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Hi - I have an 8 y.o. with newly diagnosed Crohns who was given 3 options for treatment today:  Injection (Humira); Infusion (Remicade); and Entertal tube feedings.  Got to say I'm totally confused - read info online regarding the above meds and wasn't totally unhappy - when I told the Ped/GI this, they shut me down as their recommendation is for the Remicade as the treatment of choice for her as she is moderate to severe.  I'm looking for info and other options from anyone out there.  Please help!  Thanks so much - mmtom

 Reply posted for countryws.

Oh how I can empathize and relate.  I faced this same decision for my 15 year old daughter 1 month ago.  My daughter was diagnosed a little over a year ago and has been struggling on the 6MP.  Since January she has had two surgeries for an abscess/fistula's and the doctor said that the 6MP wasn't helping and basically told us that Remicade or Humara are our only options.  After many nights of reading and agonizing over the decision, my husband and after taking her to a hyperbolic (which has helped her ilium) chamber every day for an hour for over a month, we didn't feel like we had a choice because another fistula broke through the skin on its own so she went for her first treatment of Remicade over 3 weeks ago while they kept her on 6MP and the second day said she felt more normal than she has since she was diagnosed.  We went 2 weeks later (last week) for the 2nd treatment and she is feeling so much relief already.  She said she feels NORMAL!   As scary as these drugs are because we don't know that much about the long term affects, her quality of life is so much better.  I feel like Crohn's disease is a puzzle without any pieces.   No two cases are the same.  But as a mother, it's been so hard for me to wrap my arms around all the drugs she has had to take and she is so very young and not as young as your daughter.      Two days ago we got a call from the doctor that her liver enzymes were elevated so they took her off the 6MP.   If you ever want to talk, I would be happy to give you my contact information.

 Reply posted for mmtom.

Oh how I can empathize and relate.  I faced this same decision for my 15 year old daughter 1 month ago.  My daughter was diagnosed a little over a year ago and has been struggling on the 6MP.  Since January she has had two surgeries for an abscess/fistula's and the doctor said that the 6MP wasn't helping and basically told us that Remicade or Humara are our only options.  After many nights of reading and agonizing over the decision, my husband and after taking her to a hyperbolic (which has helped her ilium) chamber every day for an hour for over a month, we didn't feel like we had a choice because another fistula broke through the skin on its own so she went for her first treatment of Remicade over 3 weeks ago while they kept her on 6MP and the second day said she felt more normal than she has since she was diagnosed.  We went 2 weeks later (last week) for the 2nd treatment and she is feeling so much relief already.  She said she feels NORMAL!   As scary as these drugs are because we don't know that much about the long term affects, her quality of life is so much better.  I feel like Crohn's disease is a puzzle without any pieces.   No two cases are the same.  But as a mother, it's been so hard for me to wrap my arms around all the drugs she has had to take and she is so very young and not as young as your daughter. 

  

 Reply posted for mmtom.

I am too a mother of an 8 year old who was diagnosed with Crohn's in Feb. after her scopes.  She has been labeled as constipated for 2 years before she started seeing blood in her stools.  Today we went for our second opinion and just like you got the news that her Crohn's was actaully worse than I had orginally thought and the Dr. recommended Remicade.  Apparently there is a portion of the GI track that the 6 MP's will not heal but Remicade will, and my daughter is affected there.  I am so nervous about the possible side effects of this drug but feel that there is no other option.  Just like any Mom I want her to live the most "normal" life possible but I also want to protect her future.  I have read the side effects of Remicade and am VERY concerned about cancer later on in life.  I am so overwhelmed and ready to have a mental break down!

I sympathize with your situation greatly!  How is your daughter doing on the Remicade now? 

 Reply posted for mmtom.

Well Mairead started her first dose of Remicade yesterday with no side effects noted either before, during, or after treatment - so far, so good - keep your fingers crossed for us that this continues to be the case - Thank you to everyone who has been so supportive on this forum - I appreciate it!  Margie T.

 Reply posted for alanschachter.

Thanks for the info, Alan, I know what you mean about the immunosuppressive agents - I'm not happy about that particular component either - I'll look further into the info you sent - Again, thanks so much!

 Reply posted for alanschachter.

