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  1. Jmrogers4

    Should he stay or should he go??

    All right my mammas, Jack has not had labs done since August 7th. Our goal at that point with him going to school was maybe every 3rd infusion. So not hearing anything I sent an email to his GI asking and he usually responds within 2 days if it's not urgent (a week goes by and I don't hear...
  2. Jmrogers4

    504 Update - Pre-College

    We have Jack's 504 review tomorrow and the nurse just asked me if there was anything we wanted to add to be more helpful in transitioning services to college. He currently has free bathroom pass, food/water allowed anytime, no tardies, extended time on assignments and shortened assignments if...
  3. Jmrogers4

    Twitching eye?

    Infusion tomorrow and will question GI but right below Jack's eye it's been twitching nearly constantly for about a week. I, at first, assumed it was just fatigue but he's been sleeping well at least for a teenage boy -bed about 9pm and up at 5:45 during the week. Weekends vary but generally 11...
  4. Jmrogers4

    Remicade and weight loss

    Decided to start a new thread on this so it doesn't get lost as I think this may be another long journey of trying to figure out why. Results are in.... and they are great, Remi levels are good, no antibodies present. So it once again leaves us scratching our heads about weight loss. In the...
  5. Jmrogers4

    Broken bone and remicade

    So got home from urgent care about an hour ago and Jack has broken his arm. He is due for his infusion on Tuesday, I've tried to do some research assumed it was fine since it's not systemic but have found some random posting about slower healing. Any body have any experience? Have to call the...
  6. Jmrogers4

    Vitamin D low but in remission, should we increase?

    So Jack's labs just got posted from his infusion last week. His GI is out of town so I'm sure he will call but probably not until after New Years. We pulled for Vitamin D levels as we had not tested for some time. He takes daily 1000mg and it came back at 26. Normal range 30-100. He has no...
  7. Jmrogers4

    Bug Bites? Infection? Remicade?

    It has happened again! Just got home from vacation and Jack has several spots on his leg that appear to be infected. He has a infusion scheduled for Wednesday. Do I need to cancel? I have calls into both GI and GP. I'm worried as we were in such a good place last year and July and bug...
  8. Jmrogers4

    Happy Canada Day and 4th of July

    Happy Canada Day to all my neighbors up North and Happy 4th of July on Friday to all in the US. Hope you have a fun filled day with family and friends
  9. Jmrogers4

    Endocrinologist - Delayed Puberty an Update

    Had our follow up visit to the endocrinologist from our December 31st visit where we decided to wait for further testing in the hopes that remicade would do the trick and kick start things. Well he is doing fabulously well on remicade and everybody is pleased with his weight but.... even though...
  10. Jmrogers4

    Elevated AST (SGOT)?

    Alright just had Jack's labs posted and I'm sure his GI will call me this evening. He usually calls after hours but his AST is slightly elevated 42 (range 10-36 U/L 37), RBC just by a titch 5.42 (range 3.90-5.30), hemoglobin just a titch as well 15.4 (12.5-15.0). Lymphocyte % as well just...
  11. Jmrogers4

    Tater Tot and Remicade

    MRI Results are back - narrowing and inflammation at TI and up into small intestine so we are jumping on the remicade train. GI is going to start working on insurance approval. Have had myself a little cry and moving on. Hoping this does the trick and gets everything under control. One part of...
  12. Jmrogers4

    LDN and Imuran Combo Diary

    Jack's inflammation levels have been climbing since Aug/Sep. At GI appt. on Monday his doctor added back in Imuran/Allipurinol combo but did not want him to come off the LDN since it had worked so well. He took his first dose on Tuesday morning, no immediate issues so far. He upped the dosage...
  13. Jmrogers4

    504 video by Seattle Children's Hospital

    The nurse doing the video is the head nurse at Jack's Camp Oasis. She gives some great info and would be a good source to show teachers, principals, etc. http://www.seattlechildrens.org/videos/about-your-students-crohns-disease-ulcerative-colitis/
  14. Jmrogers4

    Dating, Eating and EEN

    So Jack's first homecoming is next weekend and we just started on a 4-6 week course of EEN (first full day is today since he had breakfast yesterday). So this is his first "date" dance and he asked a really good friend of his the expectation is dinner before the dance. Any suggestions? I would...
  15. Jmrogers4

    LDN and Prednisone

    So Jack has been having some symptoms for the past 4 weeks, started fairly mild and I just attributed to the stress of starting at a new school (high school) and figured he would bounce back after a few days or so but he seemed to be getting worse so we had a fecal calprotectin done and his...
  16. Jmrogers4

    TNI Biotech signs Agreement to Manufacture LDN

    Full article - http://www.marketwatch.com/story/tni-biotech-inc-signs-manufacturing-agreement-for-irt-103tm-ldn-2013-09-04 Can also be found on TNI biotech site here http://www.tnibiotech.com/
  17. Jmrogers4

    Infection or Crohn's Symptoms

    Jack had a GI check up today and he has had diarrhea for the past 3 days - wake him up in the middle of the night kind. We figured it was from the antibiotic for the cellulitis. He went 3 times while we were at the GI and he was clearly in pain while we were there with tears in his eyes and has...
  18. Jmrogers4

    Can getting off a schedule cause symptoms

    I'm hoping it is nothing and I have not jinxed anything but last couple of days Jack has complained of stomach pains and not eating muchHe hasn't had a BM in a couple of days but says he is not constipated. He is down to 94lbs and certainly is now where near what he weighed a few months ago, he...
  19. Jmrogers4

    LDN Success at 10 months

    Jack went for follow up GI appt today and GI kept saying "Wow! you look great, I'm so impressed" Of the several patients he has on it Jack is the only one doing well. We chatted about how we have it compounded and that I told the pharmacy how I wanted it compounded based on the information and...
  20. Jmrogers4

    If it's not one it's the other

    Finally my son seems to be feeling well and gaining weight. Seems that current medicine regime is working. We go back to GI next week for a check in. So hubby had his blood work done last week and it is all wacked. Liver levels seem to be all over the place and he is losing weight...
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