100mg imuran for a 13 year old boy. Suggestions please!!

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momof8yrold

Joined
Sep 3, 2015
Messages
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Hi,

I'm back. Let me brief my son's journey so far. We are basically from India, living in United States from the last 7+ years.
My son was diagnosed with moderate-severe Crohn's disease in April'2015. His Crohn's disease was limited to several parts of the colon. No involvement of small intestine or other parts (confirmed with an MRE and endoscopy/colonoscopy). He had skin issues too, at the time of diagnosis. Dermatologist confirmed.., it was psoriasis. He had no complications though. He was admitted and started a course of steroids. Nothing worked and doctor finally put him on Remicade in Oct'15 (as a monotherapy). After 2 loading doses of remicade, he had C-diff and doctor had to hold the 3rd dose of Remicade. Then, he took remicade till May'2016, but looks like his remicade levels were very low and he started reacting during infusions.
He even got Mono in May'2016 and July'2016 was his last dose of Remicade. The doctor found he developed antibodies. Though the antibodies weren't that high, the doctor didn't want him to start on high dose of remicade, because of his reactions (during infusions!).

I was pregnant with second one then and asked doctor to start entocort as a bridge until we start Humira. My son was almost 10 by then. He did very good on entocort and he was on it for almost 9 months (until April 2017, with reduced doses though). Meantime, we started 50mg imuran and my son did great. He did get c-diff 2 more times during this time though, because of antibiotic use!!

Everything was going very well. However, doctor did a imuran therapeutic level check in Aug'2018 and informed us that his levels are low. He needs more Imuran as he's metabolizing it too soon. We asked him to wait as he was doing so good. My son did great till Nov'2018. His labs were fine, no symptoms. His symptoms became suddenly bad over the next 2 months and he stopped eating. He started throwing up (a little blood at the end!, scary!!), and we admitted him to the hospital in Jan'2019. His fecal calprotectin was 1800 then. A colonoscopy and endoscopy was done (he colon looked clean except for very few ulcers and a little active disease). But, his duodenum had inflammation. We didn't get the MRE as the course of treatment would remain the same. He was started on 9mg entocort (because he did pretty well on that last time!). His Imuran was increased to 75mg. He did great for the first 2 months when he was on 9mg entocort. His fecal calprotectin came down to 300's. Once they reduced the budesonide, his symptoms came back. Short and intense cramping, loose stools. We went to India for a vacation for a month. His food was all over the place. Last week, we got his fec calprotectin. It's 1800 again. His CRP and ESR is elevated. His Imuran levels are still not therapeutic. So, doctor put him on prednisone (40mg) from last week and wants him to start on 100mg Imuran. My son will be 13 soon and I am scared to give him that high dose. But, on the other hand, he did so well with that medicine that I do not want stop it too. I am worried about the big C warning for young male adults.

We go to Children's hospital in Michigan, Detroit. His GI doctor gives very conservative treatment and he is not aggressive. He knows that I am in this forum and I have a lot of knowledge about medication and disease (all thanks to this group!!). I haven't started him on 100mg imuran though.

Now the options I have are.
1. Start him on 100mg Imuran as suggested by doctor. I would be happy to hear from mom's of teen boys, young adult male taking this medicine without any problems.
2. Ask the doctor to switch to Humira and stop Imuran. He'll do it if I ask, but he will not take the initiative to start it.
3. Change the doctor and look for a doctor who is up to date with the treatment and disease.

I like my son's GI. He always answers our calls/concerns, calls back immediately if the blood or stool numbers are not right. Sends the medication/scripts on time without fail, accommodates his schedule to see my son. But, the only thing is.., he is not up to date with the disease and the medication. It is like, I ask him to give this and he gives or else nope!!

I need your suggestions please. I'm torn between the decisions. My husband doesn't know about the disease either. All he says is.., let's do the way you want!!
I need your expert advice again. Pretty please...

PS:
1. I'm also thinking of taking a second opinion from Boston's Children's Hospital. I see that they provide a online second opinion for 675 dollars (insurance not accepted). The opinion will be given in 7 days. Has anyone used that facility?
or
2. Should I switch to CS Motts Children's Hospital in Ann Arbor? Anyone from this group going there?
 
Momof8yrold - it sounds to me that another biologic would be the best thing for your son. He may have reacted to Remicade but he may very well do well on Humira or Stelara. I am not from the U.S. but there are many parents on this forum who probably reach out to you shortly with some good suggestions on all fronts.
 
So for male or females imuran and 6-mp are no longer used due to high lymphoma risks (they did use them about 9 years ago for ds but studies have found it’s not the best treatment course for the risk )

The second risk is for T cell lymphoma that’s when imuran /6-mp are combine with a biologic
It can be when you have taken 6-mp in the past
But us much higher when the two are taken together
The risk is not the same when biologicssabd mtx are combined

Ds was on 6-months for 8 months at dx
His levels were also too low after raising the dose levels went up but so did liver enzymes
Added allopurinol
Liver got better -levels went down

Remember the goal of meds is complete mucosal healing
That means a completely clean scope
No inflammation seen no ulcers nothing
Just nice pink healthy intestine

When Ds was on 6-mp mild inflammation
Was found
Remicade clean and pink
Humira clean and pink
Stelara inflammation found so we raised the dose


Definitely get a second opinion
Your Gi should listen to you
But they should be doing the driving
While getting your input

My kiddo did great on humira after reacting to remicade
No issues for over 5 years


Good luck
 
I would get a second opinion. Questions I would ask

- what are the risks? Real percentages.
- do risks increase with dose or length of use? For some drugs the risks are the same whether you were on the drug for a short time or long and also some risks don't increase with dose increase
- the duodenum is notoriously hard to treAt. Success rate of aza for that area specifically. Humira? Stelara?

Personally I would lean toward humira or Stelara. Few reasons. Overall it has a much better success rate. Lower risks. He is hitting puberty soon and you really want to control disease to capitalize on growth. Also the sooner you control disease the more likely it is that you can change the course of disease.

Continued use of aza in my opinion is not conservative.

Sorry you are having to deal with all of this and manage the GI also. I totally get all the pros of this doc though. It is hard to give that up.
 
Thank you all for your valuable time and feedback. We are meeting his GI on Monday. We will talk to him about the second opinion.
Meantime, we have already decided to take the online second opinion from Boston Children's Hospital.
Based on the opinions we get from the Boston Clinic, we will move forward.
Also, during our meet on Monday, I'll ask my son's GI to check with other doctor's too (they are a group of 5 GI specialists there).

Will keep you guys posted!!
 
We met our son's GI yesterday. I told him that, we are not in favor of increasing his Imuran and we also told him about getting a second opinion. He did encourage us to go ahead and get a second opinion. The GI asked us to start him on Humira as soon as possible. The doctor wants my son to be on Humira + Imuran for 6 months and then take him off Imuran. The doctor said, the nurses will work on the insurance approval and we will be updated once the insurance approves Humira. The doc said, the exact dosage and the frequency of Humira will be decided later.
 
Glad you gave a decision
Humira has a kiddie dose and “adult “ dose this is based on weight only
Most kids need the “adult “ dose of 40 mg
Frequency
Standard is every 14 days to start
Some find they need
Every 10 days ,every 7 days
Max frequency is every 5 days
Dosage is never higher than 40 mg except for loading doses(then it’s multiple injections at once )

Ds was on the “adult “ dose at age 9
Till age 14 when it stopped working

Good luck with the humira and second opinion
Any questions let me know Ds was onnit a long time
Great med
 
Pediatric Crohn’s Disease
The recommended HUMIRA dose regimen for pediatric patients 6 years of age and older with Crohn’s disease (CD) is based on body weight as shown below:

Pediatric PatientsInduction DoseMaintenance Dose
Starting at Week 4
(Day 29)
17 kg (37 lbs) to < 40
kg (88 lbs)
  • 80 mg initially on Day 1; and
  • 40 mg two weeks later (Day 15)
  • 20 mg every other week
≥ 40 kg (88 lbs)
  • 160 mg initially on Day 1 (given in one day or
    split over two consecutive days); and
  • 80 mg two weeks later (Day 15)
  • 40 mg every other week
Click to expand...


From

https://www.drugs.com/dosage/humira.html
 
I agree with everything said above - pediatric GIs are now trying to avoid Imuran and 6MP, especially for adolescent boys. Our GI did put my daughter on Imuran, but only because she had failed Methotrexate (which is safer than Imuran) and she could not be on a biologic for her Crohn's (she has severe arthritis and after failing all the anti-TNFs, we switched to a biologic that would work for the arthritis but not for the Crohn's. She had severe, aggressive arthritis and mild Crohn's, so we felt the switch was needed and the risk of going from an anti-TNF to Imuran was worth it).

