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  1. Patricia56

    5 year Remicade study results may answer some ?s

    First published study that I am aware of that followed kids on remicade for 5 years. Found linear growth catch up to normal by year 3 in Tanner stage 1/2 patients who started remicade within 18 months of diagnosis. Found sustained response improved by simultaneous use of immunomodulator for >=...
  2. Patricia56

    Badger doing great

    Sorry for the lengthy absence guys. It's been a crazy 3 months here. But I am thrilled to say that Badger is doing well. His labs are almost all back to normal and his energy and activity levels are definitely back on track. He's doing remicade every 4 weeks at 5 mg/kg. Next time we will back...
  3. Patricia56

    Adrenal insufficiency following use of steroids

    This study of 59 children with IBD found that up to 20% developed adrenal suppression following use of steroids despite tapering the dose. They found an association between length and dose of steroids and with previous use of steroids and low cortisol levels. They believe that their results...
  4. Patricia56

    Things not going in the right direction here

    Badger has had pain bad enough to take his pain meds for 3 out of the last 7 nights. And last night he had an episode of urgency where he almost didn't make it to the toilet. No diarrhea yet but he's still having blood in his stool and he said last night was worse. We are only 2 1/2 weeks out...
  5. Patricia56

    Supplement EN helps sustain remission

    http://www.biomedcentral.com/1471-230X/14/50/abstract A retrospective study showing Maintenance treatment options for paediatric CD in the first year following diagnosis after induction of remission with EEN: supplemental enteral nutrition is better than nothing! This study examined remission...
  6. Patricia56

    Recent Recap of benefits, risks of withdrawal, risk of lymphoma

    As with all scientific studies, this one is subject to assumptions and estimates that may be flawed. This article attempts to review all the evidence regarding the risk of lymphoma through 2011. This requires the review and integration of a very, very large body of research. So view the results...
  7. Patricia56

    Remicade at 4 weeks; managed care:(

    Badger hasn't been doing well. He finally gave in and asked for home-hospital services because he just couldn't get to school consistently after he was discharged 3 weeks ago. At first it was "just" the pancreatitis pain and nausea. Then last week he started having bloody stools again and new...
  8. Patricia56

    Remicade #3 but Pancreatitis still a problem

    We go tomorrow for Remicade dose #3. So far Badger's CD symptoms have vastly improved and we expect this dose of remicade to kick him into full remission. Now if it would just do the same for the pancreatitis... Since getting out of the hospital a week ago Badger's had 3 out of 7 nights with...
  9. Patricia56

    USA Tax tips

    Here are two things we do to legally maximize our medical deductions. Unfortunately since they raised the floor to 10% this year we just missed getting to take any medical deduction. 1. Mileage/tolls/parking -- this can really add up so keep track of your appts and treks to the pharmacy...
  10. Patricia56

    Early biologic use produces better outcome at 1 year

    Also posted this link in research thread: 1 year outcomes better in children with inflammatory luminal CD started on antiTNF alpha (biologics) within 3 months of diagnosis than children started on immunomodulators or no immunomodulators within 3 months of diagnosis. Early bioligic use produced...
  11. Patricia56

    Home from the hospital - again

    Badger was released today on a strict low fat diet (20 gms fat/day). Follow up labs on Thursday and again next Wednesday with follow up clinic visit/remicade next Thursday the 20th. It was such a relief to have his lipase levels drop dramatically once he'd been off food for 3 days. He was a...
  12. Patricia56

    Pancreatitis from Remicade?

    Anyone out there have a child who developed pancreatitis as a side effect of Remicade? Or know of one? Thanks for any help on this one. The timing of Badger's pancreatitis is suspicious but there are virtually no cases that have been identified as being associated with Remicade. But we really...
  13. Patricia56

    Badger back in hospital

    Despite a "normal" MRCP and ultrasound Badger's amylase and lipase have continued to rise to a fairly alarming level. I think his amylase is around 800 and his lipase 900 as of yesterday. So his GI called this morning and ordered us back to the hospital for a more thorough evaluation and some...
  14. Patricia56

    Pancreatitis

    New complication for Badger - pancreatitis. Waiting to hear when they will get an MRCP scheduled. This is new territory for us (darn) and I'm curious to know what recovery has been like for others. Also if you've been through an MRCP what we need to know about that. At this point we think it...
  15. Patricia56

    Update on Badger - bad news/good news

    So Badger turned 18 on Dec. 20th!!!!! Unfortunately he also seems to have started the worst flare of his life about the same time. He waited 6 days to tell me he was having severe bloody D. Poor kid- he was hoping it was just going to go away. By the time we got in to see GI 6 days later it was...
  16. Patricia56

    Update on Badger

    Knocking on wood here as we cruise into our 3rd year of remission on MTX. Badger was diagnosed in 2006 at 10 and it took about 2 1/2 years to get him into remission. He was on Humira and 6-MP. Partway through we switched to Humira and MTX. Once he had been in solid remission for about 1 1/2...
  17. Patricia56

    Kangaroo Pet Pump Portable pack giveaway

    I have a lightly used portable pack that is designed to hold a Kangaroo Pet Pump. If anyone here can use it PM me. If you have a Kangaroo Pet pump but haven't seen this accessory, it's one of those things you didn't know you needed until you saw it. It allows you/child to carry the pump around...
  18. Patricia56

    Methotrexate + Humira or MTX alone?

    I recently received the following PM and the writer has agreed for me to post it to the board. I'm sure she would appreciate any other feedback from others with experience using Methotrexate: The questions: __________________ My reply: Yes we combined the two for about 2 years and then my...
  19. Patricia56

    Camp for Kids with CD and UC in California - Last Call

    There are still a few openings at Camp Gut Busters in Central California. Here's the link http://www.ibdcamp.org/ This is a fabulous FREE camp for kids that my son has attended since he was 10. He will be a CIT (intern) this year.:yfaint: How time flies. The camp is located in Livermore...
  20. Patricia56

    Perianal Fistulizing Crohn's pilot studies

    Here are links to two pilot studies that used direction injection in the area of the perianal disease instead of systemic treatment for perianal Crohn's. One study used remicade and the other used humira. Both had good success rates but the studies were very small...
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