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Bless your heart. Like Brian's Mom, I find that everytime I think we are "smooth sailing" something rears it's head. And the symptoms don't always correlate. When Claire's stools are fine, sometimes there are mouth sores. Sometimes her joints are bad when nothing else is bad. I tell my...

Yes Max's Mom - a cure would be LOVELY (understatement :-)). EN is going fine. Stopped Meloxicam again per Rheumy after 7 days. Last night started grumbling about thumb. Here we go again, I'm afraid. I HOPE I'M WRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! J.

486 :ymad: We took the 6MP at bedtime. I know it's not Imuran but it's close. :ylol2: No nausea! J.

Awesome! :hug:

Took about a week. Amended annually. We still bring MD note when we miss school for visit and/hospitalization but it doesn't go "with 504". They handle that documentation like they would for any other kid. Her plan, however, allows for more absences. J.

Claire is also on MTX.

:( j.

Maya142 - yes - the hip is greatly improved. The shoulder is slower. She is RESTLESS and irritable but better. And, EN is going smoother every night so I'm trying to focus on the positive!! J.

My daughter started Thursday (3 days ago). Due to neurological complications with TNF blocker, this is our first biologic since 2009. J.

Brian's Mom - it was a 45mg injection in a small prefilled syringe. Claire said it burned. The plan for now is Week 0 - 45mg Week 4 - 45mg Week 8 - 135mg Week 12 - 45mg Then 45mg every 8 weeks. I'm gonna check out the Stelara page. She's in there sleeping peacefully.....EN running away...

Long story short I'm mad at the GI office. The trip was pointless and they said the insurance hadn't approved the Stelara. I knew they were wrong. Called insurance who said they'd already approved a year and stayed on phone while I got them to send nurse back out. Then come to find out the...

Maya - We didn't even talk crutches. I think everyone is hopeful that this will be a few days like the "bad thumb". If it isn't, we are going to have to come up with something. I can't haul her everywhere when she starts to crumble. Especially because she can't do piggyback or wrap her legs...

I know it's beyond basic but have you tried keeping her little bum coated with Aquaphor? And of course, carrying the wipes to avoid paper? I hate to hear she's hurting. :-( J

Short update: Best news is that on third attempt we got tube in without drama tonight. She is over there with the Vital running right now. Thank God! Worst news is that after frantically messaging DustyKat and a sleepless night (Thanks Dusty :-) - glad I caught you awake on the other side of...

Just my two cents..... I think it is okay to say "Let's keep an eye on those. We want your medication to work for you but sometimes other issues can come up. If you notice anything else, let's track it so we can talk with the doctor about it." Now will that work for 13? I'm not sure? It...

Clash - They told us to take the wire out before we put it in???? Should we have put the tube in first?????????????? J.

Thanks Maya. I'm a mess. Still. Ugh.

:cry: Tonight was a big ----ing disaster. I couldn't get the tube in like we did in the office. She threw up all over me and her carpet. Lots of tears. Lots of drama. I was being a drill sargeant (unsuccesfully), bribed (unsuccesfully), threatened consequences (unsuccessfully). She will...

I called. Courier arriving between 8p and 10p tonight. No home health unless we aren't comfortable, Farmwife. Can't remember the pump brand. But walgreens infusion providing it. J.

Well I need a new shirt that says, "I SURVIVED MY DAUGHTER'S NG TUBE INSERTION CLASS". :ybatty: The RN did it first. Claire did great but was mad as hell. RN said best ever. Gave her a break - listened to her talk about how she would take steroids forever and do enemas because she was "never...