Hello, this is my first post on this forum. Glad this resource is out there! My 13 y old has been Dx w terminal ileum crohn. Just ended EEN. Was in remission at week 5, re-intoduced rice at week 9 (90% calories PEN - 10% rice), and then at week 12 added methotrexate oral and increase of 10% calories/week from food, while diminishing formula. WE did calprotecting when was on 90% formula and 10% rice and came up high again. Doctor mentioned thinkink about corticosteroids. We will discuss this week. I am so hoping for an alternative. My son has never had symptoms other than decrease height velocity (went from being one of tallest in class to one of shortest) and diffficulty gaining weight (and some redness in eyes) and some loose stools though no frequency. He is a star athlete (though performance down during last year) and wants to grow and gain weight. That's what "adressing symptoms" meas to him. He did grow 1 1/2 inch during EEN and gained close to 10 lbs. Now at a healthu BMI. Everyone I know who has a child on remicade is doing great. Research is pretty clear about negative effects of corticosteroids on height/growth. Does anyone know of any meds to treat terminal ileum (to induce remission and maintain) that do not involve steroids? Thank you!!!
Avoiding corticosteroids and terminal ileum
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Hi and welcome (but sorry you have to be here)!
So right now, your son is only on MTX correct? He is not on Remicade?
Typically, doctors will use either EEN or steroids to induce remission and start a maintenance medication at the same time. In your case, since EEN hasn't helped enough, I think steroids make sense.
The only other medication I can think of is Remicade. It is the biologic that works the fastest. Some kids feel better after the first infusion while for others, it can take months. However, even if you were to start Remicade, there is no guarantee your kiddo wouldn't need steroids in addition to the Remicade. But, if your doctor agrees he needs Remicade, it's worth trying. Some kids do respond very quickly and you MAY be able to avoid steroids.
I understand not wanting to put him on steroids because of the side effects - they do impact growth. But have you considered Entocort (Budesonide)? Entocort is a "topical steroid" - only 20% or so is systemically absorbed, so kids often don't have side effects at all. As long as he was on it for a short period of time, it probably would not impact his growth.
My daughter has been on Entocort many times and she has no side effects with it at all. With Prednisone, she has MANY side effects - puffy face, moodiness, increased appetite (which we like!) etc. But it does work like magic for her.
However, Entocort is a weaker steroid and Prednisone would definitely work faster and is more effective. But Entocort is safer - for adults, it is even sometimes used as a maintenance medication.
I'm going to tag some other parents - there are many who have experience with growth failure and Remicade and steroids.
my little penguin, Clash, pdx, Mehita, crohnsinct, Jmrogers4
Good luck!
So right now, your son is only on MTX correct? He is not on Remicade?
Typically, doctors will use either EEN or steroids to induce remission and start a maintenance medication at the same time. In your case, since EEN hasn't helped enough, I think steroids make sense.
The only other medication I can think of is Remicade. It is the biologic that works the fastest. Some kids feel better after the first infusion while for others, it can take months. However, even if you were to start Remicade, there is no guarantee your kiddo wouldn't need steroids in addition to the Remicade. But, if your doctor agrees he needs Remicade, it's worth trying. Some kids do respond very quickly and you MAY be able to avoid steroids.
I understand not wanting to put him on steroids because of the side effects - they do impact growth. But have you considered Entocort (Budesonide)? Entocort is a "topical steroid" - only 20% or so is systemically absorbed, so kids often don't have side effects at all. As long as he was on it for a short period of time, it probably would not impact his growth.
My daughter has been on Entocort many times and she has no side effects with it at all. With Prednisone, she has MANY side effects - puffy face, moodiness, increased appetite (which we like!) etc. But it does work like magic for her.
However, Entocort is a weaker steroid and Prednisone would definitely work faster and is more effective. But Entocort is safer - for adults, it is even sometimes used as a maintenance medication.
I'm going to tag some other parents - there are many who have experience with growth failure and Remicade and steroids.
my little penguin, Clash, pdx, Mehita, crohnsinct, Jmrogers4
Good luck!
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^^^yeah that ^^^
Maintenance meds such as remicade or methotrexate need a heavy hitter to induce remission until the med can build up and take over
Can you switch to mtx injections since most kids who use mtx as a monotherapy need injections to absorb enough of the mtx?
Mtx can take up to 12 weeks to work though
Most need een and/or steroids
Ds needed both
We tried een and the minute we added food he was back to flaring
Despite starting 6-mp at dx .
He then tried mtx plus steroids but every time we weaned steroids
Vasculitis
So he ended up on remicade with steroids till the remicade could take over at 6 weeks.
The good news most kids have catch up growth once they get off steroids and have the right meds
I get wanting to grow
My kiddo is now 13
But inflammation that is not under control inhibits growth as well
We were told that most ibd kids grow well into their 20 as long as the get into remission
The body catches up
Ds has had 3-4 rounds of months of steroids since dx
We do try to avoid and have done een 3-4 times as well and continued supplemental en the entire time to maintain weight and growth
Never an easy decision
Also be aware most insurances require that a child fail the lower l(cheaper) drugs first
Prior to approving biologics
Maintenance meds such as remicade or methotrexate need a heavy hitter to induce remission until the med can build up and take over
Can you switch to mtx injections since most kids who use mtx as a monotherapy need injections to absorb enough of the mtx?
