Crohn's newbie ... feeling scared and frustrated

[FightingforJo]

Sorry this is going to be long. I am a new Crohn's parent and I have soooo much to ask!
My 12 year old daughter was diagnosed in January with Crohn's disease ... moderate to severe with perianal presentation and fistulas. After all of the blood work, scopes, and MRE and what her GI doc calls "mapping her system" she put her on Remicade. My understanding is that her perianal presentation and fistulas are what called for going to a biologic immediately.

Before starting the Remicade she was put on 40mg prednisone to "put out the fire". First dose Remicade was given the first week of February and it felt like a miracle! Within about 2 days my daughter was feeling 100% better! Eating again, gaining weight, playing soccer, laughing, acting like a normal 6th grade girl. That lasted about a month. She had a reaction to her 3rd dose (final loading dose) ... hot and flushed and tightness in her chest. We stopped the infusion and talked with her doctor over the weekend. They decided to try it again but this time with different pre-meds (now Tylenol and Benadryl along with an IV steroid). She had also been weened off the prednisone by this point.

3rd infusion "re-try" went great ... no reaction! However, she never felt better after the treatment like she did with the first two. We went back and forth, back and forth with her doctor over that month between infusions ... all the while DD slowly feeling worse. Her stomach pain starts to make her feel nauseous so she vomits off and on too. Also started her back on prednisone during this time ... which didn't make a difference in how she felt either.

4th infusion was two weeks ago. Remicade levels showed that she had no level in her system prior to that 4th infusion. (no antibodies though) Which answers to why she was not feeling good. No real answer as to WHY the 3rd infusion didn't "take" ... perhaps body was out of whack due to the reaction and subsequent 5 day delay for the 3rd loading dose???

Doctor decided that we need to be on a 4 week schedule and she wants to give her a higher dose (not sure the mg number ... I need to ask that) Seems that maybe she is just burning through and metabolizing the Remicade too quickly.

So we go for the 4th infusion on April 20 and again, Miracle!!! Daughter immediately starts to feel better the very next day. I see my girl back again! Until about two days ago. About 10 days after the last infusion and she starts to feel symptoms again. Stomach pain, loose BMs, not wanting to eat much, tired, quiet. Absolutely breaks my heart

I feel like we are 1 step forward and 2 steps back!
I feel like I don't know how to help her!
I feel like I am not asking the right questions of her GI doc!
I feel absolutely terrified that the Remicade is just not working and that we are going to have to move to Humira already ... and that after that we are out of med options.
I feel like I want to cry all the time, but I have to remain strong and positive for her.

I know in the scheme of things we are very early in the treatment of her disease and that we are still putting all the pieces of the puzzle together for her and what is going to work for her. And I feel very confident in her in doctor and GI team ... we are at one of the best children's hospitals in the country. But I just want my daughter back. I want her to be able to have a normal childhood and middle school experience

Have any of your kiddos experienced these ups and downs during the early phase of treatment?
What questions should I be asking .... is there a second type of oral med she could take that would help bridge the gap that Remicade is leaving?
Perhaps this is just our new normal and living with pain is just going to be her life?
We just felt so hopeful when Remicade was working ... that her symptoms were going to be in remission for years to come. And then we came crashing back down.

I appreciate any thoughts or advice you have.

 

[malorymug]

Hi. Hugs. You sound like you've been given great info and you are really strong. Yes, 1 step forward 2 steps back feels very familiar. Sorry.

It takes tweaking to get the meds right for most of these kids. Pediatric Crohns is more complex than adult crohns. It sounds like you have a great team and they are on top of it. My 15 yo boy is on a 4 week schedule of Remicade and it has been great for us. They explained that when inflammation is present, the body burns through the drug more quickly. So hopefully, once there is some healing and the inflammatory markers drop, the Remicade will last longer.

 

[pdx]

Sorry about your daughter's diagnosis, but welcome to the forum. My daughter was also diagnosed at age 12, and we also had big ups and downs for the first 3 or 4 months. My daughter is doing very well now, though, so hang in there! These first few months are very overwhelming.

Remicade often takes a while to start working, and sometimes other treatments are needed in the meantime. I wonder if much of your daughter's improvement after the first few infusions was actually due to the steroids (which sometimes don't work as well the 2nd time around).

It's great that your doctor checked Remicade levels; that's a good way to figure out if higher Remicade dosing is needed. Most of the kids on this forum have needed to increase dose and/or frequency to get a good response. (Like your daughter, my daughter had no detectable Remicade after her 4th dose.)

Even with a higher dose of Remicade, my daughter was still really sick. In the end, we needed to add budesonide (another type of steroid), methotrexate, and EEN to get her to the point where she started healing. After about 6 months, she finally was symptom free, and we were able to stop the budesonide and EN. A year later, she's doing great on just Remicade and methotrexate.

