My 11 year old was diagnosed a year and a half ago. He's had a rough go of things all last year. Went in to remission in the summer. Is on remicade high dose every four weeks, methotrexate 3 pills 1 x a week and vitamins. When school started he was well but got sick from time to time or had pain which is when the remicade went from 6 weeks to 4, he burns through it fast. He got virus after winter break a week, was well one day, then bloody stools and pain generally looked unwell, felt better one day then had remicade and a pre-dose of steroids last Friday and saw the doctor he felt well that day and for two days after then Monday not well again same some bloody stools and lots of pain. Doc said bloodwork was good we would do calprotectin test in three weeks and then colposcopy. Tuesday night in ER got fluids and sent home my son was slightly better still lots of pain. I asked for a short course of uceris/endocourt doc said no lets do test. Child is in pain when walks when sits, he's eating because hungry but all food hurts. We live in Illinois I have thought about giving him cbd oil but doctor hasn't said if it's okay. I'm really worried and upset that he continues to have pain. We take him to Lurie's and his doctor is great and we have had his files reviewed by his dad's GI from UIC. He's missed three weeks of school. Anyone have good blood tests and pain still? Any advice is greatly appreciated!
Bloodwork is good but child in severe pain
- Thread starter Faithsg
- Start date
Help Support Crohn's Disease Forum:
CarolinAlaska
Holding It Together
- Joined
- Jan 24, 2013
- Messages
- 2,574
Sorry to say but that has been my daughter's story for about 2.5-3 years. She is not on Remicade. Everything makes her unable to eat and have pain. Haven't found the answer yet.
- Joined
- Apr 15, 2012
- Messages
- 14,792
Sometimes kids Crohns flare for a bit after a virus
Ds does this
We always test if it continues prior to making med changes or steroids
Since abdominal pain may or may not be Crohns
And they need to know the extent of the damage
Steroids will only temporarily fix the problem and the doc won't know what the next steps would be
For ds
Bloodwork
Then stool tests
Then scopes /imaging
Based on these results the doc can determine what needs to be done
Med change steroids etc....
As far as school
Ds goes to school unless he is constantly in the bathroom with diarrhea or vomiting all day
Otherwise he goes
This is his life and pushing through is hard but he does it
If he gets really bad the GI admits him and does emergency scopes
The next day
GI land is slow -been at this since Ds was 7 and it's now over 5 years
I try to avoid rushing
It doesn't get you faster answers
So rather than changing things when you don't know the why
Wait for your GI
Call and explain your kiddo is getting worse
Etc
Daily if needed
Btdt
But at the end of the day for ds is has worked out. Just not as fast as I would like some times
Hugs
It will get better
Ds does this
We always test if it continues prior to making med changes or steroids
Since abdominal pain may or may not be Crohns
And they need to know the extent of the damage
Steroids will only temporarily fix the problem and the doc won't know what the next steps would be
For ds
Bloodwork
Then stool tests
Then scopes /imaging
Based on these results the doc can determine what needs to be done
Med change steroids etc....
As far as school
Ds goes to school unless he is constantly in the bathroom with diarrhea or vomiting all day
Otherwise he goes
This is his life and pushing through is hard but he does it
If he gets really bad the GI admits him and does emergency scopes
The next day
GI land is slow -been at this since Ds was 7 and it's now over 5 years
I try to avoid rushing
It doesn't get you faster answers
So rather than changing things when you don't know the why
Wait for your GI
Call and explain your kiddo is getting worse
Etc
Daily if needed
Btdt
But at the end of the day for ds is has worked out. Just not as fast as I would like some times
Hugs
It will get better
- Joined
- Jul 2, 2013
- Messages
- 6,750
I would update his GI and ask what can be done. Things do move slowly in GI land and it is very tough 
. But maybe they can do the Calprotectin test more quickly if they hear he is still in severe pain.
Alternatively, they could even admit him to do a scope.
Has blood work been a good indicator for him in the past? Some kids never have elevated blood work and others always do. Even if his blood work is good, it still could be inflammation, especially considering he's had bloody stools, so I would definitely make sure the Fecal Calprotectin test is done.
Sometimes meds like Levsin and Bentyl are given for cramping. They're really IBS meds, so they may or may not work. We found that Levsin helped my daughter with cramping pain.
We also found that heat helps a little.
My daughter also flares after every virus. Usually the flare calms down on its own - sometimes steroids are needed.
. But maybe they can do the Calprotectin test more quickly if they hear he is still in severe pain.Alternatively, they could even admit him to do a scope.
Has blood work been a good indicator for him in the past? Some kids never have elevated blood work and others always do. Even if his blood work is good, it still could be inflammation, especially considering he's had bloody stools, so I would definitely make sure the Fecal Calprotectin test is done.
Sometimes meds like Levsin and Bentyl are given for cramping. They're really IBS meds, so they may or may not work. We found that Levsin helped my daughter with cramping pain.
