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  1. pdx

    Methotrexate injection--needle question

    E decided to try methotrexate injections for her last couple of doses; she wanted to see if she would feel less nauseated, and that seems to be the case for her. She still feels a little dizzy and "off" the next day, but the nausea is better with the injection. When I picked up the...
  2. pdx

    Bowel Obstruction

    E is home from the hospital and doing really well. Her doctors weren't sure exactly what was wrong for the first couple of days, but it turned out that she had a bowel obstruction at the point of her stricture. The obstruction cleared on its own after 48 hours of IV fluids (and pain and nausea...
  3. pdx

    Scope timing question

    E's calprotectin has been sitting at 250 for a while (after being in the 400's while flaring last spring), so her doctor wants to do a scope. E really doesn't want to miss school for the scope, and the only Monday holiday in the next few months happens to be just 3 days after her Remicade...
  4. pdx

    Flare--ugh

    E has been having Crohn's symptoms on and off for a few months, along with low iron, and her calprotection just came back in the 400's. We're going to get Remicade levels and iron levels at her infusion next week, and start a 3 month course of budesonide. She's also going in for an MRE in the...
  5. pdx

    Remicade rebate program (Janssen CarePath, used to be Remistart)

    As the new year approaches, I just wanted to make sure that any new readers here know about the Remicade rebate program. If you are in the US and have private insurance that covers a portion of your Remicade costs, then the makers of Remicade will pay for your out-of-pocket costs for the drug...
  6. pdx

    New Humira formulation being used in the US yet?

    Does anyone know if the new, less-painful Humira formulation is now being used in the US? I haven't heard anything about it for a while. My daughter is still doing OK on Remicade, but I'm always thinking about the future...
  7. pdx

    Remistart 2017

    I just got the EOB from E's first Remicade infusion this year, so I went online to remind myself how to fill out the Remistart paperwork. It looks like they are calling the program Janssen Carepath Savings now, and this year you can do everything online, including submitting the EOB and...
  8. pdx

    PE class vent/dislocated kneecap

    My daughter is not having a good PE experience this school year. I won't go into all the details, but it's bad enough that we were getting ready to ask for her to be excused from the class completely for the spring semester, which starts in 2 weeks. So then on Friday she fell while running in...
  9. pdx

    Flaring and adding back methotrexate

    We stopped methotrexate last spring, and E has been on just Remicade since then. Things went well until October, when she started having a few mild symptoms about 4 weeks after her Remicade infusion. This month, she's been full-on flaring, this time starting about 3.5 weeks after her infusion...
  10. pdx

    IV Tape

    E had her Remicade infusion today. They mostly go OK lately, but the tape removal at the end remains a source of meltdown. I think part of it is just that it's at the tail end of a challenging experience, but it really is painful for her too. Any suggestions for making the removal easier...
  11. pdx

    Long infusion day

    Today was Remicade infusion day, and E was finally over 50 kg (113 pounds!) for the first time. So she was due to step up from her previous dose of 300mg. The IV bag came... with 300 mg. I asked the nurse to call the pharmacist, who told me that E's doctor would have written a note in her...
  12. pdx

    MTX + Remicade: stopping the MTX after a year?

    E had her regular GI appt yesterday, and everything is going well right now. Her GI suggested that we check fecal calprotectin and Remicade levels this spring, and if the numbers are good, consider taking her off MTX. (She will have been on it for a year at that point.) This was at the very...
  13. pdx

    Triple digit weight!

    E hit 100 pounds last night, for the first time ever! She was 5'1" and 75 pounds at diagnosis a year ago and 69 pounds a month later when nothing was working for her yet. EEN got her up to 90 pounds last spring, and supplemental EN up to 95 over the summer. She called the whole family upstairs...
  14. pdx

    Remistart question

    We didn't apply for Remistart last year, since we hadn't heard of it until after we had already reached our out-of-pocket max for the year. I'm applying for next year, and have a question for those of you who use the program. We have a 20% copay on infusion drugs, and we pay it on the day of...
  15. pdx

    Minor surgery and MTX/Remicade

    I wrote a few months ago about my daughter's scalp nevus, which needs to be removed sometime soon-ish. We met with a plastic surgeon last week, and the removal looks pretty straight-forward; E will be under general anesthesia, but the procedure is out-patient and should only take about an hour...
  16. pdx

    Thinking ahead to high school

    The end of the first school quarter is tomorrow, and 8th grade is going really well for E so far. After missing several days in September, she has had perfect attendance for October. The first high school info meetings are coming up next month, which has gotten me thinking more about next...
  17. pdx

    Buzzy question

    I just ordered a Buzzy, but I have one question for those who have used one before. E wants to use it for some upcoming shots, and I think it will help her with those. She's also interested in trying it at her next Remicade infusion, but the nurses usually use a heat pack before the IV...
  18. pdx

    Infusion center change and back to school

    Today was E's Remicade infusion, and we were at the regular Kaiser adult infusion center for the first time, rather than the children's hospital. Everything went pretty well, starting with the fact that they were willing to schedule her a few days early so that it would be done before school...
  19. pdx

    Camp Oasis update

    I wanted to write a little about my daughter's experience at Camp Oasis in Washington this summer. She was just diagnosed last December, and one of the hardest things for her since then had been not knowing any other kids with IBD. So the best part of camp for her was just getting to meet and...
  20. pdx

    Good GI visit

    E's remicade infusion was today, and we saw her GI beforehand. We have been so lucky with her doctor. We have Kaiser insurance, and Kaiser in Portland has just one pediatric GI. Fortunately, she is good: smart, kind, and up-to-date on current research. Her doctor checked her Remicade level...
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