Crohn's Disease Forum » Your Story » New to this diagnosis for my 7 year old

09-10-2017, 11:25 AM   #1
Join Date: Sep 2017
New to this diagnosis for my 7 year old

So Nyla who is 7 years old was just diagnosed with Crohn's. We have just consulted with the GI doctor for the first time to discuss treatment. He immediately wants her to begin Remicade. From what I've read so far there are serious side effects for children so young, including lymphoma. We have serious concerns about this but know she needs to be treated. Should we be trying the conventional treatments before the biologics? She is eating ok and her inflammation right now is located in her terminal ilieum and right side of colon. She is anemic and taking ferrous sulfate and vitamin D supplements. Her stomach is distended and she fatigues. Where do I begin with treatment? I need help understanding this. I'm scared and overwhelmed with the side effects of these drugs. Please help.
09-10-2017, 11:52 AM   #2
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Hi and welcome! Make sure to check out the Parents' forum - there are LOTS of us who have been in the same place.

The goal is to prevent long-term complications - strictures (narrowing from scar tissue), abscesses, fistulae, growth delay, malnutrition, surgery. I know Remicade seems like a very strong and scary med, but it is your best chance at preventing complications in the future.

Before my daughters were put on biologics, I agonized and worried and lay awake at night. Finally, we agreed to put my older daughter on a biologic - her quality of life was just miserable. She was in pain all the time, tired all the time, not sleeping well and missing school. She had gone from a happy teenager to a kiddo I didn't recognize.

Within months, I had my happy child back. It was the best decision we ever made to start biologics.

With my second daughter, I agonized all over again, even though I KNEW how much biologics would help. Eventually we put her on one, and again, I had my kiddo back.

At some point, the disease becomes much scarier than the medications, and you find yourself just so grateful that these meds exist. I can honestly say my only regret is not starting them sooner. They have been on biologics for 7-8 years and we've never had side effects.

The risk of cancer is TINY, but the risk of complications from the disease (surgery, growth failure, abscesses, fistulae) is large.

This is a good presentation that explains the risks and the benefits of IBD meds:

Biologics are being used earlier now because they are most effective. The goal is to get the disease under control quickly, before it does permanent damage. The other option would be immunomodulators - Methotrexate or 6MP/Imuran.

My girls are on both. I can say that we have had more side effects with MTX/Imuran than with biologics. But those are also good options.

If you are uncomfortable, I would encourage a second opinion.

I'm going to tag other parents who can help:
my little penguin
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-10-2017, 01:35 PM   #3
my little penguin
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Ds was dx at age 7 as well
He is almost 14
The risk of lymphoma is much higher for 6-mp/imuran
Ds started remicade at age 8

We had to go through all the lower level drugs first (step up program )
This took a year while he got worse

He took 5-asa for a month that did nothing

He took 6-mp for 8 months (continued to vomit and he tired etc..) for 8 months
He took methotrexate for 12 weeks
Then was finally offered Remicade

7 weeks into remicade we saw a new kid and didn't realize how sick he really had been
You get used to seeing a kiddo day in and day out

I cried every time he got an infusion
Then I saw him get better

He has been on biologics since age 8 and not had any major issues
Including attending elementary school
Being in sports and playing instruments

I can say it will be ok but give yourself time to grieve
It's hard
Big hugs
DS - -Crohn's -Stelara -mtx
09-10-2017, 02:13 PM   #4
my little penguin
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09-10-2017, 02:28 PM   #5
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I don't mean to sound skeptical or ungrateful, but the positivity about Remicade makes me think you are being paid by the pharmasutical companies. What about those side effects, especially in children so young?
09-10-2017, 02:44 PM   #6
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Nope - just a mom who has been on this journey for a long time .

We have never had side effects with Remicade. My girls tended to be a little tired the day of the infusion, but they were given Benadryl and Tylenol as pre-medications, and so the tiredness could easily have been the Benadryl.

My younger daughter has been on "high dose Remicade" to control very aggressive juvenile idiopathic arthritis (in addition to Crohn's). That was 20 mg/kg every 4 weeks - so 4x the normal dose and twice the normal frequency.

I was terrified about infections, but she was absolutely fine! No increase in infections. My girls have been in middle school, high school and now college without any issues.

The only medication that caused an increase in infections for my daughter was actually Imuran (sister drug of 6MP). She was taken off it because she kept getting infections.

I know the drugs sound extremely scary right now. Believe me, we were all in your shoes. But once the drugs work, then suddenly they don't seem scary anymore.

The important thing to remember is that it is all about risks vs. benefits. ANY drug can have side effects, even Tylenol.

My younger daughter's scopes at diagnosis showed ulcers through her entire colon and friability (bleeding) in her terminal ileum (the end of her small bowel). After 8 months of Remicade, her colon looked "beautiful" according to her GI - you would never know she had Crohn's! The TI was still a little inflamed, but was MUCH better.

