IBD or IBS?

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Apr 20, 2012
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Hi everyone. I dont really no where to start, or what it is im even looking for. I guess you could just say im a desperate mom looking for answers.

Heres my story in short: my son has been experiencing severe diarrhea since he was 10 months old. (He is currently 14 months old.) He was hospitalized the begining of Feb. for severe dehydration. At the hospital they did blood work, stool cultures, and took an xray. One of the tests they did was a lactoferrin, which came back positive for inflammation. His blood work also showed signs of inflammation. He also was tested for celiac disease, which came back negative. Leaving the hospital we were told possibly IBD. He seen a GI doctor last month, and his final diagnosis was IBS. He told us hopefuly he would grow out of it by the time he is 4 or 5 years old and there wasnt anything more he could do. I am so confused on what to do, or even what to think. All i know is whether its IBS or something else, I cannot sit here and watch my son go through this.:frown: and to just "wait" to see if he grows out of it.

Here are his symptoms:

He losts a small amount of weight, and is slowly gaining it back. (though it seems weve hit a platue) He is constantly tired. He sleeps about 11 hours at night, and usually takes two naps or one long one during the day. Food goes straight threw him litteraly, it looks the same as it did going in. He frequently has tummy aches, LOTS of gas, his stomach gets bloated and a little distended. Also, im not sure if this has anything to do with it, but his balance becomes off when he gets tired. He will stand up and start to walk and keep falling down, he is usually crying at the time.

One of my concerns is the undigested food particles. Im worried he is not getting the nutrients he needs, and this and the diarrhea will cause more problems for him later down the road. Im really lost on what to do. I feel like i have failed my son because i cannot make him better.
 
Can you try seeing another specialist? Can't let him just not absorb nutrients. They have to be able to do something for him even if it is IBS. If all food is going straight through then there has to be options out there otherwise like you said, dehydration and low on nutrients cause problems of their own. I'd start with Pedialyte or something like it if you haven't already and get on someone's ass about the nutrient issue. Maybe have your GP get a referral to another GI specialist. Hopefully someone else will come in with some more info.

Edit: Request blood work to be done for vitamin deficiencies by your GP at least to see what damage is being done nutrition wise thus far then you can try increasing those for the time being.
 
Are you still breast feeding?
A lot of baby's do have digestive trouble due to their stomachs are a lot more sensitive. Some mothers suggest giving their child whole foods mashed to prevent alergys etc.
This is something that a doctor really needs take ownership of.
I hope you find a helpful doctor
 
Oh, another thing to test is lactose intolerance..
Some baby's actually have that... Weird..
Hopefully your doctor can put you in the right direction anyway
 
That does NOT sound like IBS.
And with IBS, inflammatory markers are NOT elevated.

Please get him to another doc asap. God...these babies on here make me cry. :pale:

V's doc is obsessed with lactoferrin, and it is used to distinguish between the likelihood of IBS (normal LF) and IBD (elevated) to direct further testing.
Weight loss and fatigue are also NOT hallmarks of IBS.
The hallmark of IBS is an alternating pattern of constipation/diarrhea.
He needs a further eval. He could have IBD or many other things.
Don't give up.

Hugs,
Julie
 
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Completely agree with Julie. You need a second opinion (new GI). The inflammation should not be there for IBS. Good luck! Please keep us posted.
 
Definately worth another opinion! Can't believe doctors will just stand by and let little ones suffer. Hope you get something sorted!
 
Please find another GI as the other have said.

SOme hospitals will review biopsy slides to point you in the right direction.

I know Cincinnati CHildren's GI center will since there are many things including Crohn's , EGID's, Colitis, and Food allergies/intolerances that can cause issues.

National Jewish hospital in Denver will as well.
http://www.nationaljewish.org/programs/pediatric/gastro-eosinophilic/

They are a little closer to you.

Has he ever been on an elemental only formula ( neonate/elecare)?
http://www.neocate.com/

http://elecare.com/

Those could help some with any of the above until you could get seen.

They can be pricey and insurance may not cover without a diagnosis.
unfortunately if its an EGID (such as EoE often missed if one isn't looking for it) the formula will heal it and then its an insurance battle.
:yfrown:
 
There is a natural tendencies to want to believe what the doctor is saying. But at the end of the day, food particles should not come through to the extremes you're decribing.

Go to another doctor.

Prayers coming your way!
 
Thanks everyone for your input! I have already been thinking about demanding another blood test to be done to see if there is still inflammation. I will also ask for his vitamins to be checked, which im sure are low. Since it seems the foods that go straight through him are mainly veggies and fruits. I hate having to hold him down for it. :(

He does NOT go back in forth between constipation and diarrhea, however it goes between diarrhea and loose with an occasional soft formed BM. He has a BM anywheres from about 3-10 times a day. On a good day he has only a few, but they are usually loose. Another thing i forgot to mention is they are the worst foul smelling BM i have ever smelt!!! Before this started he was only having a BM once a day or once everyother day.

When this all started he developed a rash and he still haves it. A couple of doctors thought it was some type of fungi, but it was tested and came back negative. The his doctor finally last week said its eczema, but i always thought eczema itched. I never find him itching it.