I would think about trying EEN. We never thought that my daughter would be able to do it, but it was easier than we thought it would be. It works as well or better than prednisone for most kids. It took away all my daughter's pain, gave her her energy back, helped her gain 20 pounds, and gave her body the nutrition it needed to start healing. My daughter used an NG tube, but many kids are able to drink their formula. If you're interested in it, there are a lot of good threads about it on this forum.

I hope your daughter starts feeling better soon!

 

[Maya142]

Have any of your kiddos experienced these ups and downs during the early phase of treatment?

Yes!! It does take some time to get to a good place. Remicade can take quite a while to fully kick in. The fact that you are already seeing improvement is great.

It takes time to find the right dose/frequency for your kiddo. It sounds like she just needs the dose tweaked, and perhaps that will do it. There are other options too -- going back on steroids while waiting for Remi to kick in is one. EEN is another.

What questions should I be asking .... is there a second type of oral med she could take that would help bridge the gap that Remicade is leaving?

Some GIs like to add immunomodulators to Remicade to prevent kids from building antibodies to Remicade. 6MP, Imuran and Methotrexate are commonly used. 6MP and Imuran are pills, Methotrexate can be a pill or a shot.

My girls both needed a combination of an immunomodulator + a biologic before they felt better. It also took time - about 4-5 infusions before they felt really GOOD. Plus, we had to up the dose from 5 mg/kg to 7.5 mg/kg to 10 mg/kg before the younger one's Crohn's was under control. We also added Entocort, which is a steroid (but has fewer side effects than Prednisone).

Perhaps this is just our new normal and living with pain is just going to be her life?

Things will get back to normal. The first six months are the hardest. And it's true - you will find a "new normal" that includes doctor's appointments, infusions, bloodwork and pills. But it should not include a kiddo that feels awful all the time. The goal is full mucosal healing and remission. Many kids do get there.

Hang in there!!

 

[Jenn]

Welcome and so sorry to hear about your daughter. The road is a rocky one. It's good she responded to remicade (normal now to try it first for her age, not just fistulizing IBD). It could be the steroid that boosted it. It's currently recommended to do a combo for about a year or so to jumpstart remission, that may be the boost she needs. It could just be remicade isn't effective enough for her, but another biologic, like Humira or Entyvio might work better, but your doctor will take you down that road one agonizing step at a time. So frustrating. Hang in there, it does get better!

 

[Maya142]

Wanted to add there are options besides Remicade and Humira. Cimzia and Simponi are other TNF inhibitors. Neither is approved yet for kids, but they are being used off-label. Entyvio is a completely different kind of biologic which is approved for Crohn's and UC in adults (but again, is used off-label for kids). Stelara is an IL 12 and 23 inhibitor which is in trials for Crohn's and should be approved soon. There are a couple of parents on here with kids on it who are doing very well.

Plus you have various different combinations with 6MP, Imuran and Methotrexate. Many kids do end up needing a combination of medications to get them into remission.

Hope your daughter starts feeling better SOON.

 

[CrohnsKidMom]

So sorry to hear about your daughter. You've been given great advice, and I would agree that things may just need some time and tweaking. There will be brighter days ahead!

 

[FightingforJo]

Trying to learn to navigate this board and how to reply to everyone

THANK YOU all for taking the time to read our story and reply with your thoughts and advice. While I am deeply sorry ANY of us are here ... it is helpful to know that there are other parents and kids out there riding the same roller coaster we are. It's so overwhelming emotionally for me and her dad ... physically and emotionally for her. Most days right now I feel like I am drowning in information and numbing emotions.

I have a call out to our GI office. If anything I just want it in her records that this dose of Remicade only "worked" for about 10 days or so. I think the more info they have, the more pieces of the puzzle they have to put together a complete picture of what she needs to get her into healing and remission. And I am also going to ask about either bumping the Prednisone back up (we are in a weening off right now, moving to just 10mg a day) or trying a different steroid all together for the short term.

Thanks for the info on perhaps asking about trying an immunomodulator with the Remicade. Our doctor has mentioned several other "next steps" and one was adding another medication so perhaps this is what she was meaning. I like the thought of as little of medicine as possible. But as with all of you I am sure, if I think too much about the possible side effects of all these meds and combo of meds I will go crazy. But I have come to the realization that the thought of my daughter not being able to live a normal childhood and what this disease could do to her scares me MUCH MUCH more!

I know the path is not going to be an easy one. And I know that we will have many bumps here in the early stages.

My motto right now is one day at a time!

 

[FightingforJo]

Wanted to add there are options besides Remicade and Humira. Cimzia and Simponi are other TNF inhibitors. Neither is approved yet for kids, but they are being used off-label. Entyvio is a completely different kind of biologic which is approved for Crohn's and UC in adults (but again, is used off-label for kids). Stelara is an IL 12 and 23 inhibitor which is in trials for Crohn's and should be approved soon. There are a couple of parents on here with kids on it who are doing very well.

I have read a lot about these other biologics, but that they were only for use in adults. Can you explain more about what "off label" means?

