New diagnosis for 15 year old son

[blbjmyers123]

My 15 year old son was just diagnosed two weeks ago with Crohn's Disease after going to see a doctor for a perianal abscess that wouldn't heal. Turned out to be two fistulas. I'm totally in shock. He hasn't had any other symptoms of this disease, and it does not run anywhere in our family. He had an MRI right away which showed a thickening of the intestine walls, and they ran a bunch of blood tests. He had surgery last Friday to put in a Seton drain and had a colonoscopy and endoscopy to do biopsies, and there was some inflammation in the lower intestine. The GI doctor we saw wants to start him on Humira and Methotrexate right away, like tomorrow. I'm so overwhelmed right now with all of this, everything has happened so fast, and with the basic research on these drugs I've been able to do, I'm terrified of putting him on Humira. The chance of developing terminal lymphoma to me outweighs the benefits of putting him on a drug to treat something he's never had any symptoms of. If he does have Crohn's, and is left untreated, will things get worse? I hear people talking about being unable to get nutrition from food, stomach pain, diarrhea, joint pain, fevers, but we've had nothing like that. Am I wrong to be concerned about the side effects of this drug? Sorry if I sound uninformed about this, but I am! We live in Alaska, and we only have three pediatric GI docs here, all in the same clinic, so I can't easily get a second opinion and don't really have many resources here. Thanks so much.

 

[Caitlyn336]

I had my first flare of crohns when I was just 13, it was misdiagnosed. All my symptoms were treated as ulcers and I had no other problems. I never had another flare or more symptoms until the stress of an upcoming wedding at 19. If he is having no other symptoms I would do research on diet or natural alternatives to see if you could keep his inflammation down that way.
The complication being that humira and methotrexate may help the fistulas heal if the Seton placement does not do it. With no symptoms of the disease the side effects of the medications can seem great.

 

[my little penguin]

T cell lymphoma (fatal kind ) is from
Biologic plus 6-mp or aza
NOT mtx(methotrexate)
GI no longer use aza or 6-mp plus biologics for kiddos due that risk
They add mtx instead

Humira by itself does not have that risk

Crohns left in treated can be fatal
More than one kiddo was dx in the icu here

Ds started biologics at age 8
And isnow 13
He currently is on humira plus mtx and has been for almost 5 years

Things to think about
Risk wise

Kids 1-14 in the US have a risk of death
By car 1 in 250
By drowning 1 in 1000

Average person on the street without ibd
T cell lymphoma 2 in 10000

Kiddo on both 6-mp/aza and biologics
6 in 10000

Leaving inflammation untreated risk removal of the small intestine
If that gets too short - no nutrients can be asborbed and your dead
Too many inflammation cycles changes cell which results in cancer of the bowel
Too many inflammation cycles
Leads to scar tissue which means risk of obstruction (medical emergency can result in death )
Strictures-narrowing of the bowel which would need removed

Odds of surgery in kids wothin 5 years prior to biologics was 75% even with aza or 6-mp

Odds with biologics 30-40%


If a lot to take in
I cried for days
And only wanted diet to fix my kid

I go wth the meds
And hope they work to keep his intestine as healthy as possible for as long as possible

 

[Jmrogers4]

I have a kiddo diagnosed at 10 he is 18 now who does not have a lot of visible symptoms either, at least in our case I feel it is almost more tricky to treat as it's hard to tell what damage is being done without those outward symptoms and are we doing enough to treat so that he doesn't end up with life altering complications.
He started out on Imuran and spent several years on it with us thinking all is well but it turned out it was not controlling inflammation and we had delayed puberty and growth as a result.
He is currently on Remicade as a monotherapy (has been for nearly 4 years) and doing extremely well, in fact, he just had MRE which showed no inflammation, no thickening and otherwise unremarkable. We were talking surgery 4 years ago due to thickening at terminal ileum and lack of growth puberty. Remicade allowed him to achieve complete remission and catch up on all the development he was delayed.
It's a tough disease to swallow and it's hard to think that this is something they have to deal with for the rest of their life. We tried all the diets, natural supplements none of them worked well enough for us and for him to have a "normal life"
I can tell you from our experience all these little things that were symptoms but since they become normal for him we didn't notice until they were gone. He said to me after a few months on Remicade that he didn't realize this is what normal was supposed to feel like.
I live in Idaho and we only have 1 pediatric GI clinic as well although we have 4 GI's :ylol: I know others on here have been able to send their kids labs/scopes/etc. to another hospital for a second opinion.

