Opinions...

[izzi'smom]

opinions...

Izzi just received her third Remi treatment. She has been off of Orapred for 4 weeks and has had what I think is a flare for 2 weeks. Her doc thinks it may be a bug.
Anyone have experience with this? Her white count is elevated and the ONLY difference between this and her other flares is that the blood is intermittent this time (I've only seen it a few times).

 

[Dexky]

What kind of bug lasts two weeks? I hope your doc is right but I'd say your mom intuition may well know better!

 

[DustyKat]

I have no experience with Remicade Angie.

The raised white cell count would certainly point an infection somewhere but it may well be as a result of a flare as you suspect.

Have they done any stool sample tests? At least that way they could try and rule out a bug as a cause and if they also did calprotectin it could confirm or dismiss your suspicions as well.

Keep us posted hun...:hug:

Dusty. xxx

 

[LilyRose]

How is it going Angie? How is Izzi going? Are things settling at all?

Best wishes,
Lily Rose

 

[izzi'smom]

The stool culture was negative. She is continuing to be symptomatic. Her doc took her off of Pentasa again. He should be consulting with our doc in Boston...I'll be harassing him soon.
We are also trying going gluten free.
However, we are eating lots of fruit and veggies.
We'll see how that works out for us.
I am trying to avoid purchasing "gluten replacement" foods and just buying foods that naturally don't contain gluten.

 

[Brian'sMom]

Angie,
Here's a great gluten free baking cookbook: "Gluten Free Baking Classics" by Annalise G. Roberts. She has a website that has a lot of info too at www.foodphilosopher.com

6 years ago we did gluten free and the grocery stores were bare of this kind of stuff but now its catching on up and down the isles! Products that have always been gluten free are also printing it on their product...really makes it easier!
Let us know if it helps Izzi's symptoms.

 

[izzi'smom]

So they are suggesting we try Tacrolimus...anyone try it yet?

 

[DustyKat]

Hey Angie,

I have seen old posts on here about it but I don't recall any children being on it.

I hope it works for Izzi, bless her...:hug:.

Keep us posted and start hassling that doc! :lol:

Dusty. xxx

 

[Tesscorm]

Good luck with the new medication! I really hope it works for her! :rosette2:

But, have you asked her GI about enteral therapy? I think you mentioned in another thread that, perhaps, the NG tube may be too much for her to handle??? But, the NG doesn't need to be removed daily. A friend of mine has a 10 year old daughter with Crohn's, she was diagnosed at 7 or 8 years old and, so far, had refused the NG tube. However, she ran into some problems over the summer, was in the hospital for 4 weeks and the GIs determined that surgery was the only solution. However, due to the inflammation, they wanted to reduce the inflammation prior to surgery (and she had lost tons of weight as well). They fed her through a picc line for a couple of weeks and then very 'strongly' asked her to please try the NG tube, she finally agreed (but did not want remove it daily...). At the end of the six weeks, she no longer needed the surgery and has just started on remicade.

I'm sorry, but I don't remember if there were any reasons, other than her age, why the enteral diet wouldn't work... but, if not, perhaps it's something to be considered???

Good luck!:ghug: