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  1. malorymug

    Miraca

    Hi. I'm so excited that Janssen is paying for the Miraca labs to test Remicade levels and antibodies twice a year. Are you guys all doing this? So much better than shelling out money to Prometheus. We met a 20something year old with the same Miraca box at Quest and he is testing envyvio levels too.
  2. malorymug

    Sudden blurry line in one eye?

    I was going to post this in EIM section, but there is more traffic here. My DS just woke from a nap with a thin blurry line going across his field of vision in his right eye. No pain, no other changes. He is blind in his other eye from a traumatic injury a few years back so pupils are already...
  3. malorymug

    Hold my hand for a second opinion

    You all have been telling me for months that we need a second opinion. I have resisted; why? It feels like I'm being disloyal and it seems like so much work. But, now, I've had it. I don't believe we are getting the best care and that is what matters. My boy has been in the hospital for a...
  4. malorymug

    10 days with fevers

    Ds has had fevers (up to 103) in the evenings for the last 10 days. I Talked with GI several times during that time and they told us in the absence of other symptoms treat with Tylenol and go to Remicade infusion today. The Infusion center wouldn't even let us in the door with a 102 fever...
  5. malorymug

    Paperwork tips and tricks

    I'm lousy at paperwork. I'm looking for your suggestions on keeping better organized. I keep a food diary on myfitnesspal.com (when he is feeling bad) I have a spiral bound notebook for notes I take at the drs. office I have a 7 pocket folder for insurance EOB, pharm receipts, etc. And...
  6. malorymug

    Gut too clean?

    I ran into this article this evening. I thought it was an interesting theory. http://www.forbes.com/sites/quora/2016/04/11/meet-the-parasites-that-might-cure-crohns-disease-ms-and-more/#1cf57572e3f6
  7. malorymug

    Support Group bust

    Last Thursday I finally got my son to go to a monthly crohn's support group at our children's hospital. It was "teen night" and I thought it would be the perfect time for him. But it wasn't. It was a bust. He never made eye contact with anyone and I don't think he talked. There were 4 girls...
  8. malorymug

    EEN for colonic disease

    My son's GI says that EEN isn't very effective for colonic disease. He says we can do it if we want but he doesn't think we will see the benefits we want. He isn't very forthcoming with information right now, I guess we are in the wait and see phase. We go in for another MRE on Tuesday to see...
  9. malorymug

    Tail Bone pain

    DS has had nearly constant tail bone pain for two weeks and prior to this episode, on and off for the last year. I have been attributing it to EIM arthritis but now I'm wondering if it is a sign of active bowel inflammation. Last time I mentioned it to the GI was about 9 months ago and she was...
  10. malorymug

    Annual TB test?

    Hi, do your kids on biologics need annual tb tests? I thought it was just prior to beginning a biologic? We have to get a TB test again. Blech. If you recall, they are a pain because the quaderferon gold comes back inconclusive because of inflammation, and he has nodules on his lungs so the...
  11. malorymug

    Ugh School

    We had such a great summer. My 14 yo was gaining weight, seemed less fatigued, actually started doing some activities (swimming, biking), and life was almost normal. 2 weeks into school he is back to sleeping 12-14 hours a day, 3 days of diarrhea, 5 lb weight loss, and overall miserable...
  12. malorymug

    Methotrexate giving us trouble

    14 y.o. started on Remicade and MTX in January and for the most part he is doing well. Gaining weight and feels better 50% of the time. And his blood work is beautiful. He takes oral 7.5 mg of Methotrexate once a week. I think the MTX makes him feel bad (fatigue and lack of appetite) for...
  13. malorymug

    Lung Involvement

    I guess I knew this post was coming, and it is better than TB, but it is nearly official, my boy's crohn's disease is affecting his lungs. We have to rule out two fungal infections, histoplasmosis and coccidioidomycosis, and I pray we rule them out. Can't stay on biologics with fungal...
  14. malorymug

    Supplements/Nutrition

    I'm on the medication bandwagon. My husband and his mother aren't. She believes very strongly in holistic healing and has sent us a series of supplements that she calls "nutrition". Company is Standard Process. They claim it will promote intestinal healing. They are Okra Pepsin E3...
  15. malorymug

    Another kid switching to Remicade

    My boy is switching from 6mp to remicade, with mixed emotions. We went into the appointment knowing that his health wasn't great and that we didn't want this to be the new normal (lost weight, fatigued with lots of joint pain). Reading so many success stories about remicade, I really wanted it...
  16. malorymug

    ? about genetic testing

    Are your kids getting genetic testing through the GI doc or on your own? When going to the 23andme site, they say they are no longer doing medical testing. What does the genetic information tell you?
  17. malorymug

    Repeat Scope question

    Hi all. I can't believe it is time for repeat scopes! My son (13) is doing really well on 6-mp and we are ready to see just how good. I had my hopes up too high. I'm disappointed to report that there are still ulcers, redness, and white bumps (??). The doc assures me that it is looking...
  18. malorymug

    Improve Care Now

    Hi. We just got all signed up for this research/database study. I really like the idea of a large pediatric database of IBD and a standard protocol for treatment. It feels like we are getting the expertise of a lot of doctors including our own. Are you all participants...
  19. malorymug

    How to explain the prednisone "moonface".

    It is my son's last week at middle school. He is in full "moonface" thanks to prednisone. Some of his peers are asking him why his face is so puffy. He and I thought it would be fun to brainstorm fun retorts to these kids. We didn't get very far: "I had marshmellows for lunch" "I must have...
  20. malorymug

    How much to share with kiddo?

    I have a very intelligent and responsible 13 year old boy recently diagnosed with CD in April. We have been fairly open with him about crohn's disease, although not listing the worse case scenarios. He is on his second week of 6-mp and some common side effects are popping up. I'm not sure...
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