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Crohn's Disease Forum » Parents of Kids with IBD » We're SCARED to start HUMIRA for our 13 year old son...any encouragement PLEASE !!!!


10-18-2016, 11:21 AM   #1
zachsmom
 
Join Date: Oct 2016
Location: Lockport, Illinois

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We're SCARED to start HUMIRA for our 13 year old son...any encouragement PLEASE !!!!

Hello All
Thank goodness for this wonderful site
Our 13 yr old son was DX with crohns last OCT
We did nutritional therapy that worked but went off once he was feeling better because we truly didn't know enough yet about this disease
He had 2nd flair on Sept 3, Hes been on steroids to help flair and Dr wants to use Humira to hopefully get him into remission
I thought I did all my homework & came to the best decision but then my hubby talked to the Humira ambassador about potential cancer concerns and was shaken up with info & now we are scared & unsure again what to do.
I know we need medicine but am soooo fearful too
Just looking for advice & encouragement from Humira users or other immunosuppresent medication users....

THANK YOU soooooo much

Zachsmom
10-18-2016, 12:07 PM   #2
my little penguin
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Join Date: Apr 2012

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Does your child ride in a car ?
Swim in a pool

Risk of death for a child under 14
1 in 250 by car
1 in 1000 by drowning ( even if they can swim )

Risk of T cell lymphoma average person on the street without ibd
2 in 10000


Risk of T cell lymphoma with ibd biolgics and immunosuppressants
6 in 10000


Untreated or under treated crohns has its own risk of cancer since repeated inflammatory response

Ds has been on it for 4.5 years and is 12

Good luck
__________________
DS - -Crohn's -Stelara
10-18-2016, 12:23 PM   #3
zachsmom
 
Join Date: Oct 2016
Location: Lockport, Illinois

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thank you for responding..... I encouraged my husband that we cannot make an emotional decision based on fear. Your above examples are great & I will share them with him. I have already gone through all the emotional stuff and with the encouragement of our Dr decided we need to do this. Now that we are getting ready to go through with it my hubby got scared by the statistics the humira nurse shared with him when he asked about lymphoma.
I really do appreciate your words
Thank you for sharing your little penguins journey...I have been to this site many times in past 4 months and finally joined for much needed support
have a great day
10-18-2016, 12:28 PM   #4
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

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My daughter has been on Remicade for 2 years and methotrexate for 1 year. Yes, it's scary to put your child on these powerful medications, but for us, the risks of untreated or undertreated Crohn's seemed much higher. It was maybe a little easier for us to make the decision since our daughter was extremely sick and malnourished when she was diagnosed.

It took my daughter quite a while to respond to Remicade, and a few other treatments were needed while waiting for it to work. Two years into it, she's doing very well, and she hasn't experienced any side effects.

My daughter was diagnosed at just about the same age as your son, and the other issue for kids this age is growth. My daughter's growth had been stalled for a few years at diagnosis, and without treatment, we were worried both about her physical growth and brain development. She's gained 45 pounds and 4.5 inches over the past 2 years, so that's been a huge relief.

Good luck--I know that treatment decisions are really hard to make.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
10-18-2016, 12:36 PM   #5
Maya142
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Hi and welcome!

We were in your position many years ago. We agonized and agonized about Humira. I was terrified of the cancer risks. But on the other hand, I was also terrified of having a child who could not live normally and was always in pain. And at some point, the disease became scarier than the meds, so we put her on Humira.

Then my second daughter was diagnosed, and we agonized and agonized AGAIN about it. Tried many other meds that did not work. Finally, she ended up on Humira and started to feel better.

One of our doctors told us, once you make the decision to go on biologics, you will never look back. It is is true - my girls have been on biologics for 6-7 years and we have never, for even a moment, regretted it. In fact, I am just so grateful they exist!

My girls have never had side effects at ALL from biologics. No increase in infections or anything like that. They have had way more side effects from drugs like Methotrexate and Imuran.

There is a great presentation which discusses the risks and benefits of IBD meds:
http://programs.rmei.com/CCFA139VL/

Crohn's comes with all sorts of risks if left untreated -- abscesses, fistulae, sepsis, strictures, obstructions and it even increases your risk for cancer. Inflammation increases your risk for cancer, which is why it is important to treat it.

Good luck! I know it's a very hard decision.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
10-18-2016, 02:43 PM   #6
zachsmom
 
Join Date: Oct 2016
Location: Lockport, Illinois

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My daughter has been on Remicade for 2 years and methotrexate for 1 year. Yes, it's scary to put your child on these powerful medications, but for us, the risks of untreated or undertreated Crohn's seemed much higher. It was maybe a little easier for us to make the decision since our daughter was extremely sick and malnourished when she was diagnosed.

It took my daughter quite a while to respond to Remicade, and a few other treatments were needed while waiting for it to work. Two years into it, she's doing very well, and she hasn't experienced any side effects.

My daughter was diagnosed at just about the same age as your son, and the other issue for kids this age is growth. My daughter's growth had been stalled for a few years at diagnosis, and without treatment, we were worried both about her physical growth and brain development. She's gained 45 pounds and 4.5 inches over the past 2 years, so that's been a huge relief.

Good luck--I know that treatment decisions are really hard to make.
Thank you soooo very much !!!!!
Zach was not growing or gaining weight so facing those concerns in addition to all others.
Thank u for sharing ❤️
It means a lot to me
zachsmom
10-18-2016, 03:05 PM   #7
zachsmom
 
Join Date: Oct 2016
Location: Lockport, Illinois

My Support Groups:
Hi and welcome!

We were in your position many years ago. We agonized and agonized about Humira. I was terrified of the cancer risks. But on the other hand, I was also terrified of having a child who could not live normally and was always in pain. And at some point, the disease became scarier than the meds, so we put her on Humira.