She had the same issues with Imuran as your son - we could not get her up to therapeutic levels. We had to up the dose but still could not get to therapeutic levels without it affecting her liver enzymes. So then we added Allopurinol and got her to therapeutic levels. Then Imuran worked but she got infection after infection, which is not her norm. She usually gets one cold a year and that is it. But that year, she was on antibiotics 6-7 times.

We finally stopped Imuran when she got a throat infection requiring antibiotics which led to C.Diff. At that point her GI said Imuran was causing too many infections. I mention this because you said your son has had C.Diff multiple times from antibiotics. Once we stopped the Imuran, infections stopped and no need for antibiotics.

At that point we actually had to add a second biologic for her Crohn's. She is on Cimzia, which is an anti-TNF. So now she is on two biologics and an immunomodulator. Even on the 2 biologics, she does not get infections like she got on Imuran!!

All this to say that of all the medications my daughter has been on, Imuran was the scariest!!

A biologic sounds like a good decision. I'm honestly surprised your GI went from Remicade to Imuran - that's sort of going backwards in terms of efficacy.

The advantage with Humira is that it works faster than Stelara. If you search the forum, you will find lots of threads about how much Humira hurts and burns. It used to but the preservative that caused that horrible burning (citric acid/citrate) was removed recently and now most kids say it barely hurts at all.

Typically with Humira, you start with 40 mg every 2 weeks (if your son is over 66 lbs, which I assume he is), after the loading doses are done. My daughter was 12 and about 80-85 lbs and she started on 40 mg every other week.

Good luck!!
 
Maya142 said:
I agree with everything said above - pediatric GIs are now trying to avoid Imuran and 6MP, especially for adolescent boys. Our GI did put my daughter on Imuran, but only because she had failed Methotrexate (which is safer than Imuran) and she could not be on a biologic for her Crohn's (she has severe arthritis and after failing all the anti-TNFs, we switched to a biologic that would work for the arthritis but not for the Crohn's. She had severe, aggressive arthritis and mild Crohn's, so we felt the switch was needed and the risk of going from an anti-TNF to Imuran was worth it).

She had the same issues with Imuran as your son - we could not get her up to therapeutic levels. We had to up the dose but still could not get to therapeutic levels without it affecting her liver enzymes. So then we added Allopurinol and got her to therapeutic levels. Then Imuran worked but she got infection after infection, which is not her norm. She usually gets one cold a year and that is it. But that year, she was on antibiotics 6-7 times.

We finally stopped Imuran when she got a throat infection requiring antibiotics which led to C.Diff. At that point her GI said Imuran was causing too many infections. I mention this because you said your son has had C.Diff multiple times from antibiotics. Once we stopped the Imuran, infections stopped and no need for antibiotics.

At that point we actually had to add a second biologic for her Crohn's. She is on Cimzia, which is an anti-TNF. So now she is on two biologics and an immunomodulator. Even on the 2 biologics, she does not get infections like she got on Imuran!!

All this to say that of all the medications my daughter has been on, Imuran was the scariest!!

A biologic sounds like a good decision. I'm honestly surprised your GI went from Remicade to Imuran - that's sort of going backwards in terms of efficacy.

The advantage with Humira is that it works faster than Stelara. If you search the forum, you will find lots of threads about how much Humira hurts and burns. It used to but the preservative that caused that horrible burning (citric acid/citrate) was removed recently and now most kids say it barely hurts at all.

Typically with Humira, you start with 40 mg every 2 weeks (if your son is over 66 lbs, which I assume he is), after the loading doses are done. My daughter was 12 and about 80-85 lbs and she started on 40 mg every other week.

Good luck!!
Click to expand...
My son did not catch any infection when he was on Imuran. He felt his best with that drug. The antibiotic use was before he started Imuran. He fell sick many times when he was on Remicade and got C-diff too. But, none with Imuran.
 
My son is 92 lbs and 4 ft 10 inches. He is the shortest in his class. He will start 8th grade soon. Thank you for all your responses. We had his PPD test today (because of our recent travel to India), will need to wait for 48 hours for the result.
 
Because your child is immunosuppressed
They typically recommend the quantiferion gold blood test since it has a control
That said once you have a ppd skin test they can’t do the blood test for 6-8 weeks
 
My son did not catch any infection when he was on Imuran. He felt his best with that drug. The antibiotic use was before he started Imuran. He fell sick many times when he was on Remicade and got C-diff too.
Click to expand...
I'm sorry, I misread that!!

You mentioned your son is the shortest in his class. Since some kiddos with IBD (especially in the small bowel) have growth issues, has his bone age ever been checked? Is he growing and gaining weight normally? If not, then I would consider formula. It does not have to be EEN - many kids use it to supplement their diet. Some kids drink and some use an NG tube. Formula helps a lot when a kiddo is very inflamed and cannot absorb regular foods. There are 3 types - polymeric, semi-elemental and elemental. Polymeric formulas are the most palatable but can be hard to tolerate, for a kiddo who is very inflamed. Some kids do fine on them, others need easier to absorb formula. Boost, Ensure and Pediasure are examples of polymeric formulas.

Semi-elemental formulas are more broken down and easier to digest than polymeric formulas, but are less palatable. Some kids are able to drink them with no problems, and others have to be coaxed (or bribed!). Others need feeding tubes.

My daughter absolutely hated them at first but over time, got used to drinking them. She wasn't able to drink enough to maintain her weight, much less gain, so we did have to go to a feeding tube, so she could do overnight feeds. She'd put in the NG tube about 2- 3 hours after dinner, did the feed overnight and would pull out the tube in the morning - no one at school had to know!. That really helped - she had been severely underweight and getting good nutrition made a huge difference. Many GIs like to use semi-elemental formulas for IBD patients - Peptamen Jr and Pediasure Peptide are commonly used.

Finally, there are elemental formulas, which are very broken down - into amino acids. They tend to taste pretty awful and feeding tubes are often needed for kids who need elemental formula. My daughter tried to drink some and said they tasted like stinky feet. Most kiddos don't need elemental formula but some do.

Wanted to add - supplemental EN is used in addition to meds, not in place of them, and can really help kids with IBD grow and gain normally. Worth exploring at the very least. My daughter was severely underweight and malnourished and it really helped her.
 
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One other thing given his height /weight
Have they had him monitored by Endo
Sometimes crohns causes issues with growth
But other times it’s other stuff

Adding in shakes (any kind ensure , slim fast , carnation instant breakfast etc..) are easily absorbed calories and help crohns kids with growth
 
Ds was on peptamen jr from age 7-12 as extra calories was switched to Neocate jr (amino acid based ) from 12-15 he drinks his orally so is the exception
 
my little penguin said:
Because your child is immunosuppressed
They typically recommend the quantiferion gold blood test since it has a control
That said once you have a ppd skin test they can’t do the blood test for 6-8 weeks
Click to expand...
My son's quantiferon gold test comes as indeterminate because of his BCG vaccine. He got that blood test done last week. Most Indians born in India get BCG vaccine. Hence, his GI does both the blood and the PPD test.
 
My son drinks pediasure as elemental formula. He is drinking it since his diagnosis. About 50% of his calories come from Pediasure. He will soon transition to Boost or something else. He has no problems drinking it. We did meet the Endo couple of years back and she didn't seem to be bothered. Looks like, we should meet her again.
 
I thought I read that if you got the bcg vaccine you couldn’t get a ppd test since it would be positive
Only the blood test was valid

Many people born outside of the United States have been given a vaccine called BCG.

People who were previously vaccinated with BCG may receive a TB skin test to test for TB infection. Vaccination with BCG may cause a false positive reaction to a TB skin test. A positive reaction to a TB skin test may be due to the BCG vaccine itself or due to infection with TB bacteria.

TB blood tests (IGRAs), unlike the TB skin test, are not affected by prior BCG vaccination and are not expected to give a false-positive result in people who have received BCG. TB blood tests are the preferred method of TB testing for people who have received the BCG vaccine.
Click to expand...