Hey Alan - I think I'm missing something from your message - what safer way are your referring to - the enteral tube feeds, diet? - I got to tell you in listening to the 2nd Peds/GI's regarding her condition and seeing her labs and the story that they tell - we have one sick little girl who is able to tolerate a whole lot more than we could've even imaged - I'm all for safe, but I'm also for what is going to heal that inflammation and make it a little easier for her to have a more "normal" life - right now she is feeling so limited in what she can and can't eat because a lot of the foods she likes seem to be the ones that irritate her the most - she has a skin tag that gets so irritated and inflammed that I wonder how she can tolerate it, but she does - I have to say though we've had 2 good days where she looks relatively healthy and is acting like a normal 8 y.o. - that is a positive for me - could this be the combination of the Pentasa and Metronidazole working after two weeks? - I don't know for sure, but I also don't want to feel like I'm hindering her from getting better if there is an answer out there - I'm not expert in anything, so I've got to trust that the physicians we've seen know what they are talking about and will try to take the best care of her as they can - I'm hoping for the best, but understand the pitfalls and wish that I could find another way around, but sometimes you have to go through the mud to get to the sunny side of the street and a better way - As always, thanks - M

 Reply posted for fewmccullough.

I'm so sorry to hear that the "standard" meds didn't work - We have actually decided to start the Remicade this coming Thursday - I have to hope that this is the answer for her - she decided what she wanted to do - she didn't want the limitations of the enteral tube feeds and didn't want to even attempt the Humira because it is a shot - she chose where she'd like to be treated - sounds crazy, right?? However, she knows how she feels and I have to believe that she needs to be where she feels she has the most control and letting her decide gives her some of that - after our 2nd opinion on Tuesday, it seemed like our choices had completely narrowed to the Remicade - I also received her labs & reports - I can't believe how sick she actually is and can still be functioning - so this is where we are now and we'd like to get her treatment started to hopefully get her on the road to better health.

Having to start a new medication that isn't even approved for kids is extremely scary for you and your family - It's hard to be on the cutting edge of medicine, but I hope that for you and your family this winds up being the answer you need - which could also lead to being the answer for others as well - try to stay strong and good luck!  Keep us all posted on how things work out.

 Reply posted for mmtom.

I sympathize, it is soooo confusing. My 8 year old was diagnosed with crohn's when she was 5, symptoms since 3. We've been thru prednisone, remicade, humira and soon to be on cimzia (if the insurance will approve it). Remicade did work. It took almost a year but she was as close to normal as she'd been in years. Then she started building antibodies to it, so they took her off (bummer). She has been on humira 6 months and gotten worse quickly. Scopes last week show major crohns. Want to try cimzia. It scares me, it isn't even approved for children. I'm scared too. 

 Reply posted for mmtom.

I sympathize, it is soooo confusing. My 8 year old was diagnosed with crohn's when she was 5, symptoms since 3. We've been thru prednisone, remicade, humira and soon to be on cimzia (if the insurance will approve it). Remicade did work. It took almost a year but she was as close to normal as she'd been in years. Then she started building antibodies to it, so they took her off (bummer). She has been on humira 6 months and gotten worse quickly. Scopes last week show major crohns. Want to try cimzia. It scares me, it isn't even approved for children. I'm scared too. 

 Reply posted for AZMOM.

Hey Claire's Mom - Thanks so much - it's nice to know that I have someplace to turn when it feels like I'm so lost.

Good luck with the scopes - here's hoping it is nothing but good news!

Thanks - Margie T.

 Reply posted for mmtom.

Hey......I know that wasn't the news you were hoping for.  But, sometimes, there is something to be said for confirmation.  At least it makes the path "clearer" in your head.  These little bodies have a long way to go!  That's what I keep thinking....

My daughter is scheduled for scopes in April - I'm alternately dreading and looking forward to seeing how things look from the inside.....  But again, information helps decision making - doesn't it??

Lots of love - please keep us posted!

Claire's Mom

 Reply posted for saddenmom14.

Thanks for the info - we had our 2nd opinion consult yesterday, and ufortunately, they didn't tell us anything different than our original Peds/GI specialists - if anything they were much more direct and to the point about the seriousness of our daughter's situation.  So, now we are at the decision process and are probably going to start with the "big guns" of Remicade.  Not my first choice by any stretch of the imagination, but I also don't want to continue to let this situation fester for much longer.  I already know that each day that goes by causes her more damage to her small bowel (of which she has quite a bit of disease as well as her ileum) and would like to not progress to surgery if needed.  I have to have some faith that the decisions we are making will be in her best interest in getting her to better health now and down the road.

I can't imagine doing this with a toddler - I keep thinking I have it hard, but you and others like you are much tougher than me!  Good luck with continued good success with the meds for your son and hope that he gains weight and continues to do well!  Again, thanks for the info! 

 Reply posted for mmtom.

My son was diagonesed in Sept of 2009. I did not let them give him meds until Nov.09'. They started with 5Asa's that took him back to ground Zero! Then they started on him on 4ml's of Predislone. In March of  2010 He began taking Flagyl 2ml's. Well now its 2011 and he is still on steriods, has not grown very much or gained weight he has been 25 pounds for the last two yrs. Three weeks ago they started him on Imuran and they are giving him perractin as an appetite stimuliant along with .5mls of Predislone! He has mood swings! but other than that he's your typical toddler! BUSY< BUSY< BUSY!!!!!!!!!!

