Re: OT:Going off Pentasa after on SCD??

[Guest guest]

Kathi,I have absolutely no advice to offer b/c I (rather my husband) has had no experience with Pentasa. I would like to tell you what a wonderful mother you are for doing this for Liam. Taking care of little ones while taking on the huge challenge of cooking in a whole new way is tough -- even tougher when the little one can't communicate very well. My heart and prayers go out to you and Liam as you move towards a healthy life for you both. Take care!AmeliaTo: BTVC-SCD Sent: Mon, March 22, 2010 5:39:55 PMSubject: OT:Going off Pentasa after on SCD??

Hi All, I need your help, as I just read to learn here mainly, but

haven’t posted. I use PB b/c my boy is on the autism spectrum and has had

major GI issues. My son Liam is 4 and was dx’ed with Crohne’s/austic

enterocolitis. The doctor says it looks like Crohne’s…LNH throughout

his whole GI tract and ulcerations in the intestines, but mostly in the small

intestine…ileum, but for these children they term it AE. He was dx’ed

May 2, 2009 (he was 3.5 yo). About 5 days before his scopes/pill cam, I started

SCD. He’s been on SCD for 10 months and when first dx’ed

he did Entocort (1.5 weeks as he couldn’t tolerate, bad gastritis),

Prednisolone (60 days, tapered down approach until we hit 60 days), then I didn’t

do anything for a couple of months and he regressed a bit and seemed to have

issues returning with his belly (he started to posture over my shoulder again and

cry and bang his head…he’s mostly non verbal and before dx’ed

he postured over me or my husband, as some of these kids do, to put pressure on

his belly to make it feel better). Then I put him on the Pentasa

(per our GI doc). he’s on 250 mg 3 x a day. Think it helped a

little, but he was also getting through a regression on the diet. He’s doing well on SCD and his belly has healed quite a

bit…for almost 2 years he gained no weight. In the past 6 months while

on SCD he’s gained 7 lbs (huge for my little skinny dude!). Liam

can’t talk to tell me how he feels; has some words, but not reciprocal

conversation. I really want to get him off of Pentasa b/c I think it’s

causing side effects (headaches, as he’s constantly covering his eyes and

will even if walking, he’ll stop and squat down while covering his eyes)

and honestly, I eventually just want to get him off of it. I just have a

gut feeling (no pun intended!!) that he’d be better off of it, I don’t

know why, but it also scares me to make the move b/c he can’t talk to me.

So, here’s my question…have any of you been on

Pentasa and come off of it after on SCD for a while? If so, did you have a

flare at all after you came off of it? How did you feel off of it? Did

you do fine? If you came off of it and flared, did going back on Pentasa?

Did it help? Lastly, has anyone just decreased it…like perhaps just do

one or two doses per day instead of the full dosing first prescribed? PLEASE bear with me…I know this is long (sorry) and I’m

asking a lot of questions. I just want to do what’s best for my little

guy and I figure you all can give me some great advice, since I’ve never

been in your shoes nor Liam’s. ANY ideas, suggestions….anything, I would so

appreciate it (and believe me, so will Liam;)) Best wishes, Kathi Liam, 4 yrs old, asd, SCD 10 months

[Guest guest]

Hi, I'm 40 with dx of Crohn's Disease.  I was put on Pentasa after trying several different things that I couldn't tolerate.  At one point, I was also put on Imuran--tapering on and off prednisone the entire time because I flared everytime I got off the prednisone.  From what I've read, you should take a folic acid supplement with Pentasa, Asacol--all those 5ASA drugs.  It's on CCFA.org.  Has something to do with the production of blood red cells. 

 

From my experience, pre-SCD when everything was 'really' bad, I had to move in with my mom due to financial/health reasons.  I would close my eyes, hold my head/face without realizing it.  After a few 'episodes' for lack of better term, it would turn out I was very anemic.  Almost without fail--for me, that was the reason.  It wasn't a conscious movement.  I also wear contacts  and usually thought that was the reason. 

 

Even after starting SCD, due to food intolerances I wasn't aware of, I needed the Pentasa.  I  would eat something like butternut squash and within a little while and maybe the entire next day, I would be able  to lay down and be very still.  I felt 'green' and my gut would kill me.  The Pentasa was the only relief I got when I made mistakes like that.  Sometimes it is at a level you are used to so until you feel better with the Pentasa or the food is removed, you feel so much better--it's hard to tell it was the culprit.  I don't know if this is helpful at all but I have read posts on PB--2006 or 2007 I think about a little girl who was put on Pentasa and suddenly she was smiling and laughing after basically being non-communicative. You may want to check the archives on that. 

 

So I don't know if that's helpful or not.  Just my experience.  I would probably panic if I didn't have any even  now.  Nothing else works when you have that type of pain/weak feeling.  Usually I get very, very white too if that helps.  I can even feel it I think.  But then I'm chronically anemic.  Maybe get his blood checked too if you don't already while he's taking the Pentasa.  The stopping in the floor to crouch down reminds me of the same when I'm anemic from dizziness.  But that's totally from my perspective and only you know your son.  I sure hope he feels better.

 

Debbie 40 cd dx'd 3/17/02 scd 12/05

Please excuse the typos I'm on a mini mini computer (:

So, here’s my question…have any of you been on Pentasa and come off of it after on SCD for a while? If so, did you have a flare at all after you came off of it?  How did you feel off of it? Did you do fine?  If you came off of it and flared, did going back on Pentasa? Did it help? Lastly, has anyone just decreased it…like perhaps just do one or two doses per day instead of the full dosing first prescribed?

 

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[Guest guest]

That didn't make too much sense in some parts and I am not dyslexic--I must think faster than I can type on here.

 

Basically, Pentasa is good imho.  If you go on Prednisone again,  you may want to get Protonix or some other (Nexium?) to protect the stomach.  Pentasa also protects the stomach but prednisone can be harsh.  Eating lots of honey is good for gastritis at least to some extent. 

 

Hope he feels better,

 

Debbie

[Guest guest]

> That didn't make too much sense in some parts and I am not dyslexic--I > must think faster than I can type on here.>> Basically, Pentasa is good imho. If you go on Prednisone again, you may> want to get Protonix or some other (Nexium?) to protect the stomach.> Pentasa also protects the stomach but prednisone can be harsh. Eating > lots of honey is good for gastritis at least to some extent.On the other hand, Pentasa did nothing for me when I was on it. It was a complete waste of money.n-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere