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It depends .
My kiddo was diagnosed at age 7 and now is 18
We were told due to steriods /prednisone that he would continue to grow well past 18 probably closer to age 20 when he stops growing
a hand X-ray can tell the docs if your growth plates have closed
Once closed the body typically does not grow anymore
once off prednisone and on biologics/(in remission) my kiddo grew like crazy
He gained weight first
Then hands /feet grew
Then increase in height
remember short bones grow before long bones (legs/arms )
if you don’t see growth after your bloodwork looks normal again
Ask to see an endocrinologist
They can determine if you have delayed growth
and how much time you have to grow left
my kiddo is 5’11” almost now
So even with lots of steriods over the years
He managed to grow once he was off them /doing well
good luck
My kiddo was diagnosed at age 7 and now is 18
We were told due to steriods /prednisone that he would continue to grow well past 18 probably closer to age 20 when he stops growing
a hand X-ray can tell the docs if your growth plates have closed
Once closed the body typically does not grow anymore
once off prednisone and on biologics/(in remission) my kiddo grew like crazy
He gained weight first
Then hands /feet grew
Then increase in height
remember short bones grow before long bones (legs/arms )
if you don’t see growth after your bloodwork looks normal again
Ask to see an endocrinologist
They can determine if you have delayed growth
and how much time you have to grow left
my kiddo is 5’11” almost now
So even with lots of steriods over the years
He managed to grow once he was off them /doing well
good luck
Thanks so much it gives me hope. It's just amazing how I've still managed to reach 5'9 and my growth plates are still open with crohn's so I could only imagine the growth potential. Is is prednisone the first line of treatment with crohns? or do you think I could ask my gastroenterologist for biologics first.It depends .
My kiddo was diagnosed at age 7 and now is 18
We were told due to steriods /prednisone that he would continue to grow well past 18 probably closer to age 20 when he stops growing
a hand X-ray can tell the docs if your growth plates have closed
Once closed the body typically does not grow anymore
once off prednisone and on biologics/(in remission) my kiddo grew like crazy
He gained weight first
Then hands /feet grew
Then increase in height
remember short bones grow before long bones (legs/arms )
if you don’t see growth after your bloodwork looks normal again
Ask to see an endocrinologist
They can determine if you have delayed growth
and how much time you have to grow left
my kiddo is 5’11” almost now
So even with lots of steriods over the years
He managed to grow once he was off them /doing well
good luck
So what typically happens
You need something to get the inflammation under control quickly
Then a maintenance med to keep the inflammation from coming back
Prednisone or exclusive enteral nutrition (een) are used in kids to stop inflammation quickly
While the steriods or een is working on the inflammation a maintenance med such as an immunosuppressants (methotrexate) or a biologic (remicade or humira ) is started at the same time
So when your ready to stop steriods or een (6-8 weeks no solid food just formula such as peptamen or boost ) the other med methotrexate or humira or remicade is ready
methotrexate takes 3 months to be fully effective
Humira takes 3 months to be effective
Remicade takes 6 weeks to be effective
steriods are typically given for 4-6 weeks plus weaning off
Een means no solid food for 6-8 weeks -my kiddo did this twice -hated it both times
Much harder as a teen than when he was 7
But no side effects
definitely talk to your Gi about options
You need something to get the inflammation under control quickly
Then a maintenance med to keep the inflammation from coming back
Prednisone or exclusive enteral nutrition (een) are used in kids to stop inflammation quickly
While the steriods or een is working on the inflammation a maintenance med such as an immunosuppressants (methotrexate) or a biologic (remicade or humira ) is started at the same time
So when your ready to stop steriods or een (6-8 weeks no solid food just formula such as peptamen or boost ) the other med methotrexate or humira or remicade is ready
methotrexate takes 3 months to be fully effective
Humira takes 3 months to be effective
Remicade takes 6 weeks to be effective
steriods are typically given for 4-6 weeks plus weaning off
Een means no solid food for 6-8 weeks -my kiddo did this twice -hated it both times
Much harder as a teen than when he was 7
But no side effects
definitely talk to your Gi about options
It depends on many factors, including how old you are, if you're male or female (since girls tend to stop growing earlier than boys), the state of your Crohn's (i.e if there is inflammation, where it is, how bad it is), how many calories you're getting and if they're getting absorbed, and of course, whether your growth plates are still open. Both girls and boys can continue to grow later than normal with Crohn's, IF their growth plates are open. Your chances of growing are much higher if you're in remission and are getting and absorbing enough calories to grow. Some teens are put on supplemental formula (enteral nutrition, as mentioned above, but in addition to food) to help with growth and weight gain. It can also be used to induce remission, but that requires no or very little food and just formula, for a period of 6-8 weeks (that's called EEN). That can be used in place of steroids which of course, do impact growth and bone density.
