OT:Going off Pentasa after on SCD??

[Guest guest]

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]

Amelia, I just wanted to thank you for your kind words and prayers always help:)

There are so many fabulous parents over at PB. I'm sure, if you were in the

same boat, you'd do the same:) I hope your husband is feeling well! thanks

again,

Kathi and Liam

>

> 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!

>

> Amelia

>

>

>

>

>

>

> ________________________________

>

[Guest guest]

thanks Debbie and to all who responded. We do have to get his blood checked

every 3 months. We have supplemented folic acid too. I suppose i have to do a

trial stop at some point...I can't help but think that the covering his eyes,

etc is related. I think he's getting some sinusitis from it too as he's pushing

at and kinda punching his nose area and crying. Unfortunately the talking

didn't come with Pentasa for him.

thanks again very much for taking the time to respond.

Kathi and Liam

>

> 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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