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03-15-2013, 10:04 AM   #1
AHSmom
 
Join Date: Mar 2013
Location: Massachusetts
13 y/o with Crohn's

Hello. I am glad to have found this group. My daughter was diagnosed last summer with Crohn's following a colonoscopy, endoscopy and mri. She was put on asacol and seemed to be ok. The past month, she had a horrible flare. Non stop diarrhea, a lot of blood, severe stomach cramping. She was admitted to the hospital for 2 weeks and started on prednisone(60 mg). She is home on the prednisone, asacol and pepcid. Feeling ok stomach wise but complaining of severe head aches and body aches. We weren't told what the long term plan is for medication and are waiting until the 3rd to meet with a GI(hers left around the time of her flare up and left her without a GI).
03-15-2013, 10:18 AM   #2
EthanClark
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Location: Provo, Utah

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Welcome and sorry you had to find your way here, but it is a wonderful place. My son is only 3 but there are quite a few parents on here that have children around your's age that I'm sure will be along shortly with advice. We are using EEN for treatment on my son at this time. Good Luck
03-15-2013, 10:24 AM   #3
Devynnsmom
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Hello, and welcome to the forum. I have an 11 year old daughter with Ulcerative Colitis. She is currently on Sulfasalazine and has been doing very well on it. I hope your daughter feels better real soon, and you get some answers re treatment etc.
You will find lots of support here. This place has been a life saver to me, and many others.
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
03-15-2013, 10:28 AM   #4
Clash
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Hi and welcome to the forum, AHSmom. So sorry that your daughter is having a tough time right now. What has the GI had to say about her body aches and headaches? I would definitely be calling and letting them know what she is experiencing. I hope she finds some relief soon and they find a maintenance med that will keep her CD at bay.
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Clash
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
03-15-2013, 11:01 AM   #5
Mehita
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I'm sorry to hear your daughter isn't feeling great, but glad you found the the forum. Lots of great people here with a wealth of info.

As Clash suggested, I would give the GI a call and let them know about the headaches and body aches. It could be a side effect of the meds, which they can tweak, or it could signify something else. It never hurts to call and you don't want it to get out of control. Pred can cause lots of side effects too.

It's possible that Asa could be her maintenance med or maybe 6mp if the Asa is causing the aches. Many kids on this forum are on one of those two meds. Or maybe the Asa just isnt strong enough to control the Crohns and you may need to consider biologics or EEN or something. There are options out there and you just need to find what will work best for her.

Keep us posted...
__________________
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
03-15-2013, 11:13 AM   #6
parentnj
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Welcome to the forum and I hope your daughter feels better soon. Our 13 yr old son was DX'd with Crohn's last November. He was put on Pentasa which did not improve his condition. He was then put on 40MG of Prednisone and kept on the Pentasa. During the first 2 weeks he had pretty severe headaches and muscle cramps from the Pred ... but they stopped once his body adjusted to the steroids. Unfortunately the Pentasa (5-ASA like Asacol) didn't work for him. As he tapered off Pred he flared with severe bloody diarrhea. Putting him back on 20MG Pred got it under control in a day. He is now on Methotrexate 25MG pills and tapering off Pred. So far so good but we do expect some headaches as he tapers as that happened last time.

Pred is very strong medicine but was tolerated well by our son and got the pain and inflammation under control immediately. The trick is keeping it that way and I think it is really trial and error until you find what maintenance works for you. I hope you find the right treatment course soon.
__________________
Son Alec 13yrs old - DX 11/2012
Remicade
Methotrexate 12.5 MG Oral & Zofran weekly
Folic Acid Daily
2000 IU Vitamin D Daily
1000 IU B-12 Daily
One A Day for Athletes

Failed - Pentasa
03-15-2013, 11:40 AM   #7
Jmrogers4
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Welcom AHSmom,
I have a 13 year old son with Crohn's.
It is possible that the asacol was not controlling the Crohn's. From my understanding it works on surface inflammation in the large intestine/Colon but doesn't do much for underlying cause of inflammation.
I would imagine they will suggest a immuno suppressent like Imuran (azathioprine) or 6MP, it would be the next step in a bottom up approach (starting with mildest drug (Asacol/Pentasa and moving up till you find what works) as opposed to a top down approach, some GI's prefer to start with biologics - Remicade or Humira and hit the disease hard and get everything under control. I think this also depends on the severity of the disease at diagnosis.
Read up on all the different treatments in the treatment section and then listen to what the GI wants to do and why. Don't lock yourself in to any one treatment, so many of us have tried lots of different ones and it took a while to find one that works for our child.
__________________
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
03-15-2013, 02:22 PM   #8
Farmwife
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Hi and welcome,
I just have my support to offer. The advice is right on with what I would say.

HUGS
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-15-2013, 03:40 PM   #9
AHSmom
 
Join Date: Mar 2013
Location: Massachusetts
Thank you. It is just nice to see others that understand. It has been a scary few weeks. She was pretty severe when admitted to the hospital. I know her labs showed her CRP(I think it was) was a 7 for inflammation and it has gone down to .88 on the prednisone.

I was able to get in touch with her old GI at his new hospital and he is going to see her next week to work on a plan.
03-15-2013, 04:45 PM   #10
Farmwife
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I'm glad she got in. I'm a little surprised that the normal GI didn't make sure he had a replacement.
03-15-2013, 07:33 PM   #11
Dexky
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Welcome AHSmom! Did she have regular blood tests since last summer? Had her GI ever pushed a stronger maintenance med? I hope you get her back to good quickly! Good luck!
__________________
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
03-16-2013, 11:54 PM   #12
CarolinAlaska
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I'm sorry your daughter is sick. My daughter is 13 also. I've heard of another child who had headaches when he had that much prednisone. How much does your daughter weigh?
I'm glad you could get back in with your old GI and not have to wait until April to get things adjusted.
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-17-2013, 06:31 AM   #13
Sascot
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Hi and welcome! Sorry to hear about your daughter suffering. Sounds like she needs new meds, that's good the GI is willing to see her soon.
03-17-2013, 09:35 AM   #14
farmerswifey
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Hi and Welcome, hope your daughter feels better soon xo Sending hugs and support x
__________________
Mum to Mr C aged 11

Crohn's Disease
Diagnosed 21 Aug 2012
EEN 27 Aug 2012
6mp
Allipurinol

Remission 17 Mar 2014

Currently healthy, playing football, obsessed with Lego and Star Wars!

Knowledge is Power
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