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

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travelergt4

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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!! :)
 
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
 
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
 
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 :)
 
I want to thank you all for replying. It is really kind of all of you to respond and your feedback is greatly appreciated - this forum is an incredible resource for us newbies to Crohns. My wife and I have been deep over our heads with research on this in the last month, 2nd and 3rd opinions, countless doctors visits, nutritionist, immunologist, infectious disease (drs thought he was vaccine non-responder, but actually not the case), pulmonologist and many blood tests, etc... We still have to get the MRE and see a geneticist. From your replies, I can see that so far we are relatively lucky to catch it early, etc... With our 2nd and 3rd opinions, the suggested medication path from the pediatric GI doctors has been changed from Humira/Methotrexate to Remicade/Methotrexate, mainly due to the ease of administering Remicade vs. Humira, but we are consulting with our pediatric rheumatologist today to confirm he agrees with this change in course. At the same time, we have been on a strict anti-inflammatory diet and strongly considering SCD or CDED diets prior to starting a biologic we can't stop, since it seems like now is our one and only opportunity in his young life to try healing without biologics. None of our GI doctors or our rheumatologist speak positive to remission without biologics, however, and it seems that most folks on this forum agree with that assessment. Honestly, it may have been wishful thinking but I was hoping for some non-biologic/diet-related success stories here, but I have not seen any. It is very stressful because if we choose to try diet-related healing and we are wrong it could cause permanent damage, so we are probably going to start Remicade/Methotrexate soon. I am taking My Little Penguin's experience and suggestions to heart. Being at this crossroads is stressful. We have a good friend who's son has very severe Crohn's and is on Remicade and she says if she could do it over again she would have not gotten on biologics so quickly without trying other things first, so I'm being pulled in both directions. I am more than curious as to why none of our GI doctors chose to analyze my son's microbiome, which they all said is a well-known factor in Crohns, if a as-of-yet poorly understood component. My son has already done the Colonoscopy and Endoscopies and have done so many other tests - why wouldn't every Crohn's patient have their micro-biome bacterial make-up be analyzed for researchers to have access to and compare to healthy biomes? We would have millions of data points.... I want to know how his compares to a healthy biome, but our doctor said he doesn't get that test/information because they don't know what to do with the results/data. However, both CHOP (Children's Hospital of Philadelphia) and Seattle Children's hospital (maybe other hospitals too) advertises that they do indeed regularly analyze the micro biome in their patients, among other "Innovative Treatments". We have an opportunity to visit CHOP next week if we choose to but I don't know if it is a waste of time and energy, to travel across the country at this time, just to have another of the same recommendations, Remicade and Methotrexate...
 
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They did explain to you that although diet may be helpful for crohns in some (most need meds and ADULTS are not the same as kids in anyway )
Experience may vary in this
Arthritis (inflamed joints ) DO NOT become uninflamed by diet
Just doesn’t happen
Not by formula only
Not with Scd
Not woth cded
By not treating with meds
Your not treating the joint inflammation and risking damage
Please make sure to have that conversation with your rheumatologist
Ds has damage in his fingers from arthritis
It limits things he would like to do on a higher level (cello ) but the damage scar tissue on his tendons from arthritis limits this . That is a very hard conversation to have with your teen
That we didn’t get things under control fast enough so you know have restrictions you never would have had if the right med combo was tried earlier .

Crohns can have damage as well but at least there are a few studies on diet
Diet does not stop or calm inflammation in the joints
I don’t know of any easier way to put it
That is why if a biologic is needed for his joints you might as well treat the crohns at the same time

Ds has been seen at CHOP and has had opinions at other places as well over the years
Worth getting an opinion there
Will they tell you biologics plus mtx probably
Depends on his history
Why because that is the standard of care that gets good results for kids who have not one but Two autoimmune diseases attacking their body

you need to get the diseases under control quickly
And meds do just that
 
It probably is the case that a majority of people here have noticed substantial positive effects from biologics. However, in my son's case only two things have had dramatic effects: EEN and antibiotics. Remicade may or may not have helped temporarily but simply didn't get him to remission, and Entyvio may be having some subtle effects but we're not sure yet. Every case is different.
 