We are really positive about these drugs because we've watched them work. And because we have been in your shoes and worried and agonized about putting a kiddo on them.
09-10-2017, 02:54 PM   #7
my little penguin
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Seriously paid??
Only members with Crohns or parents of kids with Crohns are on here
Please read the leaflet on Tylenol
It's given to infants without a second thought
It can have potential side effects of
Liver failure ,Steven Johnson syndrome or even death

No one is saying remicade is without POSSIBLE side effects
All drugs have possible side effects

Crohns meds are ALL ugly and scary in terms of possible side effects

6-mp/imuran have high risk of lymphoma and very hard on the liver
Increased risk of basal cell skin cancer

Methotrexate (mtx) liver issues increased cancer risk

Remicade /humira
Liver damage
Risk of cancer
Skin/nerve issues
And and and ...,

The thing is you are modifying the immune system with these drugs
That slows the disease

Modifying the immune system regardless of drug has risks

Leaving Crohns untreated or under treated in kids has risks
Cancer due to inflammation reoccurring over and over
Surgery to remove damaged intestine
Resulting in short bowel syndrome

Poor growth
Uveitis/iritis (blindness)
Liver damage
Brittle bones

Non medicines
Een (exclusive enteral nutrition - 100 % formula only )
Een is used instead of steroids in kids to induce remission
Een typically last from 6-9 weeks while waiting for maintenance med to kick in

Some big ibd kiddie hospitals offer
90/10 or 80/20
80 % Een and 20% solid food as a treatment

Doesn't work for everyone
Get a second opinion at
Boston children's
Children of Philadelphia
Cincinnati children's

Since you don't seem to feel comfortable with your doctors suggestion
(Not that any parent feels comfortable ever )

Tagging optimistic her child is on een /scd

Scd diet is extremely difficult most kids lose weight and not necessarily recommended

Ds has been in remicade for 8 months
He had two minor allergic reactions
He was then switched to humira for over 5 years
Added mtx for juvenile spondyloarthritis
Humira recently stopped working
So he was started on Stelara
Still waiting for that to work

And using steriods plus 50% een and 50% solid food

There is a parents research section
With peer reviewed papers from NIH etc in all the different treatments

Current treatment of pediatric Crohns
09-10-2017, 03:43 PM   #8
my little penguin
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Tagging DustyKat
09-10-2017, 05:11 PM   #9
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I don't mean to sound skeptical or ungrateful, but the positivity about Remicade makes me think you are being paid by the pharmasutical companies. What about those side effects, especially in children so young?
I kind of want to be offended by this statement, but I can totally understand why you might feel this way. In general we are pretty positive on Remicade on this board, but it's just because we've seen our really sick kids get better on it. We all started where you are, though. No one wants to give their kids any of the strong medicines that are used to treat IBD in kids.

I would encourage you to spend a few hours reading through threads on the "Parents of Kids with IBD" board. You'll see that you're not alone in your concern about Remicade, and you'll read a lot of stories that might help you with your decision-making.

My daughter was really sick at the time of her diagnosis, but we still tried to minimize the meds she received at first, wanting to try diet and lifestyle changes as much as possible. She kept getting sicker and sicker. (She was severely malnourished and her intestines began leaking into her abdomen, causing an abdominal infection.) She ended up needing Remicade, methotrexate, IV steroids, oral steroids, and NG-tube feeding to finally turn the corner and start getting better. She is now on just Remicade and methotrexate, and I still hate that she needs them. (We even tried to take her off methotrexate last year, but her IBD flared up again, so she's back on it.) But mostly I'm grateful that she's back to being a fairly healthy, happy kid and able to live a normal life now.

Of all the meds used to treat her IBD, biologics have had the least side effects for her thus far.

The thing that still sometimes keeps me up at night is the worry that the side effects will be some long-term thing, that she may get cancer or some other disease down the road due to years of suppressing her immune system. But without Remicade, my daughter would have almost certainly needed surgery to remove the perforated section of intestine, and I believe that repeated surgeries would be worse in the long run than the risk she faces from her treatment.

Good luck with whatever treatment you decide on. I know that none of these decisions are easy.
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
09-10-2017, 06:13 PM   #10
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I don't mean to sound skeptical or ungrateful, but the positivity about eek2: makes me think you are being paid by the pharmasutical companies. What about those side effects, especially in children so young?
You won't find that here AllaboutNyla, just a bunch of parents, and on the wider forum sufferers themselves, that have BTDT with every conceivable aspect of IBD. If someone speaks highly of a treatment it is because it is something that has brought their IBD under control and allowed them to get on with their life. Not to mention anyone coming to the forum for monetary gain is banned.

