Sarah's bleeding came back tonight on the 4th day of increased prednisone. Panicking

[muppet]

Sarah's bleeding came back despite the increased Prednisone. The increased 6MP hasn't had even close to enough time to become effective and I'm starting to worry that this is going to force our hand w.r.t. surgery or Humira. I just emailed her doc (not paged, I'm not that panicked yet) and asked about increasing her pred from 30 to 40 or maybe putting her on an elemental diet with/without an NG tube. Maybe, if worse came to worst, admitting her and putting her on a PICC line and solumedrol with bowel rest. I just don't want to start Humira or cut this kid until it's clear that the 6MP is not going to work anymore, and I don't think we're there yet.

Don't know what to do!!! Sarah hasn't been hospitalized since we transferred her care to Boston and if she were to be admitted up there I'm not sure how we'd handle that. It's 3 hours away and I have no PTO left at all.

Izzy (my littlest one) has her 2nd birthday tomorrow. Her uncle, who shares the same birthday, is supposed to come tomorrow, and my dad... it's going to be busy and stressful here for at least the afternoon. Do I cancel Izzy's second birthday?

Do I page the on-call? He or she isn't going to have a firm grasp on Sarah's history and may overreact to this break-through bleeding and my upset tone and I don't want to stack the deck in favor of hospitalization.

For now, waiting to see if the doc will return my email on a Sat night. I may not hear from him until Monday. Right now Sarah is reporting very little pain, just bright red bleeding with bowel movements.

DAMN IT!!

 

[muppet]

Doc returned my email within 20 minutes. I'm liking this new guy more and more.

60mg pred, 30x2, for the next 3 days. Gonna try to nip this nonsense in the bud. Crossed fingers. Sarah is stressed out and the pred is gonna make that worse.

 

[DustyKat]

Okay, you are sounding panicked enough so can anyone else ring for you, your wife maybe?

How often is Sarah using her bowels?

If the bleeding isn't significant and she isn't using her bowels frequently then waiting for the GI to respond should be fine.

I get the feeling though that you know at what point you need you to page the doc and unfortunately if it comes to that then whatever they recommend is the way to go.

Hoping the GI responds ASAP and everything I have written is hypothetical!

Dusty. xxx

 

[muppet]

Doc got back to us and doubled down on the pred. I agree with him. Hoping for the best.

It takes a lot to freak me out with Sarah but when she starts bleeding, she MEANS it.

Doc wants me to page if it gets worse. I'm planning on staying up late with the kiddo tonight as 30mg of pred at 9:30pm means she's not gonna sleep soon.

 

[DustyKat]

I am way too slow!

Great to hear the GI has responded pronto! I hope the bump up does the trick mate...

:goodluck: Everything is crossed!

Now deep breaths and enjoy Izzy's birthday and Sarah whizzing around courtesy of the Pred...:eek2:

Dusty. :heart:

 

[DustyKat]

And again! :lol:

 

[muppet]

Thanks for taking point and giving me something supportive to read, Dusty. It helps. A LOT.

 

[Grumbletum]

Aww, Muppet, I don't bleed and would find it very scary if I did. How is she doing? And how are you? Did you get much sleep ?

 

[muppet]

Still awake.

Sarah's been sleep for hours, though.

 

[dannysmom]

I a glad Sarah was sleeping. Good luck today and hope you can enjoy the party!! Please let us know how Sarah is.

 

[Artificial]

Hope everything improves for Sarah soon Muppet!

Rachel

 

[scottmyster]

HI muppet , i hope the bump up on preds will help her and i hope the bleeding stops and keeping a close eye on her will really help nice support system you have there it is nice to see she has a gaurdian angel looking over her keep us posted on her condition. best wishes.

scott

 

[muppet]

I hope that's not huge.

Sarah hasn't had a bowel movement since last evening, about since we doubled the pred, so at least it seems to be kicking in. Now the challenge is getting her back off of it.

 

[AZMOM]

What a precious picture!!!! I hope Sarah is sleeping okay on the augmented dose. And yes, weaning soon will be good. Remind me. Is she on 6mp? How long and what dose?

Hugs,

 

[muppet]

Sleep is not happening but hopefully we can step her down to at least as low as 40 quickly. We'll see.

She's on 6MP recently raised last week to 37.5mg from 25mg. It's low for her weight because she's also on allopurinol which raises the effective dose but by what factor precisely I couldn't tell you.

She's been on 6MP or Imuran for 10 years, give or take, with a break of no more than a few months at one or another point.

 

[AZMOM]

I remember now muppet. I did read her story. So when's the last time th metabolites were checked? I'm just wondering if she's therapeutic.

 

[muppet]

She's therapeutic according to Prometheus, the most recent one was probably 3-5 months ago, but doc said last Tuesday that there's room to move up so that's what we're trying. I don't think it's really possible to be "more than therapeutic" on 6MP but there's nothing to lose as far as I'm concerned except a month or two to find out it won't work.

So we're crossing our fingers. We're checking metabolites again next week.