It can be hard on kids and teens and some GIs allow 10-20% of your calories to be food and 80-90% to be from formula, just to make it easier to do (and it does generally work as well or nearly as well as 100% formula). Some kids are able to do it more easily (especially they're younger) and others really struggle with it. My daughter really struggled with it as a teen and so we used steroids instead.
I will also add that some kids manage to grow even with active disease - it just depends. But ideally, the goal is remission to keep your small bowel and colon from becoming damaged, in addition to letting you grow and gain weight.
Formula can really help with that because when your gut is inflamed, it is hard to absorb food and formula is easier to digest than food. My daughter was diagnosed at 16, so really after she was done growing, but was very underweight and malnourished and even had low bone density because she was so malnourished. She tried increasing her calories to gain weight, but just was unable eat enough and probably absorb enough. She really needed formula to gain weight and to make sure she was getting all the nutrients she needed. It even helped her gain bone density.
In terms of drugs, many GIs tend to use biologics first now. However, it does depend on where you're located - in the US, it's more common now, but in other parts of the world (the UK, for example) it's less common since they are expensive. Other options include immunosuppressants like Methotrexate and 6MP.
It can be hard on kids and teens and some GIs allow 10-20% of your calories to be food and 80-90% to be from formula, just to make it easier to do (and it does generally work as well or nearly as well as 100% formula). Some kids are able to do it more easily (especially they're younger) and others really struggle with it. My daughter really struggled with it as a teen and so we used steroids instead.
I will also add that some kids manage to grow even with active disease - it just depends. But ideally, the goal is remission to keep your small bowel and colon from becoming damaged, in addition to letting you grow and gain weight.
Formula can really help with that because when your gut is inflamed, it is hard to absorb food and formula is easier to digest than food. My daughter was diagnosed at 16, so really after she was done growing, but was very underweight and malnourished and even had low bone density because she was so malnourished. She tried increasing her calories to gain weight, but just was unable eat enough and probably absorb enough. She really needed formula to gain weight and to make sure she was getting all the nutrients she needed. It even helped her gain bone density.
In terms of drugs, many GIs tend to use biologics first now. However, it does depend on where you're located - in the US, it's more common now, but in other parts of the world (the UK, for example) it's less common since they are expensive. Other options include immunosuppressants like Methotrexate and 6MP.
So it's usually EEN for the first 6-8 weeks then biologics or some other maintenance med? Also is it pretty much hard to grow on steroids even if inflammation is reduced? Also, I could try and convince my GI for biologics to see if it is a feasible option as I am fortunate enough to come from a wealthy background costs for biologics shouldn't be a problem.
Normally you start something to control inflammation quickly (EEN or steroids) and a maintenance med simultaneously. The reason, like @my little penguin explained above, is that maintenance meds take 6-12 weeks or more to kick in.
In terms of growing on steroids, generally GIs will try to minimize your time on steroids, so they'll only be given for a short amount of time. So one course of steroids is unlikely to impact your growth much. In terms of growth, it really depends on the dose and length of time you are on steroids. I am going to tag @xmdmom to see if she has any insights.
Well, with biologics, at least in the US, it's thousands of dollars an injection or infusion (and you may have injections every 1-2 weeks or infusions 4-8 weeks). Humira, for example, is over $3000 per shot and you have shots biweekly, after loading dose of 4 shots at once and 2 shots at week two. Stelara is even more expensive - if you pay out of pocket for it, it's $25,000 per injection which you may get every 4-8 weeks. So in general, insurance companies have to cover them and they will cover them if your GI thinks they are required, although sometimes you may need to appeal.
First, let's back up. Have you just been diagnosed with Crohn's? How old are you? What country do you live in? We have parents with teens on the forum that are mostly from the US, but some are in other countries, so if you're not in the US, they can step in to help explain how getting biologics would work.
In terms of growing on steroids, generally GIs will try to minimize your time on steroids, so they'll only be given for a short amount of time. So one course of steroids is unlikely to impact your growth much. In terms of growth, it really depends on the dose and length of time you are on steroids. I am going to tag @xmdmom to see if she has any insights.
Well, with biologics, at least in the US, it's thousands of dollars an injection or infusion (and you may have injections every 1-2 weeks or infusions 4-8 weeks). Humira, for example, is over $3000 per shot and you have shots biweekly, after loading dose of 4 shots at once and 2 shots at week two. Stelara is even more expensive - if you pay out of pocket for it, it's $25,000 per injection which you may get every 4-8 weeks. So in general, insurance companies have to cover them and they will cover them if your GI thinks they are required, although sometimes you may need to appeal.
First, let's back up. Have you just been diagnosed with Crohn's? How old are you? What country do you live in? We have parents with teens on the forum that are mostly from the US, but some are in other countries, so if you're not in the US, they can step in to help explain how getting biologics would work.
