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My Son, Crohn's and AI Hepatitus

Hi,
My son, who was 13 at the time (he just turned 14), was diagnosed with Crohn's in April this year. After two months on medication, he is seemingly doing well but our latest set of blood work, showed his liver enzymes were going up again. (They were originally really high before his diagnosis but were almost normal about a month ago.) So now, as we originally suspected, he may also have autoimmune hepatitis on top of the Crohn's. I was a very happy mom when I finally found him gaining weight (12 pounds in two months!), looking better and responding to meds (omeprazole, entocort, pentasa, cipro) but now I'm really worried that he has lost two pounds and his labs are going off again. He never showed any other symptoms besides slow weight gain and really bad labs. He never had stomach pain, diarrhea or anything other than being pale, very skinny and occasionally feverish. So I have nothing symptomatic to go on to know that he is flaring up. It's a blessing and a curse at the same time.

So now we are waiting to get more labs in two weeks and a follow-up visit with his pediatric GI specialist.

I was thrilled that we made great progress but now I'm really worried and scared that we are only at the very beginning of this long journey.

My poor son has so many "labels" already (aspergers, food allergies, asthma, crohn's, anxiety disorder). I feel like he has had to face so much in his short life and I'm looking for reassurance that he will be okay in the long run. He is an amazing young man.

I know that once you are diagnosed with an autoimmune disorder you are more prone to having others. Does anyone else have any experience with this particular combination?

Thank you all for being there. I've lurked in this forum for awhile now but this latest setback is making me so sad. I appreciate being able to post.
 
Welcome to the forum. I'm so sorry your son's labs are going off again.

Could it be, instead of autoimmune hepatitis, that his CD is flaring again since the elevated liver enzymes showed up in his first flare as well?

Has he had a fecal calprotectin stool test to check for inflammation in his GI tract since the blood work was going off again?

Hopefully, one of the other parents or members will be by shortly to give you more knowledgeable experience. Sending hugs and support your way!
 
Sorry don't know much or have any experience with AI hepatitis. My son is 13 (turns 14 in about 2 weeks) so about the same age as yours. I second Clash about a flare for many Pentasa is just not enough to keep the Crohn's at bay kind of like aspirin for a brain tumor.
If in fact there is AI hepatitis in addition to Crohn's the same immunosuppresants that are often given for Crohn's is also given for AI hepatitis - Imuran (Azathioprine). My son was on this for about 2.5 years and saw good results and many other children are also on it and seeing good results as well.

Hope the appt. with the GI goes well and you get answers quickly.
 
@Jmrogers4, thanks for your the information. I'll have to look into Imuran.

@Clash, I'm not sure if he's had a fecal calprotectin stool test. I'm sure he did originally. I had to collect a bunch of samples. His liver enzymes were really off before his diagnosis which stumped the docs since it supposedly didn't go with the Crohn's. His spleen was enlarged and a ton of other values were off on his labs including issues with clotting factors. He was an odd case since the MRI was negative for Crohn's but the biopsies were positive (which was more conclusive anyway). So the question from the docs during diagnosis: were we dealing with two AI diseases from the start? Crohn's and AI Hep?

He was set to have a liver biopsy before he started the Crohn's treatment but they cancelled the night before since it was so high risk for him - because of his clotting factors and because he had a bad reaction to fresh frozen plasma that was given to him before his colonoscopy/endoscopy. Given that the treatment would have been the same anyway, they didn't want to risk it especially since at the time, he was in rough shape.

Have others had an initial good reaction to meds and then a decrease in effectiveness? Within a two month period?

It seems like there is so much to learn about all the meds and tests. I feel like I need a medical degree sometimes. Does it get less overwhelming?

His dosages are: 40 mg omeprezole, 2,000 mg pentasa, 9 mg entocort, 1,000 mg cipro; plus vitamin d, probiotics, fish oil, and a vitamin. He also drinks at least two Boost Plus a day plus his regular food.
 
It can be so overwhelming and it seems that is also when you are making the hard decisions.

My son went straight to Remicade and had immediate results but after his loading doses( around two months) his symptoms would return and his inflammatory markers would rise. We had to tweak his schedule, up his dose and add methotexate. This was done over a six month period each one added or upped when his markers went off. Even after the tweaks and adds it took about six months for him to have normal fecal calprotectin levels, normal bloodwork and to start really gaining much needed growth.

I'm tagging Dexy and MLP maybe they have some experience with entocort or pentasa.
 

my little penguin

Moderator
Staff member
HUgs

Pentasa did next to nothing for my son. he was only on it a month.

He may need something stronger.
my son had elevated liver enzymes with 6-mp but those disappeared when we took him off of it.
He also has multiple things going on including food allergies and asthma.
 
@my little penguin - unfortunately my son's liver enzymes were elevated before any treatment started. It was one of the big flags that got us going on testing. They were up in the 500-600 range where normal range is 40-50 (depending on which one). So I can't blame his elevations on anything that is medication based.
Is Pentasa the usual beginning point? Because docs want to start mild and work up to stronger?

In regards to food allergies and asthma, since they are also auto-immune issues I was trying to see if they were related in any way (like a messed up auto immune system is messed up in many ways) but since food allergies are IgA related and Crohn's isn't the same kind of thing, they are really just coincidental. It would be interesting to see a study on how many suffer from both though.
 
Hi Graphicdesignermom, are you still around. I just found this site tonight. I'm in Florida and my 9 year old daughter was diagnosed with Crohns a year ago and just 3 days ago diagnosed with AIH after a recent liver biopsy. I am about to start prednisone and imuran with her. I would be interested to speak to you. Thanks Julie
 
Hi JulieB,
I haven't posted in a long time because this has been quite a journey and we have been up and down and back and forth on tests and diagnoses. I would be very happy to talk to you. I'm not sure how to get an email or phone number to you privately. I'll check my profile to see if you can PM me. Otherwise, I'll come back and post anoyher message.
 
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