Mtx can take up to 12 weeks to work though
Most need een and/or steroids
Ds needed both
We tried een and the minute we added food he was back to flaring
Despite starting 6-mp at dx .
He then tried mtx plus steroids but every time we weaned steroids
Vasculitis
So he ended up on remicade with steroids till the remicade could take over at 6 weeks.
The good news most kids have catch up growth once they get off steroids and have the right meds
I get wanting to grow
My kiddo is now 13
But inflammation that is not under control inhibits growth as well
We were told that most ibd kids grow well into their 20 as long as the get into remission
The body catches up
Ds has had 3-4 rounds of months of steroids since dx
We do try to avoid and have done een 3-4 times as well and continued supplemental en the entire time to maintain weight and growth
Never an easy decision
Also be aware most insurances require that a child fail the lower l(cheaper) drugs first
Prior to approving biologics
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I wanted to add - keeping him on supplemental EN will help with weight gain and growth. My daughter was completely unable to gain weight, much less maintain her weight without supplemental EN. At first she chose to drink formula but wasn't able to drink enough. Eventually we moved to an NG tube which she inserted every night and removed in the morning.
With the tube and overnight EN, she has been able to gain weight (25 lbs!), maintain the weight she gained and feels so much better. She has a LOT more energy.
It sounds like your GI is pro-EEN, which is great, but I figured I'd mention it just in case there is any plan of stopping the formula soon. There is research that shows even supplemental EN helps - both prevent relapses and with weight gain and growth.
With the tube and overnight EN, she has been able to gain weight (25 lbs!), maintain the weight she gained and feels so much better. She has a LOT more energy.
It sounds like your GI is pro-EEN, which is great, but I figured I'd mention it just in case there is any plan of stopping the formula soon. There is research that shows even supplemental EN helps - both prevent relapses and with weight gain and growth.
Wow! Thank you to all that replied! This is so helpful information wise and not feeling as isolated in my chaotic search for solutions. Yes just on methotrexate, oral dose and back on EEN. Will discuss w MD if should do injections instead, thanks for pointing this out. I did mention remicade to our MD a while back but did not seem to think it was appropriate. She mentioned a few times that there are not many drugs to treat terminal ileum. If remicade appropriate, too bad insurance would first require a trial of steroids. Prior to trying EEN, MD had suggested Pentasa and budenoside, I brought up EEN and we chose to go that route given a main goal of care is to optimize growth for us and were hoping for mucosa healing w EEN. I am guessing she will suggest budenoside. Any research showing it not negatively impacting growth? Anyone knowing of GI MDs in SF Bay area who are more opened to prescribing Remicade early on in disease trajectory? And yes, we love what EEN and PEN has done to help our son grow and intend to continue PEN - especially given all the athletics, helps us feel he's getting what he needs. Thank you everyone!!!
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I agree with Maya and MLP's thoughts. I think the thing to focus on right now is getting his disease fully under control since puberty is knocking on his door. The fastest way to do that is going to be steroids and a good maintenance med.
Did his GI mention Remi or is it just something you've learned about on your own?
Another thing to consider is that some health insurance plans require you to do a step up process where you try the weakest drug first, likely fail it, and work your way up. Something to check in to.
After starting Remicade, puberty kicked in full force for my son and he grew a ton. In the range of 20 pounds and 4 inches within months - a.k.a. catch up growth. It's pretty incredible.
Did his GI mention Remi or is it just something you've learned about on your own?
Another thing to consider is that some health insurance plans require you to do a step up process where you try the weakest drug first, likely fail it, and work your way up. Something to check in to.
After starting Remicade, puberty kicked in full force for my son and he grew a ton. In the range of 20 pounds and 4 inches within months - a.k.a. catch up growth. It's pretty incredible.
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Not sure
Look at us news world report 2016 rankings of children's hospitals
It should rank the GI dept
Most of the top kiddie ibd hospitals
Chop (children's of Philadelphia)
Boston children's
Cincinnati children's (cchmc)
Are the top three
But I am sure some from SF should be in that list
Using remicade first is considered top down therapy
A lot of GI are doing that now
But it still would not negate the need for steroids
If you just started mtx it will take every bit of 8-12 weeks to work
And in the mean time you will need a back up
Of steroids or EEn
Look at us news world report 2016 rankings of children's hospitals
It should rank the GI dept
Most of the top kiddie ibd hospitals
Chop (children's of Philadelphia)
Boston children's
Cincinnati children's (cchmc)
Are the top three
But I am sure some from SF should be in that list
Using remicade first is considered top down therapy
A lot of GI are doing that now
But it still would not negate the need for steroids
If you just started mtx it will take every bit of 8-12 weeks to work
And in the mean time you will need a back up
Of steroids or EEn
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They might allow Remicade because he has growth failure...but not sure. Some insurance companies do require trying MTX or something like it first.