I'm so sorry to hear about your son's diagnosis. Treatment decisions are so hard, especially at the beginning. Most of us here would have jumped on a dietary or other lifestyle-based treatment if we could have. The problem is that there isn't one that works consistently. The other issue is that kids only have a short window during which their brains and bodies are developing, so it seemed especially important to us that we do everything possible during our daughter's teen years to avoid stunting her growth. My daughter has been on the Remicade/mtx combo for more than 5 years now, starting when she was 12, and it's worked well for her.

We actually did try strict SCD, right after my daughter's diagnosis, in combination with Remicade. Her health worsened during that time, until we increased her Remicade dose and also added EEN and steroids and methotrexate.

Good luck with all your decisions. I hope whatever you decide on works well for your son.
 
We tried EEN and then added in SCD at the beginning (She was 3/4 yrs old at the time). As soon as we added the SCD she worsened. We thought it was "die-off" and kept with SCD and she worsened further.

We agreed to Humira after that. She has had ups and downs along the way (she is 9 now) but still taking Humira and also MTX injections.

I never wanted this but she has had a relatively normal life on Humira(school, summer camp and so on) as well as avoiding surgery so far. Growing normally also.

That is our perspective. The decision. Aking is agonizing. My heart goes out to you.
 
My kiddos have arthritis, and the younger one has Crohn's too. Her arthritis was not treated aggressively enough and was not caught early enough, and as a a result, she is 23 and has prosthetic joints. Has had a total of 9 surgeries now, including joint replacements. Arthritis and Crohn's can both be incredibly disabling and debilitating and treating aggressively is important to protect your kiddo's joints. Mine has joint damage in her sacroiliac joints, hips, jaw joints, knees, shoulder and fingers. It is hard to live with and hard to know that if we had treated her earlier, she may have been better off.

CHOP is an incredible hospital, and honestly, I would go there if it were my kid (she was seen there for many years). You may get the same recommendations but you will also get access to the research studies there, including those on diet and the microbiome.
 
I wanted to add - my daughters' lives were completely changed by biologics. Our only regret is not starting them sooner. No issues and they have been on biologics for 10+ years, as well as Methotrexate.
 
It was hard for me to accept that my son needed biologics. As I explained above, his only treatment for two years was EEN and PEN, which I was ecstatic about!! No risks!! The exclusive period did indeed take him into remission... after the six weeks, he felt great, had gone back to playing on two competitive hockey teams (on the ice 5x/week), had gained back almost 10 lbs (he'd lost 25 lbs), paleness gone, and labs were good. Other than nexium (heartburn caused by the NG tube), he was on no meds!! His maintenance treatment continued to be enteral nutrition but at half dose (partial EN). As a mom, this was great to me!! But, his GI was doing MRE's every six months and they began to show simmering inflammation. And his labs began to go off 'slightly', nothing huge but trending the wrong way. But, he continued to gain weight and really did feel and look great. So easy to stick your head in the sand re those pesky MRE results and minor elevated labs (if I remember correctly, CRP went from 135+ pre-dx to 5 while on EEN and beginning to rise to 15-30 on PEN).

When we transferred to an adult GI, he was adamant that my son move to a biologic (even though his CRP had actually dropped to 6.5 while still only on PEN!) As my son was 18, I had to leave the decision to him. We discussed the risks of the continuing inflammation shown on past 2-3 MREs, GI said there was no guarantee there'd be 'warning' before things worsened (ie Catharine's daughter's recent experience!) and it could lead to surgery. I discussed the possibility of trying Low Dose Naltrexone (there was quite a discussion on using LDN on the forum a few years ago... not sure what the consensus is on it now but, a couple of kids did try it at that time and it didn't maintain remission). But my son didn't want to risk it and went ahead with remicade.

