would be appropriate.

Thanks in advance!

 

[Dexky]

Hi Mama, I can't answer to anything about the allergies but I will tell you that it is possible to see old inflammation during scopes. We were told that our son had signs of healed inflammation in his stomach. I don't think it's a bad idea to go ahead with the scopes. Above all else, I hope you get answers instead of just more questions! Good luck!!

 

[mamawith2girls]

Thank you for your reply. Do you know if any other children have presented with IBD in this way, i.e. bloody mucus in bowel movements? Does there always have to be a diarrheal component? Is IBD progressive in nature, as in, could it start out with small episodes of inflammation, and then get worse over time, since she is only four? Most of what I have read suggests it's rare in this age group, so is it possible that this is just the beginning stages? The fecal occult was negative, so there isn't active microscopic bleeding. The only blood we've seen was IN the mucus globs. Is bloating characteristic of IBD? Sorry for so many questions. It's so hard waiting and wondering about what the scope could show. Thanks again.

 

[Dexky]

EJ had bloody d for about two months leading to his diagnosis. He would also occasionally have the mucous. He will still announce rarely that he has some mucous. The mucous was explained to me as the bodies attempt to shed an irritant(possibly inflammation). I can't say if anyone's presented exactly that way, mucous w/o d, but many have presented with constipation as opposed to d. So, no diarrhea is not always present with crohn. The bloating after meals is definitely one of EJ's symptoms as well. I also believe that untreated IBD is progressive. There are a few parents with children as young and younger than four on here. EJ was ten when dxed 12/09.

EJ has to be scoped again this coming Wed.. I know how you feel about the wait.

 

[mamawith2girls]

(((HUGS))) I cannot imagine how scary that must have been for you I really appreciate you answering my questions.

Her bloating has been one of our biggest worries. Because she is so tiny, she sometimes looks like a malnourished child, which we know she is not. But, we can't report diarrhea or constipation, so we've always hit a road block in that department. She does say her belly hurts sometimes, but not very often. But she's the type of kid who doesn't complain. She barfed constantly her first year and she never complained, even when she vomited blood. The only way we knew she was having pain was that she refused to eat.

Her doctor has said she's just small, she had a rough start, she's outgrowing her allergy, stop worrying about it....then the bloody mucus started up again, so it's hard not to worry.

Good luck with EJ's scope and thanks!

 

[amirah]

Hi mama
so sorry to hear what your little one is going though, it is possible that she could have IBD, even though she is only 4 years old, my daughter was dx at 17 months with crohns,
she had bad diarrehea, mucus, blood in stool ect.
Hope you get some answers from the scope.

 

[gypsigirl28]

Hi mama, Sorry to hear your little one is going through the testing and having trouble.. My granddaughter has been going through this whole situation since August 2009 with no luck as to find out what it is. She has had testing done but doctors cant seem to figure it out or be willing to give diagnosis...
I would have to say I think you are doing the right thing going through with the testing. it never hurts to be safe then sorry. I think it is great that the docs are willing to do testing for her.
As for allergies, I know I am allergic to Milk and if I have anything that contains milk I get diarreah.. That is not saying that it could be an allergy. Just want to let you know my ecperiences with it. I have never noticed blood or mucus from it though.
Good luck to you and to you little one. I hope you get some answers for her. hugs to you both

 

[troydanielbecker]

Mamawith2, our Isaac had bloody mucousy diarrhea for a couple months after more than a year of "benign diarrhea"--actually he just never had solid poop. Blood work showed a high sed rate, which indicates inflammation, so we knew there were inflamed bowels. He seemed healthy, nutrition-wise, so it seemed obvious that he had some colon inflammation. So we knew colitis was almost a sure diagnosis. We weren't excited about a colonoscopy, but it allowed the doctor to see just what was going on, and ruled our inflammation in the small intestine (they did an endoscopy as well)--showed that inflammation was throughout the entire colon.

The thing is, any IBD diagnosis is a large envelopment of symptoms and mostly nothing about causes, which are largely mysterious. We were glad to get the scope after it was all said and done because it provided some certainty were there is generally otherwise little. In the case of your daughter, if they do an endoscopy too they might some significant information about her esophagus/stomach etc.

Anything about Food Protein Induced Enterocolitis Syndrome (FPIES) from the docs? I was just reading about that and GERD and thinking about common indications with IBD.

Troy
Father of Isaac, dx UC in 10/2011 at 29 months old
Read details here: http://ibdinourhome.blogspot.com