From
https://www.cdc.gov/tb/topic/testing/testingbcgvaccinated.htm
 
@momof8yrold
Pediasure is a polymeric formula (meaning completely intact proteins like whole food )
Boost is similar for adults

Elemental formula would be with no intact proteins such as Neocate jr or elecare

When it comes to supplemental nutrition any shakes (slimfast carnation pediasure etc ) are all a good thing

Puberty is when fast growth occurs so Endo is important to see before growth window closes

I can say
One kiddo without ibd was only 5’1” at the end of 8th grade
Now in 11th grade is over 5’11

My Ds was 5’2” at the beginning of 8th grade
And now in 10th grade at 5’9” so some do just grow later
Remember small bones grow before long
So feet and hands grow first
When you have to buy new shoes every three months
Growth spurt to follow
As well as “mom I am hungry “ starts after dinner
 
my little penguin said:
I thought I read that if you got the bcg vaccine you couldn’t get a ppd test since it would be positive
Only the blood test was valid




From
https://www.cdc.gov/tb/topic/testing/testingbcgvaccinated.htm
Click to expand...
But for my son, it's always reverse. His PPD test comes negative and blood test as "indeterminate". And his GI is not American. He has got a BCG vaccine too and he gets PPD test every time, he comes back from his home country. The doctor's blood test comes as " indeterminate" too :)
 
my little penguin said:
@momof8yrold
Pediasure is a polymeric formula (meaning completely intact proteins like whole food )
Boost is similar for adults

Elemental formula would be with no intact proteins such as Neocate jr or elecare

When it comes to supplemental nutrition any shakes (slimfast carnation pediasure etc ) are all a good thing

Puberty is when fast growth occurs so Endo is important to see before growth window closes

I can say
One kiddo without ibd was only 5’1” at the end of 8th grade
Now in 11th grade is over 5’11

My Ds was 5’2” at the beginning of 8th grade
And now in 10th grade at 5’9” so some do just grow later
Remember small bones grow before long
So feet and hands grow first
When you have to buy new shoes every three months
Growth spurt to follow
As well as “mom I am hungry “ starts after dinner
Click to expand...

My mom-in-law tells the same thing to my son all the time. She says.., your dad was so tiny when he started his 8th Grade. He started growing when he was 14 or so.., but this kid feels so bad for his height. We will ask for an appointment with endo soon. Just to be sure. Your inputs are very encouraging. Thank you. I'll show this to him :)

Only his colon was involved when he was diagnosed(They did colonoscopy, endoscopy and MRE). But, now looks like.., his small bowel is involved too. Because the recent endoscopy showed inflammation in duodenum. We did not get a follow up MRE though. Do you think, I should ask about elemental formula?
 
My son was very tiny when he was at the end of grade 8 going into grade 9. He was 5 feet and only 85 lbs. Some boys bloom a little later - he caught up with his friends a few years later. He is a young adult now at 5'8" and 132 lbs (and still gaining thanks to treatment). He wasn't diagnosed with crohn's until last year but I suspect he started in his early teens. Your son's BMI is within normal range. Although it is always good to check things out, I'm sure he will catch up with his friends soon. I was only 5 feet tall and 96 lbs when I started high school (I'm a female though) but was the smallest entering high school but by the end of high school Iwas 5'5" (taller than my friends that were so much taller than me when I started high school).
 
My son's quantiferon gold test comes as indeterminate because of his BCG vaccine. He got that blood test done last week. Most Indians born in India get BCG vaccine. Hence, his GI does both the blood and the PPD test.
Click to expand...

We were told the exact opposite (what my little penguin said above) - that the blood test needs to be used if the patient has had the BCG vaccine.

We lived in the India when my girls were young. Both got the BCG vaccine. Because of that, they both have positive PPD results. We saw multiple infectious disease doctors who all agreed it was from the BCG vaccine and said to use the Quantiferon Gold test (the blood test) and so we have always used that and both girls are always negative. They were both required to have it prior to starting biologics and now we do it every so often - definitely after any trip to India. We also did chest x-rays just to be sure, before starting biologics.
 
My mom-in-law tells the same thing to my son all the time. She says.., your dad was so tiny when he started his 8th Grade. He started growing when he was 14 or so.., but this kid feels so bad for his height. We will ask for an appointment with endo soon. Just to be sure. Your inputs are very encouraging. Thank you. I'll show this to him
Click to expand...

She's right - some boys do grow later. My nephew was 5'1 or 5'2 at the end of 8th grade. He was the shortest among his friends and hated it - was very self-conscious and got teased 😢 . By the time he graduated, he was 5'8 and still growing. He does not have Crohn's though - just a late bloomer.

It's great that he is drinking Pediasure!! Is he gaining weight or is he sort of stuck around 92 lbs? I'm just wondering if he needs a more broken down formula - a semi-elemental formula is easier to digest and given the inflammation in his duodenum, it may really make a difference in terms of weight gain, because it's possible he is just not absorbing the polymeric formula (Pediasure), which is has whole proteins.

Peptamen Jr. and Pediasure Peptide are semi-elemental formulas and have broken down proteins. They are more difficult to drink because they are less palatable. But kids do get used to them.

I would agree that you should see an endocrinologist, because the window for growth can be small and it's better to see one earlier rather than later.
 
Update on my son:
Humira is approved from the insurance. Our doctor has recommended pediatric dose for my son. My son is a little over 40 kgs and our doctor wants to start with lower dose. Our doctor (as usual) doesn't want to pump unnecessary medicines. If lower dose doesn't seem to work, we can increase the dose is his recommendation. Going little and then increasing is his strategy. I'm not sure how to go about it. His GI did the same thing with Remicade and I believe that was the reason why my son built antibodies to that medicine so quickly. His Remicade levels were NIL by 5 weeks and still we did not increase his Remicade levels. I'm really really scared on that. But, my son's GI doesn't believe in my theory.

Meantime, we have started the online second opinion process from Boston Children Hospital. They might need 3 weeks for their opinion. The nurse from Boston called up and I told her that, we are waiting a response from you to start the medication. She however thinks, we should start it and not wait.

My son started tapering prednisone from today. His labs came back normal (ESR & CRP). He feels great too. But, we all know this is temporary.

I am still in a dilemma whether to start pediatric dose of Humira for him from next week or wait for the second opinion results. What are your inputs? Did anyone use pediatric dose Humira for 42 kgs kiddo?
 
Short answer no Ds was below the crohns weight for adult dosing at the time (but almost past it )
So we did 3 months of pediatric dose for nothing
Then upped it

The humira box has weight ranges for a reason
To be effective you need to be under a certain weight

https://www.humira.com/pediatric-crohns/start-pediatric-crohns-treatment

This is straight from the humira company
So at 92 lbs
More than over the minimum weight

We were told under dosing is taking all of the risk of a biologic but none of the benefit

Have you showed the Gi the humira standard website ?????

I am all for lowest effective dose
But humira company did trials and theses were the weights they deemed a dose increase was needed

This is not humira 40 mg every 5 days
But standard pediatric dose recommendation for crohns patients above 87 lbs
 
Update:
I called the doctor 2 times to convince him for the dosage recommended by the Humira site. He did not seem to get convinced and finally, ased me.., what do you want me to order him. I firmly said.., whatever the Humira site recommends. He took a deep sigh and said.., as you say. I wonder how hard, it'll be for me to convince the doctor to make a switch from Imuran to MTX. I'm not in favor of combining Imuran with Humira. I'm just hoping the second opinion from Boston comes before we start him on Humira.

I worry sometimes, am I taking a wrong decision? Should I go with the doctor and not become over smart. But, the other mind says.., he's my son. I should do what is good for him. So, tough to deal this situation.

To add on to it, the prednisone is making my son.., "not listen to his parents" . He went on to play soccer and fractured his right wrist. Grrr., as if he needed more doctor visits and more absences from school. Running to a pediatric orthopedic today.

How long does Humira take to work? We started tapering his Prednisone this week and I'll check with the doctor about keeping a minimal dose until Humira kicks in.
 
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I think you did the right thing to push for the higher dose--sorry that you got so much pushback from your doctor. And really sorry to hear about the fractured wrist. Ugh!
 
I am guessing Boston's opinion will be to switch to MTX based on what they told another mom here recently. The thing is, if you change too many things at once, you won't know what is really helping. So I "might" stick with the Imuran for a little bit and wait to see what happens. Whether Humor kicks in or not, I would eventually switch over to Mtx because of the risks with Imuran.

Has he had his bone density tested? Kids with Crohn's are known for having low bone density and thus more prone to fractures, breaks etc. Not saying that this is why he got the fracture...kids will be kids after all and I have friends who have non IBD boys and they are always in the ER for breaks and sprains and such. Just a good thing to check out, especially given he has this fracture now.

I agree with you on pushing for the dose that Abbvie recommends. It is beyond me why a doc would use less. I also think that he should be on some level of prednisone or EEN until Humor has built to a therapeutic level and can take over the entire disease burden.
 
