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New Diagnosis Crohns-Combination Therapy at 13yrs old 80lbs

Mon, January 29, 2018 11:54 AM

I am the mother of a 13 year old prepubescent boy who was diagnosed in October 2017 with Crohn's.  We were told his Crohn's is sever and in his ilium. After having a second opinion from another GI doctor the final recommendation is for Combination therapy using Humira or Remicade with an immunosuppressant azathioprine.  

I am scared about the side effects especially the risk of cancer.  This week they are making sure he is caught up on his vaccines (TDap and Meningococcal vaccine)  before they start with his treatment.  

Has anyone else had this as their first treatment?  Has anyone else had a teenager or preteen with this strong of a treatment?  When I expressed my concerns to the doctors they felt he needed a very aggressive treatment because he is so far behind in his growth and development.  They also felt that the first treatment dictates the path or the progression of his ongoing/future symptoms.  

My son has been to a councilor and has worked through the emotional aspect of the initial diagnosis of the disease.  He has chosen Humira shots as apposed to 
Remicade infusions.  We are on a SCD diet, and we have been actively communicating with his primary care and rheumatoid doctor.  

Is there anything else we are missing or I should consider, any advice? 
Thank you

FPO Sunnybird
Joined Jan 29, 2018

Sat, May 26, 2018 5:51 PM

Reply posted for Kimber3.

Maybe I'm a little late to the party here, but if you're worried about Remicade giving your child cancer, don't be. Multiple scientific studies haven't been consistent with finding a distinct correlation between cancer risk and anti-TNF drugs. Those that have shown any kind of link at all have been extremely small relatively speaking. It's also important to recognize the difference between a relative risk and an absolute risk. For example, if a treatment doubles your relative risk of cancer, but your absolute risk without the treatment is only 0.5%, then your risk has gone up from 0.5% to 1%. And typically, this is lifetime cancer risk we're talking about here, not just over one year or some short time frame. The potential benefits of the drug far outweigh the risks for people suffering the damaging and lifelong effects of IBD.

FPO kumputer
Joined Jul 19, 2013

Wed, May 23, 2018 7:25 PM

Reply posted for Sunnybird.

Hi Sunnybird-

My son was diagnosed with Crohn's at 11....53lbs. 

I feel your pain!! 

Initially, he was prescribed Prednisone & Flagyl & Pentasa -6 pills a day to treat his Crohn's that started in his esophagus & continued all the way to his rectum.

I was petrified of the thought of Remicade, Humira, 6MP, methotrexate... NO WAY was I subjecting my prepubessant son to those chemicals.  I actually made him do enteral nutrition therapy (NG Tube Feeds) for 2 years. He put his tube in EVERY night & took it out every morning....Until they stopped working for him.

Thankfully, His GI doc introduced me to an excellent Endocrine Doc who convinced me he needed the Biologics before "the Window" closed.  We chose Remicade.  He is infused at CHoP in Philadelphia, we live in South Jersey. This July 9th will be his 5 year anniversary of his 1st Remicade infusion. He gets infusions every 5 weeks. He is now 17 & 133lbs. God Bless Him!!

When we arrived for his April treatment, they introduced us to "Rapid Infusion:  You would be "outta here in an hour & 15 minutes."  I had a meldown.  Luke has been BLESSED to have never had any reaction to Remicade but I am still petrified of an infusion reaction as we were told it could happen the 1st time or the 91st time. 

On his very first treatment day, we witnessed a child experiencing a reaction- heard the "CODE: Blue," saw the Crash Team respond.  Thankfully, the child was fine, but I will NEVER forget that & have always felt that was God telling me that although this was going to be "routine" for Luke, it was still very serious procedure not to be taken lightly.  

This month, Luke has new insurance.  They will not pay for his outpatient Remicade treatment at the Children's Hospital of Philadelphia.  I am upset beyond words.  They want him to receive his infusions at home by a nurse.  When I asked about the Home Infusion protocol if, God Forbid, an infusion reaction were to occur, I was told they will call 911.

