Lucy update GI appointment today

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polly13

polly13

Joined
Jan 28, 2012
Messages
566
Location
Tipperary, Ireland
So we had our GI appointment today. Lucy's bum is still quite bad, so we got three options
1. Try mexotrate by weekly injection but he is concerned it will make her sick and she will feel worse than she does now
2.try remicade but is concerned that because she is so young she will have very little chance of coming off it and he is somewhat reluctant
3. Perform surgery which disconnects the bowel from the rectum giving her a stoma and allowing the anus and rectum to heal but there is no guarantee that it will work and he is concerned that it is to radical for now

So he is having a case conference with his colleagues tomorrow and will ring us tomorrow afternoon with his best advice. My husband and I have decided to take whatever advice we are given and go from there. I can't help feeling we are between a rock and a hard place. Anybody else ever have such grim options

Polly
 
Sorry I know thing about this YET.
Hugs to you both.
Poor Lucy! Tell her my Grace sends her hugs.
 
Oh so sorry Lucy is having such troubles. I have heard members say that they have done better with the MTX injections than the MTX pills as far as the making them sick side effect. C is on Remicade but he is so much older than your Lucy so I can understand the apprehension. We have no experience with surgery but it really sounds as if your GI is on top of things and willing to go as far as needed to get the best possible information on the options for her so I know that has to give you some comfort.

Sending hugs and support your way!!
 
Sorry to hear she is still struggling. Sounds like a good plan to trust whatever the doctor decides in this case. Whatever it is, I hope it really works well!
 
Hugs we were there with DS this summer choosing between Mtx and remicade.
We did weekly injections for DS for 8 weeks.
The day after was hit or miss with fatigue.
DS was on folic acid daily to help.
We did not Put DS on remicade at first since as you his Gi was concerned about his age and the unknown about the long term in someone so young.
In a way I am glad we tried Mtx first so we know the med doesn't work for him but it was 8 weeks where he got worse and 12 weeks of steriods I can't take back.

The reality is finding a drug the works is key.
Keeping a drug working is another.
Ideally she would be on it for life but reality is it will probably stop working at some point ( sooner rather then later given her age and changing immune system).
We look at remicade as our miracle - trying to keep it going but always on the look out for the next set of big drugs that also work miracles.
Hoping DS can stay healthy on remicade until something better/ safer is there.
 
Thinking of you all..... Choices are tough sometimes. It's like choosing between the witch and the devil!!!

It sounds like you trust your GI team which is awesome.

If you go the MTX route, Claire took it via injection at age 4 and I can tell you what worked for us.

Big hug -

J.
 
So sorry about the rough time. Yes, sometimes the choices are like being hit with a bat or a golf club! Neither sounds like fun!

Knowing what I have been through lately, I would opt to try the methotrexate first. I would feel the need to try something before surgery. My son has been on methotrexate since June and he has, dare I say it, possibly achieved "remission". Knock on wood!!! With her being so young, I would try to save remicade for later if possible. As for side effects, we see some hair loss and he is tired the 2 days following the shot. We manage the tiredness by giving the shot on Saturday. Then he is tired sunday and monday but good for school the rest of the week. Injecting him is not that bad.

I hope you find an answer that both works and makes you feel comfortable with your decision.
 
Hi everybody and thanks for your words of wisdom and support, so the update is Lucy is having her first infiximab (remicade) infusion on the 20th of December . My husband and and I believe it is the right decision so hopefully it works for her
 
(((Hugs)))) to your sweet little Lucy and prayers that Remicade is her miracle drug. Hoping it gives her some healing and relief. There are so many new drugs in the works that I am sure as she gets older we will all have some easier choices to make. :)
 
Hey hon...
Can't remember how old Lucy is but Izzi was on Remicade at four. Without diminishing the difficulty of this decision, remember how many IBDers Remi works miracles for...I am hoping that Lucy is one of them!!!

While it didn't work for us, I'm glad we chose to try it. It is imperative to weigh risks and benefits but the severity of the side effects can be so scary-hopefully we can remember to keep in mind that only a very small percentage of kids experience them.

Good luck with her first infusion (we brought a small prize for after the IV was started-the first day was a long one and she was sleepy from the Benadryl they premedicated her with). THere was a large playroom but we brought a few things from home just in case, plus her blanket for comfort. :ghug:
 
Thanks angie I know you are right as with anything in relation to crohns ther are no guarantees that remi will work but if it does happy days , our lovely little Lucy gets to live her life as a normal four year old should and that's what we need to focus on. I really hope it works Lucy has been ill since sha was 9 months old, she has never known what it is like to be well I just look forward to the day that she is well so she can be what she wants to be. I also made a decision today that I am going to focus on the here and now and not waste any more time worrying about something that will probably never happen. Thanks again to all on this forum I don't know how I would cope without you all
 
WHile I completely understand the "here and now" sometimes it's hard. I know. We just want our kiddos to be healthy, and we want them to experience life as any kid should. We also don't want to make a decision that may make their life harder down the road. But we know, and they will too some day, that we are making the best informed decision we know how to make, and of COURSE we have their best interests at heart. :heart:
Wishing we could have a playdate...she looks like such a sweet doll! If we ever make it to Ireland...lol!
 
It is a hard decision but it sounds like the right one to try. Let us know how she does! She is so sweet looking in her pictures! Someday we will have to have a crohns forum meet up and all meet somewhere! My friend who grew up in Ireland is back there this week for her brother's wedding. I would love to visit Ireland someday.
 
Sorry I am late to this Polly...:hug:

I have not been faced with the decisions you have but had I been I too would defer to the experts just as you have. :)

I hope Remi does the trick for your little princess and she finds lasting peace and relief, bless her. :heart:

Sending loads of love, luck and healing thoughts your way.

Dusty. xxx
 
Well angie and kimmidwife you are welcome to tipperary any time. We are having a huge national festival next year called the 'gathering' if anybody is interested.......

Thanks again for all your support- I had a little talk with Lucy last night to tell her about her medicine - she never ceases to amaze me - she just asked did her GI think it would make her crohns go to sleep forever- doesn't it just break your heart but kids are so accepting of everything that is thrown at them
 
They surely are amazing and oh so insightful. Bless them all...:Karl:

Dusty. xxx
 
So cute.
It has been very good for DS .
For him his crohn's did go to sleep and you can tell your little one about it.
 
That is so cute! I hope this works for her. Keeping my fingers triple crossed. (I will see if I can convince my husband about a trip to Ireland)
 
I would love to come to Ireland as soon as a land bridge forms I'll be there.

I hope the meds work and her crohn's goes to sleep! Cute and sad.
 
Her first infusion is Thursday 20th am kinda worried as she had a nasty cough since yesterday so off to the go with us today. She's doing we'll enough at the moment her appetite is definitely up but that's probably cause we stopped the cipro. Otherwise all well.
Farm wife doubt we'll ever see a day that we can drive between Ireland and the US!!!!!
 
Well polly13 it's my thought that counts right?

I'm glad she's eating and I hope the cold clears up soon.

HUGS
 
O's never been sick but there was a girl hacking up a very phlegmy lung with a thick disgusting discharge coming out of her nose and weepy as all get up getting infused at the same time once. It was early on in O's treatment and I was freaking out!
 

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