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Crohn's Disease Forum » Your Story » Worried mom


04-19-2014, 10:48 AM   #1
Spershick
 
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Worried mom

My son Sean was diagnosed this January after salmonella poisoning landed him in hospital. I had always felt there was something wrong months before when he became very tired, pale, and no energy. Doctors then said he was fine..
After spending 2 weeks in hospital dropping down to 96lbs (5'10) it was terrible.
Prednisone treatments and antibiotics helped thank goodness. Started imuran and was tapering off Pred until he had a flare. Back up on the pred..a month later started tapering again..is now in another flare/terrible head cold too. Doctors don't want to go back up on pred so started Asacol last week. So far no difference. Missing school and looking terrible poor guy. Any advice out there?
04-19-2014, 12:10 PM   #2
afidz
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Welcome to the forum!
I see you have already found the parents support group, so thats great!
Was your son diagnosed with Crohn's or Colitis? Is he still on the Imuran?
Something that is suggested to all new IBDers is to start a food diary. Write down everything that is ingested and then keep note when he feels sick. By doing this you can get a general idea of what his trigger foods are. Now, it sounds like he might be in a pretty big flare and everything makes him sick, so it might be a moot idea at this moment.
Another thing you can do is the BRAT diet. (Bananas Rice Applesauce and Toast). Those are generally safe foods. If he still can't even stomach those he can trying a liquid diet to give his bowels a chance to rest.
I really hope that your son starts to feel better soon
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04-19-2014, 02:17 PM   #3
Spershick
 
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Thanks afidz
He was diagnosed with Crohns. He has been on Imuran for a couple months. This week added Asacol. The doctor hasn't said for how long for the Imuran but I'm guessing awhile...food diary is a good idea. He has gone through times when he feels great, was even a bit constipated last month. Started to get daring with his food and like most teenagers wanted junk. This current flare has been bad because he is also suffering from a cold. Not sure if he can take anything for that? Still waiting on a reply from the doctor if I can give Imodium for his D
04-19-2014, 03:48 PM   #4
theOcean
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Hello, welcome to the forum! I'm sorry to hear about your son... what he's going through sounds a lot like how my Crohn's was in terms of treatment. My GI just kept giving me prednisone but every time my taper got low enough I would flare again. I also found 5-ASAs didn't help me at all.

Imuran takes about three months to reach full effectiveness. Have you considered asking the GI about biologics, like Remicade or Humira? I know they might look scary, but they've been miracle drugs for many on this forum (myself included) and really help people with severe Crohn's.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-19-2014, 03:54 PM   #5
Spershick
 
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Hi theocean I sure hope this flare isnt caused by this second attempt at his tapering. My son is so scared of needles and iv stuff we were hoping just taking pills would help. Keeping my fingers crossed the Asacol and imuran will start working soon
04-19-2014, 04:04 PM   #6
theOcean
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It wouldn't be caused by the second attempt -- it would just be that the prednisone alone wasn't strong enough to treat it, and when the taper was high it hid that fact.

I'm sorry to hear he's scared of needles! I was actually terrified of getting IVs, but the nurses who would do the infusions are generally very good, and you can always look into methods to numb the area beforehand so that your son doesn't feel any pain. So as long as he would look away, I think he would be fine. But ultimately: it's up to the GI to decide, so ask if they think it might be up for consideration, first.

I hope the Imuran and Asacol does help, though. But definitely keep an eye out to make sure he doesn't get worse, and if he does, to contact his doctor!
04-19-2014, 06:24 PM   #7
Farmwife
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Hi and welcome.
I'm sorry to hear about your son.
My Grace is five and I understand how hard it is to watch them suffer.
As you know it is hard for some to taper off prednisone. My girl is one off them. I can understand why his doctors don't want him on it longer but sometimes it's needed.

As far as the cold medicine, my girl is allowed certain medicine but call your GI and ask what brand he/she suggest. Hopefully he'll be over it soon.

Hugs and welcome aboard.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
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Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-19-2014, 06:37 PM   #8
Spershick
 
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Farmwife, thank you for your kind words. I can't even imagine what it must be like for your little Grace..much to young to be suffering. Praying one day for a cure.

Hugs
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