Couple of questions..,
1. How risky is it to start Humira as a monotherapy and then add in MTX after couple of months? I do not want to give Imuran and Humira together. Trying to avoid it as much as possible.
2. My son's GI suggestion is to give Imuran and Humira together for 6 months only and then stop Imuran. Is it reasonable?

We have got the approval for the new dose of Humira and he might start it from next week.
 
So the issue is once you have reacted to one drug
The odds of building antibodies to another drug is higher then say an average kiddo on monotherapy
That said Ds reacted to remicade twice While on monotherapy
And then switched to monotherapy humira
No reaction
Only added mtx after a year due to juvenile arthritis
He did lose response to humira
Every year dose frequency had to be increased
Until it just plain stopped working
We did have to have him stop humira a few times due to adenovirus/non ibd surgery
The last stop was non ibd related surgery for 6/8 weeks
Which resulted in humira not working

None of Ds docs would use imuran or 6-mp woth a biologic
Especially not young males
We asked more than once
Only mtx

Will add Ds never had antibody testing for humira
Wasn’t available at first
 
Finally my son started loading doses of Humira (adult dose) this week. He is still on 20mg prednisone and 75mg Imuran. The plan is to stop Imuran in the next 6 months.

Meantime, we also got the second opinion from Boston Children's Hospital. They are recommending us to get a in-person second opinion from a IBD specialist center like CS Mott (Ann Arbor). Boston Clinic is not sure how experienced is the pathologist from the current hospital that we are seeing. Also, Boston Clinic is doubting on the diagnosis. They are not sure whether it is Crohn's or Colitis. I'm not very satisfied by the second opinion.

I called Boston Clinic and told them that, we did go to CS Mott, had another set of eyes, read the colonoscopy slides.., and they also concluded that my son has Crohn's disease. I'm feeling that we wasted the money for nothing!

Meantime, I'm very very scared of giving Imuran with Humira.., but at the same time, I do not want to add 2 new medicines. My son is kind of stable now..
No tummy aches, no loose stools, no blood.., thanks to Prednisone. The plan is to taper the prednisone by the end of this month.

I just hope that the Humira kicks in the earliest and we stop the Imuran. I'm having anxiety about this all the time now...
 
My son has been on azathioprine for 2.5 years now. I cried and cried and cried when I first read the warnings. I totally understand where you are coming from. My son is 18 now and 180 pounds at 6 foot 3 inches. He is on 150 mg of Imuran and I worry every day. My son is back in a flare so he doctor has added sulfasalizine (due to cost). I hate that our kids have to take such powerful, scary medicine. I just pray that I am not making a huge mistake by allowing my son to be on Imuran. I am so sorry that your son is going through this. As parents, we want the best for our kids. I hope he gets healthy very soon (my kid too!). To answer your question, he has done well on the drug and gained 30 pounds (no height as he was already tall). No side affects that we are aware of. It just took a year for it to work. My son was in remission for a little over a year and started another flare this summer.
 
Meantime, I'm very very scared of giving Imuran with Humira.., but at the same time, I do not want to add 2 new medicines. My son is kind of stable now..
No tummy aches, no loose stools, no blood.., thanks to Prednisone. The plan is to taper the prednisone by the end of this month.
Click to expand...
@momof8yrold The side effects and risks associated with Imuran do increase as the amount of time on Imuran increases. So staying on it for 6 months and then dropping it is unlikely to make a huge difference. If however, he flares when you stop Imuran, I would add MTX then since it's safer.

@sgholmes2002 I'm so glad to hear your son is doing better!! Remind me, does he have Crohn's or UC? Because Sulfasalazine is one of the 5 ASA drugs and while it may work well in UC, it may not do much for Crohn's. You've probably heard this before, but it's said to be like aspirin for a brain tumor - it won't hurt, but it won't do a whole lot.

If it doesn't help, I would use that opportunity to get him off Imuran and either try MTX or a biologic. I know changing drugs is scary but if he's flaring, then it's probably necessary. There is a great video on Youtube of Dr. Baldassano, who heads the pediatric IBD clinic at CHOP and actually has pediatric onset IBD himself and was on Imuran/6MP for years, talking about the risks and benefits associated with Imuran and whether it should still be used for pediatric IBD. I'll try and find it.
 
Maya142 said:
@momof8yrold The side effects and risks associated with Imuran do increase as the amount of time on Imuran increases. So staying on it for 6 months and then dropping it is unlikely to make a huge difference. If however, he flares when you stop Imuran, I would add MTX then since it's safer.
Click to expand...

Thanks a lot Maya142 for your comforting words. My son is on Imuran from the last 2.8 months. Hoping to stop it soon. Imuran was a wonder drug for him, while it worked!

Update: My son completed loading doses of Humira and will start his maintenance dose from next week. No side effects for now (knock on wood!). He is doing good and I'm praying God that he stays that way for the rest of his life. His tummy aches, nausea, diarrhea, feeling full after eating very little have reduced and he's eating so so much. I do not know what to feed him next. He's hungry every other hour and takes a big portion of food.., He is tapering his prednisone to 5mg this week and it'll be gone in the next 10 days or so. That's a great news for us.
Hopefully, he'll start growing soon (that's his major concern!). He's 4 ft 10 inches from the last 1 year or more. Not a single inch of growth!

Thanks all ladies for your continuous support.
 
Hungry is good
Weight tends to pile on prior to growth
Both my kiddos gained 20-40 lbs each
Within months
Then grew 7-9 inches within a year
Around 13-15
So have snacks handy (meals of chicken breast strips veggies /rice and wraps ) they can through together when they are hungry 5 minutes after they ate ;)
 
Remember short bones (hands and feet ) grow before long bones
So when you have to replace shoes every three months
Pants are coming soon ;)
 
Updates on my son.

He is on Humira 40ml every other week with 75mg Imuran/everyday. He seems to be okay. He tapered the prednisone in October'2019 and no blood in stools. His last colonoscopy(Feb 2019) showed inflammation in duodenum and his symptoms were severe nausea, vomiting.
He still feels full sometimes with certain foods but mostly doing great. He has grown by an inch in the last 4 months (He is 4 feet 11 inches now, still shortest in his school..., but still yay!!) and increased his weight from 40kgs to 50kgs (double yay!!)

The weight increase was mostly because of prednisone but he's holding some of that weight for 4+ months after tapering.., so I'm happy about it. His appetite is good too. He eats the needed calories but not definitely nutritious food. He still has a big list of no-no's.

His fecal calprotectin before starting the prednisone was 1800 and his latest is 800 (still high). His ESR was around 18 last time and latest is 3. CRP was also about 21 and recent is <5 (Our labs do not give the exact number, anything <5 is considered normal here). So, all in all he's doing good except his fec cal. Our doctor wants to do an MRE by March and another fec cal test before removing the Imuran from his medicine list. His Vit D is still low and his ferritin is low too (but better than before is what his doctor said). He is on supplements for Vit D and Iron. We increased the Vit D to 50,000IUD per week.

I'm pushing the doctor to stop imuran after 6 months but with fec cal this high I do not want to risk more inflammation.

His blood numbers are never very high and the fec cal is always a reliable measure for him.

That's it from my side. Hope all your kiddos are doing great too. I keep praying for all the IBD kids and their moms/dads. I feel this is a harder disease on parents than the kids. Hugs to you all.
 
If he started end of oct 2019
Then he has a bit for humira to fully kick in
Takes 3-7 months
For ds 7 months due to lower dose humira
What does is he at now that he is 50 kg ?
The adult dose of 40 mg per 14 days ?

2.4 Pediatric Crohn’s Disease
The recommended HUMIRA dose regimen for pediatric patients 6 years of age and older with Crohn’s disease (CD) is based on body weight as shown below:
Pediatric Patients
Induction Dose
Maintenance Dose Starting at Week 4 (Day 29)
17 kg (37 lbs) to < 40
kg (88 lbs)
• 80 mg initially on Day 1; and
• 40 mg two weeks later (Day 15)
• 20 mg every other week
≥ 40 kg (88 lbs)
• 160 mg initially on Day 1 (given in one day or
split over two consecutive days); and • 80 mg two weeks later (Day 15)
• 40 mg every other week
Click to expand...

from
https://www.rxabbvie.com/pdf/humira.pdf
That may lower his inflammation more
 
my little penguin said:
If he started end of oct 2019
Then he has a bit for humira to fully kick in
Takes 3-7 months
For ds 7 months due to lower dose humira
What does is he at now that he is 50 kg ?
The adult dose of 40 mg per 14 days ?



from
https://www.rxabbvie.com/pdf/humira.pdf
That may lower his inflammation more
Click to expand...
He started on adult dose( 40mg per 14 days) and doing the same even now. He had his loading doses in the first week of October 2019. So, it's almost 4 months.
It is working and he's slowly getting better I suppose. He is on a flare from the last 18 months.
 
