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Hi Julia, I got your private message and wrote back to you, but it responded that your inbox is too full and will not accept anymore messages. So I am writing to you here. You are bound to get many responses. There are many incredibly compassionate, helpful, and experienced parents of...

My daughter, C, is doing well, since our spring of illnesses. Our summer has been otherwise, uneventful, which in this arena, is phenomenal! I will take it any day. She has been on 10mg/week MTX, plus her mesalimine, and she is stable. Perhaps, not in remission, but it is a work in...

I was wondering what literature any of you would recommend for pediatric IBD? I would love to have some of the most recent reading material. I already have Breaking The Vicious Cycle, and some outdated books that talk all about Crohn's and UC. Of course, these books are mostly directed at...

Like I said, I did contact GI.... Can't wait forever, but luckily GI got back to me, and everything is fine. It is ok that she is taking antibiotics, and yes we talked about the MTX dosage being stopped for a brief period. Thank you for getting back to me.

So, yet another complication. My daughter has contracted some nasty virus/bacterial bug infection, and it of course went into her lungs and has given her a bronchial infection. Question: Has anyone given there kids azithromycin, while on MTX? I contacted her GI docs, but no response. And...

OMG, thank you so much Maya142, and Crohnsinct. Incredibly helpful. To hear about your daughters' #'s, crohnsinct, really puts it into perspective. I nearly cried reading your message, Maya142, because I know what it is like looking back at old photos of my daughter. Because there were many...

Yes, the doc at Stanford was ready to start Remicade. I wrote awhile back about holding off for a couple different reasons, and right now, it is because she is doing quite well....outwardly. And yes, her last FCP was 380. I know.....why am I not down there with an IV right now? To tell...

This all makes sense. I knew the norms, because those are posted on her results, so that is what I have always referenced. I think her docs have access to all that they saw and found out from her scope, though it was a different doc who did it. I can't see why they would not have gotten all...

[But also important to see in mind is younger children have naturally higher numbers of cal pro even in healthy subjects. Some labs will have higher cut offs for "normal" if the kids are under say 7.] This is interesting to me. I would really like to talk more about these numbers. It would...

Ok. Thank you for the feed back. I guess I just really don't want to give her injections, and that is why I don't want to go the Humira route. And, because Remicade is preferred. We definitely talked with the doc about closer hospitals to treat her. There are scant options. Redding area...

I haven't written in awhile. My daughter has been stable, but we are not in remission. We have had 2 calpro tests since we increased her mthx dosage, and the first was 126!!! And the second, was 380..... We are on the fence with starting Remicade, still. I have yet to talk to her docs...

You know, you are right about the time thing. I am really thinking about where we would be staying the night when we go to Palo Alto. And our friends are 2 hours away from Stanford. But CPMC and Stanford are not that far from each other. And yes, the traffic is such a big factor! You cannot...

Our trip to the hospital where the Remicade is, is 8 hours ONE WAY. We talked about Humira, but the IV infusions appeal to me more. I don't want to give her shots. Our doc does not allow anyone in our area to treat my daughter at her age with IV. Our area really has a long way to go in...

Hello, We had our appointment with new doc. It went really well. We like him a lot, and realize how much more he knows about children with IBD. I am so grateful for the recommendation, and for my choice to go to him, rather than back to our old team, even though it meant almost 2 more hours...

Yeah, PTSD, I live it consistently.... Really glad to hear about your son. Amazing her grew 9" in one year...WOW. Sounds like Remicade does this for many, many people suffering from IBD. I will definitely be talking about this with the doc, in a couple of weeks. I am so glad to be going...

Hello, I am back. Had to take a bit of a break. It felt good. It has everything to do with prednisone. I finally started giving it to my daughter, 5 days ago, and of course it is working wonders. We all are experiencing the relief that comes with that. I also got an appt. with the...

You are right. She is not well. I will be going to the GI doctors, and most likely doing another scope. I have lost my doubts.

I am convinced to try the steroid. Thank you guys.

Thanks for sharing your story, bethhall3434. My daughters flare died down. No blood for 10 days or so, and she is eating again, and her color is good. We are still doing a low fiber diet, which seems to have made a real difference. I never gave here the prednisone, because by the time I...

Never mind. Reading more about the differences between the two. Sounds more likely Crohn's. I remember the doc mentioning seeing skip lesions in her colonoscopy....don't remember in what part of her intestines. And even granulomas. Big sigh.....