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08-02-2014, 11:51 AM   #61
Maya142
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You can ask for a referral to pain management. There are also IBS meds that might help - Levsin, Bentyl etc.
Your poor boy. I hope you get some answers soon!
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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
08-02-2014, 02:53 PM   #62
my little penguin
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Join Date: Apr 2012

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Hugs we have been in your shoes more than once
First prior to crohn's dx.
That was ugly - then finding the right med combo .
Dealing with the pain was hard.
DS tried Levisin , bentyl , periactin , elavil etc...
Bentyl worked a bit.
Main things that helped until we found the right meds was
"Hot packs" the microwaveable kind .
A tens unit helped a lot for abdominal pain.
Mouth ulcers prescription rinse .
Warm bath soaking in the tub.
Swimming daily

Recently we found out about warm buddies
DS has arthritis as well so
We will be trying those soon.
http://www.warmbuddy.com/

Hope you can get into a Rheumo soon.
Bechets can mimic crohn's and cause lots of ulcers in the GI track /mouth
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DS - -Crohn's -Stelara -mtx-IVIG
08-04-2014, 06:47 PM   #63
joey123123
 
Join Date: May 2014
Thank you all. I mean it.

Entocort has not helped. Doc is switching to Pentasa 500 mgs for 4 weeks. My poor son.

So we have now tried two drugs commonly used to treat Crohns yet docs have not labeled his condition. Why not?

Has anyone used Pentasa?

Thx!!!!
08-04-2014, 06:55 PM   #64
DanceMom
Senior Member
We started with Pentasa. It helped some but eventually we added Prednisone and 6mp. Have you tried Flagyl? We're doing a round right now and it always helps my daughter (then again, she doesn't have Crohn's.....).
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
08-04-2014, 06:58 PM   #65
my little penguin
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Pentasa as a monotherapy for crohn's is like taking an aspirin for a brain tumor .
Not going to help too much but not going to hurt either .
Pentasa can not reduce inflammation on its own period.
Prednisolone , Mtx and some biologics can .
Pentasa is like putting cream on the intestine.
DS took it for a month at dx while we waited for a second opinon .
It did nothing for him and he just got worse.
That said he took asacol HD as an adjunct therapy ( while on 6-mp then Mtx then remicade )
We thought it helped at the time but when we stopped nothing changed so ...
Good luck with the pentasa but realize if its not working in 30 days he may need something to actually stop the inflammation .
08-04-2014, 07:23 PM   #66
joey123123
 
Join Date: May 2014
Thx. I am asking my second opinion doc at Boston children's hospital for his views.

My son has been rolled up in a ball for 5 months.... I'd rather he be admitted to hospital where he can receive pain meds along with treatment. I
08-05-2014, 05:29 AM   #67
joey123123
 
Join Date: May 2014
Docs still aren't convinced he has crohns. Amazing.....
08-10-2014, 05:59 PM   #68
joey123123
 
Join Date: May 2014
The new drug mix (Entocort and pentessa) is not working. Just bad side effects. We are getting desperate. Not sure where to turn next....
08-10-2014, 09:38 PM   #69
DanceMom
Senior Member
Pentasa won't work immediately. I believe it took several weeks before we noticed a change (and even then she wasn't completely well). I'd say you need more time before you know if it will work or not. In the meantime you could try some drugs used for IBS - Bentyl, Neurontin, Elavil, Levsin, etc. We've tried all 4 I mentioned with limited benefits, but every child is different.

Have you seen a Rheumo or Immunologist yet? I still think an immune work-up may be beneficial.
08-10-2014, 10:04 PM   #70
my little penguin
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Yeah that ^^^
Entocort can take months ( weeks to work )
Pentasa - about 4 weeks you will know if it made any difference .
It did nothing for DS but maybe your lo will be different .
08-13-2014, 05:41 PM   #71
joey123123
 
Join Date: May 2014
More mouth sores today on lips... visible on the outside. Heading to Boston children's hospital on 8/22 as my son's pains continue. Sad situation....
08-13-2014, 05:45 PM   #72
my little penguin
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Make sure to ask about bechets
It mimics crohn's and cause really bad mouth ulcers .
08-26-2014, 07:10 PM   #73
joey123123
 
Join Date: May 2014
HELP..... I went to two of the best GI hospitals in the world this past week. Neither doctor can definitely figure out what's going on with my son. Hypersensitive nerves in small bowels was one theory..... mild crohns / post infectious ibs another theory. We are taking him off Entercord (steroids) .. he started taking antidepressants - elavil - which wouldn't kick in for another 4 to 6 weeks. The pain is still off the charts. School starts next week. We have been in and of hospitals since March.... still no answers. My son is still in pain. It hurts when he coughs....sneezes....burps......even when in the car if we hit a bump. So is it ibs or ibd or post infectious ibs?? Is he on the right meds? Tomorrow his case is being presented to a panel of doctors at Boston s Children's hospital..... we'll see what the team of doctors has to say. Has anyone gone thru this diagnostic nightmare...? What more can I do for my boy?
08-28-2014, 02:47 AM   #74
Sascot
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I hope the panel is able to come up with something! I don't think there is much else you can do - you are doing such a great job trying to fight for your son. Pain management seems to be very important, the only thing different I have heard of is a partial epidural. I am not sure if they ever use them for kids. My cousin was offered one when she had really chronic back pain. They inject into the spine which provides pain relief around the back and tummy but still allows the person to walk. If they can't figure out what's wrong, they really need to put together a plan to treat the pain so that he can at least function on a daily basis.
08-31-2014, 11:19 AM   #75
Mehita
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Any news from Boston?
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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
08-31-2014, 11:38 AM   #76
DanceMom
Senior Member
We tried Elavil for a short time. It helped with the diarrhea immediately but I'm not sure it ever helped with the pain. We eventually chose to stop the medication due to unwanted side effects. Our GI believes A has hypersensitive nerves in her bowels as well. I can't disagree with that theory, but none of the IBS medications have helped her. I hope you get better results.
08-31-2014, 12:16 PM   #77
Maya142
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Boston Children's has a really good pain management department. They also have a famous chronic pain rehabilitation program. We looked at it for my daughter and she may do it in the future if she is still in pain once the arthritis is controlled. They take kids with all sorts of diagnoses - abdominal migraines, complex regional pain syndrome, fibromyalgia, various kinds of arthritis etc. However, if it is Crohn's and not chronic pain from IBS, obviously that needs to be treated first.

http://www.childrenshospital.org/cen...liation-center
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