9 year old son just diagnosed with fistulizing Crohn's disease

[vogs]

Looking for help with deciding on the right medicine treatment for my son who is 9 with fistulizing Crohn's disease. New to this group and to Crohn's disease. My son is currently on oral Methotrexate once a week to try to heal the current fistula he has and control his inflammation which in turn will heal his peri rectal abscess.
I'm petrified to try Remicade infusions from all the side effects and black box warnings that it comes with, other serious infection risks including cancer! What are the thoughts on Methotrexate vs Remicade infusions.... Has anyone had the same fears???

 

[my little penguin]

Please join and post in the parents of Ibd kids forum here
http://www.crohnsforum.com/forumdisplay.php?f=49

Tagging
Clash
Crohnsinct
Mehita
Maya142
Tesscom


Ds was dx at age 7
Tried pentasa ,6-mp ,and Mtx
He started remicade at age 8
Switched to humira at age 9
Added Mtx at age 10 due to juvenile Spondyloarthritis
He is currently 12
So 4 plus years on biologics through elementary school no extra infections

I can say black box isn't very high on my worry list
By the numbers
Risk of death for kids under 14
By car 1 in 250
Drowning 1 in 1000 ( even if they can swim)
T cell lymphoma for any adult in the street 2 in 10,000

If you are biologics And ever on immunosuppressants ( Mtx ,6-mp, Aza)
6 in 10,000

We take risks everyday
Most are much higher than biologics to improve quality of life
Add in drug wise Steven Johnson syndrome can happen with most meds we give to infants but no one gives Tylenol or amoxiciilian a second thought


Biologics are scary
But under treated crohns is scarier
Finding a med that works for your kid is priceless
You may decide med xyz is the safest choice for your kid
But
The disease picks what works
Everyone is different

Good luck and hugs

 

[Maya142]

Hi and welcome!

I agree the risks with biologics are scary but at some point, disease becomes scarier. When my girls were put on them, I agonized and agonized for days about them. But as one of our doctors said, once you make the make the choice, you never look back. I can honestly say we never ever regretted putting them on biologics.

We have done both Remicade and Humira. Remicade was definitely easier - just an IV every so often. Infusions are done usually every 4-8 weeks, depending on what your kiddo needs. My daughters had no side effects at all with Remicade, besides some minor tiredness after the infusions. No increase in infections or anything like that.

The cancer risks are very very small. But the risks of untreated disease are large and also scary. Fistulizing Crohn's means your child already has severe disease.

Remicade works best for severe Crohn's. Methotrexate may help, but it may not be enough to control it. Some kids need both a biologic (like Remicade) and an immunomodulator (like MTX). Both my girls are on both. Incidentally, they both had more side effects with Methotrexate vs. Remicade.

This is a good presentation on the risks and benefits of IBD treatments: http://programs.rmei.com/CCFA139VL/

 

[vogs]

Thank you so much for your responses! It is helpful to have someone who is experienced to put things into perspective. Reminding that Crohns can be more damaging if not treated correctly or aggressively.
Not quite sure on how to navigate this site yet so I want to thank both of you who responded with similar experiences and positive outcomes with Remicade. Going to make a decision tomorrow and yes our family has been agonizing over it to the point of paralysis...so again everyone's input has been very helpful!

 

[stickman7755]

I want diagnosed til i was 24 and started remicade at 27. Since I had already gone through puberty the medicine had no long term effects, so far. However a child who has not gone through puberty yet, i suggest lighter medicines to prevent long term side effects.

Good luck and I wish the best for you and your son

 

[ronroush7]

Good luck.

 

[Clash]

My son has also been on both remicade at one time then humira. Each was in addition to methotrexate injections.

He was 15 when he started his CD journey. And was deemed severe at dx so he went straight on remicade.bhe has been on various schedules and doses of remicade with methotrexate injections. At one time, even high dose remicade. The same has occurred with humira different schedules (now weekly) plus methotrexate.

He's never had issues with the biologics other than preferring remicade over humira because the humira shots is painful.