Yea I will definitely see what my GI think is feasible for me (EEN or Steroids). Damn I think biologics should be covered by the NHS afaik I believe mtx is the first line of treatment if that doesn't work humira is given.
Nope I haven't been diagnosed yet but I got my stool test done and my FCP was 1800 and my doctor said it was undoubtedly crohn's as well as my symptoms I have had. So I have a colonoscopy for next week friday to see if I have it ;-; I am 17 years old in England so if anyone could give me advise it would be great.
Thanks
Nope I haven't been diagnosed yet but I got my stool test done and my FCP was 1800 and my doctor said it was undoubtedly crohn's as well as my symptoms I have had. So I have a colonoscopy for next week friday to see if I have it ;-; I am 17 years old in England so if anyone could give me advise it would be great.
Thanks
Biologics are covered on the NHS they will probably try and get you stable on a cheaper option first - if they suggest azathioprine or a very similar drug 6mp and you are a boy then ask about the risk profile. My understanding is while all drugs have potential risks there’s something about azathioprine and teenage boys that is a more risky combination.
In terms of Biologics you are likely to get humira or remicade (most likely a cheaper rip off version of either) as they have been out longer so other companies have been able to provide a basically identical drug at lower cost. Stelara and entyvio are newer and more expensive.
In terms of meds it is much more about trying and seeing how your body responds in real life than just looking on paper at what seems best. For example my body hated remicade- rash, fever, chest pain, racing heart beat - lots of other people love it and go into a nice long term remission.
There’s also a question of whether going to hospital every so often to get an infusion or doing an injection at home suits you best.
Do have a think about diet too both in terms of possible Crohn’s and also your questions about height. Some people find an anti inflammatory diet helpful but you need to also be getting in a lot of nutrients and calories- in your situation might be worth asking doc for a dietitian referral or at least using an app to track your nutrition. The reason I say maybe a dietitian is because a popular diet for Crohn’s is SCD but people can lose weight on it so for you maybe not a good option.
Good luck with it all.
In terms of Biologics you are likely to get humira or remicade (most likely a cheaper rip off version of either) as they have been out longer so other companies have been able to provide a basically identical drug at lower cost. Stelara and entyvio are newer and more expensive.
In terms of meds it is much more about trying and seeing how your body responds in real life than just looking on paper at what seems best. For example my body hated remicade- rash, fever, chest pain, racing heart beat - lots of other people love it and go into a nice long term remission.
There’s also a question of whether going to hospital every so often to get an infusion or doing an injection at home suits you best.
Do have a think about diet too both in terms of possible Crohn’s and also your questions about height. Some people find an anti inflammatory diet helpful but you need to also be getting in a lot of nutrients and calories- in your situation might be worth asking doc for a dietitian referral or at least using an app to track your nutrition. The reason I say maybe a dietitian is because a popular diet for Crohn’s is SCD but people can lose weight on it so for you maybe not a good option.
Good luck with it all.
One other thing in England might be just my ibd doc and nurses but they tend to use the technical name for the drug not the brand name
So
Remicade = infliximab
Entyvio = vedolizumab
Stelara = ustekinumab
Don’t know humira but it will also have a long weird name ending in mab
So
Remicade = infliximab
Entyvio = vedolizumab
Stelara = ustekinumab
Don’t know humira but it will also have a long weird name ending in mab
6-mp/imuran /aza is not recommended for kids anymore due to high lymphoma risk at least in the US
In particular T-cell lymphoma is fatal and higher risk for teenage boys when it’s combined with a biologic
Gi’s prefer to use methotrexate instead for boys
My 18 Ds takes methotrexate and Stelara.
He was on 6-mp when he was first dx .
in the UK -modulen is the formula used for een (similar to peptamen in the US )
Fortstips (I believe ) is similar to pediasure maybe
humira=Adalimumab
Generic for humira
www.nhs.uk
In particular T-cell lymphoma is fatal and higher risk for teenage boys when it’s combined with a biologic
Gi’s prefer to use methotrexate instead for boys
My 18 Ds takes methotrexate and Stelara.
He was on 6-mp when he was first dx .
in the UK -modulen is the formula used for een (similar to peptamen in the US )
Fortstips (I believe ) is similar to pediasure maybe
humira=Adalimumab
Generic for humira
Adalimumab (Humira) and biosimilars: medicine used for inflammation
NHS medicines information on adalimumab – what it's used for, side effects, dosage and who can take it.
www.nhs.uk
So are you seeing a pediatric GI or an adult GI? In the US, kids and teens stay with with their pediatric GI till they are in their 20s and honestly, most parents and kids prefer that because pediatric GIs tend to have more experience with growth issues and pediatric disease which tends to be more aggressive than adult disease (and pediatric hospitals are more friendly!).