Glad he's doing better. My daughter took ages to respond to Humira, but once she did, it worked like magic for a while. She got to be a completely normal teen for the first time! It took 6 months AFTER we upped the frequency to weekly and added MTX.
You mention wanting to stop Imuran. I'm sure that is partially because of the cancer risk and I wholeheartedly agree, after reading plenty of research, that MTX is safer. Has your doctor considered MTX for him? Stopping Imuran might be hard, given his fecal calprotectin is still quite high. Like you said, you don't want there to be lingering inflammation since that can and will cause damage after a while. But MTX might help and it's safer. I'd ask if that's an option.
 
My son's GI doctor is not in favor of MTX. No idea why? He keeps telling that, all medications come with a side effect and Imuran has worked for your son. Why do you want to stop it or switch now? The doctor is ready to take him out of Imuran once his condition is better. We will do a follow up fecal calprotectin and an MRE to make sure, there is no inflammation.
Boston's Children's Hospital second opinion asked us to get a Colonoscopy done before taking him off Imuran, but our doctor doesn't want to probe him again. His suggestion is MRE.

Even I am not in favor of probing him again.

DS is very tough when it comes to pain. He handles it very well and says.., he's doing good, even when he is miserable So, I can't trust him. Since, it's been a month, I am thinking of checking with the doctor for another fecal calprotectin test. No idea if insurance would accept it.
 
No one is a fan of scopes ever
Especially not for their kids
But big BUT
Your child is not doing well
MRE while easier only shows one part of the intestine not the full picture
Just like colonoscopy only shows part of the picture

they do both to get a complete picture and to determine if the meds are working
If they are not they need to know truly how bad the situation is
MRE only won’t tell you that
Neither will just a scope

your Gi isn’t willing to “listen to “ Boston children’s recommendations?
That’s concerning
We have gotten second opinions at big places and our Gi always followed the recommendations
 
My son's GI doctor is not in favor of MTX. No idea why? He keeps telling that, all medications come with a side effect and Imuran has worked for your son. Why do you want to stop it or switch now? The doctor is ready to take him out of Imuran once his condition is better. We will do a follow up fecal calprotectin and an MRE to make sure, there is no inflammation.
Boston's Children's Hospital second opinion asked us to get a Colonoscopy done before taking him off Imuran, but our doctor doesn't want to probe him again. His suggestion is MRE.
Click to expand...
All meds do come with side effects. However, the side effects of Imuran and the increased cancer risk are the reasons why most pediatric GIs are now trying not to use Imuran or 6MP. Imuran increases the chances of regular Lymphoma, non-melanoma skin cancer and of a very specific type of T-call Lymphoma (hepatosplenic t-cell lymphoma) which is often fatal.

The cancer risks with MTX are much lower. My daughter has been on 9 biologics and something like 6 different immunosuppressants/immunomodulators (some for arthritis, some for IBD, some that treat both) and of all the drugs she has tried, Imuran was the only one that caused a significant increase in infections and she had a mole on her scalp more than double in size in less than a year. It was big and irregularly shaped and we were told that while it was probably not cancerous at that time, it could easily become cancerous later. So she required a minor surgery to remove that mole, but it turned out that it had become quite deep and so it took 6 months to heal (she literally walked around with a hole in her head for 6 months!!), due to the Imuran (normally, it would take 1 month to heal) and Prednisone. That, plus the increased infections with Imuran led to us stopping it.

I would DEFINITELY get a second (or third!) opinion - in fact, I'd probably even switch to a different GI. Your GI does not seem to be up on the research about the risks of Imuran/6MP and seems to have treated your son very conservatively (starting him on a low dose of Humira when he was above the pediatric weight cut-off seems just silly to me).

Plus, as said above, an MRE isn't a substitute for scopes. Scopes, while not fun, are necessary to get a better of picture of what is actually going on. It sounds like Imuran and Humira are not controlling his disease. The normal course of action would probably be to increase his dose of Humira from every 14 days to every 7. And if Imuran is not even working, why bother keeping him on it? If you look at risks vs. benefits, it seems to me that the risks for Imuran outweigh the benefits. I would switch to MTX - perhaps it will work better and it should prevent antibody formation.
 
Thank you all. We had his fecal calprotectin tested last week and got the number as 900+
Our doctor is suggesting the scope. He is on Humira for 7 months now along with Imuran.
We are doing an antibody and Humira level test next week.

Plan is to increase the Humira if the level is low.
He's not showing much symptoms though. He wouldn't let me check his stools(13 year old now :) )

This disease will never let us sit at peace.
 
Update again:
His Humira level came down to 1.9. Very low according to the doctors and we decided to do it every week (40mg, every week). We were doing 40mg every other week.
I'm starting to wonder..., is this increase sufficient?
Looks like he's eating up his Humira and not his food.
My questions:
1. How long does it take for the levels to build up?
2. I'm starting to worry about antibodies too. My worry is mainly because, his remicade levels were close to 0 and he developed antibodies really quick. We didn't act quickly with remicade. We had to let go out Remicade in 9 months.
 
I think the increase will help. You are essentially doubling the dose which should make a difference. Everyone is differnt though. My son was going through Remicade quickly and his dose had to be adjusted as well as he had near zero in his system on two occasions. The increase made the difference. You should be able to see if the increase helps in weeks I would think although it might taker a little longer for it to build up in his system. Hugs.
 
Humira has 4 dosing frequencies
Every other week (14 days)
Every 10 days
Every 7 days
And every 5 days
So if every 7 days is not enough
There really isn’t much room to go up
 
MLP - but there is room as momof8yrold's son is only getting Humira every 14 days and it will be moving up to every 7 days - if I am understanding correctly. This should make a difference.
 
It depends ...
Ds was on humira for over 5 years
My statement was if every 7 days doesn’t help -which is what the kiddo is moving to
Then 5 days probably wouldn’t do much
Ds was on all four frequencies
In his case his response didn’t last the full 14 days
It would wear off so increasing frequencies helped each time .
Humira takes months to be effective
Remicade takes weeks
So it takes longer to see a difference
Some are non responders to anti tnf
 
Thank you all. My son did respond to anti-tnfs well. But, he's metabolizing medicine really quickly.
I was thinking, should we do loading doses of Humira again. Would that help?
He's doing much better than how he felt last year before starting Humira. But, still not completely there. So, I don't want to lose this medicine too soon.
Hopefully, once a week works better and his Humira level builds up really quickly. Keeping fingers crossed.
 
Hi, my son did the reloading of remicade on two occasions before increasing his dosages and it definitely helped. It is always best to try to see if the current medication can continue to work before giving up. I agree!
 
I have heard of people doing loading doses but haven't really seen much research saying it actually works.I am with you though and would try every single strategy before giving up a med.

With Humira it isn't necessarily a matter of it building to therapeutic levels, it is more a matter of finding the dose and frequency that let's your child's body hold on to the drug. Inflammation sops up the drug fast, add in a pubescent boys metabolism and you have a double whammy. Once his body starts healing, it will hold on to the med longer and you might even be able to extend back out to every 10 days or back to every other week. But obviously you have to get him healed first.

Is he still on azathioprine? The addition of the immunomodulator helps slow down the metabolizing of the drug. I know you wanted to stop that eventually. If you stopped it, it might be a good time to add methotrexate.

Have you decided on scopes? I think it would be a good idea at this point. He has been fighting for so long and you really have to get a good idea of what is going on in there. I know the doc was hesitant to do scopes and preferred MRE but wanted to mention that scopes also give you the opportunity to obtain biopsies which will complete the picture. If they biopsy make sure they test for CMV.

One other desperate thought. You mentioned in your early posts that he had c diff a few times. Recurrent c diff could be a bear. C diff will raise cal pro as will many other infections. Has he had stool studies done to look for c diff or any of the other usual suspects? Of course c diff only becomes a suspect if his stool his liquid but I have heard of more than a few people on here getting positive results and being surprised.

You mentioned a while back that your son was drinking one of the EEN formulas. Is he still? I know most support for the formulas is for 100% EEN but there is some research that even as little as 50% of calories from formula along with the anti tnf's can help with healing. If je wouldn't mind that for a while, it might help.

