Perplexed - very early onset IBD?

[yogurt's mom]

Perplexed early childhood IBD?

My 18 month is perplexing the doctors. he has had bloody diarrhea since about 8 months of age. He may have slight diarrhea early than that, but as the bowel movements of infants are kind of variable it's hard to say. He is also anemic and at 18 months is not walking, but otherwise development is fine. He has also had difficulty putting on weight at times. The doctor's have suspected allergy, but placing him on ele care allowed him to put on weight, but did not clear up the blood in his stool. he has had two endoscopes both of which showed gross inflammation in the colon, with NO PATH finding. the docs say maybe the problem is deeper than the biopsy cut. The extent of the inflammation has progressed between the two endoscopes from mostly ascending colon to throughout the colon meaning to me that the inflammation is going on unchecked. clinically there have been episodes of worsened bleeding set of by high fever ( and incidentally Tylenol). the fever and cold will resolve to a lingering low grad fever without cold symptoms lasting for a week or more with increased blood. This sort of looks flare like. And for A very young child his symptoms so far have not included obvious pain or severity usually associated with IBD in the very young. we tried colazol and sulfasalazine but they increased the diarrhea, so that whole class of drugs may be out as an option ( maybe his age makes him very sensitive) . the fact is that he has been sensitive to anything that is anti-inflammatory ( see Tylenol above, and yes I know it's not a NSAID). anyway the doctor's are leaning toward Crohn's as a dx, but we parents sort of figure the next step is to carefully try and get him offthe ele care (mayeb switch to alimentum ready to go) to rule out a corn allergy. anyway I was just wondering does this jive with anyone, or are we just the exception to what is rare. I am just concerned if we don't get the inflammation under control we are headed to bigger problems.

 

[QueenGothel]

My daugther was intolerant to Mesalamine as well. Steroid enemas always worked very well for her colonic inflammation and it is way less dangerous than oral steroids. I don't know what to tell you bc we haven't gone down too may medicine routes. More people will be along shortly. The last one we tried was Remicade which helped with the bleeding involvement but never completely stopped it. How anemic is you little man? When Rowan was anemic terribly (7-8 HgB) it seemed the only thing that helped was the blood transfusions and the Predisone. Oral steroid are only a quick fix though, but sometimes is needed as a bridge to medication like an immunosuppressants. What about Low Dose Naltrexone (LDN)? There is a whole area dedicated to its use here in the treatment section. It is low cost and has minimal side effect, the catch is getting a doctor to prescribe it which it is off label prescribing. Many have achieved remission with it regardless of the skepticism involved. Has he been officially diagnosed as Crohns? Bc he sound very UC symptomatically. There is of course Crohns colitis. I hope this information has helped. EN is another route many take with such a little one but as I see you are already using the elecare and it doesn't do much for inflammation of the colon, but :thumleft: on the getting the nutrition in. It is so very important that they are getting this so they can grow whilst finding a course to take. Hang in there. I hope the doctors get a good plan together for him soon. Take care and please keep us posted.

Glad you found us you are amongst friends here more will be along shortly I assure you.

 

[my little penguin]

Corn in elecare will not affect kids with a corn allergy.
It is not the same as corn in normal food .
You could try neocate which is a different brand of elemental
Since some kids do better on one elemental versus another.
Alimentum has more intact proteins so probably not a move in the right direction .

Has he seen Neuro for the lack of motor skills?( walking)
Did they look at mitochronidal disorders given his age?
I would push for chop , Boston children's or Cincinnati
Since he is so complicated .
Have you tried DuPont locally? They have a good Gi dept.
Have they looked into egids ?
They can cause bleeding as well .
Is he eating anything else other than elecare ???

 

[yogurt's mom]

thanks for giving me things to think about. his anemia has been mostly controlled using supplements. We switched brands once though, and he became bad quickly. we think the walking delay is likely due to the anemia. It took him well over a month to rebound to normal activity when we made the switching brand mistake.
The reason they think Crohn's over uc is the suspected deep tissue damage and originally presented as skip lesions.
I have heard that sometimes kids with corn allergies can have problems with ele care or neocate even though the protein is broken down. but my little penguins thinking is probably along the lines of what the GI is thinking especially about the switch to ailmentum. I think she pretty much thinks ele care is the best we can do until he is eating more food. And it does get him adequate nutrition.
we did do EN initially which brought his weight up and slowed the diarrhea, but not the blood. he is getting some foods, but its pretty limited, and it is awful because he so wants to eat.
we are going to see a good GI allergist at Hopkins and are thinking about going for a consult at CHOPs

 

[my little penguin]

If he has an EGID then any food could cause him to be worse did they look at EOS counts?
NO offense to hopkins but most complicated GI kids go else where even if they live close by from what I have seen. Has your GI tried EEN for 8-9 weeks only - no food to see if he improves?
EGID can cause bleeding and or diarrhea ( inflammation with out usual IBD signs)
That is why it is so important to get to a GI who see complicated kids day in day out versus once in a great while.

Common symptoms include:
Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach) – infant, child, adult
Dysphagia (difficulty swallowing) child, adult
Food impactions (food gets stuck in the esophagus) older children, adult
Nausea and Vomiting – infant, child, adult
Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite – infant, child, rarely adult
Abdominal or chest pain –child, adult
Feeding refusal/intolerance or poor appetite – infant, child
Difficulty sleeping due to chest or abdominal pain, reflux, and/or nausea – infant, child, adult
What are the Symptoms of EGID?
Symptoms may vary considerably, depending on the area affected.

Symptoms include:
Nausea or Vomiting
Diarrhea
Failure to thrive (poor growth or weight loss)
Abdominal or chest pain
Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)
Dysphagia (Difficulty swallowing)
Food impactions (food gets stuck in the throat)
Gastroparesis (Delayed emptying of the stomach)
Anorexia (poor appetite)
Bloating
Anemia
Blood in the stool
Malnutrition
Difficulty sleeping

Since none of these symptoms are specific for EGID, and many occur at times in healthy children or adults, the diagnosis is generally sought only after the symptoms have failed to resolve. Eosinophilic disorders can mimic the symptoms of other diseases like inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, among others.

from:
http://apfed.org/drupal/drupal/symptoms_of_EGIDs


also try "talking" to the ladies on KFA

since he may have something other than IBD going on and most there have seen the food allergy ,motility , egad and odd ball things

http://community.kidswithfoodallergies.org/displayForum/forum/eosinophilic_disorders

http://community.kidswithfoodallergies.org/displayForum/forum/formula_medical_foods

membership is required but free.

good luck

 

[CarolinAlaska]

How frustrating for you. I hope you can find the answer or someone who knows where to look next very soon!

 

[Sascot]

Sorry to hear about your son. I don't have any experience with this, but wanted to wish you luck in getting some treatment that can help!