Lucy not feeling great again

[polly13]

Lucy not feeling great again update 1st december.

Hi everybody just wanted to give an update on lucy, when we saw her GI in August he increased the 6mp dose to 1.5 mg per we also introduced flagyll three weeks on and then three weeks off as up until then all symptoms seemed to go when she was on flagyll, however I am now sad to say that despite having been on flagyll for the past three weeks her bum is completely broken down again, she is crying trying to pass bms and is sore much of the time. I cant believe a full year since the start of this flare up we are back to where we started............ just dont know where we go from here.
polly

 

[my little penguin]

Hugs hon
Sorry to hear she is still not feeling well.
Would the docs be willing to look at biologics for her?
For us it was a true miracle.
Has she tried Mtx ?
When do you see the Gi next?
I would give them a call first thing Monday .
I know it took a year if trying everything else getting only a little relief before they finally switched DS to remicade .
Sending her lots of hugs

 

[Sascot]

Sorry to hear Lucy is struggling again. I don't have much experience with meds, but from reading around the forum, I would think Remicade seems to be the best in dealing with those kind of issues. Sounds like the meds aren't doing anything at the moment. Hope something gets sorted soon!!

 

[kimmidwife]

I am sorry to hear she is not feeling good again. I agree with moo I think it is time to ask your doctor about trying a different medication.

 

[Ams-Qld]

So sorry. Hope you find some relief for her soon. xx

 

[DustyKat]

Oh no Polly, I am so very sorry to hear about Lucy...:hug:

I agree with the what mlp is suggesting and asking. Please let us know how you are both getting on.

Thinking of you, :heart:
Dusty. xxx

 

[polly13]

Spoke to GI nurse today - we are going to try cipro for 2 weeks and see if there is any improvement and if not looks like we are going to have to go with remicade. When remicade came up before, we had made the decision to go with it - but she then seemed to be responding to 6mp and flagyll, but now that its on the agenda again the old worry is back, even though I know we will go with it if the GI feels its absolutely necessary. Thanks for all your good wishes
Polly

 

[polly13]

Lucy not feeling great again - update

Just a quick update, poor Lucy is no better despite the cipro, I am awaiting a script for a topical steroid foam ( has anybody tried it, cant think of the name of it!) . This is exactly where we were last year.. cant believe we havn't managed remission, despite lots of promising weeks where she seemed ok. My GI is away until Tuesday, so no decisions will be made until then and I dont think he will prescribe infliximab until we see him ( which is 4th December), however it she gets really bad he will see us sooner. She has loads of blood now with each BM - I am sure it is from the fissures as opposed to higer up in the bowel. Her overall form is good - she loves Halloween and has been dressing up for the past two weeks and last night she got to go 'trick or treating' and to a local halloween party. She has been on flagyll for so long at this stage I think her little system cant tolerate it and she vomits at least once a day. I am so worried about her at this stage, it just seems like 2 steps forward and 3 steps back. She roars and screams everytime she does a bm and asks me why her Crohn's are awake and why are they in her bum. Its heartbreaking. Its like as if Crohn's has taken over our lives, we are afraid to go holidays to get some much needed sun (Irish weather is awful) as I am afraid if I need to take her to a doctor they won't speak english or they wont be expert in Paediatric IBD and I will get the usual 'she is too young for Crohn's'. We are afraid to go to far from home incase she needs to poo and it is just too stressful for her and us if it happens when we are not at home. She was at her swimming lesson last week when she had to go, it was horrendous for her,me and everybody else there as she was in so much pain and screaming the place down. She is due back to playschool next week after the halloween break and while the teachers are aware of her illness Im not sure they will cope if she has to poo and Im afraid they will ask me not to send her which will break her heart as she loves it.
I just cant believe we are right back to where we started almost 18 months after diagnosis, I am just heartbroken for her

 

[Sascot]

Wow, poor thing! So sorry to hear she is really not doing very well. I would think December is too far away to wait for starting the infliximab. If your GI is back on Tuesday, it might be worth asking if he can see her asap and get things going so that she can start to heal. As for the vomitting, I'm not sure but my son couldn't take the Cipro after a couple of weeks - it made him feel sick and have heartburn. It might be the Cipro that's causing the problems not the Flagyl. Thinking of you!

 

[Farmwife]

So sorry to hear the update.
Hugs to you and your girl!

 

[polly13]

Sascot - you could be right about hte the cipro - hadn't even considered that (that will tell you where my head is at!). They have added maxalon into the mix to help with the vomiting and so far we are doing ok. Fingers crossed

 

[Tesscorm]

Aww, poor thing! So sad to hear of these little ones with so much suffering! :ymad:

I'm glad the vomiting seems to have improved. FYI, my son couldn't tolerate Cipro and had an allergic reaction after two doses.

 

[polly13]

We seem to be a little better the last couple of days but I havn't seen a bm since Saturday so I am dreading her doing it this evening. She has been looking uncomfortable all morning so I know its coming. On a more positive note she was well enough to go to playschool today - so she is there now and i havn't had a call yet to come and get her ........... only an hour and half to go so fingers crossed.

 

[Crohn's Mom]

Good to hear she's a little better
Best of luck tonight ~ and big big hugs momma !

 

[Farmwife]

Yes, isn't horrible we dread when they go to much and we dread when they don't go at all.:ybatty:
Grace same thing. She starts to get fidgety. Then I know it's going to be a long painful hour or longer.:yfaint:

Hugs to you both!:ghug: