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  1. Johnnysmom

    Humira and antibodies

    Johnny has been on Humira for 4 months now and he was just tested last week for his levels and antibodies. The message from the Dr. said his antibodies were "creeping up" and we would discuss options today at his appointment. His nephrologist said Methotrexate could make his kidney condition...
  2. Johnnysmom

    Update on Johnny- on to Humira

    So Johnny's fecal cal has been slowly going upwards. It was in the 280's last time they tested, which isn't bad but the trend was definitely moving upwards every 3 months. He is also EBV negative, so he has never had mono and apparently there is new evidence that shows that the Lymphoma risk...
  3. Johnnysmom

    Med Change-update on Johnny

    My son's fecal cal has been steadily going up for about 8 months now. He is going for a colonoscopy/upper endoscopy/biopsies tomorrow morning to see exactly where his disease is as far as severity. His GI wants to switch his meds to reduce his lymphoma risk. He is currently on 6mp and has...
  4. Johnnysmom

    Colonoscopy prep questions

    My son is doing his prep today for his scope. It has him drinking 238g bottle of Miralax at 11am over 4 hours. No other laxative meds listed. My son doesn't have D with his crohn's and was previously on Miralax for constipation. THis is the prep his GI nurse gave us, and they know his...
  5. Johnnysmom

    Med switch due to cancer risks

    DS has done very well on 6mp for the last 4 years. At his GI appointment yesterday the Dr. said he wants to switch him to Methotrexate. The GI had a male patient last fall come down with a bad case of mono and then was diagnosed with Leukemia. Johnny was tested in fall of 2013 for any EBV...
  6. Johnnysmom

    CD64 Blood test

    My son's GI ordered a CD 64 blood test for my son at his last appointment. Things are going really well for him right now, so I didn't think to ask what the test was for. I googled it today and none of the information I found seems to fit. Has anyone had this test? Does anyone know what it...
  7. Johnnysmom

    Crohn's and IGA nephropathy

    My son was diagnosed with crohn's disease in October 2011 at the age of 11. He had pneumonia in November and started to have blood and protein in his urine. After many tests and meeting with a nephrologist he has been diagnosed with IGA nephropathy. The nephrologist has decided not to perform...
  8. Johnnysmom

    Blood in urine from 6mp/pneumonia and being immune compromised

    Johnny has been having the chills in the evening for a few days. Around 8pm at night he noticed his urine was a very dark brown color. That night around 1:30 am he vomited, his stomach felt much better after that but his fever slowly went up to 103 by the next morning. The GI wanted us to...
  9. Johnnysmom

    Low Iron Normal Ferritin

    My son who is 13 years old was diagnosed with crohn's 2 years ago. In his most recent lab results his Iron was low but his Ferritin level was normal. I have been reading a bit about why people with chronic diseases can sometimes have low iron but normal ferritin and I find it a bit confusing...
  10. Johnnysmom

    HPV vaccine for kids with crohn's

    At my son's 13 year check up this year his Pediatrician wanted to give him the HPV vaccine. I have read a bit about it but I wasn't completely comfortable with him getting it yet. All of his previous vaccines were before we knew he had an autoimmune disorder and I am fearful of a reaction. He...
  11. Johnnysmom

    Accidentally ate undercooked hamburger

    So we were eating at a restaurant tonight and my son was 90% done with his hamburger when we noticed it was undercooked. :voodoo: I know the chances of food poisoning are very small but what I am wondering is if there is anything I can do now to help prevent him from getting ill? His White...
  12. Johnnysmom

    Crohns and reverse osmosis drinking water

    We recently had a reverse osmosis system installed for our drinking water. I thought I was doing something healthy for my family. Since then I have read quite a bit of information about how bad RO water is for your health. My understanding is that the RO water is "aggressive" and because it...
  13. Johnnysmom

    6mp and sub therapeutic Thiopurine Metabolite levels

    My son has been on 6mp for a year and a half. His dose started at 50 mg and has been adjusted almost constantly since he started. He started to have very high 6-MMPN and 6-TGN levels about 3 months after starting 6mp and his dose was cut in half and the Dr. added Allopurinol. Long story...
  14. Johnnysmom

    Fecal Cal test questions

    Johnny's Fecal Cal in July was 586 (normal is >=50). He was retested in October and it was 430. I just sent in a sample yesterday and waiting to hear what his current level is. I know the GI is considering taking action if it is still high, but I am not sure what that will be.:shifty: My...
  15. Johnnysmom

    People who don't keep their sick kids at home!

    I just need to vent about this, not really expecting any responses. I have always been a bit of a "germaphobe" and that has gotten far worse since my son was diagnosed. Especially last winter when his white blood cell count was low. I go to great lengths to avoid illness for my son. So last...
  16. Johnnysmom

    Fecal Calprotectin test 586 what's next?

    We just moved to Cincinnati OH from Grand Rapids MI. While in Grand Rapids my son was considered in remission and his inflammation markers have been low normal. His new G.I. ordered a Fecal Calprotectin test. Johnny's results were 586 and the nurse said they like to see the number below 300...
  17. Johnnysmom

    6mp and Leukopenia

    My son has been on 6mp for 5 months now. His dose has been changed 4 times since he started. Leukopenia showed up 2 months ago. The doctor lowered his dose, his WBC came back up slightly and now, as of last week is back down to 3.7. Everything else looks good. They want to blood work again...
  18. Johnnysmom

    Questions I have been afraid to ask

    I am trying to better understand this disease. I am not sure I am even asking the right questions, please help me understand. When first diagnosed and the Doctor labels you mild/moderate/severe crohn's is that observation just based on what they happen to be seeing at that particular point in...
  19. Johnnysmom

    Is Tylenol PM okay with crohn's?

    My son has a bad cold which is turning into an ear infection. I wanted to give him tylenol pm to help him sleep and hoping the benadryl would help with the congestion and fluid in his ears. The pharmacist said there wouldn't be a drug interaction with his 6mp and allopurinol but he wasn't sure...
  20. Johnnysmom

    6mp and Allopurinol any information?

    My son had been on 6mp since October. His initial dose was 50mg but they increase to 75 mg because he was not metabolizing enough of the drug. They just called with his blood work and they are switching back to 50mg with Allopurinol to help him metabolize it better. I have looked up the med...
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