Honestly, I haven't been on this site in years. I haven't been to a Crohn's walk since 2014...It's too upsetting.  I haven't even looked up the complications of an infusion reaction because it takes me back to a place that I pray is behind us forever.  

Today, I explained to my son what is going on with this insurance situation. He reminded me of the comfort I felt when reading the success stories of other kids with Crohn's & told me to go talk to parents of kid's who do home infusions. During my search, I read your post & felt your pain.   It has been a few months since your post & I was hoping your son has had some relief.  Whenever you get a chance, if you don't mind.  I would love to hear how he is responding to treatment & I will keep your family in my prayers.

Take care,

FPO Kimber3
Joined May 23, 2018

Sun, April 01, 2018 10:34 PM

Reply posted for Sunnybird.

I will tell you, all of you, being diagnosed at a young age is a scary thing not only for the child but family as well. I am 28 and was diagnosed when I was 12 and can say that aggressive treatment is necessary because of the time it take to actually find a diagnosis.

When I was first diagnosed, prednisone was the magical cure. I was taking that off and on to treat flare ups up until a year ago. It has horrible side effects and even at one point had osteopenia. Don’t get me wrong, it helped with the pain but all medicines come with risk. I am starting Remicade this Tuesday and while I am excited, I am nervous about the possiblity of cancer. 

With this disease, you have to be positive 100 percent of the time because you can literally change from one day to the next. Expect the unexpected but also know you have people to turn to during this journey. I am more than welcomed to answer any questions any of you may have and good luck to you all. It seems tough in the beginning but know things will be easier!

FPO lpugh89
Joined Mar 28, 2018

Sun, April 01, 2018 3:12 PM

Reply posted for Sunnybird.

Our 15 yo daughter was diagnosed with UC in Oct 2017. Since then she has been on prednisone, mesalamine, 6mp and now Humira. I believe our insurance required she show a non response on the other meds before approving the Humira. But, all that aside, in regards to your question. She has been on the 6mp (another immunosuppresant) and Humira going on 5 weeks. Not sure if it's too soon to talk about side effects, but for the most part she is doing OK. She caught a cold that knocked her off her feet for a couple days (normally she would push on through, but missed 2 days of school), which I suspect is due to her compromised immune system. I hope your son is having success with his treatment regimen. It is worrisome that they have to be on such strong meds, with such potentially negative side effects. 

Joined Jan 1, 2018

Sat, March 03, 2018 6:55 AM

Reply posted for Sunnybird.

My 12yr old son was diagnosed with severe Crohn’s in June of last year. He was a very sick child when we started treatment, 103 degree fevers almost daily and too sick to even sit up to watch TV. His GI put him on Remicade every 4 weeks and Colazal, 2pills 3 times a day. They had to deal with insurance approval, but after just a couple of months he was a brand new kid. He just had his second colonoscopy at the end of December, and things looked VERY good!

It was very scary to have my 65lb child on such powerful medicine, but watching him thrive again was worth it. He weaned off Colazal in January. He is about to come off Remicade and start Entyvio due to complications specific to him so I’m back to being scared out of my mind over him being on something new, but I’m trying to stay positive about how far he has come. 

I hope things have gone well over the past couple of months for you and your son! I truly understand what you are going through so please know you aren’t alone in this battle. 

FPO KatyKelly
Joined Mar 3, 2018

Mon, February 26, 2018 3:11 PM

Reply posted for Sunnybird.

chiropractic care

also, my insurance wil not pay for these drugs until cheaper meds have been tried.
wish i had know that before all the blood work required before starting the humera.

FPO aharris
Joined Feb 26, 2018

Sun, February 25, 2018 9:32 AM

Reply posted for David.

Prednisone has terrible side affects.

FPO charbs
Joined Oct 31, 2016

Sat, February 24, 2018 2:50 AM

Reply posted for Sunnybird.

I wish there was an easy answer. We have a 13 yr old too and they started him prednisone an then to methotrexate. Not sure yet but we battle ourselves in how to manage all the risks. Good luck.

FPO David
Joined Feb 24, 2018

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