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Cheryl - I hear ya. Claire is the first at Vanderbilt children's. I am not 100% confident that the entyvio (vedo) eliminates the PML risk based on what I've read. Read the two paragraphs before the FDA medwatch #. http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm398065.htm Now...

We do our second Stelara dose Friday and these words are encouraging!!!! I did not want to hold out for Vedolizumab. I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval. I'm just not ecstatic about it having the same mechanism - simplistically speaking...

We do our second Stelara dose Friday and these words are encouraging!!!! I did not want to hold out for Vedolizumab. I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval. I'm just not ecstatic about it having the same mechanism - simplistically speaking...

If it's a single vomit (like Claire used to do in the middle of the meal and then finish eating), I don't blame you for waiting on the phenergan. BUT if it's nausea, bouts of vomiting and misery, give that baby the phenergan and let him (and you) get some sleep. If you don't like the...

When Claire was little and got Enbrel 2x weekly, Tuesday was Enbrel day and Friday was Enbrel and MTX. We were instructed, at the time, not to give Enbrel when there was a fever but to not d/c MTX without doc advising and that she could have that - fever or not. Now that was a long time ago...

You all have got to think I'm crazy. I AM crazy but I'm not insane....... This week of Broadway musical camp is going well BUT we have only been off the meloxicam 2-3 days (I'm losing count) and tonight, she was having trouble raising her arm.........damn shoulder. I have emailed the...

Oh what a difference a day makes (or a week lol). We did not do pred. She did improve on meloxicam. EN feedings are going well and we are thrilled to see pink cheeks. Typically she ONLY has color in her face when she has a FEVER. Seriously!!!!!!!!!!!!!!!!!!!! I'm trying to take my own...

I hope things went well today. I was about to add my two cents and realized your appointment was TODAY. I hope that you have a plan, an order or two or even better, a ped GI referral. Hugs, J.

Jane - definitely like Mehita and MLP said. Gotta take one step at a time. The what-ifs can make you mad. You have to do what is working for your baby and know that you will face the next challenge IF it arises. No side effects are chiseled in stone. Hugs, J.

Claire was 6 at dx and I will echo what everyone else said. Scary is relative. Those little insides have a LONG way to go! You want to preserve his body by stopping the disease. Love your heart..... While some foods aren't easily digested and irritate kids while they flare - they didn't...

MLP is a genius (as usual :-)) - I think mail order is a fab idea. :-) Saves money and no extra packing!! J.

I'd do it. Better to get the "everything looks terrific" and know not to worry (at least for a day or two :-)) than to not do it and wish you did. Hugs, J.

Missing a week isn't a crisis. Of course, like anything it has to build to becoming therapeutic. Claire's doc always wants us to get preservative free. However, at one point, there was a shortage and he agreed to us using the other until preservative free was available again. Hugs, J.

I know you'll be digging plenty deep. Here's an easy start although it doesn't get into type I, type II on the peripheral arthritis. I'll see what else I can find for you at a glance. http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf Deeper...

If he's absorbing okay, then you will do fine with pills. I'm so sorry there's another thing to absorb. It's crazy how we hunger for answers but sometimes when you get them, you're left feeling shellshocked. Claire has done MTX off and on for years. Most recently on for almost 3 years, I...

That's good to know. I emailed him back and asked about a single injection possibility!!!!! J.

Week 4 (second dose is next Thursday). Claire spent 6 months on steroids following her crohns dx. 40mg a day most of the time. Everytime we tried to wean, she started to bleed. She sees those pictures and unfortunately, remembers. And she was precious to me but looked like a completely different...

Could we get more than a week without drama? Apparently not. Feeds are going fine. Three days ago wrist started swelling and pain. I let the Rheum know and we agreed that we would restart meloxicam. She's had three doses but things are getting worse. Now mcp joints and fingers are swollen...

ecstatic about the 17!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :ghug: :ghug: :ghug: J.

where she needs to be