We also found that heat helps a little.
My daughter also flares after every virus. Usually the flare calms down on its own - sometimes steroids are needed.
- Joined
- Dec 26, 2014
- Messages
- 1,264
So sorry that your son is in so much pain.
My daughter has also been flaring this fall, although not as badly as your son. We found that her blood inflammatory markers were useless during this flare. Her CRP and sed rate have been consistently low, but her fecal calprotectin is high. The low blood markers surprised us, because when she was diagnosed two years ago, her CRP and sed rate were very high, so we assumed that those would always be good markers for her, but evidently not.
So it's good that you'll be doing a calprotectin test soon. Our doctor likes to do that test 3 or 4 weeks after Remicade, so I assume that's why your doctor wants to wait. You might also ask for a Remicade levels/antibody test just before your son's next infusion, to help you decide if maybe Remicade isn't working well for him any more.
In the meantime, while you're waiting for testing, you might try some dietary changes to help with the pain. When my daughter is having cramping, nausea, and pain due to Crohn's, we first try going to the IBD-AID diet, and that will sometimes give her some relief. If that isn't enough, going to EEN (a formula diet), really helps her pain. Some kids drink the formula, and others use an NG-tube, but it can be very effective, especially for pain that starts after eating.
Finally, at age 11, I would try not to worry too much about missing school. My daughter missed a lot of school during the period around her diagnosis, and we were all stressed out about it at first. In the end, she ended up missing about 6 months of school in 7th grade, and it wasn't that hard for her to stay caught up. For social stuff, we had her best friends visit her at home, and I stayed in touch with her teachers to keep up on what she was missing academically.
Good luck. I hope you get some answers soon, and that your son gets some relief from his pain.
My daughter has also been flaring this fall, although not as badly as your son. We found that her blood inflammatory markers were useless during this flare. Her CRP and sed rate have been consistently low, but her fecal calprotectin is high. The low blood markers surprised us, because when she was diagnosed two years ago, her CRP and sed rate were very high, so we assumed that those would always be good markers for her, but evidently not.
So it's good that you'll be doing a calprotectin test soon. Our doctor likes to do that test 3 or 4 weeks after Remicade, so I assume that's why your doctor wants to wait. You might also ask for a Remicade levels/antibody test just before your son's next infusion, to help you decide if maybe Remicade isn't working well for him any more.
In the meantime, while you're waiting for testing, you might try some dietary changes to help with the pain. When my daughter is having cramping, nausea, and pain due to Crohn's, we first try going to the IBD-AID diet, and that will sometimes give her some relief. If that isn't enough, going to EEN (a formula diet), really helps her pain. Some kids drink the formula, and others use an NG-tube, but it can be very effective, especially for pain that starts after eating.
Finally, at age 11, I would try not to worry too much about missing school. My daughter missed a lot of school during the period around her diagnosis, and we were all stressed out about it at first. In the end, she ended up missing about 6 months of school in 7th grade, and it wasn't that hard for her to stay caught up. For social stuff, we had her best friends visit her at home, and I stayed in touch with her teachers to keep up on what she was missing academically.
Good luck. I hope you get some answers soon, and that your son gets some relief from his pain.
Levsin does not help my son. too often. Blood tests are not always a good indicator because he eats through the remicade fast., we are waiting on remicade quautative. He should be feeling good based on blood tests, stool tests and recent remicade. He is not and he does not feel good enough to be in school with pain either, he can't focus. He is scheduled for Colonscopy Tuesday we can't do calprotectin test until closer to next remicade because remicade may mask or something. I've been messaging the nurses daily. I was hoping he could be admitted and have the colonscopy earlier. The virus should be gone but he could have caught something else. He is pale, but hemoglobin is okay. He is eating but everything causes pain but not eating causes pain. Yesterday when I got home from work he was laying on the floor, walking hurts, he doesn't want to go to the hospital and get more fluids as we go to luries and it's an hour from our house in good traffic. Thanks everyone for your help and ideas.
CarolinAlaska
Holding It Together
- Joined
- Jan 24, 2013
- Messages
- 2,574
She cannot attend school any more. She missed too much and it was too stressful to always be behind. Now she hates school. She homeschools now, and will probably continue to until she graduates next year, or whenever she is able to finish. She meets with her friends occasionally. She has a couple of friends who make it a point to come visit her. She also is part of a youth group at our church and a few crafting and art groups. It has been one of the hardest things for me to accept that she may not be able to go to college or maybe not even finish high school. We play it one day at a time, and I try to keep the hope that someday someone will find an answer for her to give her her life back. She has finished two years of high school and about 1/4 of her junior year, but she really won't write much and English has gone on the wayside.
I'm sorry for your daughter. I will be thinking about her quite often and I pray for a cure soon. Has anyone used CBD oil? Or have older kids who have a medical card or live in Colorado or states that allow this for and other alternative things for children?
