12 year old daughter in hospital throwing up blood.

[Cheryl mom]

we brought my daughter in to the emergency room this morning throwing up blood and in extreme pain. She is on 50 mg of mercaptopurine and 9 mg of entocort. Started taking them two weeks ago. What is usually done to treat children with this kind of pain and vomiting? The dr. Says he will not be sending her home.
I am freaking out right now. I've never seen anything like this. Is this normal for Crohn's?

 

[Farmwife]

Hugs, big, big hugs.
Grace had thrown up blood before. It was more upsetting to me than seeing blood in the stool.

For Grace we knew she had stomach involvement and she was in a flare.
They ordered x- Ray and labs. Thankful she only did it a couple times with vomiting blood so the doc sent up home. GI later called and said all test look normal so keep an eye on it. It did go away.


The GI main job is to find out why your girl is vomiting blood. Anything from doing labs, mre, cat scan, scopes...... can be utilized.
Make sure the doctor is explaining what he/ she is thinking.
Some docs might keep a tight lip until they have an answer but if your like me :wink:
I would rather know the possibilities and be informed.

As far as the meds causing this, anything is possible.
Please keep us updated and hang in there, we're here for you!

 

[Mehita]

When DS had a stricture, he used to vomit blood. At the time he was only on Pentasa and was being undertreated. Because he had been vomiting so much, from his stomach upward his gastro system was not happy, raw, and in some places bleeding. I, too, freaked out big time, but as he healed it all went away.

DS has used Zofran for nausea and vomiting. It's always worked well and immediately for him.

How has your daughter been feeling otherwise? I know it's early with the 6-MP. Has she had any labs yet?

 

[SupportiveMom]

This is scary I know. Agree with farmwife. Blood in vomit worse than stool for me too. My daughter had this on her 2nd hospital stay. Ulcers were her cause & we added methotrexate to help the biologic. She hasn't had the issue since. I hope they give you answers soon.

 

[SupportiveMom]

Oh, and also did our first bit of EEN. That helped alot.

 

[Cheryl mom]

Thank you all for the quick replys.

Rachel is doing better. She is at Maine Medical. She will be here for the night. Looks like an bleeding ulcer but not sure. They are giving her meds to cut down on the stomach acid and nausea. She is tired but resting well. Thank you all for your prayers and support.

 

[Cheryl mom]

Supportive mom, you mentioned EEN. How did that go for you? My daughter just started on Elecare Jr. 2 days ago. We are hoping yo get her off the steroids over the next week and be completely drug free.
I would love to hear of people's experience using EEN.

 

[SupportiveMom]

Cheryl My D tried EEN by ng tube for a little over a month. She couldn't commit to drinking it. She had a tough time with the tube staying in but felt better doing it. She was on Peptamin Jr. 1.5. Others had more success than my daughter. I think we tried it with too much inflammation. If my kid wasn't at the surgery stage I would try it again.

Don't rush the taper off prednisone. Its a drug that needs to be slowly reduced so your body doesn't have adverse affects. The soonest you can get her off the better.

 

[pdx]

I have a 12-year-old daughter too, and EEN was helpful to her earlier this year. She got Peptamen 1.5 via NG tube for 10 weeks, and she's now getting supplemental EN via tube three nights a week.

We were trying to use EEN to induce remission while we gave Remicade a change to kick in. For many kids, that works, but in E's case, the EEN was not enough. She ended up in the hospital with an abdominal infection two weeks into EEN. She got IV antibiotics and steroids in the hospital, and then started budesonide and methotrexate (in addition to the Remicade and EEN) when she went home. With all that, she's finally getting better.

So that's a long way of saying that EEN alone wasn't enough for my daughter. However, it did keep her off prednisone, and I believe it gave her body the nutrients it needed to start healing. She's also gained more than 20 much needed pounds since January thanks to the EN.

I understand completely your desire to taper your daughter's prednisone, but are you considering any maintenance meds? EEN is not a long-term solution, and once food is reintroduced, inflammation usually returns if you haven't started a maintenance medicine.

Edited to add: I just reread your original post, and saw that your daughter started 6-MP and budesonide recently. Will she stay on those, or does your doctor think they have anything to do with the stomach issues?

Good luck with the EEN, and I hope that your daughter is feeling much better soon.

 

[Sascot]

My son did 8 weeks EN (Modulen) via the NG tube as he hated the taste. It worked really well for him and took away all his tummy pain. It was hard but he seemed to manage okay and only complained once or twice. It helped that the GI gave him no choice - he was told he had to do it. Hope it works for your daughter

 

[Cheryl mom]

PDX, My daughter was on 6-MP and entocort for 2 weeks. She has not felt good since her endoscopy and colonoscopy one month ago. She started throwing up a week ago blood in her vomit. The doctors by trial and error decided to take away the 6-MP and see if that would work.it made the difference. She stopped throwing up and her belly felt better. So now we are continuing with the entocort. She is on EleCare Junior orally and tolerating it well. We are hoping to be drug-free once we are off the entocort.
I am so thankful for the site it has been so helpful! Thank you all for your responses.

 

[Mr chicken]

Not to burst bubbles but once you start to add food back symptoms will come back with a vengeance . Staying no foods is not a long term option.
All maintence meds take time to build up and take effects (6weeks to 5 months)
So it's better to start a maintence med now while the EEN is doing the heavy work.
DS did 9 weeks of EEN while on 6-mp but it was never enough and he didn't get better
So after 8 months we switched to MTx. And later remicade .
Good luck

 

[Mr chicken]

Check out the research page on how treatments work
Here

http://www.crohnsforum.com/showthread.php?t=43002

 

[Mr chicken]

One last thing your not alone
99% of parents desperately search for the no med option for their kids when dx with crohns
Changing diet EEN etc...
It doesn't exist as a long term option
Children are more severe and tend to have a higher surgery rate in 5 years of dx.
So educate your self as much as possible

 

[crohnsinct]

Both of my girls were able to achieve clinical remission with EEN. Both did EEN orally. O was also on Remicade at the time and when she came off the EEN Remicade continued to keep her in remission.

T is a slightly different story. She started Methotrexate at the same time as EEN because it can take Mtx up to 12 weeks to become effective. Within 5 weeks T had an FC of 50. Our GI is very enthused by what is being done with diet and EN these days. The GI, dietician, T and I all agreed because T was a rather mild case that we would try to manage disease with either a 50/50 diet approach, using EN and a very controlled and specific diet (think non inflammatory foods, no sugar, little to no animal products, no processed foods) or cycling a month on EEN a month off. We slowly stepped down the EEN and a few weeks in to the 80% EN and 20% food stage T's FC numbers went up to 256. This was even with the methotrexate. So GI said controlling all natural with diet and EN alone was off the table. He said we could revisit the idea when she was an adult but that in kids he has never seen it work. There is a lot of research on the topic and GI's practicing this coming out of CHOP, Israel, and Japan but it is very much an art and not science yet.