Good luck! Keep us posted!
 
Thank you all for the detailed responses.
Hope once a week does the trick for him. We stopped Imuran in the last week of May.
I do not want to start it again. Doctor was asking us to start Imuran back. Doctor said, he doesn't want to add a new medication MTX during this time. So, for now.., nothing other than Humira and supplements for vitamin D, iron.
We did test for C-diff and it's negative.
Thankfully, his last C-diff was in 2017. It's a nightmare for us.

He is still doing pediasure, not 50% though. I would say about 750 calories/day comes from pediasure. I can ask my son to try doing 50% of the calories from pediasure. Looks like he started puberty, so he's eating really well. He eats around 3000 calories and is putting on weight. Not much increase in inches yet!

crohnsinct said:
ave you decided on scopes? I think it would be a good idea at this point. He has been fighting for so long and you really have to get a good idea of what is going on in there. I know the doc was hesitant to do scopes and preferred MRE but wanted to mention that scopes also give you the opportunity to obtain biopsies which will complete the picture. If they biopsy make sure they test for CMV.
Click to expand...
May I know what is CMV?

We are doing another fecal calprotectin test next week. Because, doctor wants to repeat it.
His blood inflammation markers are not true to his disease activity, so even though it's completely normal, I wouldn't believe it :)

In fact doctor wants to scope him. He is asking for a scope as early as possible. But, my son is not ready for it. According to my son, he is perfectly fine. We keep reminding him, you are better than before and not completely normal. We are convincing our son for a colonoscopy before September though.
 
Ok so had to rewrite post
Forgot he was 13 not 8
Did the Gi discuss openingly with your child on why the scope was critical now ?
Waiting till fall when flaring is not recommended
Can you schedule another appt woth the Gi for your child to talk directly with the Gi on why this has to be done immediately?
Call the Gi office for referral to the medical coping psychologist-most Gi offices have them
Your child is a pre teen and needs to understand that while he may not want a scope
Flaring is not the time to wait if the Gi wants him to have one
Teen years are a tricky balance and 13 by far was the worst for us
14 is alot better
Hugs 🤗
 
If the humira increase doesn't help enough, I would ask again about starting methotrexate. It can really help in cases where a biologic is working some but not quite enough.
 
my little penguin said:
Ok so had to rewrite post
Forgot he was 13 not 8
Did the Gi discuss openingly with your child on why the scope was critical now ?
Waiting till fall when flaring is not recommended
Can you schedule another appt woth the Gi for your child to talk directly with the Gi on why this has to be done immediately?
Call the Gi office for referral to the medical coping psychologist-most Gi offices have them
Your child is a pre teen and needs to understand that while he may not want a scope
Flaring is not the time to wait if the Gi wants him to have one
Teen years are a tricky balance and 13 by far was the worst for us
14 is alot better
Hugs 🤗
Click to expand...

I'm having a hysterectomy in 4 weeks. So, I'm not pushing him too much. My husband can only handle one patient at home. Moreover, doctor wants to wait for 3 months to see how his new dosage of Humira is working on him. He's already on weekly doses from the last couple of weeks. He's okay to have the colonoscopy before his school reopens in September. He is going to High School this year. We are scheduling the colonoscopy in third or last week of August.
 
pdx said:
If the humira increase doesn't help enough, I would ask again about starting methotrexate. It can really help in cases where a biologic is working some but not quite enough.
Click to expand...
Thank you. I'll keep in mind and ask to add MTX, if Humira alone is not working.
 
Hello All,

Happy New Year!

An update about my son. We got his fec cal done last week and it's at 1400. Strange!! He says, he's feeling really good. His last scopes were in early 2019. The doctor said, we will schedule his scopes soon.
His Humira level was very low and hence we switched to weekly 40mg pen. We got another lab order for Humira level check.
The next plans are:
1. Schedule scopes immediately and meantime get Humira levels checked.
2. If Humira levels are low, increase the frequency to every 5 days, 40mg and also add MTX.
3. Doctor is suggesting to add Prednisone too, after scopes.

My son is still in denial mode and he says, there could be a blip in the testing. I have few questions and want your opinions.
1. Does fec cal level vary based on how soon or how late the stool is delivered?
2. Should I ask the doc to order an MRE too? Doctor is not suggesting that.
3. Has anyone taken double dose of Humira, if levels are low? At least until the levels build up?

We do not want to let go off Humira as he started it 15 months ago. He started with 40mg, every 15 days. After 8 months, we started 40mg, every week. My son is 14 now and has started puberty. His weight is good (not lost weight) and his eating is okay too (he is always a picky eater though).
His last ESR/CRP was normal. Waiting for the latest results.

Current medication:
40mg Humira, weekly
50000 IUD, Vitamin D, weekly
Multivitamins, daily

Previous medications:
Aza: 75mg
Remicade
Budesonide
Prednisone
 
So dis was on humira every 5 days for the last year.
Like you we were trying to “stay” on humira .
But he had been on it 4 years prior to starting at every 5 days
In his case even with mtx his arthritis (not crohns ) was not the best .
Fecal can can vary but 1400 is a flare per our Gi above 250 is concerning in a crohns kid

I can say Ds started on Stelara in august 2017 right before he turned 14 .
Waiting for the med to work (8 months ) was torture
Wanted to drop it so bad
But we waited and now crohns fecal cal was under 15 and no signs of active arthritis for the past two years (with mtx )

It’s all about gaining control
What that med is unfortunately up to your child’s body to decide
Everyone is different abd puberty is the hardest time to get things under control per the Gi and rheumatologist
It took forever for ds
Not at 100% but doing well

Hugs 🤗
 
Hey there. Yes fecal cal cal vary based on which sample you take ie: first of day vs third fourth etc. Also, the sample denigrates each day it is at the lab and by day 7 is pretty much useless. So it more matters how many days it was sitting there. But in your son's case, it doesn't much matter, 1,400 is high so even if it sat for a while it was likely higher and thus he has inflammation.

A couple of other things could affect fecal cal. Has he had a stomach or GI bug recently? Any use of Nsaids like for an injury or headaches. In general NSAIDs wouldn't explain a result over 1000 but if he was using them a lot and testing att he same time it is possible, just not probable.

Would your son consider EEN rather than steroids? It could help bring things in line and then help the Humira take over again. Adding methotrexate is not a bad idea as that could also give Humira the boost it needs. I am a little weary at your GI's suggestion of steroids without having all the facts but maybe they are just preparing you for the possibility. Did Budesonide work for him previously? Curious why the GI wouldn't try that first.

Where was your son's disease when dx'd? If he had small bowel disease and the GI is trying to assess things, I would definitely push for an MRE in addition to the scope.

I think looking is a great idea because while your son's symptoms don't align with the cal pro result, he could be having some inflammation and you really don't want to run into an all out flare.

What MLP said....we don't get to pick the meds...the body does. Bob and weave is the name of the game.
 
my little penguin said:
So dis was on humira every 5 days for the last year.
Like you we were trying to “stay” on humira .
But he had been on it 4 years prior to starting at every 5 days
In his case even with mtx his arthritis (not crohns ) was not the best .
Fecal can can vary but 1400 is a flare per our Gi above 250 is concerning in a crohns kid

I can say Ds started on Stelara in august 2017 right before he turned 14 .
Waiting for the med to work (8 months ) was torture
Wanted to drop it so bad
But we waited and now crohns fecal cal was under 15 and no signs of active arthritis for the past two years (with mtx )

It’s all about gaining control
What that med is unfortunately up to your child’s body to decide
Everyone is different abd puberty is the hardest time to get things under control per the Gi and rheumatologist
It took forever for ds
Not at 100% but doing well

Hugs 🤗
Click to expand...
I am trying to rule out all possibilities of this drug before moving on to another one. I completely agree on puberty part. Thank you very much for your inputs.
 
crohnsinct said:
Hey there. Yes fecal cal cal vary based on which sample you take ie: first of day vs third fourth etc. Also, the sample denigrates each day it is at the lab and by day 7 is pretty much useless. So it more matters how many days it was sitting there. But in your son's case, it doesn't much matter, 1,400 is high so even if it sat for a while it was likely higher and thus he has inflammation.

A couple of other things could affect fecal cal. Has he had a stomach or GI bug recently? Any use of Nsaids like for an injury or headaches. In general NSAIDs wouldn't explain a result over 1000 but if he was using them a lot and testing att he same time it is possible, just not probable.