Then my second daughter was diagnosed, and we agonized and agonized AGAIN about it. Tried many other meds that did not work. Finally, she ended up on Humira and started to feel better.

One of our doctors told us, once you make the decision to go on biologics, you will never look back. It is is true - my girls have been on biologics for 6-7 years and we have never, for even a moment, regretted it. In fact, I am just so grateful they exist!

My girls have never had side effects at ALL from biologics. No increase in infections or anything like that. They have had way more side effects from drugs like Methotrexate and Imuran.

There is a great presentation which discusses the risks and benefits of IBD meds:
http://programs.rmei.com/CCFA139VL/

Crohn's comes with all sorts of risks if left untreated -- abscesses, fistulae, sepsis, strictures, obstructions and it even increases your risk for cancer. Inflammation increases your risk for cancer, which is why it is important to treat it.

Good luck! I know it's a very hard decision.
Thank you for your response !!! I am going to watch the link u included. It's sooooo comforting to know other parents AGONIZED too over these decisions.
Not that I want anyone else to have to go thru this at all on any level. I've just been on an emotional roller coaster for past 8 weeks while Zach is on the steroids trying to make the best decision before needing to take next step!!!
It's draining & im pretty sure I have an ulcer... Uggghhh
I'm so happy to hear ur daughters are doing good n responding!!!
Thax again for feedback ❤️❤️❤️
zachsmom
10-18-2016, 09:48 PM   #8
mom5272
 
Join Date: Aug 2010
Location: Virginia
Been on immunosuppressive therapy for about 20 years.. no problems here and it has allowed me to live a normal life.
__________________
Crohn's Disease since 1992
6MP 100mg daily
Prednisone when occasionally flare
10-19-2016, 02:42 AM   #9
Willowcat05
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Location: Glasgow, United Kingdom

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My son has been on Imfliximab (remicade) for 1 1/2 year it has given him his life back he failed every other meds he was so sick that I thought nothing was going to work but once he had right hemicolectomy and put on imfliximab he has never looked back u know these meds are scary but the benefits out way the risks x
10-19-2016, 10:47 AM   #10
FightingforJo
 
Join Date: May 2016
I know this is a scary decision. I always felt like this was one of those "damned if you do and damned if you don't" type of decisions. But this board and all the parents on here was SO helpful to me ... helped me think more calmly and rationally in a time where I was so worried and scared and depressed about my daughter's diagnosis (she was just diagnosed this past January right before her 12th birthday).

She was so very sick. Couldn't keep anything down, doubled over in pain, perianal fistula, mouth ulcers, lost about 30 pounds in 5-6 weeks time. It was excruciating to watch. I was waking up with panic attacks because I just did not know what the future would hold.

Her GI started her on Remicade in early February. We went through many ups and downs those first 4 months (Remicade just didn't want to "stick" in her system on its own at the start) so we also added methotrexate shots weekly in mid-May. The turnaround for her was miraculous! Within a couple weeks we had our daughter back. Eating again, no pain, no diarrhea, back to her normal weight, not missing school ... even went to sleep away soccer camp for a week this summer.

To us Remicade has given us our daughter back. Given HER her life back. She is living a normal life of a 7th grader ... school and soccer and sleepovers with friends. While for sure there are days where I still worry and "what if" our situation constantly, I know without a doubt that we did what we needed to do to save our daughter. The disease ended up being scarier to us then the meds needed to save her. Seeing her happy and feeling good is all the proof I know that we made the right decision.

Wishing you peace with whatever decision you make, and hoping your son is feeling better soon!
10-21-2016, 05:40 PM   #11
Mehita
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Join Date: Nov 2011
Location: Minnesota

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My son has been on Remi for three years now and in remission since starting. It gave him his life back. The only time he thinks about Crohn's is at his infusions and even then he's thinking more about four hours of uninterrupted video games than the infusion!

He's never had any reactions or complications to speak of and is doing very well. Good luck!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
10-21-2016, 10:55 PM   #12
Pilgrim
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Join Date: Jul 2014
Location: Ontario

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We agonized about the decision too. Our daughter was only four and had been very sick for a year while we tried other things. Now she is six and 2 years on Humira. She's living a relatively normal life! I still do worry about it though. I hope someday we can reduce the dose or even talk about stopping. It's conflicting.
10-25-2016, 10:01 AM   #13
Jmrogers4
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I think we've all agonized over the "med decision" it's so much easier to weigh the risks when it is about yourself but when it comes to your kids who you would do anything for it makes it so much harder since you don't want to make the wrong decision. Life would be so much easier if we had that crystal ball to tell us what to do.
I fought putting my kiddo on remicade for many years as for the most part he didn't appear to need it for the most part his only symptoms were lack of growth and weight gain and all my lovely other mamas on her convinced me this was a big red flag. Even his GI thought he was doing well and was just on the small side naturally but my gut was telling me that wasn't right, he had been in the 80% for height and 50% for weight prior to crohn's and right before we started on remicade he was in the 11% for height and 1% for weight and at 14 1/2 puberty was virtually non existent. We all agreed something needed to be done at least for the weight portion. We had gone through all the "lesser" meds and finally agreed we needed to give remicade a try. His GI now calls him the poster child for remicade, he has been in remission since starting nearly 3 years ago and gone from just a smidge over 5 foot tall to just a smidge over 6 foot tall and is at the 75% for height and still growing. While I would like to see more weight on him he is at 30% for a far cry from that 1% and looks healthy and is enjoying his senior year of high school without worrying about Crohn's.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
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Crohn's Disease Forum » Parents of Kids with IBD » We're SCARED to start HUMIRA for our 13 year old son...any encouragement PLEASE !!!!
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