As a mother, it is hard to see your child in discomfort. My 5 year old had been hag stomach pain since two and half. We have had all kind of test done. Lab, ultrasound, and ct scan all normal. He had had colonoscopy and endoscopy and biopsies have shown crohn's. He had been on steroids and it had helped with the pain. He is now on imuran and his levels are low and his body is not responding to it. The doctors are just as confused as we are. To top it off he has lost weight and had not grown any in the last 6 months. Has any ones child experienced any of this before? I am starting to wonder if there is something else going on along with the crohn's.
What to do
- Thread starter Amanda H
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Hi and welcome.
So sorry to hear your struggles. So hard to deal with at any age.
My little farm girl(Grace) is 3 and undiagnosed as of yet. So I'm of little help when it comes to what to do. I do know most of these parents on this forum will be loads of help. They've all walk in your shoes and some of them have done it for a long time.
Again welcome aboard.
:soledance:Farmwife
So sorry to hear your struggles. So hard to deal with at any age.
My little farm girl(Grace) is 3 and undiagnosed as of yet. So I'm of little help when it comes to what to do. I do know most of these parents on this forum will be loads of help. They've all walk in your shoes and some of them have done it for a long time.
Again welcome aboard.
:soledance:Farmwife
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Sorry to hear about your little one!! It seems strange that your son is staying on the Imuran if it is not working. Crohn's has to be one of the most confusing diseases when it comes to treatments - every child seems to react differently. If it isn't working, there are quite a few different treatments available - they should try something else.
I'm sure I won't be the first to suggest this (it is a popular topic :smile - but has your son tried the EN liquid diet? When my son was diagnosed it was the first line treatment and helped get his stomach settled and his energy back for a while. Our docs seem to use Modulen (you need a dietician/nurse to monitor it and work out how much he needs) as the main one because it has all the nutrients plus an anti-inflammatory agent. It is 6 - 8 weeks exclusive then a gradual reintroduction of food. Good luck, hope you manage to get a med that helps soon! I know that Imuran can take a while to work but by 6 months I would have thought it is either helping or not.
I'm sure I won't be the first to suggest this (it is a popular topic :smile
- but has your son tried the EN liquid diet? When my son was diagnosed it was the first line treatment and helped get his stomach settled and his energy back for a while. Our docs seem to use Modulen (you need a dietician/nurse to monitor it and work out how much he needs) as the main one because it has all the nutrients plus an anti-inflammatory agent. It is 6 - 8 weeks exclusive then a gradual reintroduction of food. Good luck, hope you manage to get a med that helps soon! I know that Imuran can take a while to work but by 6 months I would have thought it is either helping or not.We just found out his body is not responding to Imuran this week. The doctors are worried about him because he experiences leg pain and back pain as well. They also are having a time deciding if it is crohn's because everything comes back negative expect biopsies. They call him a mystery patient. :sign0085: We have seen two gi doctors and they say the same thing. I am worried about him because he runs low grade temps as well.
We are going there. We are from south ga and drive 5 hours to Atlanta to see the best pouted doctors in the state. Promise you I have searched and called CCFA to see where to go. That is what is the hard part. We are seeing the best in the state and still have no answers.
DustyKat
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Hi Amanda and :welcome:
I'm sorry to hear about your little boy...:hug:
As Sascot has suggested Enteral Nutrition (EN) may well be a good alternative or supplementary treatment for your son. It has the advantage of providing all his nutritional needs as well as resting the bowel. Compliance may be difficult at your son's age but it would be worth a try.
It is not uncommon to have normal test results but still have Crohn's and delayed growth can be a symptom of IBD. There are also Extra Intestinal Manifestations (EIM's) of IBD including skin rashes, headaches, joint pain, mouth ulcers to name a few. Does your son have any other issues going on?
I saw you said he has lower back and leg pain.
How long has been on Imuran? How long since Pred was ceased?
Where is his Crohn's located?
Have they looked more closely into complications that may exist and that may also account for the lack of response to medications?
Sorry for all the questions!
Dusty. xxx
I'm sorry to hear about your little boy...:hug:
As Sascot has suggested Enteral Nutrition (EN) may well be a good alternative or supplementary treatment for your son. It has the advantage of providing all his nutritional needs as well as resting the bowel. Compliance may be difficult at your son's age but it would be worth a try.