We were able to go straight to Remicade (with MTX) and more and more doctors are now using the "top down" method, especially with kids who need to grow.
A second opinion is actually a good idea. What about the UCSF Children's Hospital? I would choose someone who works in the IBD center.
Good luck!
We were able to go straight to Remicade (with MTX) and more and more doctors are now using the "top down" method, especially with kids who need to grow.
A second opinion is actually a good idea. What about the UCSF Children's Hospital? I would choose someone who works in the IBD center.
Good luck!
Thank you! Learned about Remicade working well in supporting teen growth (and catch up growth) both from literature and 3 teens we know of who are doing great on it. We're getting second opinion at Stanford soon. Will also look into UCSF indeed, thanks for pointing this out. Good to know time delay to efficacy of Methotrexate. Good to no budenoside less toxic system wise. We will do what needs to be gone for his health but want to make sure we are making best informed decision. Thanks for all the info and support. Have more to bring to the table when discussing next step w our team.
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Hi there. My daughter's disease was mostly in the terminal ileum at diagnosis, and our doctor started her right off with Remicade. She ended up also needing the boost of EEN, budesonide, and methotrexate before she started getting better, but after about 6 months, she was doing very well on just the combo of Remicade and methotrexate. She's grown a ton in the past two years--she's gained almost 50 pounds and grown 5 inches. Like others have already mentioned above, budesonide isn't always as effective as prednisone, but it has many fewer side effects, and the terminal ileum is one of the places where it actually can work, so I would try that first before prednisone.
Good luck--I hope you find an effective treatment soon.
Good luck--I hope you find an effective treatment soon.
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Also want to add a voice in encouraging you to have your son continue on partial EN, regardless of treatment.
My son is older but, when diagnosed, he did 6 weeks exclusive EN (3000 calories/day) and then, for two more years, he continued at almost half dose (1500 cal/day but only five days per week). He was 17-19 years old at the time. While he was already fairly tall (5'10") at dx, over those two years, he still gained 1+ inches and approx. 50 lbs. (of "healthy" weight - muscular, developmental, etc.). He's now 22 and still drinks one or two Boost shakes most days. It's become 'habit' and a convenience for him. He's away at school and the shake replaces a 'junk food' type breakfast and he says it's easier than grabbing anything else! He sometimes will have a second shake as a 'snack' when studying, etc. And, as he's still a picky eater, it gives me peace of mind that he's getting some good nutrition everyday. A vitamin would also give him the 'nutrition' but the extra bonus from the shake is that it replaces some of the junk food.
My son is older but, when diagnosed, he did 6 weeks exclusive EN (3000 calories/day) and then, for two more years, he continued at almost half dose (1500 cal/day but only five days per week). He was 17-19 years old at the time. While he was already fairly tall (5'10") at dx, over those two years, he still gained 1+ inches and approx. 50 lbs. (of "healthy" weight - muscular, developmental, etc.). He's now 22 and still drinks one or two Boost shakes most days. It's become 'habit' and a convenience for him. He's away at school and the shake replaces a 'junk food' type breakfast and he says it's easier than grabbing anything else! He sometimes will have a second shake as a 'snack' when studying, etc. And, as he's still a picky eater, it gives me peace of mind that he's getting some good nutrition everyday. A vitamin would also give him the 'nutrition' but the extra bonus from the shake is that it replaces some of the junk food.
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Just adding my two cents as well you have already been given some fantastic advice.
We done EEN and PEN, while on PEN my son did gain weight and grown about an inch he was 13 at the time and went from 4'11" to 5' as soon as we stopped the PEN the weight fell off and about a year and a half later he was put on remicade which was an amazing time of catch up growth for him over a years time he grew 9" while he is still pretty skinny he has gone from 1% to 40% in weight. At the start of remicade he was 5'1" tall and 89 pounds with virtually no signs of puberty and was the first time since he was 4 that he did not get to play baseball (did not make the high school team, just too small). It was a rough year probably even more psychologically than disease wise he was regularly mistaken for a child and handed a kids menu at restaurants even though he was 14 1/2 while his 12 year old brother is handed a regular menu.
For what it's worth methotrexate is the only other thing that brought about remission and growth in him the prior 4 years of non growth before starting remicade unfortunately do to a reaction with his lungs he was unable to stay on it
We done EEN and PEN, while on PEN my son did gain weight and grown about an inch he was 13 at the time and went from 4'11" to 5' as soon as we stopped the PEN the weight fell off and about a year and a half later he was put on remicade which was an amazing time of catch up growth for him over a years time he grew 9" while he is still pretty skinny he has gone from 1% to 40% in weight. At the start of remicade he was 5'1" tall and 89 pounds with virtually no signs of puberty and was the first time since he was 4 that he did not get to play baseball (did not make the high school team, just too small). It was a rough year probably even more psychologically than disease wise he was regularly mistaken for a child and handed a kids menu at restaurants even though he was 14 1/2 while his 12 year old brother is handed a regular menu.
For what it's worth methotrexate is the only other thing that brought about remission and growth in him the prior 4 years of non growth before starting remicade unfortunately do to a reaction with his lungs he was unable to stay on it
