Have had the remicade conversation

[polly13]

have had the remicade conversation

Hi everybody, just a little update on Lucy. We had our GI appointment last Tuesday (pulled forward by 2 weeks due to increasing symptoms). If I am honest I felt the team were a little unsure as to where to go from here. Lucy's disease is mainly peri-anal and her anus is in a really bad state now. Very eroded multiple fissures. Since diagnosis the only real relief she has had has been from prednisone and despite being on 6 mp for the last 3 months she has probably got a little bit worse. She still cries and screams when she is doing a bowel movement and her bum is constantly sore - I feel really bad for her and just wish there was more I could do. She didn't respond to the cipro at all but flagyll and augmenton were added to the mix (about 2 weeks ago) I feel she marginally better but it is really hard to judge. Her bowel movements were liquid and they have thickened a little in the last few days. She is vomitting on and off now aswell and despite having changed the time I give her meds this hasnt really improved. Her bloods are good so she is tolerating the 6mp well. GI also sent her for an MRI scan on Friday as he felt he needed imaging for a full analysis on the state of her anus. He felt we should give the 6mp another 4 weeks but if we dont see any improvement in 2 weeks we should seriously consider remicade. My concern is that he really felt the 6mp would work and didnt seem at all positive about starting the remicade as she is so young - she is only 3. We did all the pre-remicade bloodwork, chest xray etc. while we were in the hospital on Friday. We wont have the results of the MRI scan until later this week ( I imagine we will know more after that)

Gosh I just dont know what to do - remicade ( I think) is the only biologic that is licenses here for paediatric use here in Ireland so I think that it is our last line of defense and as she is only 3 that really scares me. I think she will be fine with the practicalities of getting the infusion as she is really good with needles and bloods and all the horrible things we have to do to our children with this disease. The GIs hesitance has me somewhat worried as well. So I guess I have decided to wait the full 4 weeks before starting if we can at all and hope and pray that the 6 mp will start to work, but I think I am clutching at straws and also am I torturing my daughter needlessly for the next 4 weeks. They dont want to use prednisone again so soon as it is only 5 weeks since she has come off it but what is the lesser of two evils.

So there is our new tale of woe, I really wish there were some easy answers and that my lovely sweet lucy will get some relief soon.

I am also worried about my oldest daughter Katie (7) she has started complaining of stomach pain in the last week or so. I know I am probably hyper vigilant given what has happened with Lucy and that she is probably ok but I am worried anyway. I have made an appointment for her to see our GP tomorrow but I think I will be insisting that she is referred to the GI for review.

Thanks for reading.

Polly.

 

[DustyKat]

Oh Polly...:hug::hug::hug:

There are no wrong decisions here and when things are so uncertain it is difficult not to defer to what the docs are recommending. So while it seems you are dragging this out needlessly you aren't hun. It is so hard to watch our babies suffer and all the while feel so very helpless, nothing can quite describe the complete and utter sadness and heartache that is felt.

Perhaps the introduction of the Flagyl and Augmentin will either assist the 6MP to do its job or at the least buy you some time before moving to the next step. My son, although much older than your Lucy, was on Flagyl, Augmentin Duo Forte and Imuran for a number months and it helped to stabilise his condition in the lead up to surgery. It didn't change the outcome but it did give us some breathing space.

Remicade is renowned for being very successful at healing perianal Crohn's and under a different health system may have even been a first choice over 6MP.

I hope that the current treatment regime does indeed kick in hun and provide relief for your little girl very soon, bless her...:hug: I should have said that 3 months is often a minimum time frame in which 6MP becomes fully therapeutic as for some it can take up 6 months.

I so know how you feel about your other daughter polly. I had the same fears and doubts about my son. I think you are doing the right thing in acting on your instincts hun. It is something you will never regret. I hope that Kate is okay hun and it turns out to be nothing. Good luck!

Do keep us posted on how they are both doing.

Thinking of you! :heart:
Dusty. xxxxxxxx

 

[izzi'smom]

Oh, Polly...
THe decision to put Izz on Remi at 4 was a tough one...but I am glad that we tried! She did super with the infusions and is hoping to go back and visit the next time we go.
WHen you visit your GP, can you ask that they draw an IBD panel? DS had some diarrheal trouble that had me concerned a few months back...his bloodwork showed no infammation markers, setting my mind at ease without an extra visit.

Hoping things settle for you soon...(((HUGS)))

 

[Sascot]

That is such a shame when they are so young. Sorry to hear the meds aren't helping. I agree - maybe the addition of the flagyll and augmenton will help the 6mp to work better. Hope whatever happens she starts to improve soon!

 

[imaboveitall]

Sorry to read about little Lucy still doing poorly. Another preschooler on here...I hate it. :thumbdown:

I'd suggest EN in my zealot way but I know it doesn't help perianal disease much. Remicade does and if it were me, as scared as I am of all the drugs, I'd do it. She needs her childhood back, pain free. I make decisions about Violet based largely on QOL. Not saying that's right for all, just my way of doing it.

Love and hugs, dear. I know how you feel, even though V isn't a tiny kiddy. How much worse it has to be for you mothers with small ones. :frown:

 

[polly13]

Thank you all so much for your kind responses - I am really encouraged that you all understand the dilemma that we have. I really appreciate what you have all said and I do know that the remicade is really the lesser of two evils and am much more comfortable having the conversation now and ultimately going with it if that is what Lucy needs. Thanks again, I dont know what I would without this forum sometimes.