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Recent content by Momtotwo

  1. M

    Blisters between toes (on Remicade and methotrexate)

    Does this sound familiar to anyone? My son has 4-5 small blisters on the side of his second toe. The blisters are not tiny like the ones I saw in photographs of dyshydriosis. They are about 3-4 mm wide and one is a little bigger. They are smooth and don't appear to be warts. He believes they...
  2. M

    Platelets- questions

    Please share what you know. To determine remission by bloodwork, must the platelets be within normal range? Do you use platelets to monitor for inflammation? How high is too high? Thanks!
  3. M

    Enteral nutrition- another question for exclusive and/or supplemental

    If your child used exclusive enteral nutrition without a tube, what brand worked best? I guess I could rephrase that and ask what brand tasted best? If your child used drinks as supplements, what brand and flavors did your child enjoy? I am going to try to add some calories with nutrition...
  4. M

    Antibodies to Remicade- are kids more likely than adults to develop them?

    I can't find any research on this topic. Have other members read anything about young kids developing antibodies compared to older kids compared to adults?
  5. M

    Remicade infusions- where?

    Where does your child receive Remicade infusions? A hospital? Outpatient center/office? Is is dedicated to treating kids?
  6. M

    Diet- where to start?

    I don't know what to do about my son's diet. He is a very thin child,and probably isn't absorbing all he takes in due to inflammation (which I learned on this forum). His stools are loose and urgent at times. He used to be on a high fiber diet due to constipation. But we stopped that. Would...
  7. M

    Pentasa never offered? Remicade, 6MP, methotrexate questions

    I am reading all I can find about the drugs from Crohn's treatments. We have a choice between Remicade with methotrexate or 6MP with methotrexate. Maybe Remicade without methotrexate also. It is overwhelming and we need more guidance from the ped GIs but they seem to be leaving it up to us. I...
  8. M

    6-MP and Methotrexate questions

    How are they given? How often? What kind of monitoring is required>
  9. M

    MRE question- stool in colon/other questions

    Would stool in the colon interfere with the reading of the MRE? Would it affect the quality? Or does the stool expand the colon the way the contrast does...therefore help give a better image?
  10. M

    Symptoms? Confusion about Crohn's colitis.

    My child has never complained of abdominal pain or nausea. Other than a few days a month ago (which we assumed was a stomach bug), he hasn't had GI complaints. He does have a history of constipation and occasional blood on the tissue, followed by looser stools in recent months (once per day)...
  11. M

    Second opinion- what to expect?

    My child was recently diagnosed with Crohn's. We are getting a second opinion at Boston Children's. What should I expect from this appointment? I have this fear that the assumption is already there that my child has Crohn's, and it will not be a completely unbiased review of his records. Does...
  12. M

    Closed forum for parents?

    Does this site have any closed forums for parents? I have more I want to ask/share. but I am not comfortable sharing on a searchable, public page? Thanks!
  13. M

    More MRE questions

    Looks like my son is getting his MRE tomorrow. 1. Any tips for getting him to drink the contrast? 2. Did you child vomit or complain of nausea after the glucogon injection? 3. Any diarrhea or other problems? 4. Any other advice? Thanks!
  14. M

    Thermometer recommendation?

    I hope I am not wearing out my welcome with too many questions. But do you have a thermometer that is reliable that you would recommend? I never had to worry much about accuracy, but now that we have the ...go to the ER if temp over....instructions, I guess it matters more. Right now I have a...
  15. M

    EEN question

    I can't find much info about how this is used. From reading posts, it sounds like some children leave the NG tube in long-term. Is that correct? But others put it in each night? Is this used instead of medications? Could a mom be taught to insert the tube each night>