 

[Maya142]

I have read a lot about these other biologics, but that they were only for use in adults. Can you explain more about what "off label" means?

Off-label just means that they're not approved for that use or for that use in kids. So for example, Cimzia is approved for Crohn's, but not for Crohn's in kids (yet), so they would have to prescribe it off-label.

For quite a while, Humira was prescribed off-label -- it has only recently gotten approved for pediatric Crohn's.

Stelara, on the other hand, is only approved for Psoriasis and Psoriatic Arthritis in adults, so using it on an adult with Crohn's would also be considered "off-label."

It does sometimes require quite a lot of work for the doctor who is prescribing - they have to justify why it is necessary. We have used Simponi off-label for Crohn's and thankfully, our insurance was not too difficult about it.

This was a good explanation I found of off-label use:

Off-label use is the use of pharmaceutical drugs for an unapproved indication or in an unapproved age group, dosage, or route of administration.

 

[my little penguin]

Off label means the doc can prescribe the med even though it not official approved for pediatric crohns

When ds switched to humira
It was off label for pediatric crohns
But has since been approved

 

[mottiv]

Hi there,
We were and are going through the same ups and downs, and I understand your pain and frustration so much. I can't think of anything else but the health of my daughter. She is 15 now. Going through a major flare with a strong chance of surgery. She was diagnosed at age 7, started mild, but developed to be severe. We started with prednisone, and such, but that was not enough. Remicade with a god-send, but only for a year, her body wore it too quickly. Humira was horrible as she developed Psoriasis immediately. We switched to Methotrexate, the psoriasis vanished, but the Crohn is always there. She is wasted after every MTX injection (weekly) for a day or two. And now, she is in a major flare. Done MRI, realizing that she has a serious stricture in her terminal ileum and strong inflammation. She is now on Enteral Nutrition (drinking 6-8 cups a day) feeling a bit better. Tomorrow we start Prednisone for a month. Probably taking off the MTX, and potentially moving to Stelara.
As you can understand, we have gone and going through the same ups and downs. I truly wish that your daughter will feel better. We need to be strong for them.
Big hug.

 

[Tubes]

I to was 12 when I was diagnosed that was 22 years ago.Getting the right meds is the key.Dealing with this at any age is tough but the younger you are can make it that much worse.Hopefully your daughter gets it undercontrol and can enjoy her teen years.

 

[Worried mama]

My son was dx at 12, he's 14 now and we are still tweaking the meds. He is now on a 4 week remicade schedule after slowly moving to 6 weeks, then 5. Now 4. Added in mtx about 8 weeks ago. Added in overnight tube feeding for extra calories about 2 months ago...at first his levels would also show nothing left in his system...during that time, they also increased the dose. So there is much tweaking that can still be done. It's very frustrating...I want everything to work right away, I don't want to waste a single second but unfortunately, it doesn't work that way....sounds like you have a good dr and they are checking levels, etc....you'll figure it out, just may not be as soon as you'd like. Hang in there....what hospital are you at?

 

[FightingforJo]

So as with this disease, things change every day! Spoke to the doc last week and we decided to add MTX weekly injection to the repertoire. DD is just metabolizing the Remicade too quickly at this stage. We did a mid trough blood draw last Monday (just about 2 1/2 weeks after her infusion) and her levels were 0!!! Which as least makes sense for why she was feeling so very badly. Mouth and throat ulcers returned, belly pain, and vomiting (pain makes her nauseous so we get the vomiting too).

Her GI bumped up her infusion to last Thursday (so just over 3 weeks from her last one), upped her Remicade dose, and also gave her the first MTX shot. So far, so good. She is feeling a million times better. We are going to keep her on the higher dose of Remicade and every 4 weeks for now. And we are on the MTX injections for the "long term" with the goal to get DD into active and good remission of symptoms and then hopefully remove the MTX. But that won't be for probably at least a year.

It is very frustrating to watch the ups and downs. DD goes from feeling so well and to being a normal 12 year old ... and then overnight the bottom drops out and she is so sick she can't even stomach drinking a Boost. Absolutely heartbreaking.

At least I know this seems to be "normal" for this early stage of the game. And I feel optimistic after hearing everyone's experience that things will eventually (hopefully!) even out and we will be able to sustain remission.

Sorry I can't seem to figure out how to quote or "tag" people in my reply?
WorriedMama - we are at St. Louis Children's Hospital in MO. They have an amazing group of doctors and an awesome IBD center. I feel my DD is very well taken care of and her GI doc is very on top of things!

 

[Maya142]

Hope the MTX and the more frequent infusions work for her!!

Is she taking folic acid with the MTX? That can help prevent side effects.

 

[FightingforJo]

Yes, she has prescription folic acid to take. And they gave her zofran to take before the shot to help with any nausea.

Thanks for all the well wishes! I know we are all in the same boat ... and we just need to keep rowing, rowing, rowing