SIBO during EEN? EEN failing to help?

[Emilie]

We're on week 7 of EEN and Ds is still having symptoms (abdo pain, bloating, and some joint pain). GI mentioned that it could be a problem like SIBO. Has anyone experienced something like this with SIBO present during EEN? Did antibiotics take care of the symptoms? We'd be using Flagyl I believe.

We have an EGD coming up next week and I'm hoping that it will shed some light on a diagnosis. Ds is still undiagnosed but CD is in the mix of possibilities. It will be his 3rd EGD, though, so I'm not holding my breath. If the scope looks good, the plan is to try Flagyl alone and see if it clears the symptoms. If it looks bad, I think its going to be steroids (entcort) + Flagyl.

So, I guess I am looking for your experiences with testing for or treating SIBO. Also, did EEN fail to help any of your kids who have Crohn's? It seems like its a very respected treatment for CD, so I'm wondering if EEN failing to completely resolve things is a possible strike against a Crohn's diagnosis.

 

[my little penguin]

IS he having a colonoscopy as well?
that is the gold std for crohn's

EEN can be enough for some but others need pred.
Ds needed pred in addition to EEN.

Good luck on the scope.

 

[Emilie]

We had a colonoscopy in Nov which showed nothing. All the inflammation is in the jejunum according to the CT scan.

 

[Farmwife]

Sorry to hear about the ongoing problems.
No advice about the SIBO.
Grace did however do both EEN and prednisone.
It took about 3 weeks to realize she needed more then EEN.
But after the course of prednisone, she did great on EEN.
Well........until she started food again.:confused2:

Hope you get things figured out soon.


Hugs

 

[Twiggy930]

EEN didn't entirely solve my son's problems either. He still had a lot of abdominal pain while on EEN. I now think that it may have been because some of the formula we used contained corn syrup solids (which are high in fodmaps). We have been having success in reducing my son's abdominal pain by having him follow a strict low fodmap diet. Your descriptions of abdominal pain and bloating made me think of the fodmap diet. You may want to look into it.

http://www.med.monash.edu/cecs/gastro/fodmap/

I'm not suggesting that the diet will cure anything but it's main aim is to reduce gas and thereby reduce abdominal pain which might help.

 

[my little penguin]

The corn syrup solids in elemental formulas are highly refined and not what you would find in food in the grocery store.
So broken down that children with corn allergy are able to consume them
But NOT corn syrup in regular food without a reaction .

EEN takes time and typical induces remission but not only 80% of the time for kids.
And less than that in adults.
So some need more than that including pred.

Also keep in mind your child body was fighting inflammation a long time
So some nerves are still sensitive and want to keep responding even though the inflammation may be down.
So abdominal pain may take a while to go away .

 

[Catherine]

Does your child have high folate levels? We were told high folate levels could be a sign of sibo.

 

[imaboveitall]

I would try switching formulas to a very broken down one, elemental vs semi elemental. When V was first on formula, regular Pediasure was trialed and she had terrible abd pain, vomiting. Switched to Pediasure Peptide (semi-elemental) and she did great. We were going to go to Neocate (elemental) if the Peptide was not tolerated.

 

[Emilie]

Thank you for all the new ideas. Twiggy, we are looking into Foodmaps for once we start re-introducing foods. I am glad to hear it helped your child.

Does your child have high folate levels? We were told high folate levels could be a sign of sibo.

I had never heard this, so thank you. Ds' blood work has been very haphazard, so I'll have to look and see.

I would try switching formulas to a very broken down one, elemental vs semi elemental. When V was first on formula, regular Pediasure was trialed and she had terrible abd pain, vomiting. Switched to Pediasure Peptide (semi-elemental) and she did great. We were going to go to Neocate (elemental) if the Peptide was not tolerated.

I think this is really great advice, but unfortunately we're already on Neocate so we don't really have anywhere to go from here. I will say, for anyone who might be reading along, that when we switched our supplement from Ensure to Neocate we saw almost immediate and HUGE gains in weight and shortly after in height. We spent 6 months on Ensure (5-6 bottles a day!) with zero gains and in 2 weeks on Neocate we started to see growth. Using an elemental formula is probably what has kept Ds from being much, much sicker!

 

[my little penguin]

Do you use the scoop or a kitchen gram scale?
A gram scale is needed for most kiddos
So might be worth looking into since if proportions of water to powder are slightly off ( aka the scoop) then ...
Hope that helps
Also if neocate is an issue 99% of kids tolerate either neocate or elecare
So elecare is an option .

 

[imaboveitall]

Since you're already on elemental formula then SIBO is definitely something to test for, as dysmotility can cause bacterial overgrowth even when the only intake is formula. V did this test soon after diagnosis, it wasn't too bad, just a long time at the dr's office as they must breathe into a device that measures exhaled gases, over a period of hours. Tedious but not painful or invasive.

We have a young neighbor child with IBS, (not IBD) who was recently treated for SIBO; caused by motility issues related to IBS. The symptoms are much like you describe. Also there can be IBS and IBD present in the same patient.

Sidenote: realize that if disease is limited to the small bowel (as V's is) a pillcam is needed to reveal this. Scopes will not show sm bowel disease, and MRI/MRE (V has had both) show only structural changes to the bowel, not mucosal inflammation. We learned this when she was hospitalized in very bad shape but her abd MRI/MRE were NEGATIVE.