Here we go again

[polly13]

Here we go again -update

Hi all

This is probably a little bit of feeling sorry for myself and Lucy post. Lucy started 6mp in January this year and is now on it about 8 weeks, when she started teh 6 mp she was taking prednisone, we have tapered and finished the prednisone about 3 weeks ago. Lucy was a different child, she was in great form, looked healthy for the first time since she was a small baby and was even going to the bathroom to poo on her own............ until this week, it all started again, the crying, screaming and bleeding doing a bm. I spoke to the GI team yesterday, who feel it is probably because the 6 mp hasnt kicked in yet an have put her on a course of ciproxin for the next few weeks to get her up to the 12 weeks stage with the 6 mp. Her disease is perianal.

I am absolutely gutted, I really thought that this time she was in remission but clearly she is not. I just dont know what the next steps are.

 

[imaboveitall]

Aw Polly, gutted is how I roll...I know how you feel, it's the worst. Especially when you get all excited thinking something is working...or going to work as we do every two weeks these days when poor V does the Humira shot. :stinks:
It sounds like your dear girl responded well to pred and symptoms surged back when she stopped it...a common enough story.

I haven't experience w/Violet with pred but I do with what you're feeling so that's all I can offer...love and understanding :hug:

 

[DustyKat]

All may not be lost hun. Easier said than done I know when your baby is suffering. :hug:

Hopefully the cipro will settle things again and when the 6MP does become fully therapeutic she will gain remission. It is promising that she had no symptoms for quite some time when the Pred finished.

Waiting for these drugs to kick in is just the pits. Sending loads of love and luck your way...:heart:

:heart:

:heart:

Dusty. xxx

 

[Tesscorm]

Polly,

So sorry to hear that Lucy is suffering from symptoms again! I hope that the Cipro can quickly bring things under control. :ghug:

I can't imagine that there's anything harder than to watch your child suffer and not be able to help immediately. But, as Dusty said, 'all is not lost', hopefully, it is just a short setback and you will soon see her well and in remission. :ghug:

 

[Devynnsmom]

Poor Lucy, I hope the cipro works soon and she is feeling better.

 

[Dexky]

Polly, my son was put on Asacol concurrently with his pred taper and I really believe that it helped bridge the gap between the end of the taper and 6mp becoming therapeutic. He never had any rectal issues however. There are mesalamine suppositories I think. It couldn't hurt to ask. Good luck!

 

[polly13]

Thanks Dexy, I am not familiar with those drugs that you mentioned, however a quick look up tells me they are for the large intestine and as lucy's disease is perianal they are probably not suitable.

It is really hard to describe Lucy's chrons as she is normally ok when she is not doing a poo, she gets progressively weeker and sicker looking as the days go on but she will have no outward signs of being ill. Her problems start about half an hour before a bm, she starts to get figety and keeps telling us she doesnt have a poo, she will will then scream for about 5 minutes before and upto half an hour after the bm. Thankfully I havnt seen any blood since thursday but she is still screaming uncontrollably when making her bm. Thankfully it is only one BM per day at the mo.

thanks again for your continue support .

Polly

 

[kimmidwife]

Polly,
That sounds so rough for her! I wish I had some words of wisdom. Thinking of you and wishing the medicine kicks in quickly.

 

[Steve S]

So sorry to hear this, Polly.

Our son (8 years old) also presented with perianal Crohn's. He's had two doses of Remicade and so far, so good. I pray your Lucy starts responding quickly and effectively to the meds.

Steve (Nate's dad)

 

[polly13]

the Cipro seems to be working so fingers crossed.

 

[DustyKat]

Thanks for the update Polly!

I hope the Cipro is doing the trick hun and continues to do so!...:goodluck:

Dusty. xxx

 

[imaboveitall]

AWESOME, Polly, thanks for updating. :thumright:

 

[izzi'smom]

SO glad to hear she is doing well!!