Would your son consider EEN rather than steroids? It could help bring things in line and then help the Humira take over again. Adding methotrexate is not a bad idea as that could also give Humira the boost it needs. I am a little weary at your GI's suggestion of steroids without having all the facts but maybe they are just preparing you for the possibility. Did Budesonide work for him previously? Curious why the GI wouldn't try that first.

Where was your son's disease when dx'd? If he had small bowel disease and the GI is trying to assess things, I would definitely push for an MRE in addition to the scope.

I think looking is a great idea because while your son's symptoms don't align with the cal pro result, he could be having some inflammation and you really don't want to run into an all out flare.

What MLP said....we don't get to pick the meds...the body does. Bob and weave is the name of the game.
Click to expand...

He never takes NSAIDs, so that option is ruled out. This has to be flaring up.
My son took budesonide twice. One time, it worked wonders. Second time, it did nothing!! Even the doctor is not pushing for steroids. He said, based on the results from the scope, we might take a call. Cannot think of any GI bug recently too.

Thanks so much for taking time to give your opinions.
 
We asked about 80 mg weekly and were told that they don't prescribe it. However, I have seen adult patients on it, but never a child. Our ped. rheumatologist allowed us to give the Humira every 6 days - not more often. This was years ago and clearly things have changed. You can certainly ask.

But if Humira every 5 days isn't enough then i think a different biologic is probably a better idea.
 
From what I understand, your son is currently on 40 mg every week Humira and the doctor is thinking of 40 mg every 5 days and adding MTX. It's great there's a plan and perhaps these two changes will make all the difference.
 
Hello all,

Update:
His colonoscopy & endoscopy was done this morning. From the external view, the colon looked pink & healthy. Same was the case with stomach & duodenum. Doctor asked us to wait for biopsy results & might plan for MRE too. His previous scope (in 2019) showed redness in stomach(inflammation), duodenum & some parts of colon.
Healthy looking colon & fec cal 1400?! Looks like inflammation in small intestine. I got to have a peek at his stool & it was dark. So, that makes me feel there could be inflammation in the small intestine.

His TI had no inflammation before & it looked healthy even today.

Our labs have messed up with Humira level check.., bummer. They skipped that test alone or did not submit the results for that test. This is the second time they are messing it up. We cannot decide on the medication change until Humira levels are back.

He looks okay from outside but no idea where the inflammation is hiding :(
 
Last edited:
Some insurance does not cover level checks
So that might be why it wasn’t submitted
Definitely worth the ask
Are they doing a pill cam as well as MRE to see the small intestine?
Our Gi likes to have the full picture from top to bottom so to speak when making med changes

Crohns changes spots and types as kids age (first 10 years after dx )
This something unique to kids
Glad the scopes looked visually good
Hope the biopsy results are in soon
 
my little penguin said:
Some insurance does not cover level checks
So that might be why it wasn’t submitted
Definitely worth the ask
Are they doing a pill cam as well as MRE to see the small intestine?
Our Gi likes to have the full picture from top to bottom so to speak when making med changes

Crohns changes spots and types as kids age (first 10 years after dx )
This something unique to kids
Glad the scopes looked visually good
Hope the biopsy results are in soon
Click to expand...

Thank you for mentioning about insurance. Will check on it. His disease activity didn’t involve small intestine before. We did MRE just after diagnosis to check if small intestine is involved.
Any advantage of doing pill cam? I thought MRE was enough to check for inflammation in small intestine. Our doctor never mentioned about pill cam.
On a side note, my husband went with my son for scopes. And doctor was like.., I’ll talk to your wife about medications and procedures over phone. My husband was joking with me today. Doctor was like.., bro you don’t know anything 😂😅
 
Kids disease changes and can progress during the first 10 years after dx so if the terminal ileum wasn’t involved before it can be now or other parts since crohns is patchy not continuous .
MRE can show thickening or strictures from inflammation but the pill cam (capsule endoscopy) is done to get a visual (redness ,ulcers , etc..) to match up with the mre .
Otherwise the thickening may not be inflamed etc...
The two pieces together give a better picture
Ds has had the pill cam done twice
Both times it was placed in the duodenum during the scope and when he woke up the video pack was strapped to his waist .
The pill cam can bob and in the stomach for a while .
Ds has delayed gastric emptying so in his case if he just swallowed it (most common method) we may only get a video of his stomach since the video is only for 6 hours in length .
 
Biopsy results are back. His duodenum, TI is free of inflammation. Stomach is fine too. In colon, they see very little focal activity (does that mean.., he has inflammation there?)
Doctor is surprised by his fec cal number (1400). Doctor wants to perform an MRE before adding MTX. And, doctor is not agreeing on increasing the frequency of Humira to 5 days. According to him, 40mg every week is the max dose in their practice.
Now waiting to get a call from MRE dept to book an appointment.

I forgot to ask about pill cam 😢

Does biopsy of duodenum give any indication for inflammation of entire small intestine? Thought of asking the doctor, but totally forgot.
 
Last edited:
That's great! How many high cal pro tests didhe have? was it just one? If so, it could be lab error or maybe he had a passing bug.

No the biopsy result is justofthatone area but since the GI saw a healthy looking duodenum the biopsy confirms it. But yeah, there could be inflammation anywhere along the small bowel where the scope can't reach.
 
Hello All,

An update about my son. He had his MRE last week and we met with his doctor yesterday. His MRE isn't showing any signs of inflammation in the small intestine. Nothing unusual. He has a very little narrowing in this sigmoid colon. That is the area that affected him all throughout his Crohn's diagnosis. Doctor said, it's nothing major. Everything looks good for now. His colon is pink and healthy. No inflammation seen on the scopes. Only microscopic inflammation in Colon.
His duodenum is fine, his stomach is fine.

Doctor did not suggest any more tests. He does not want to do pill cam. His Humira level is 5.1. All look good,

Looks like we panicked for no reason. This boy has always reported high cal pro. Wonder why?!
Doctor suggested repeat cal pro test. We might do it this week.

Now that I read all your suggestions again, should I ask the doctor to check for C-diff or am I overthinking?

My son has gained so much weight and a little height too. He's still cribbing on the height though. His shoes size increased from size 7 to size 10.5 in 12 months.

He is 14.5 years old and weighs 138lbs with 5.4 height.
I am so so so happy. I really hope and wish this remission stays with us for decades...

He got diagnosed with nummular eczema last fall. He has a lot of skin inflammation. All thanks to Crohn's. Even though Crohn's seem to be in remission, his skin is flaring.
 
Why no pill cam ?
Insurance coverage ?
Ours does not cover it stand alone
But does cover it if placed during a scope
No idea why

High fecal cal doesn’t just happen
There is inflammation from something maybe not crohns but something
So
Can you get a second opinion ?
Even just a record review ??
 
my little penguin said:
Why no pill cam ?
Insurance coverage ?
Ours does not cover it stand alone
But does cover it if placed during a scope
No idea why

High fecal cal doesn’t just happen
There is inflammation from something maybe not crohns but something
So
Can you get a second opinion ?
Even just a record review ??
Click to expand...
No pill cam because doctor did not see any problem with MRE. He said, everything looks good. And to top it, my son said.., i'm perfectly fine. I do not have any issues. So, there was no reason from myside to push for more tests. Doctor wants to perform a repeat cal pro. I can ask for c-diff or other bacterial infection test during that time.

What could be the other reasons why there could be inflammation in intestines? And I thought MRE indicates inflammation in small intestines. He isn't celiac.
 
Hi All,

I'm back with not so good news :(
My son fec cal is 1800 and everything else is normal. I'm pushing for pill cam & doctor is not up for it(he resists for every thing.!!). I really really want to change the doctor. He's no good at all.

I asked the doc, can he take covid vaccine, the doc is like.., have they approved it for kids this age? :(
Doctor is saying, he treats the patient & not the numbers. how can he neglect fec cal so high ?
Doctor is like.., I don't want to over treat the patient, your son doing good.
I agree that, he's eating okay, gaining weight & showing no visible symptoms.., but that doesn't mean.., things are right inside.

Can my son move to adult GI once he turns 16? He will be16 next September, I will move him to somebody else immediately.
I'm done with this doctor.

Doctors comments:
"You know some adults manage this disease without any treatment & with only diet. Darn.., I know..,I have come to you for treatment "
"Your son looks good.., hello.., this is an invisible disease".

Current plan:
Do fec cal, Cdiff test next week.
If results are still high, take actions.

If doctor doesn't add MTX or doesn't agree for pill cam, we are changing the doctor. But.., we don't have many options for pediatric GI in Metro Detroit Area :(

I'm so so frustrated...
 
