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07-27-2012, 05:00 AM   #1
Patricia56
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New to the Forum, not new to Crohn's

Hello everyone. I am the parent of a 16 yo boy with CD whom I call Badger. He was diagnosed when he was 10. It took a couple years to get him into remission but he was in a good remission for about 4 years. He is starting to flare but we are upping his meds and hoping for the best.

The treatments he has had over the years include: exclusive enteral feeding via NG tube, Pentasa, 5ASA enemas, sargramostim, budesonide, prednisone, 6-MP, Methotrexate, Humira.He has participated in a couple clinical interventional trials and several observational ones. I fought hard to keep him off "drugs" with two rounds of EEN, diet and determination. None of that was enough and I had to accept that meds were the only way my son was going to get better and that his life depended on getting better.

Badger does not have a typical CD presentation and his diagnosis was delayed for this reason. Rather than diarrhea he develops constipation. His labs are pretty much useless as guides to his illness - perfect except when he is nearly at death's door.

When he was sickest his intestines simply stopped working and became completely obstructed by stool. This happened several times, each time required hospitalization for clean out. Badger went through a lot of invasive testing because his then ped GI refused to believe these problems were due to Crohn's. Badger also develops perianal disease when he is flaring. As is true for many boys with CD, he is shorter than he should be due to poor growth but has recently reached 5'7" which has pleased him a great deal as that now makes him as tall as his mom.

A couple ped GI's later we started him on Humira and 6-MP. We later switched him from 6-MP to methotrexate plus Humira. 2 years ago he refused to continue the Humira because the shots were so painful and he was feeling good. He has been lucky until recently when some of his symptoms returned and his MRE showed inflammation and enlarged lymph nodes.

If you frequent or know about Dragonpack, you will recognize me. I have posted there ever since I discovered it 6 years ago. It was a life-saver and I do my best to pay forward the gifts of support and guidance I have received from the other parents I met there.

Last edited by Patricia56; 01-24-2013 at 08:51 PM.
07-27-2012, 05:41 AM   #2
Angrybird
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Hello and welcome to the forum, am glad you have decided to join

I am sorry to hear your boy has this nasty disease and will be keeping fingers crossed that he can be feeling better again soon - due to the flare will the Humira be re-started?

If you have not already then please do check out our parents forum, there is a great bunch here to say hello to and have a chat with as well: http://www.crohnsforum.com/forumdisplay.php?f=49.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-27-2012, 11:05 AM   #3
Patricia56
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Thanks AngryBirds I did check out the parents forum and even did a little posting.

P
07-27-2012, 12:31 PM   #4
Snoflayk505
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Welcome to the forum! So sorry your son has been through so much I completely agree that those shots were SOOOOO painful when I was on Humira. I have heard that Cimzia doesnt hurt as bad incase you wanted to check into that.

Also, have you ever considered trying change in diet? I suffered hard for a long time with Crohn's and just recently found diet SEEMS to be working so far! It's really exciting actually. I got back a quality of life & food I said goodbye to a long time ago Im still testing it but it seems certain foods are triggering my symptoms.

Hope he gets better soon
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Diagnosed Crohn's/Colitis/RA/Hypothyroid in 2000
Endometriosis 05
Resection after resection, drug after drug
Ostomy placed, Rectum removed 2010 etc etc etc..

MED FREE! Working with GI on the SCD Diet to manage my Crohn's =D
I'm VERY new to the diet. Seems certain foods cause my symptoms. Testing that theory!

My recipe blog
www.foreverscd.blogspot.com

SCD site (food list, beginners guide)
http://www.breakingtheviciouscycle.i...llegal_a-c.htm
07-27-2012, 12:35 PM   #5
Patricia56
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Good luck with the dietary approach. I haven't seen it be successful long term for other CDers but certainly have heard that it can reduce symptoms.