Scopes are not too bad - the prep is no fun, but the actual scope is easy because they give you sedation and you’re asleep for them (I know this is true for kids in the UK - @Delta_hippo is it different for adults?)
So in the UK, based on what I’ve read on the parents’ forum (I’ve been here 9 years now) most kids are put on immunosuppressants first - they used to use Azathioprine or 6MP but those come with a higher cancer risk for teen males (though it’s very, very rare), so I would guess they’ll use Methotrexate. Some kids do respond well to MTX. It does come with side effects (nausea is most common) but not all kids have side effects and if you do, there are meds they will give to help, such as anti nausea medication. Taking folic acid is also very important and will help prevent side effects. My daughters are both on MTX, one has no side effects at all and the other has mild nausea sometimes but rarely takes anything for it. It really helps them both but they both take it in combination with biologics
If you don’t respond, then they will likely use Adalimumab (Humira is the brand name but there are now bio-similars, which are essentially generic versions of the drug) which is an injection or infliximab which is an infusion. Most kids respond extremely well to both and they have minimal side effects.
EEN is commonly used in the UK for kids based on what I’ve read on here (we have some parents from the UK). I don’t know how commonly it is used if you’re with an adult GI - @Delta_hippo will have to answer that.
Scopes are not too bad - the prep is no fun, but the actual scope is easy because they give you sedation and you’re asleep for them (I know this is true for kids in the UK - @Delta_hippo is it different for adults?)
So in the UK, based on what I’ve read on the parents’ forum (I’ve been here 9 years now) most kids are put on immunosuppressants first - they used to use Azathioprine or 6MP but those come with a higher cancer risk for teen males (though it’s very, very rare), so I would guess they’ll use Methotrexate. Some kids do respond well to MTX. It does come with side effects (nausea is most common) but not all kids have side effects and if you do, there are meds they will give to help, such as anti nausea medication. Taking folic acid is also very important and will help prevent side effects. My daughters are both on MTX, one has no side effects at all and the other has mild nausea sometimes but rarely takes anything for it. It really helps them both but they both take it in combination with biologics
If you don’t respond, then they will likely use Adalimumab (Humira is the brand name but there are now bio-similars, which are essentially generic versions of the drug) which is an injection or infliximab which is an infusion. Most kids respond extremely well to both and they have minimal side effects.
EEN is commonly used in the UK for kids based on what I’ve read on here (we have some parents from the UK). I don’t know how commonly it is used if you’re with an adult GI - @Delta_hippo will have to answer that.
Sorry to be slow on the reply my experience has been that colonoscopy you get offered pain relief but not put under (I don’t know if it’s negotiable) and when I asked about EEN I was told not much evidence base for adults but again I didn’t push particularly hard.
Hope you are doing okay. How are things?
Hope you are doing okay. How are things?
By pain relief I think it was pethidine but not 100%
Hey I just had my colonoscopy a few days ago. I'm not sure what happened but my prep was apparently not too good, so I don't know if they could seem much inside my colon, however I know they took biopsies of the right and left colon. Hopefully I didn't jeopardize my results from the colonoscopy and hopefully biopsies alone should be able to indicate a full diagnosis as I can't have treatment until I get fully diagnosed. They told me biopsy results will take 1-2 weeks. But for now I am suffering with the symptoms.
Glad the colonoscopy is over and hope you get answers and help soon.
If you are struggling in the interim I’d have thought an anti inflammatory diet and some gut soothing teas wouldn’t hurt. I like hot chocolate made of almond milk, teaspoon honey, teaspoon cocoa powder, teaspoon slippery elm powder to ease tummy. Or bone broth if you can get past the smell. There’s a nice gut healing tea recipe on a New Zealand herbalist website (google R whelan herbalist). There’s also things that might help and can’t hurt like vitamin d and fish oils. Don’t make the mistake I did in early days and think any of this is an alternative to medicine, I’m just trying to think of things that might take the edge of while you’re waiting
If you are struggling in the interim I’d have thought an anti inflammatory diet and some gut soothing teas wouldn’t hurt. I like hot chocolate made of almond milk, teaspoon honey, teaspoon cocoa powder, teaspoon slippery elm powder to ease tummy. Or bone broth if you can get past the smell. There’s a nice gut healing tea recipe on a New Zealand herbalist website (google R whelan herbalist). There’s also things that might help and can’t hurt like vitamin d and fish oils. Don’t make the mistake I did in early days and think any of this is an alternative to medicine, I’m just trying to think of things that might take the edge of while you’re waiting
I don’t know to be honest have only had one colonoscopy and didn’t have that issue I would think the biopsies should be okay it’ll be more the visual assessment of inflammation that might be harder to be sure about. At least it’s over though. Hope you get answers soon