It is not uncommon to have normal test results but still have Crohn's and delayed growth can be a symptom of IBD. There are also Extra Intestinal Manifestations (EIM's) of IBD including skin rashes, headaches, joint pain, mouth ulcers to name a few. Does your son have any other issues going on?
I saw you said he has lower back and leg pain.
How long has been on Imuran? How long since Pred was ceased?
Where is his Crohn's located?
Have they looked more closely into complications that may exist and that may also account for the lack of response to medications?
Sorry for all the questions!
Dusty. xxx
He does have problems with growth. He had been off of steroids now for close to two months. Been on imuran since Jan. The location of crohn's is in the ileum and rectum. He ccomplains as painful bms as well. he is also on the highest dose of imuran for his weight and white count will not drop. They have not mentioned the other treatment you are talking about.
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Welcome Amanda! I'm so sorry your 5 year old is feeling so bad and that it seems the Imuran is not working. We are from middle Georgia and we drive to ATL for our son's Ped. GI, he and his group have been wonderful! When C(my son) was being diagnosed he complained of leg, knee and back pain also. The diagnosing GI said that wasn't crohns and sent him to have his RA factors checked for Rhuematoid Arthritis, they all came back negative. The diagnosing GI had put him on pred. to no avail and was planning on starting C on Remicade because there was narrowing and felt due to the severity it needed to be hit hard with biologics. We moved C to the Atlanta GI group, he started tapering the pred and started the Remi. I told him about the back pain and leg pain and he said that is common with crohns when they are in an active flare. He added that the disease being located in the terminal ileum meant that C was have malabsorbtion issues and the lack of some vitamins could also cause those effects. Since he started having Remi the joint, leg, back pains have gone(he does have backpain from time to time but it is listed as a side effect of remi and happens only after infusion). Oh and also C always had fairly normal bloodwork, his disease never showed up in CRP or ESR, and was only slightly anemic according to HGT HBT and ferritin. Both GI's said they do see patients with severe disease that doesn't show up in their bloodwork and severity is only realized with colonoscopy, pill cam etc.
I really hope the doctor is able to get on top of this flare and able to get your son back in good health!!
I really hope the doctor is able to get on top of this flare and able to get your son back in good health!!
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Wow! I feel for you Amanda H! I know exactly what your going thru. But my son was 11 when dx with the same symptoms. He did the remi and metho stuff and it seemed to help but he has RA and developed Lupus which are side effects of the remi.
We want to put him on the EN but our hospital is pushing more towards Humira. It seems like they dont want to even try EN. In the UK, Canada & Australia it seems like EN is the first choice of treatment. Here in the US we all struggle to find answers and we get pushed into these biologicals quicker.
We are searching for a new Dr that will try this EN. Is there anyone out there in the US that knows of Drs that treat with EN??? I will go ANYWHERE!
I wish none of us had to go thru all of this with our kids! I'm glad we have this forum!
We want to put him on the EN but our hospital is pushing more towards Humira. It seems like they dont want to even try EN. In the UK, Canada & Australia it seems like EN is the first choice of treatment. Here in the US we all struggle to find answers and we get pushed into these biologicals quicker.
We are searching for a new Dr that will try this EN. Is there anyone out there in the US that knows of Drs that treat with EN??? I will go ANYWHERE!
I wish none of us had to go thru all of this with our kids! I'm glad we have this forum!
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We did EN and are in the US. I can pm you.
We failed EN, Pentasa, 6-mp and asacol.
DS is now about to start Remicade
Most normal blood work but abdominal pain, poor growth, urgency, leg joint pain, nausea and vomiting. So it is possible to still have crohn's.
Hope they can come up with another plan.
We failed EN, Pentasa, 6-mp and asacol.
DS is now about to start Remicade
Most normal blood work but abdominal pain, poor growth, urgency, leg joint pain, nausea and vomiting. So it is possible to still have crohn's.
Hope they can come up with another plan.
DustyKat
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When taking biopsies it is generally common practice that coeliac is one of the things that is also tested for but it would certainly be worthwhile ensuring that has been done.
With active rectal disease it is likely he will have painful bowel motions.
Since the biopsies are positive for Crohn's, and the locations certainly fit the picture as well, with a continued elevated white cell count and non response to medication past the initial Pred then to me it has come down to a "simple" failure of treatment or there are complications that they aren't seeing.
Do you know what his inflammatory markers, CRP & ESR, are?
Have they done any stool tests, Faecal Calprotectin, for inflammation?