My son was on exclusive enteral nutrition for several months after he was diagnosed. He had a lot of healing but not complete and as soon as we added any "real" food he immediately (as in within a couple of days) had increased inflammation and bleeding. So we have never felt diet would make a big difference for him and it would be a losing battle until he decided to do it himself. You know teens.

Anyways thanks for the suggestion and hope you continue to do well.
07-27-2012, 02:40 PM   #6
Tesscorm
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Welcome to the forum

I'm glad you've found the parents' forum (saw some of your other posts ). I'm sure you'll find lots of very friendly parents always willing to share their experiences and support!

I'm sorry to hear that Badger is starting to flare again! I hope the increase in medications will quickly bring him under control!

As he/you are already familiar with EN and the NG tube, has 'maintenance' EN ever been considered together with his meds? Perhaps avoiding the need to increase his meds? My son did exclusive EN for six weeks to induce remission at diagnosis (May 2011), since then, he has done maintenance EN (1/2 dose, 5 nights per week) and his only med has been Nexium. For the most part, it has kept him symptom free, however, he will probably have to consider some medication in the near future as tests are showing that inflammation is returning. I know when remicade alone wasn't 'enough' for Crohnsinct 's daughter, partial EN was used to bring symptoms under control and I'm sure there are a couple of other children following a similar treatment. Just something to consider...

Again, welcome to the forum!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
07-27-2012, 02:57 PM   #7
DustyKat
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Hi Patricia and

I do indeed recognise you from Dragonpack.

My daughter also did not have the 'typical' Crohn's presentation and it also resulted in a delayed diagnosis for her, very nearly a disastrous one at that.

I'm so sorry the hear that Badger's symptoms are returning. Has he still been taking the Methotrexate since dropping the Humira?
I so hope upping the dose of his meds is able to pull things back into line.

I know having you here will be a wonderful asset to the forum. Welcome aboard!

Dusty. xxx
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Mum of 2 kids with Crohn's.
07-27-2012, 03:49 PM   #8
crohnsinct
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Hi Patricia,

Welcome to the forum. I have seen the few very insightful posts from you on the parents forum and have been awaiting your introduction. I am sorry your boy is taking a downturn.

Tesscorm is right. O was on Remicade for 3 months and it didn't get her into remission so doc wanted to add Methotrexate. I asked about EN and he agreed to give it a go. 6 weeks exclusive EN and that put her over the edge. The doc warns that EN only works while on it so his theory is we will cycle on and off EN as needed with the remicade (5 week infusion schedule). She started transitioning back onto food mid June and has been fine since. When the time comes, I think it may be hard to ask her to do another 6 weeks exclusive but if she takes a downturn I certainly plan on trying.

Dragonpack??? Now you gave me something else to google...or maybe I shouldn't
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
07-27-2012, 04:04 PM   #9
Patricia56
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In terms of the pediatric GI community, using EN as a bridge (as you all have described) is becoming common practice at the IBD clinics - even has made it into some published treatment paradigms for pediatric CD.

AT this point I have a very strong-willed young man on my hands who is wanting to take more responsibility in making treatment decisions. He has sensory issues and did the EN via NG tube by his own choice. That was when he was 10. He has vivid and mostly unhappy memories of that time. Since he is largely asymptomatic I am sure he will not be willing to even discuss that as an option.

He will not go back on Humira. The shots were really very painful for him and he had significant anxiety issues plus he had a flu-like reaction after every shot.

Instead, if we need to go back to the biologics we will almost certainly end up with Remicade since he never did that one. He started Humira as part of the phase 2 clinical trials and stayed through until he was graduated out of the trial, continuing on under regular medical care.
07-28-2012, 03:21 PM   #10
momoftwinboys
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Happy to hear your son enjoyed remission for many years and hope he gets back there quickly. I soooo appreciate you sharing your knowledge and experience with the group.
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Son (age 13) dx Crohn's October 2011 (age 10)
Azathioprine 10/2011-11/2012
Remicade October 2012
krill oil, multivitamin, liquid Vitamin D/Calcium/Magnesium, zinc, pro-thera complete probiotic.

"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
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