It's now been 7 years. During this time, he began and finished university, lived away from home during school, continued to play hockey, travelled to Caribbean and Europe with friends, had shoulder surgery (unrelated to crohns or arthritis) and recovered without incident, has started working and is now living with roommates downtown.

He's had no crohns issues. He feels great, exercises, still plays hockey and looks healthy. He does regularly get weird rashes and ailments, sometimes odd pains in joints, recently in right side of ab.... Knock on wood!, so far, they always clear up and mostly we never find out exactly the cause or even what it was... they are annoying and worrisome at the time but they've always been manageable and do eventually go away. They are likely related to being immunocompromised in some way but... who knows??

While I can't say what would have happened if he hadn't started remicade, I can say that since he's been on remicade, he has gone on with his life as if he didn't have crohns!

Re humira vs remicade... prior to him starting remicade, I asked his GI why remi and not humira... his GI said both worked but he felt remicade was more convenient... only once every six weeks and labs would be done at the same time. And, as my son would be away at school, no worries about 'forgetting'...

One other consideration. It was only after my son was on remicade for a year or so that we tested for antibodies (before his caribbean trip, I think). At that time, we found out that he doesn't have full immunity to mumps. I wish I'd known that I could've tested this before beginning remicade. Once on a biologic, you can't have live vaccines... the MMR is a live vaccine. If we'd tested before beginning remicade, he could've had a booster shot. (But, having said this, have a booster vaccine may delay the start of remicade/humira for your son, so that risk needs to be weighed as well.)
 
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Hi,

So sorry you have had to join this forum. It's very frightening on your child's diagnosis but things to calm down and your life becomes the new norm.

My 14 year old daughter was diagnosed with Crohns age 12. She was put straight onto steroids and had an iron infusion. This seemed to work for her straight away and it was so good to see her eating again and bouncing around. She was then put on Azathioprine with the intention of adding Humira onto that. However she had a really bad reaction to the Azathioprine so was taken off that after 3 weeks. She was then started on Humira. The consultant was very good at explaining or the pros and cons of our daughter being on humira possibily for life. Believe me the pros outweighed the cons by far. We have to remember crohns is a very individual illness and every patient is different. I totally trust our consultant 100% and happy to go with whatever he prescribes to kero our daughter well. She has been on humira for over 2 years now and has been in remission for that length of time. I know that is not a cure but I am happy that she is doing well and at the moment no damage is being caused. As our consultant told us biologics is to maintain the crohns. When I tell people my daughter has crohns most reply with.... Oh its all to do with diet isn't it. My reply to them is always the same... If there was a diet out there that cured crohns then everyone would be on that diet.
 
Much the same as others have stated, we tried diets we even tried LDN but it wasn't until remicade that things truly changed and got better.
If I would have started earlier could we have saved him some of the mental anguish from being delayed in growth and development. Obviously his physical health is the number one reason we're glad he's on remicade but his mental health and quality of life has been huge.
Best example of this is he lives baseball, has since he was a toddler. By junior high, high school his peers had developed so much more than him he couldn't compete. While on the team in high school he was team manager and only had one at bat and one inning in the field and that was after being on remicade for a couple of years and had grown 9"
At college he went to talk to the coach about just keeping stats for the team, again he loves baseball. Coach agrees and he's happy. He goes to all practices and they make him part off coaching staff. Week one day at practice they need someone to fill in pitching for batting practice and he said he would do it until the pitchers were ready. Well pitching coach watched him for a while and asked him why he wasn't on the team and would he like to be a relief pitcher. He still mentally thought of himself as being tiny compared to other players but he was now 6'2". He went on to play for the next couple of years and pitched in many games and only stopped at his choice this last year when he really needed to concentrate on classes.
 
Jack’s story made my day!! I’m so glad he got to play on the team. It’s great to hear success stories - thanks for sharing!
 

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