I would be seeking another opinion since the doctors seem to be at a loss as to what to do next. The sooner things are sorted and dealt with the better for your little guy...:hug:
Dusty. xxx
With active rectal disease it is likely he will have painful bowel motions.
Since the biopsies are positive for Crohn's, and the locations certainly fit the picture as well, with a continued elevated white cell count and non response to medication past the initial Pred then to me it has come down to a "simple" failure of treatment or there are complications that they aren't seeing.
Do you know what his inflammatory markers, CRP & ESR, are?
Have they done any stool tests, Faecal Calprotectin, for inflammation?
I would be seeking another opinion since the doctors seem to be at a loss as to what to do next. The sooner things are sorted and dealt with the better for your little guy...:hug:
Dusty. xxx
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So sorry to hear about your son Amanda H. I think this is Crohn's for kids. We are in the same boat - and seem to keep coming back to it, meds work great, but only for a short time. The low grade fevers and body aches could be from malnourishment. My son's TI is is his main inflammation and has affected his growth. Have they done an upper-GI flouroscopy or CT scan to see the small intestine? My GI is mystified that my son's protein is now dropping again, but I think it's that Humira is failing. Maybe their bodies are too dang smart while still so young to defeat the meds. Hope you get some definitive answers soon.
We know it is not CD. All the biopsy for that has caned back normal. We have gotten second opinion and both doctors stay the same thing. The doctor called today with a new plan. We are to stop Imuran, have upper GI, colonoscopy/endoscopy, and thinking about doing pill cam. We wil be doing all of this within the next month.
We have any done food allergy testing. That came back normal. As a nurse I feel very comfortable with the doctor. Just do not like seeing my son hurting.
We have any done food allergy testing. That came back normal. As a nurse I feel very comfortable with the doctor. Just do not like seeing my son hurting.
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SOunds like a plan we have a repeat scope as well.
Insurance however gets to decide whether he has a pill cam or not- GI wants one.
Hopefully you will find a new med soon that works.
In the mean time has the doc thought about adding EN just to see if it helps while you are trying to find a new med/scope.
EVen if you just add it as a supplement.
My kiddo gained ten pounds in 4 months after nothing for over 2 years:eek2:
He drinks 3 peptamen jr. with prebio a day. plus normal food.
Since it is elemental the formula only needs the first little bit of the intestine to be absorbed which makes it ideal for crohn's kids.
regular boost kids etc is not broken down as much and needs more of the small bowel to be healthy to be absorbed.
You can ask the GI for a script and most insurances will cover it through the durable medical clause.
YOu just work with a durable medical equipment supplier.
You can order it on your own direct through the manufacturer.
Nestle and abbott both have different versions.
http://www.nestlenutritionstore.com...&searchCat=Pediatric Specialized GI Nutrition
http://www.abbottstore.com/child-nu...bklist=icat,4,shop,childnutr,pediasurepeptide
https://www.neocate.com/shop/p-24-e028-splash.aspx
Good luck
One more then when they did the biopsy's did they count the EOS?
look here it can also cause issues and some kiddos can have both.
http://apfed.org/drupal/drupal/index.php
Insurance however gets to decide whether he has a pill cam or not- GI wants one.
Hopefully you will find a new med soon that works.
In the mean time has the doc thought about adding EN just to see if it helps while you are trying to find a new med/scope.
EVen if you just add it as a supplement.
My kiddo gained ten pounds in 4 months after nothing for over 2 years:eek2:
He drinks 3 peptamen jr. with prebio a day. plus normal food.
Since it is elemental the formula only needs the first little bit of the intestine to be absorbed which makes it ideal for crohn's kids.
regular boost kids etc is not broken down as much and needs more of the small bowel to be healthy to be absorbed.
You can ask the GI for a script and most insurances will cover it through the durable medical clause.
YOu just work with a durable medical equipment supplier.
You can order it on your own direct through the manufacturer.
Nestle and abbott both have different versions.
http://www.nestlenutritionstore.com...&searchCat=Pediatric Specialized GI Nutrition
http://www.abbottstore.com/child-nu...bklist=icat,4,shop,childnutr,pediasurepeptide
https://www.neocate.com/shop/p-24-e028-splash.aspx
Good luck
One more then when they did the biopsy's did they count the EOS?
look here it can also cause issues and some kiddos can have both.
http://apfed.org/drupal/drupal/index.php
