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  1. kimmidwife

    3 for the price of 1.

    Hi all, I haven’t been on in a while. I have been taking a break. Life has been rough. We just found out we might have a 3rd kid with Crohn’s. My son has not been having symptoms but wasn’t growing. We went to the endocrinologist for an evaluation and they did a fecal calprotectin as part of the...
  2. kimmidwife

    Confusing Fecal Calprotectin Results

    Hi All! I have not been on the forum in a while. Life has been really crazy. Good news my older daughter is doing well on Stelara. Her Fecal Calprotectin is nondetectabke for the first time ever! My little one on the other hand is having a lot of stomach pain and joint pain again. Her Fecal...
  3. kimmidwife

    Statistics on people who were able to maintain remission off of meds.

    Hi All, I am having a little debate with some people on whether really going off of meds once you get into remission is a viable answer for our kids. (I say it is not and they are arguing that there are some people who are successful with it) And whether you can maintain remission just through...
  4. kimmidwife

    urgent, Need some advice on my younger crohnie

    Hi all, I need some advice. About 3 weeks ago my younger daughter with crohn's started complaint of stomach pain. Her doctor did labs and a fecal calprotectin. He also started her on Budesonide, Metronidazole, and Bentyl for pain. All her labs came back normal and the fecal call. came back...
  5. kimmidwife

    Possible new drugs on the horizon

    This article discusses a new biopharma company in Israel working on some really promising drugs for Crohn's. It includes a drug that works on the MAP bacteria that is currently in clinical trials. http://www.timesofisrael.com/kibbutz-duo-turned-entrepreneurs-on-quest-to-whip-gut-bugs/
  6. kimmidwife

    An important read

    This article is a little scary. I debated on sharing it but I really feel it is important for all of us as parents to be aware that this goes on in the medical community and to must be careful. I suffer from a rare disease and unfortunately a child who suffers with the same illness was taken...
  7. kimmidwife

    Support group for parents of older teens and young adults with IB

    Hi everyone, I wanted to invite you all to join a new Facebook support group called IBD in Older teens and young adults. A support group for us parents.
  8. kimmidwife

    Two distinct subsets of Crohn's disease found

    Very interesting article. Might lead to better treatments for our kids. https://www.sciencedaily.com/releases/2016/10/161014135352.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fcrohns_disease+%28Crohn%27s+Disease+News+--+ScienceDaily%29
  9. kimmidwife

    Bizarre incident, possible allergic reaction

    Okay Gurus, I wanted to see what your thoughts are on this, my Caitlyn, my older daughter with Crohn's came running up to me this morning (I was still in bed as I had had a rough night not sleeping well) she was bright red from head to toe and crying that her body felt like it was on fire. I...
  10. kimmidwife

    Youngest daughter in a flare

    I just got a call from the doctor that the Apriso is not working any longer. Honestly I was shocked it worked at all. I was hoping maybe she would be one of those really lucky people who stays mild their whole lives. Her fecal calpreotecfim is now back up just under 1000. He is starting her on...
  11. kimmidwife

    Shake Supplements dairy and soy free

    Hi All, My friends daughter was recently diagnosed with Crohn's disease. She has lost a ton of weight and now weighs only 96pounds. They want her to drink a supplement she is trying to find one that is palatable. She is allergic to soy and dairy. I was hoping someone here could reccomend one.
  12. kimmidwife

    OT, wield blister from bug bite?

    Not sure if this is related to my younger daughters Crohn's disease or not. About two or three weeks ago my little daughter came home from a friend with a small pus filled blister on her ankle. She said it burned. I called the doctor they said put cream and a bandaid on it and see how it looked...
  13. kimmidwife

    Pentasa and headaches

    My younger daughter who is on Pentasa keeps complaining of headaches. I am thinking ot must be a side effect of the Pentasa. I looked it up and it said mild headaches might be a dose effect but hers seem more then mild. Anyone else's child on Pentasa and get headaches?
  14. kimmidwife

    Urgent, severe neck pain upon awakening

    Caitlyn woke up with severe neck pain this morning. She does not have a fever. Tylenol and half a dilaudid did not help.She does not want to go to the ER. Any ideas what might cause this?
  15. kimmidwife

    Betaine HCL

    With all the bad things coming out about PPIs and Zantac type meds I am looking to switch my daughter who has crohns and myself (no IBD just severe reflux issues) to a more natural way of treating it. I ordered a Betaine HCL 500mg supplement that also has fenugreek as we can't do one of the...
  16. kimmidwife

    Link between long term PPI (prilosec, nexium, protonix etc) use and dementia

    This is frightening, has anyone else heard about this? So many of our kids are on these. http://www.forbes.com/sites/robertglatter/2016/02/16/proton-pump-inhibitor-use-linked-to-increased-risk-of-dementia/#a6b13735260f
  17. kimmidwife

    Sucrose/Maltose/Lactose Deficiency

    I thought this was important for all parents on this forum to know about so I am starting a new thread about it. As some of you may know. My middle daughter was diagnosed as having Congenital Sucrose/Maltose/lactose Intestinal Deficiency. She was diagnosed through biopsies during a colonoscopy...
  18. kimmidwife

    Research study

    Caitlyn recieved a letter today asking her to participate in a research study. This is the study. She wants to do it but it says you cannot be on biologics and I think Entyvio even though different from remicade is still considered a biologic? https://clinicaltrials.gov/ct2/show/NCT02240108
  19. kimmidwife

    Immune disorders and crohns

    This is a really interesting article. For our newer members, if your child has not had an immune work up it is important to ask your doctor to refer you to see an immunologist to rule out an immune disorder. There are a number of immune disorders where IBD is actually a secondary disorder and...
  20. kimmidwife

    Interesting article about possible new treatments on the horizon

    http://www.nature.com/mi/journal/v7/n1/full/mi201373a.html
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