Insanity! I mean I get he looks good outwardly and there are no other alarm signals and if I were a doc I would be loathe to add meds based on one isolated lab BUT like you said, this is an invisible disease. The high cal pro doesn't necessarily mean he is flaring but a flare could be imminent. The high cal pro at the very least means go in and look to see if everything is still o.k. and if so, monitor CLOSELY.

Detroit doesn't have another pediatric GI you could switch to? That sounds crazy. A major city and no other pediatric GI? Ugh! Sounds like where my daughter goes to school in rural Alabama. Not even an adult GI in sight.

Some adult GI's will start seeing patients as young as 16. t just depends on the practice. Good Luck. I agree you need another physician.
 
Motts or U of mich ?
There was another one south a bit ...

You might need to drive
Since it’s only every 3-6 months
I would drive
Some drive up to three hours to see pediatric specialists here

I would try to stay pediatric until he is out of college
Since pediatric Gi tend to treat more aggressively and work with the whole family /transition
 
I would also consider driving to a pediatric GI. Pediatric GIs are best equipped to deal with kids and there are some issues with IBD that are unique to kids - like effects on growth. Boys can grow into their early 20s, so switching at 16 may cause growth issues to be overlooked. Plus, most adult doctors tend to see patients that are 18 and up - we've even met some adult docs that only see 21 and up!

We switched my daughter to an adult rheumatologist before she turned 16, since her older sister was switching and their pediatric rheumatologist was moving. This rheumatologist was highly recommended and normally treated patients 17-18 years old and over, but made an exception for her. It was the biggest mistake we ever made. Because she was so petite, he was hesitant to treat her based on the adult guidelines, so he under-treated her and put her on a really low dose of Remicade - lower than the FDA approved dose. Her arthritis spread to many more joints and also became really treatment resistant and she also developed permanent joint damage. We learned later that pediatric rheumatologists treat more aggressively and tend to see patients into their 20s - usually at least till 21. We should have just switched to another pediatric rheumatologist, but we didn't know there was such a big difference between the way pediatric and adult specialists treat patients. And my poor daughter paid the price...

It definitely sounds like you need another doctor. One isolated really high FCP may mean wait and watch and monitor very closely. But two? To me that suggests there is inflammation somewhere in his gut. Is he having watery diarrhea? Because labs won't even test solid stool for C.Diff - it has to be diarrhea.

Is your son still growing? I know you had mentioned he was 5'4 in a previous post. Has he grown at all since then?
 
Maya142 said:
I would also consider driving to a pediatric GI. Pediatric GIs are best equipped to deal with kids and there are some issues with IBD that are unique to kids - like effects on growth. Boys can grow into their early 20s, so switching at 16 may cause growth issues to be overlooked. Plus, most adult doctors tend to see patients that are 18 and up - we've even met some adult docs that only see 21 and up!

We switched my daughter to an adult rheumatologist before she turned 16, since her older sister was switching and their pediatric rheumatologist was moving. This rheumatologist was highly recommended and normally treated patients 17-18 years old and over, but made an exception for her. It was the biggest mistake we ever made. Because she was so petite, he was hesitant to treat her based on the adult guidelines, so he under-treated her and put her on a really low dose of Remicade - lower than the FDA approved dose. Her arthritis spread to many more joints and also became really treatment resistant and she also developed permanent joint damage. We learned later that pediatric rheumatologists treat more aggressively and tend to see patients into their 20s - usually at least till 21. We should have just switched to another pediatric rheumatologist, but we didn't know there was such a big difference between the way pediatric and adult specialists treat patients. And my poor daughter paid the price...

It definitely sounds like you need another doctor. One isolated really high FCP may mean wait and watch and monitor very closely. But two? To me that suggests there is inflammation somewhere in his gut. Is he having watery diarrhea? Because labs won't even test solid stool for C.Diff - it has to be diarrhea.

Is your son still growing? I know you had mentioned he was 5'4 in a previous post. Has he grown at all since then?
Click to expand...
He has grown 0.5 inches since last update.
 
Thank you everyone for your inputs & suggestions.
We did repeat fec-cal & it came back 2000.

We are in the process of first moving to UofM (CS Motts Ann Arbor). We have good opinion from that hospital. It will take at least couple of months, if not more for the move to happen (insurance, referral, transfer of documents etc etc). We have started the process though.

His doctor called back today, and he said.., he spoke to his other colleagues. He now wants to add either MTX or Budesonide. I was busy & husband took the call. Husband said, wife will decide & give a callback tomorrow.

Could you please help me clarify my doubts.
1. What is the MTX dose recommended? I'm sure, his doctor would start with the smallest possible. So I want to make sure my son gets enough.
2. Should we ask him to add Budesonide too until his numbers come down or is MTX alone good enough?

My son is yet to take his Covid vaccine. So, I would want him to complete his vaccine before starting on MTX.
 
That's great! .5" in three weeks? How did the fecal al test go? Do you have those results back yet?
 
oops! We cross posted. Yeah 2000 is not great. I am glad you are getting the second opinion.

Mtx can take up to 12 weeks to work. Budesonide kicks in rather quickly but it is technically not a long term med. Mtx will help the Humira last longer so there is that. Also if he is feeling well then the 12. week wait might not hurt and it will start working a little at least each week.

It is just so confusing that he feels fine, scope didn't show anything terrible, MRE was basically good. I wonder where this disease is hiding or if it is not Crohn's at all and maybe something else?
 
Normally you would add both
Short term steriods while waiting for mtx to kick in
Any capsule endoscopy (pill cam )?
Glad your getting second opinion

mtx dosage depends on weight age type
Some do pills others do shots

so it’s difficult to compare
 
At 14.5 growing 0.5 “ in three months is really not in the normal range
Most experience a growth spurt rapidly for boys in that age 4-6 inches over 6 -12 months sometimes more
And then slow to 0.5
Much different than girl growth
Two older boys here (17/19)
 
Has he seen an endocrinologist to see if his bone age is delayed? It doesn't sound like he is growing normally. That said, his height will obviously depend on your height and your husband's.
MTX does take 6 weeks to work at least. As for dose, as has been said above, it depends. Usually if they're using MTX just to prevent antibodies, it's a low dose like 7.5 to 10 mg. If it's to control the disease, it's usually between 15 mg and 25 mg. My younger daughter is on 15 mg (but by injection) and my older daughter is on 10 mg (also by injection). They both did better with the MTX shot vs. the pills. The shot is generally given to patients with IBD since it's possible pills won't be absorbed properly due to inflammation. But some kids do well with pills - it's really very individual.
Really glad you are getting a second opinion!!
 
crohnsinct said:
oops! We cross posted. Yeah 2000 is not great. I am glad you are getting the second opinion.

Mtx can take up to 12 weeks to work. Budesonide kicks in rather quickly but it is technically not a long term med. Mtx will help the Humira last longer so there is that. Also if he is feeling well then the 12. week wait might not hurt and it will start working a little at least each week.

It is just so confusing that he feels fine, scope didn't show anything terrible, MRE was basically good. I wonder where this disease is hiding or if it is not Crohn's at all and maybe something else?
Click to expand...
it makes me wonder too about where is he having problems? We got second opinion once in 2015 (after his diagnosis) at University of Michigan. They confirmed his Crohn's diagnosis.
What else could it be if not Crohn's? His Cdiff and bacterial culture came back negative. His blood work comes out fine.
 
Maya142 said:
Has he seen an endocrinologist to see if his bone age is delayed? It doesn't sound like he is growing normally. That said, his height will obviously depend on your height and your husband's.
MTX does take 6 weeks to work at least. As for dose, as has been said above, it depends. Usually if they're using MTX just to prevent antibodies, it's a low dose like 7.5 to 10 mg. If it's to control the disease, it's usually between 15 mg and 25 mg. My younger daughter is on 15 mg (but by injection) and my older daughter is on 10 mg (also by injection). They both did better with the MTX shot vs. the pills. The shot is generally given to patients with IBD since it's possible pills won't be absorbed properly due to inflammation. But some kids do well with pills - it's really very individual.
Really glad you are getting a second opinion!!
Click to expand...
He saw an endocrinologist long time back. Will check with his primary care doctor during his annual visit in July. Thank you for your inputs
 
my little penguin said:
Normally you would add both
Short term steriods while waiting for mtx to kick in
Any capsule endoscopy (pill cam )?
Glad your getting second opinion

mtx dosage depends on weight age type
Some do pills others do shots

so it’s difficult to compare
Click to expand...
Doctor did not mention about pill cam yet!!
 

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