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Crohn's Disease Forum » Parents of Kids with IBD » 18 month old with poss crohns


02-04-2016, 05:03 PM   #1
ic7997
 
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18 month old with poss crohns

Hello, I do not know where to start. My son is 18 months old and is undiagnosed. started with mucousy diarrhea last october then bloody loose stools and bloating, tummy pains, the tummy pains went away but he still has bloody stools. He normally passes stool once a days, and its either formed or mushy but not runny. He had a upper and lower GI last week, and they had to stop since he had inflammation in his transverse colon and it began to bleed a bit. hes had two calprotectin tests and both 1600s. he is scheduled to have an MRE next week to see how inflammed the colon is where doctor couldnt see. He has a huge appetite, full of energy and where he should be in growth. But everything is pointing to crohns. My thing is I prefer not to "drug" him and look at a more non-conventional approach, like diet, holistic measures. does anyone have any advice. there is not much study of effects of drugs in toddlers, especially long term. of course doctors never agree with not giving drugs since thats the way they are taught. I actually eliminated all dairy since a month ago and hes seems better but the bloody stools are still there, not alot but specks. and hes also anemic, hemoglobin is at 9.8. I would appreciate any info since Ive never even heard of this disease and my other two children have been always healthy. Thank you
02-04-2016, 07:13 PM   #2
ronroush7
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I am going to tag my little penguin
02-04-2016, 10:07 PM   #3
kimmidwife
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Glad you made a new post!
We are so very glad you have found us though sad you have to join our company.
I forgot to ask where is your son being seen? Usually with the real young ones it is better to be seen in a big tertiary care center if possible since they will have the most experience in dealing with the really little kids.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-04-2016, 11:04 PM   #4
tots
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I am so sorry your baby is sick, its so hard to watch and not be able to fix it!

Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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02-05-2016, 05:48 AM   #5
my little penguin
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Kids under two are a special type of crohns
Agree with the larger pediatric Ibd center top three in the country are
Children's of philidelphia
Children's of Pittsburgh
Boston children's
They can do record review without you going there physically if needed

Genetic testing should be done since very onset Ibd is a beast all in its own which sometimes is immunodefeciency related diseases and is much harder to treat .
Emory university does the testing but it takes 3 months to get results
http://geneticslab.emory.edu/tests/MM160

Malgrave knows a lot on early onset Ibd her kiddo was 2 at dx I believe

http://www.nature.com/jhg/journal/v5...hg201432a.html
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02-05-2016, 05:50 AM   #6
my little penguin
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Have they tried EEN ( formula only as a treatment such as neocate or elacare ?
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