Crohn's Disease Forum » Parents of Kids with IBD » Newly diagnosed and scared!

10-06-2015, 08:38 PM   #1
Jonncadensmom's Avatar
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Newly diagnosed and scared!

My 13 yr old son was just diagnosed with Crohn's. While I myself am a nurse I deal with geriatrics so this kid stuff is really throwing me for a loop! Plus, this is my baby. We've never really had any health issues up to this point. We had our first scopes done today with biopsy results following next week. The GI Doctor put him on a steroid to get the inflammation down.
My first concern is about all the different medications I have read about! Is this basically a trial and error thing until we find the one that works?
Secondly, I feel so lost! I thought I knew what to expect, but when the doctor told me my son definitely has Crohn's I was floored. There is so much information out there that I don't know where to turn. Does anybody know of a good reputable website I can go to to find more information?
10-06-2015, 09:23 PM   #2
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Clash's Avatar
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Welcome. Sorry to hear of your son's dx.

Crohn's and colitis Foundation of America has a good website.

The best way to look at treatments is as if they are on a pyramid.

The lowest level contains 5ASAs like Asacol, Pentasa etc These alone are generally not enough to treat pediatric CD. Comparative to giving an aspirin for a brain tumor.

The next level are the immunosuppressive meds like imuran, 6mp or methotrexate

The highest level of the pyramid contains biologics like remicade and humira.

For a long time the meds were used to reach clinical remission or absence of symptoms then studies showed that even though there may not be outward symptoms inflammation could still be simmering and causing irrevocable damage. Now the standard is deep, stable remission including clinical, endoscopic and histological remission with full mucosal healing. This leads to longer periods of remission and can lower the risk of surgery.

So pediatric CD tends to be more aggressive and progressive. Due to this GIs tend to treat more aggressively in hopes of staving off permanent damage and to allow for growth (CD causes malabsorption which can affect all aspects of growth) during this most important time.

There are a number of parents on here I will tag a few. My little penguin, crohnsinct Maya142 pdx awmom
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
10-06-2015, 09:33 PM   #3
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Hi and welcome (but sorry that you have to be here).

I agree with Clash- CCFA is a great place to start. The parent's forum also has a lot of good info - lots of studies, research and also tips and tricks.

Typically steroids are used to induce remission and a maintenance medication is started at the same time, to give it time to work. Sometimes Exclusive Enteral Nutrition (EEN - a liquid diet) is used to induce remission instead of steroids. There are several parents whose kids have done EEN and I'm sure they'll chime in shortly.

My daughter was diagnosed at 16 and put on remicade (a biologic) and Methotrexate (an immunomodulator) right away. Kids tend to have more severe disease and are generally treated aggressively.

Finding the right medication combination is unfortunately, a lot of trial and error. The first year tends to be the hardest but it will get better. It also depends on what medication is used -- medications like 6MP and Imuran tend to take longer, while biologics like remicade and Humira tend to work somewhat faster.

Hang in there!
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
10-07-2015, 07:51 AM   #4
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Hi there and welcome, although I really wish you didn't have to be here.

CCFA is a good site. The University of Michigan also has some good IBD School videos on youtube. I posted them here a bit ago. I will see if I can fid the thread. At the beginning I would say just take your time. It is a lot to absorb. Reading and knowledge are power and helped me but you have to be careful not to read to much. This forum has been a lifesaver for me. At the beginning it was my soul source of information and support. However, remember that many come her when unwell and then when things are great they are off living their lives (as it should be). Because of this what you are reading could be slanted more toward the "issues" or "problems" so please do not let that scare you. Read the success stories thread in the parents forum! It is great!

As Maya said the first year is the toughest. My older daughter took 6 months to figure out and my younger one is going on 9 months and we have yet to find the treatment that is going to work for her.

We have used bot steroids and EEN to knock out acute inflammation.

No doubt you are going to have a lot of questions. Ask away. That is what we are all here for.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
10-07-2015, 10:21 AM   #5
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Like the others have said, CCFA is probably the best website along with this forum.

What kinds of symptoms was/is your son having? When is his next appointment?

Unfortunately, the meds are a bit of trial and error and you'll have to work closely with your GI on where to start and how you want to proceed. Just ask lots of questions until you fully understand what's going on and what you're agreeing to. That being said, don't let the side effects scare you into inaction. Untreated IBD is far scarier than some of the side effects.