I am not breastfeeding. Funny that you should tell me to ask for a lactose intolerant test. When this first started thats what his doctor thought it was so we switch him to soy. The GI doctor said "He is deffinatly not lactose intoloerant" and wanted me to put him back on cows milk and increase his fat intake. I asked him if there was a test we could do just to make sure and he told me about them but said he didnt really want to do them. (Which i admit doing a hydrogen test on a squirmy toddler would be pretty hard).


Thanks for all of your advice again!!!
 
Hi and poor you my son is the opposite I can't get him to go and it is very frustrating and upsetting to watch your wee ones in pain. I agree with everyone else you need more investigation and a second opinion. From reading your story it does sound like he is intolerant to something which is upsetting his digestive system. Can you take him to get tested for food intolerances? Did his diet change 4 months ago. At that age they do need a lot of sleep and both mine would've slept the same amount as yours especially if they are growing, but if he's lack luster when he is awake I would be more concerned. Has his mood changed does he appear in pain? Also their balance can be a worse when they are tired.

I must admit I have never heard of IBS in a baby I'm not sure if it's even possible I simply would not except this diagnosis until absolutely every other possibility has been ruled out. Children go through so many phases so he may well grow out of it in time and it could be a very simple explanation or a bug he had etc etc. Good luck and hope he feels better soon
 
Its weird how doctors approach intolerances..
They tell you to cut a few food groups out however, they should suggest a plain diet which gives you all the nutrients you require. Then introduce foods.
I hope a doctor finds a reason behind the struggle.
If the soy milk didn't make a change and your littleone wasn't getting better then you could almost completely rule out lactose. "as long as the little one wasn't getting lactose anywhere else".
I hope you get a caring doctor soon
 
This may be completely wrong idea, but has he been tested for c.diff? I haven't really read up on it much yet, but the thing that pops out for me is the loose stools, frequency and really foul-smelling!
 
Hi and :welcome:

So sorry to hear your little is going through all this, bless him...:hug:

Some of the symptoms you have mentioned cross over between IBS and IBD...abdominal pain, bloating, persistent diarrhoea and in some cases inflammation. Newer research suggests that for some people with IBS intestinal inflammation can be present but not to the extent that it is with IBD and it is only seen microscopically.
What doesn't occur with occur with IBS is weight loss, anaemia, fever, raised inflammatory markers in the blood, rectal bleeding, delayed growth, strictures, fissures and extra intestinal manifestations (EIM), amongst other.
I see you have said he has a rash, this is not an uncommon EIM of IBD so that may be something to consider. Does your little boy have any problems with red eyes or mouth ulcers? I know how difficult it is when you are dealing with a child of this age to try and document and track symptoms.

I heartily agree with getting further opinions hun. You are spot when you say you can't stand by and wait to see if he grows out of it. Good luck and I hope more than anything you get solid answers soon!

Dusty. xxx
 
Foul smelling stools also do NOT align with IBS.
That could indicate bacterial overgrowth, malabsorption (as does bloating) or both, or c-difficile or celiac.

There are other things that could be present, more global issues that have a GI feature. He needs a good, thorough assessment. I'd get one scheduled posthaste if it were my baby.
 
Seen the doctor, and she agreed my son needed a second opinion from a different GI. That was two weeks ago, and I still havent herd anything from her. We are going back monday, because i noticed a lump on his neck as well. I think its just a swollen lymph node, but still want to get it checked out.


He has his good days, where he feels fine and eats and eats. But then when his diarrhea comes he slows WAY down on the eating, gets extremly fussy (gas pains im sure), and wants to sleep all day.

I wish someone would give us some kind of answer.
Someone mentioned medication for IBS? WHat kind of medication is there for IBS? The doctors tell us theres no treatment for it.
 
:bigwave: and welcome. I'm new to this too. Our stories sound almost the same. Your little guy seams to be having it rougher than Grace my 3 yr. old. I'm glad you are trying to figure this out. I just took for granted what the doc and my family said and waited out 2 years. Now I'm hating myself:ybatty: for not doing more. Our doc also a few months ago said IBS for Grace. Upon further study like you things are not adding up. I hope it's not crohn's but I can tell you for sure it's not reg. IBS. The best advise out of many from every one here is keep a journal of he's symptoms. They will help the doctor and most of all you. I'll try to find the link I was given if some one has not given it already. Ask any and all questions you can here. They have been in your shoes and are wonderful advise givers.
:soledance:Farmwife
 
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Thanks Farmwife! I have been keeping a diary, however its been difficult. It would help if he was older and could talk.

Im sorry to hear about your baby.:frown: Its the hardest thing to watch your baby go threw something like this. What are her symptoms like?
 
Thanks for the update!

I'm sorry to hear that you are getting the run around. :( I hope your little guy is okay, poor love...:hug:

My daughter use to cycle like that too. Periods where you would swear nothing was wrong and then bang! back to square one for a couple of days...round and round and round we went. So frustrating and confusing for them and us too!

There is no medication for IBS as such, the medications they do use are to treat the symptoms only. So things like antidiarrhoeals, pain-relieving medications, drugs or treatments to treat constipation, antispasmodic drugs and tricyclic antidepressants.

I hope you can get an appointment soon Mum and some solid answers to go along with it!

Good luck!

Dusty. xxx
 
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