 

[Jenn]

Sounds so similar to my son, he was 8 then. We've had success with Humira alone, but have done combo (before and just restarted), and combo with MTX is recommended to induce remission. Approaching it strongly at first is recommended for kids, who need to still grow. I hear you with the risk concern, terrifying, but overall less risky than everything else in life, really - including untreated or ineffectively-treating the disease, even though it doesn't seem like it.

It is overwhelming, hang in there. And best of luck it works for him and quickly!

 

[Guerrero]

Sorry for your son blbjmyers.

As the disease seems quite aggressive (he already build fistulas and thickening) i think personally humira could be a very good option for him to start with.

New studies now demonstrate the sooner you start with strong therapy like biologics the better outcomes you have in the longer term.

Side effects declared with humira are a lot, but its just because they had to reports all the symptoms people had during the studies, which doesnt mean at all they were implied by the medicine. I was on humira for 4 years and had almost no side effects except a drier skin..

I'd also recommend in parallel to humira and enteral nutrition diet as it appear to be as effective as steroid on children.

Dont worry too much as thank to new therapies the outcomes for crohn's disease is much better than before and your son may have years of remission with biologic treatments.

 

[Maya142]

Fistulizing disease already means that his Crohn's is severe unfortunately. If you don't treat it, it is likely to get worse.

I agree that the drugs are scary. When my daughter's doc recommended biologics, I was shocked. My husband and I agonized and worried and I spent many sleepless nights thinking of the side effects. Eventually we agreed to try Humira and it was miraculous for her! No side effects at all!!

Then my second kiddo was diagnosed, and I agonized all over again, even though I knew how much Humira was helping my older daughter! We eventually put her on Humira too and it took a while to work, but when it did, it was like magic.

At some point the disease became scarier than the drugs, for us. I can honestly say we have never regretted putting our daughters on these drugs - in fact, I only regret taking so long to try them. We have never had side effects with any biologics and it's been 7-8 years since the girls started them.

This is a great presentation that talks about the risks and benefits of IBD meds: http://programs.rmei.com/CCFA139VL/

The goal is to prevent damage to his intestines. You don't want to be dealing with even more complications - like strictures or more abscesses and you need his fistulae to heal. The best chance at preventing further complications is aggressive treatment - usually a biologic and an immunomodulator like MTX.

The risk for the very rare type of cancer (T cell lymphoma) that tends to affect teenage/young adult males is associated with Imuran/6MP and NOT with MTX. Pediatric GIs have stopped using Imuran and 6MP as much for that reason (though it is very, very rare), especially in combination with biologics. MTX is being used more and more and it is safe and effective. My older daughter is currently on it with Humira.

Good luck with your decision. The time following diagnosis is overwhelming and scary but it will get better.

 

[blbjmyers123]

Thanks all, for the info. I'm still feeling lost but am learning more every day. I just found out that our insurance has at least for now rejected our request for the Humira, but the doctor's office wants to start him on MTX now while they appeal with the insurance (they think he'd end up on Humira eventually anyway since his main issue is the fistulas). I feel like such a worrier - a cancer drug, a chemo drug to treat this? It's all just so frightening to me. I don't even like to take an aspirin for any ache or pain, and now I have to think about giving my child something that will give him nausea and make him not feel well...

Thanks again everyone, even for listening. It helps.

 

[Maya142]

Few things - MTX is given in MUCH tinier doses for autoimmune diseases. In much higher doses, it's used as chemotherapy. But the doses our kids take, in comparison, are very, very small.

MANY kids have NO side effects at all with MTX. It really varies and is very individual. My older daughter has been on it for years without issues. She takes 15 mg by injection every Friday night and is a little tired the next day, but that's it. If she is nauseous, she is allowed to take Zofran, but she almost never needs it.

Folic acid is given to minimize the side effects. Usually you start at 1 mg daily. If he has side effects, the dose is usually increased and that will help.

If nausea is an issue, then Zofran can be given before the injection/pills and the next day.

Most parents do the shot/pills on a Friday/Saturday so the kiddo can rest the next day if they need to.

Some kids do better with the shot (mine did) and others do better with the pills. The shot is a very tiny needle and according to my girls, it isn't really painful. Just a little poke.

Try not to panic. It's a very safe drug and has been used for many, many years. It is very scary in the beginning, but it will become your "new normal."

