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My 10 year old Boy - prescribed Humira for life before any diet assessment

Hello all, I have been reading your threads since joining this forum yesterday when we got the biopsies back confirming our 10 year old boy has Crohn's (mild), in addition to mild rheumatoid arthritis (hips). I'm so glad this forum exists - the stories are at once brutally heartbreaking, yet hopeful and supportive. While both our pediatric Rheumatologist and pediatric GI doc recommended both Humira and Methotrexate to control the inflammation in both the joints and gut, the Rheumatologist said that it was entirely possible to reassess the need for continued medication after a year of showing no inflammation, which he also suggested as highly likely. On the other hand, our GI doctor said we can't take our son off Humira really for his whole life, as if there is a prolonged gap in taking this medication, his immune system will attack the Humira and it will no longer be effective and we will have lost one of our main tools for controlling his inflammation. While this makes sense as she explained it to us, neither doctor has been advocating any meaningful change in diet to adjust the gut biome prior to starting medication, even though the GI doctor said she believes the source of problem lies in our son's biome. To be clear, my wife and I are not at all opposed to the medication, and we understand that it needs to be administered ASAP to get the inflammation under control before any permanent damage occurs (so far his growth, etc... is stable, he just can't sprint or run as fast as he used to be able to, and we saw the inflamed colon in the pictures from the colonoscopy). My heartbreak is that it feels like once we start Humira, it will be like getting bitten from a vampire - you can never go back and I can see how being on these meds forever could effect him as he progresses through his young life and into college and beyond. And while we have been on a pretty strict anti-inflammation since February, we have not fully explored other diets that we would explore if we had the luxury of time (SCD, exclusionary diet). All the dietary recommendation can be confusing (for instance there are youtube videos of Crohns patients touting Raw dairy as THE best part of their diet (which cured them supposedly), while many IBD diets exclude dairy all together). Our family has been eating almost an entirely organic, high vegetable, non-processed food diet since before we had kids. We have a very healthy active lifestyle and the only history of IBD is my brother who has had bouts of Diverticulitis. Yet it seems like his immune system may have been working against him since early on - he does not have TB or Chicken-Pox anti-bodies, despite getting vaccinated for those.

Thanks for listening :) I guess my question to you all is this: Will we ever be able to try to getting my son off the Humira and see if we can fix his gut biome with dietary changes, or see if the meds have healed his gut for good, or see if his body has grown out of this malady? I know that everyone says that Crohn's is a life-long disease, but both my wife and I remember writhing in bed with unexplained belly pain many times in our youth, and both of us grew out of it. I know that probably seems like wishful thinking, but it also seems insane to not look into other more natural and holistic alternatives than life-long injections and all the side effects comes with that and the medications, especially since he is currently categorized as "mild". Many thanks in advance!! :)
 

Tesscorm

Moderator
Staff member
Welcome to the forum! It is a great place to find advice, support and information! But, I'm sorry you had the need to come here.

It is heartbreaking and hard to accept when our kids are diagnosed. My son is an adult now but he was diagnosed at 16 yo. His initial treatment was exclusive enteral nutrition (EEN) for 6 weeks and then supplemental/partial enteral nutrition (PEN) for just over a year. Upon his move to an adult GI, he was put on remicade... another heartbreaking moment so I can well understand your feelings.

I know most can't find or maintain remission on diet. There may be a few, I've forgotten their names but maybe they'll pop in here but the success is limited. From what I've read here, it's even harder to find a diet to maintain remission while allowing a growing child to obtain all the necessary nutrients and calories. But, I won't say 'never' as it's not something I have experience trying.

Whether or not humira is lifelong... my son is on remicade and, yes, remicade is, in theory, as lifelong as humira... but, just at his last check-up, his GI said he would consider taking away the remicade as my son has been in remission for many years now (he's 25 and has been on remicade for approx. 7 years). As my son is just starting out on his career and mid-20s is a busy, exciting time of life, his GI said he wouldn't want to rock the boat now but it's something he'd consider. He also said he'd consider Stelara or Entyvio (now I've forgotten which) as it's a less systemic biologic.

My point for telling you this is that I'd suggest you not get too focussed on the 'lifelong'... there are new treatments in the works, perhaps even a cure one day. Get your son well, keep him strong and get him through puberty and through his teen/young adult years healthy... through the years, things may change.