For him, we haven't found a biologic or med yet that will control his CD. He has already required a small bowel resection even though at the time he was asymptomatic. CD can be insidiously silent.

The fear now of not finding a way to control this disease has far outweighed any fear I had about the biologics.

 

[polly13]

Hi there, hope your doing ok, this is a difficult decision for any parent, but I agree with everything MLP has said. My little girl Lucy is almost 8 and has been on biologics since she was 3 - we had no choice, she was first on remicade and then moved to Humira, I have four children and bizzarely she picks up less bugs than the other 3. Yes T Cell Lymphoma is very scary but so is untreated Crohn's disease. At the end of the day you have to do what is right for your child and when my husband and I were faced with the same decision we agonised before realizing that if Lucy was going to have any quality of life at all , we had to allow the biologics. I wish you the best and please trust your own insticts on this and you will make the right decision for your child - whatever that will be.

 

[caretothepeople]

I know you said you were going to the doctor again soon, so passing along some resources for you.

This is a list of questions to ask about medications. It's general, but a good tool to even print out a take to the appointment so you can ask questions about his medication options and have a place to write down information: http://psychcentral.com/lib/questions-for-your-doctor-about-medications/

CCFA has many resources for parents including this guide: http://www.ccfa.org/resources/guide-for-parents.html

I noticed you're in Colorado. Depending on where you are the CCFA may have a local chapter. The Rocky Mountain chapter has listings for docs at the Children's Hospital: http://www.ccfa.org/chapters/rockymountain/about/

 

[vogs]

Thank you! Yes I live in Colorado and my son is currently at Children's Hospital, admitted again on Saturday for rectal pain and new fissures.
Drs have already made their rounds to the room and have asked what our decision is.... Sleepless night for me as I would wake up to write my questions down as I thought of them! Many are similar to your listed site, some new ones so thank you.
I am anticipating today to be a rough day both for my son and for husband and I emotionally as we have decided to give the Remicade a try, so his first infusion will be later today. It was either that or be discharged and be home waiting for the next flare/complication and readmission. Half of his summer has been already spent here at Children's and I hate that....seeing him in so much pain from his abscess and fissures and now vomiting from multiple antibiotics has been exhausting. Hoping the infusion goes well and my pit in my stomach diminishes......

 

[my little penguin]

The infusions are harder on you than them
I was physically ill when ds started remicade but after the third infusion it got better
Each new med is like that but watching them work is like magic

 

[Clash]

I know coming to grips with the meds can be difficult especially when they had you a pamphlet with scary side effects. But these meds can improve QOL and we take risks for our kids QOL everyday.

I hope the infusion goes well. My son's first remicade I fusion was at his ped GIs IV lab and the nurses cater to their every whim. Big flat screen, DVDs, Wii, Xbox live, snacks, drinks, blankets etc. I'm out pacing the floor and my son thought it was the best day! His symptoms abated after that first infusion. He went from unable to eat, severe pain and in bed all the time to wanting to stop at for a meal and a trip to the mall on the way home. It works really quickly for some. Unfortunately it wasn't enough to keep his disease at bay but it did give him QOL back.(To note: for most kids remicade works really well my son's non response to these meds is not indicative of most!)

 

[vogs]

Thank you! Getting his first infusion now and has slept through it from the pre dose of Benadryl. Vitals good and no reaction yet
Next one in 2 weeks. Now to hope for fistula healing, wound healing and taming his insides!! He will still be on Methotrexate for now too I guess, lots of meds
Happy to be with this group!

 

[Maya142]

Really hope it's his miracle drug!! It actually makes a lot of sense to start these medications BEFORE puberty, so he gains and grows like a normal kiddo.

I was also very nervous at our first infusion. My daughter napped and watched TV and was fussed over by the nurses. Both my girls quite liked their infusions - they got a chance to miss school and watch TV for half the day ! They were tired after, but I think that was more from the Benadryl than the Remicade.

Check out the Parent forum. Lots of parents there and we'd love to hear updates as your son gets better !!