I'm surprised they rejected Humira, given the fistulas. Your doctor's office will be able to appeal. It is approved for kids now, so not sure why it would be rejected... But you can appeal, and hopefully it will work.

I wonder if they want him to try Remicade first instead? That is often given first to kids with IBD though both Remicade and Humira are approved for kids now. That would be an infusion every 6-8 weeks (can be given up to every 4 weeks).

 

[bethhall3434]

Thanks all, for the info. I'm still feeling lost but am learning more every day. I just found out that our insurance has at least for now rejected our request for the Humira, but the doctor's office wants to start him on MTX now while they appeal with the insurance (they think he'd end up on Humira eventually anyway since his main issue is the fistulas). I feel like such a worrier - a cancer drug, a chemo drug to treat this? It's all just so frightening to me. I don't even like to take an aspirin for any ache or pain, and now I have to think about giving my child something that will give him nausea and make him not feel well...

Thanks again everyone, even for listening. It helps.

My daughter just started MTX last Friday. So far so good. She has yet to be prescribed a biologic, but now I know that's what will probably happen on the future.

I was so nervous about the MTX, I waited 2 weeks to start because I wanted to do more research. I agree with Maya- the meds are scary, but the disease is even more scary.

I'll keep you in he loop on how my little Emma is handling the MTX. Good luck with everything!

 

[Maya142]

It is terrifying to put our kids on these drugs. Both my girls have a form of arthritis (younger one also has IBD) and we watched them get sicker and sicker before we opted for biologics. They went from happy, active kids (who played soccer, loved school, worked on the school newspaper) to being unable to walk or sleep. They were in pain all the time. There were lots of tears. They missed a lot of school.

And yes, we did this with BOTH girls -- even after watching my older one improve so much with biologics :ybatty:, we waited before putting the younger one on them, hoping she could manage with "milder" meds.

Once we put them one biologics, we got our happy, smiley girls back. Both went back to playing soccer. Both went back to participating in school fully. They could sleep through the night again. The difference was amazing.

So when my younger daughter was diagnosed with Crohn's, 4 year after the juvenile arthritis diagnosis, we did not hesitate. We chose to treat it very aggressively - Remicade and Methotrexate. We did not want her to face more complications in the future.

She had been on a biologic already, but not one that treated Crohn's, so we switched. Within 8 months, her scopes were remarkably better. Her colon, which had ulcers through it, looked perfect. Still some mild inflammation in her terminal ileum, but an amazing improvement.

Now I'm just grateful that biologics exist and we have access to them.

 

[blbjmyers123]

So I just found out yesterday that we've been approved after appeal for Humira, and our first dose will be given today at the doctor's office. We've also gotten our Rx for MTX, Zofran and folic acid. I'm leaning on my faith and hoping that this is all part of the plan for my son's life and that I'm doing the right thing without exploring any other options for treatment. Thanks again everyone for sharing your stories and helping me understand this disease. Happy Friday!

 

[my little penguin]

Good luck with humira today !!!!
The first two doses are the worst
4 shots
Then 2 shots
Ask about adding lidocaine to the humira syringe
This helps it burn less

 

[pdx]

I hope it goes well today and that your son responds quickly to his treatment!

 

[Jenn]

Hope it went well. It's a shocker in how much it hurts. We ice for 20 min beforehand while letting the syringe warm up. And syringe, not epipen to go a bit slower. Good luck!

 

[Maya142]

Definitely use the syringe!! We used the pen for years because my girls did not want to see the needle. I kept reading on here that the syringe was less painful and kept trying to convince my older daughter (who was still on Humira at that point). Eventually, she agreed and was shocked at how much less painful the syringe was!!

The pen injects the medication (which BURNS) very fast and that really hurts. It also makes a loud clicking noise which can be a little surprising. And the needle comes down very quickly too.

My daughter could not believe she had dealt with the pen for so many years when there was a better option out there :ybatty:!

 

[blbjmyers123]

So we've gotten through our first dose of Humira and two weeks of Methotrexate. It's gone remarkably well. Yes, he said the 4 doses were painful, he teared up a little but got through it fine. And little to no nausea from the Methotrexate. Thanks again everyone for all of the tips and tricks!

 

[Maya142]

Way to go!!! Hope he starts feeling better SOON!

 

[my little penguin]

Fingers crossed it kicks in soon

 

[kimmidwife]

Hope he gets feeling better fast!