Also, be aware that crohns can be very stealthy! Many of the members here can attest to that... CIC and Catherine's daughters have histories where all was well until it suddenly wasn't! While my son was on EEN, it took him into remission (labs were good, etc.), PEN kept him in clinical remission (he looked good, felt good, gained tons of weight, played hockey, etc... however, MREs began and continued to show simmering inflammation for months). No one knows when things can turn more serious.

So, it is important to get your son healthy and then monitor the situation over time. And try not to worry about 'lifelong'... things can turn for the best and maybe one day, lifelong won't be part of the treatment conversation! :D
 

my little penguin

Moderator
Staff member
So your childhood Gi pain is not the same as crohns
It just isn’t
The immune system for your son is attacking itself
Plain and simple
Gi upset from the stomach flu or ibs isn’t the same
Docs say “for life “ on biologics for the reason if they find a medicine that works keep the crohns inflammation at bay they try to hold on to the medicine as long as possible
Odds are if you get 5-9 years with humira working you consider it a blessing
Reality
There are few meds that are available to kids with crohns
There are even few biologics that treat both crohns AND juvenile arthritis
Ds was dx with crohns at 7 and arthritis at 10
He is now 16
He started remicade at 8 - it was supposed to be for LIFE - stopped after 8 months allergic reaction x2
Humira at age 9 - again for LIFE
Developed arthritis while on humira so methotrexate was added
Humira stopped working at age 14
Has been on Stelara since age 14 -2.5 years at high dose high frequency because arthritis does not respond well to lower doses of Stelara

after Stelara there are NO more biologics that treat both diseases plain and simple

yes Ds was off humira for 6-8 weeks due to non ibd surgery - stayed on methotrexate
Still flared arthritis and crohns - restarted humira and it no longer worked ..

with crohns when you get a med that works you hope and pray it stays that way for as long as possible
Crohns in kids can start out mild and get ugly or stay mild
It tends to change over 10 years
Also tends to have high rate of surgery

arthritis of the hips (assume hla b27 positive )
This is difficult to treat tends to progress in males to ankylosiing spondyloarthritis by time they are adults
The meds for AS don’t mesh with crohns meds

Ds has juvenile spondyloarthritis hla b27 positive but it has not traveled to the spine or hips
Just peripheral joints so they watch closely
His arthritis is now far worse than his crohns
it was t at the beginning

We tried een (formula only )
He has done cded , free of everything diet
Mostly organic etc
Diet doesn’t help arthritis
And growth is important

My advice is hope humira works
It may not
And hope it stays that way as long as possible

good luck
 

my little penguin

Moderator
Staff member
Maybe this will help
If your child was diagnosed with type 1 diabetes
You would not wonder if they would outgrow it later
This is the same the immune system is attacking the gut and has extra intestinal manifestations(EIM) such as arthritis which it attacks the joints as an added bonus -EIM s in general move your diseases up a level unfortunately.
In type 1 diabetes the immune syst the pancreas

the first Two years are the hardest till you get a new normal
 
Hi, welcome to this forum. It is a great support system. Your son is 10. My son is now 21 but may have had the beginning of arthritis in his hips as early as 14 as well as crohn's (although there were no obvious signs for crohn's - just delayed puberty). He never told us that his friends would make fun of him when he ran and then he started to walk with a bit of a waddle and it was slight. What I am saying is my son was diagnosed at 19 with AS and crohn's and I wish we caught it earlier as his hips are described by his rheumy have "mild severity" and his also has some erosion of his S1 joint. Ironically, crohn's exhibited itself more at the age of 19 and he was diagnosed with moderate to severe crohn's. He was at the point where he had no mobility, and originally we were sent to the neurologist and we lost a year because of that. He is doing great now - is on Remicade and has mobility and has gained a much needed 40 lbs and is enjoying life as a young man should.

I am glad you have a diagnosis while your son is in mild stages of both dz. This way, you can get ahead of it. Good luck and thank you for sharing.
 
It really depends on who you ask. I won't say much other than to do as much research as you are able.

There are people who do quite well taking biologics and there are others who have had success going an alternative path. And of course many people do both.

I don't know what is right for your son, but seeking and asking questions is always a good thing. You never know what will come up and what you may discover. Seek and you shall find, as the old saying goes :)
 
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