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]

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