As has been said, the old standard approach was called stepping up, you start with the small fry and work your way through each class of drug until you reach the biologics. The problem with this approach is as each class of drug fails to do its job the inflammation and damage continues. Realising this, the newer approach is to start at the top thereby hopefully stopping the disease in its tracks much sooner and in doing so preventing or vastly extending the timeline of complications and the need for intrusive interventions like surgery. Also bear in mind that children tend to have a more complicated and severe aetiology of IBD which is why the move straight to biologics is recommended, particularly for children.

Not one parent here wants their child on these meds. We have all been where you are now and know the complete and utter, fear, helplessness, and heartbreak. As your username says, AllaboutNyla, it is all about Nyla and getting her back to the best place she can possibly be. IBD is a highly individual disease and what works for one won't necessarily work for another but here you can and will find others that have travelled a similar path and they will be able to offer support and take away the loneliness that you feel in thinking that no one else is experiencing this. My best advice is read, read and read some more. Ask questions to the cows come home and always bear in mind that there is no such thing as a silly question. In doing so you will become the best advocate you can possibly be for your lass.

I have two children with Crohn's located in the terminal ileum. My daughter went undiagnosed for an extended period of time and we came within 24 hours losing her. I have seen what untreated Crohn's can do and it is a place I never want to go to again. I know you are not in this situation and you know that treatment is necessary, all I am saying is don't underestimate this disease. Am I freaked out by the drugs and their side effects? Too bloody right I am! But not as scared as I am to go back to that place of untreated Crohn's or Crohn's that is not responding to treatment, that freaks me out even more.

I can see from your post that your little one is doing it tough just now, bless her. This disease can be so insidious that we sometimes forget what normal was for our kiddos. My advice would be to take the advice of the GI and that of the other parents here. Get treatment started so you can kick Crohn's in the butt and get your little girl back.
Mum of 2 kids with Crohn's.
09-11-2017, 09:30 AM   #11
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I agree with all of the above. And, as was said above, it was a very difficult decision for me to agree to add remicade to my son's treatment.

But, it's now been a number of years and he has been well. The only impact crohns now has on his life are the two hours he spends at infusions every six weeks. Otherwise, he feels well, plays sports and is almost finished university.

It's never easy. Ask lots of questions, read the success stories (and other stories) here and become as informed as possible. It doesn't change the risks, etc. but, by being better informed of your options, it will help in accepting your decision.
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-12-2017, 07:37 PM   #12
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Hi and welcome.
I'm so sorry to hear about your child.
It's so hard in the beginning.
My Grace was dx at 3 but is 8 now.
Remicade had been the closest drug that gave my child any quality of life.
My child has ibd and juvenile arthritis.
When she was dx the gi said his main goal was to keep her colon in thru high-school.
Her rheumatologist said her arthritis is aggressive.
His goal was to keep her knees from being replaced.
2.5 years later. .......
Ibd in remission!
Knees still original!

She's still has big issues but Remicade had been a huge help (just my non payed opinion).
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
09-14-2017, 09:16 AM   #13
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Have to agree with what others said and I fought against Remicade for many years, trying many different "lesser" meds to give my kiddo his quality of life back. I'm not saying they don't work but they did not in our case or caused other side effects. Or he lost too much weight, we were at one point at 1% for BMI and doctors were worried about other organ functions. He did not grow for several years due to inflammation and malabsorption.
We may sound like pharmacy reps because that scary drug gave us our children back and gave them a more normal life. My son has been in remission for nearly 4 years now. He was diagnosed at 10 and started Remicade at 14, now I'm terrified of it no longer working. If you use something that makes a difference in your life no matter what aspect whether it's even just making your stove top cleaner do you not tout its benefits. Not even Remicade works for everyone but sometimes at least in my case I just wanted my kiddo to have some kind of life not defined every moment by his disease and what he could and couldn't do because of symptoms or complications.
He is a freshman in college now and made it through high school in remission and we were even able to take a 13 day trip to Greece over the summer and he enjoyed a wide variety of food and activities without a hiccup from his Crohns.
Wishing you and your little one the best on this journey, it's not one I wish for anyone to make but please know that we are here for support and to answer any questions. We are like a family here and rejoice in each other's kids accomplishments and offer support in their struggles as well when sometimes it seems like no one else understands.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-17-2017, 09:12 PM   #14
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Our daughter was diagnosed at 3. She was, like your daughter, anemic and weak and it was so distressing to see her lay on the couch day after day watching her siblings play. We tried some lower level drugs before moving eventually to Humira (a similar drug to Remicade ) when she was just 4 years old.
Since then we've added another drug, Methotrexate, as well. They seem to work in combination with a strict diet to give her her life back.
I really struggled and still do with giving these meds to such a young child (6 now). But she wasn't getting any better before.
She is doing well now. I mostly just hope what we're doing keeps working because every time we need to change drugs or doses I agonize all over again.
Please beware of untreated disease.

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