 Reply posted for ecsmit.

Thanks for the info - will look into the suggested reading!

 Reply posted for mmtom.

My now 8-yr-old has been on enteral nutrition and no meds for almost a year.  I wish he would have started on this treatment, imuran did not work for him...he had to do 2 courses of steroids during which time he didn't grow at all (each course takes about 3 months to wean off)...

Enteral nutrition is considered first line treatment for pediatric Crohn's Disease in Europe, Japan and Canada.  Check out Get to Remission with Enteral Nutrition by Margaret Oppenheimer, a great book that covers everything!

 Reply posted for Lizzies Mom.

Thanks - I appreciate the support!

 Reply posted for mmtom.

Glad to hear you are going for a second / maybe third opinion.  We did the same....unfortunately the diagnosis didn't change.   Our doc is the best in the area and was spot on with the diagnosis and treatment.  I was then able to accept our situation and move on with educating myself and beginning the task of figuring out her "trigger foods". 

There are lots of families in the same situation and we are all here to help.  Let us know how things are moving ahead.  It is a good sign that she isn't showing any signs of being sick, especially beginning meds.   I usually can tell from my daughter's appetite, activity level, bathroom trips, etc. how things are going. 

Keep you chin up and be strong brighter days are ahead. 

Lizzies Mom

 Reply posted for CarolM.

Thanks - Right now I think I'm on autopilot - checking websites, looking for alternative diagnoses, treatments, etc., that I haven't had time to really process things completely - I've had my small bouts here and there, but I've been trying to keep things in check.  Right now she is taking the Flagyl and Pentasa, but only as a temporary measure until we make a final decision regarding her treatment.  I've gotten some positive feedback from other parents who've taken the Humira and the Remicade, which has made me a little more hopeful.  Also, both my PED/GI's have Crohns and are currently on treatment with the Humira with success.  Also, from what I'm understanding from others in this position as well as the PED/GI, is that the school of thought in the medical community is to start at the top and work their way out or down from there.  A lot of people have grown children who didn't even have some of these options when their kids were diagnosed 10, 15, 20 years ago, and are now on treatment and wished they'd had this available to them at initial diagnosis.  I've also heard from several people (mostly adults) who've been remission or have been able to control their disease successfully.  I'm hopeful, but will deal with whatever comes down the pike.  Again, thanks for the advice and encouragement - glad to know that there are people out there who are in the same position and know what I'm going through!

 Reply posted for mmtom.

Hello,  I am new to this website although not new to Crohns.  I too am the mom of crohns and wife of crohns.  I am sorry your child is going through all of this and sorry for you to have to go through it to.  I think all the comments given to you are correct, its so hard to know what to do when it is your child.  You , however are on the right track to get second opionions.  You need to find a doctor that works well with you and your child in this disease and I suggest your second opionion be the top gun in this field in your area even if it means an hour drive, he/she will be second opinion you wont always have to go there.  I dont know your childs severity but it seems jumping to injections/infusions before trying pentasa or 6mp is severe.  6mp worked well for my son until he decided he needed to go off it to join his friends partying big mistake.  He is now on humira and doing well, although it is a painful injection. During a flare up He and my daughter have both had prednisone/or enotorcot therapy. in an acute flare up the prednisone really helps fast.  As far as long term side effects they are so scary however, your doctors will monitor your child closely and hopefully these drugs will give a quality of life for your child that will enable a healthy happy lifestyle.  I wish both of you the best , be strong mom.  Carol.  ps crying in the shower helps that way they dont see you upset. 

 Reply posted for Lizzies Mom.

Thanks for the info - it all just seems so overwhelming.  I have had contact with some other people outside this forum who have had good experience with both Remicade and Humira with their kids as well as being pretty fortunate having 2 Peds/GI docs who have Crohns and have been through most of the treatments that are available.  I'd like to REALLY avoid the surgery, if at all possible, but only time will tell where things wind up and we'll deal with that if it comes up as well.  Right now we are scheduled for a 2nd opinion and possibly a 3rd opinion if we can get it within a reasonable amount of time.  I've been reading as much info as possible - including looking at misdiagnosis info regarding the Crohns - grasping at straws really - I have a hard time reconciling myself with how sick she - according to the docs - to how she behaves and acts - she rarely complains, the meds right now have lowered the amount of bowel movements, and she doesn't appear or act sick.  So, we'll see what the next group tells us and make a decision from there.

Again, thanks so much - I appreciate the support from you and the others who have posted a comment.  Glad to know there are people to reach out to if there's a problem or a question.

 Reply posted for mmtom.