Let us know how things are going...
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
10-07-2015, 11:36 AM   #6
my little penguin
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Ds was dx at age 7 and now 11
Like other said finding that magic medicine is key
Potential scary side effects are meaningless if the med doesn't work for your kiddo
Or they are too sick to play go to school etc because they are treated fully
Add in complications of under treated disease such as surgery
Yep I will take possible side effects that may never happen

Websites there is a pediatric research section on here with links to papers on treatment and een etc.,,
Very useful
Ask questions
We are here to help

Thread found here
DS - -Crohn's -Stelara -mtx
10-07-2015, 11:47 AM   #7
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Sorry to hear about the diagnosis, but at least now you can move forward with treatment. Steroids or EEN are good choices initially to reduce inflammation, while you start a maintenance medicine, which usually takes a few months to start working. My daughter initially just started with a maintenance medicine (Remicade), without steroids or EEN, and she got quite a bit sicker for a few months, until we ended up having to add both EEN and steroids. The Remicade didn't really start working for her until about 5 months after we started it, but now she's doing really well.

For me, this forum has been a huge source of information. You can ask questions directly, read through old posts, or use the search function to look for specific topics.

Please feel free to continue asking questions here, and I hope your son responds to treatment really quickly!
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
10-07-2015, 01:44 PM   #8
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Welcome, wish you didn't have to find us. You have already been given some great advice and I can't do much more than reiterate it.
I think the first year is a steep learning curve as each person's disease behaves differently , one could have what appears to be relatively mild disease but need biologics to keep it under control.
Feel free to ask any question almost always there has been somebody that has dealt with it. Even if you don't have any questions and just want to rant or have an awesome story were here for you to share.
So many of these kids feel like family I find myself wondering how they're doing. I'm excited to hear about their triumphs and not just in fighting their crohn's.

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

Husband dx Crohn's 3/1993
currently none due to liver issues
10-11-2015, 06:25 AM   #9
Holding It Together
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Just chiming in here a word of support. I don't have anything new to add, but I think it helps to know you're not alone in this journey. Hugs!
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
10-12-2015, 11:02 AM   #10
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I was also In the medical field and it still through me for a loop when my daughter was diagnosed. It takes time and there definitely is a learning curve.

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
10-12-2015, 06:06 PM   #11
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Hi and welcome. Sorry to hear about the diagnosis. Pretty much all said in the posts above. Hope the treatment works well whichever they decide
10-13-2015, 09:00 PM   #12
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Just a quick update... My kiddo is one tough cookie! He is taking this diagnosis in stride. We go back next week for our first follow-up appointment since diagnosis. He also has to have an MRI of his abdomen on that day. The most difficult part for us as a family is that his doctors are nearly 3 hours away. One appointment literally takes all day. I'm afraid of getting behind at work and of him missing too much school. Plus my husband is basically self-employed, so if he can't work, he doesn't get paid. This is a lot to take in at one time. I just hope to get him into remission and keep him there for as long as possible!
10-13-2015, 09:07 PM   #13
my little penguin
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One word
It is covered if you work more than a year
It will help with all the appts and tests for time off work
There will be a lot of them
Especially at first
10-26-2015, 09:59 AM   #14
Sea Glass
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Sorry about your son; so young!
I was diagnosed 6 years ago at 25.. I can't imagine being so young!
Everyone seems to have great advice; different meds work for different folks!
The biggest thing also is a good healthy diet; stay away from processed foods!
I had a (food) sensitivity test done; those are big indicators in foods to try to stay away from... or if you believe that those tests and corrections work.. But getting in touch with a nutritionist is key to maintaining a healthy lifestyle and keeping his body levels healthy! Vitamin D is crucial!!! I can't stress that enough!
Best wishes!
10-30-2015, 03:47 PM   #15
Visual Acuity
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Join Date: Jun 2015
Location: Washington
I donít have much in the way of help, but I wanted to say Iím so sorry about your diagnosis for your son. Itís all so overwhelming isnít it, We just found out about our son too. Iím still in denial a little bit, mostly just terrified. Iím glad you asked the questions about the meds, I was also wondering about them.

I see in a later post you did, that you are 3hrs away from the doctors, now Iím feeling lucky that ours is only 1hr away, and I also have a husband thatís self-employed (builder).

Iím not much help, but I do hope the best for you and your family. Iím so sorry you have to go through all this. Please keep us updated, it helps a lot. Hereís hoping for a quick and very long remission!
Son (A)
DX Crohn's October 2015
Has Fragile X Syndrome. (Similar to Autism)
He's cognitively at about a 2 or 3 yr level. Off the chart when comes to anything to do with electronics, especially his iPad.

Meds: Humira (40mg) every 14 days ó11/21/15
MTX injections (25mg) once a week ó 11/21/15
Citalopram 20ml, Folic acid, Vitamin D, Multivitamin

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