This forum is a great source of information as well as the internet, though sometimes it gets waaay too overwhelming.   My daughter was young too (4) when she was diagnosed, so I know how overwhelming it can be, especially right after diagnosis.   It seems like your docs are going to the "big gun" meds VERY quickly.    My suggestion is to get a second opinion.   You have nothing to lose and a lot to gain.  If for anything, for peace of mind.  Some people have tried every option out there, various lower tier meds, in combo w/dietary changes, have had surgeries, and have no other option left.   I would personally leave no stone unturned. 

I do know some wish they had gone on Remicade sooner because they feel it gave them their life back and are living pain/symptom free.   Educate yourself:   read everything you can get your hands on. I saw changes in my daughter by just making a few dietary changes.  It turned out we (as a family) were consuming WAAY too much fiber for her "special belly". 

Good, luck in your journey, the roller coaster will eventually slow down and "normalcy" will come in time.  

Lizzies Mom 

 Reply posted for AZMOM.

Again, thanks so much!

 Reply posted for mmtom.

You are SO welcome.  I should have mentioned that the diet was temporary.  She is back to a healthy (as healthy as I can get it anyway :-)), normal diet.  The only thing she won't eat - and she figured this out on her own - is popcorn. 

You'll get there - I promise.  I guess I try to be a calming influence on this forum when I can because there is so much information out there when you are new.  And lots of strong ideas.  Everyone wants to help but it can almost be too much! 

I can tell you'll be a great advocate for your daughter.  Let us know how she's doing!

Claire's Mom

 Reply posted for AZMOM.

Thanks so much for the info and great advice - I'll definitely keep my options open and ask as many questions as possible.  I've had previous experience with making tough life decisions in the past with several family members who have now passed away, however, it's much more difficult trying to do this for my daughter.  But I'm heartened to hear that your daughter has had success with medication and dietary changes.  It gives me some hope and comfort that we will make it through just like everyone else!  So thanks so much!

 Reply posted for mmtom.

You aren't naive.  It is a tough course to chart.  What works for some children, doesn't work for others.  My daughter was diagnosed just before her 6th brithday and will be 8 in April. 

Yes, ask questions!  Make sure you are comfortable with the doctor.  As great as forums are and information from the internet, your daughter's treatment is ultimately between you, her and the doctor.  That's why I say be sure you are with someone you trust.  

Remicade has been such a blessing for some, and not for others.  Similarly, some profess that dietary changes make the difference, while others don't respond to those changes. 

For us, 6MP (mercaptopurine) has been able to keep Claire in remission.  At the beginning, it was trial & error with steroids, pentasa, 6MP.  We also followed a low-fiber low-residue diet until the bleeding subsided.  It took longer than we expected but she came completely off the steroids (thank goodness!  we hated steroids) and has just been taking 6MP. 

I will add that our choices were restricted by another medical problem that made the TNF blockers (Remicade, Humira, etc) not options for us.  I would certainly have considered them if they were.

Please let us know what we can do to support you.  It is A LOT to take in. 

Hugs, 

Claire's Mom 

 Reply posted for alanschachter.

To me, and I may be naive, it looks like we don't have a whole lot of choices with regards to treating this disease.  It seems like there are limited options and at best most drugs, diets, etc., work for the short-term, but not necessarily for the the long haul and then where does that leave you since I am assuming (and hoping) that my 8 y.o. has a long life ahead of her and unfortunately this is now part of her life.  I'm still new to all this, so I'm still trying to wrap my head around the disease, the treatment options, the long-term, and what will be best for her.  Thank you for listening and for your help - I do appreciate it!

 Reply posted for Mom2.

Thanks for the info - is your son still on Remicade and how is he doing?  Any side effects?  I'm just really scared to roll the dice on that cancer side effect for my 8 y.o. considering that this is a life-long disease and treatment will have to continue no matter what - and I know that you know that as well - just makes me feel better saying it out loud.

 Reply posted for mmtom.

My son started Remicade in 2007 and it worked very well for him.  I was initially afraid to start the treatment, but very glad we did.  He even looked forward to his treatments because they always made him feel better.

 Reply posted for alanschachter.

Thanks - will look into the info!

 Reply posted for saddenmom14.

Thanks for the info - I appreciate it - I'm sorry to hear about your son being so young and having to go through this - I've been researching, am onto a 2nd opinion and possibly a 3rd opinion, looking at the upcoming events, as well as spoke to a local Chapter person, and am discouraged that there really only seem to be the 3 options.  I know that we need to make a decision soon as she is moderate to severe and every day that passes without the proper treatment is doing her body damage, so I'm trying to feel things out.  What type of treatment is your son receiving?

 Reply posted for mmtom.

My son was 16th mths old when he was diagnosed and has had it pretty much since birth! So I understand your concern. All I can tell you, is to go with your gut!Listen to your mother instinct's! And research,research research! Ask lots of  question's like for how long are we going to this med? If this doesn't work what's the next course of treatment? Ask Question's?????