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  1. Mom2oneboy

    What to do with leftover Peptamen?

    S is no longer doing EN and I have lots of Peptamen Jr. leftover. Any ideas on what to do with it? I hate to just throw it away or let it sit here so long it expires. I already checked with the hospital and they can't take it. Thanks!
  2. Mom2oneboy

    Now on Remicade and MTX

    Well, we have hopped on the Remicade train. S had is first infusion this past Thursday. We were hoping the MTX was going to do the job but it's not. He started bleeding again and the number of daily stools started to increase along with some tummy pain. His perianal abscess also started to...
  3. Mom2oneboy

    Question about traveling with an EN Kiddo

    We will be going on vacation next month and will be flying. How do I get S's formula and pump to our destination?? The pump is small but it makes me nervous to put it in checked baggage. We have a backpack that it would fit in and could carry it on with us. Will there be any security issues...
  4. Mom2oneboy

    We have started Methotrexate

    It's official....S had his first MTX shot last night. Hubby gave him the shot in the tummy and he didn't feel it at all. Thank goodness! No side affect to note as this point. Energy level is fine today so far too. S has been feeling well and has had more energy the few weeks. He was able to...
  5. Mom2oneboy

    Kids on Enteral Nutrition

    There's been discussion in other posts regarding EN so I thought I would start a new thread dedicated to that subject. Maybe get an update as to who has or is currently doing enteral nutrition so that anyone considering it for their child could ask questions, get more info, etc. I'll...
  6. Mom2oneboy

    Remicade - fact of fiction?

    The more I read about Remicade the more questions I have. There seems to be conflicting information. My impression has been that once you stop taking Remicade you can never go back on it again therefore you should stay on as long as possible. Yet, in the IBD book by Professor Hunter, he talks...
  7. Mom2oneboy

    Need advice on Remicade and Methotrexate

    My son's doctor is recommending he start Remicade. He's also encouraging us to use methotrexate along with it in hopes of it helping him not produce antibodies against the Remicade. Are any of you using these two drugs together? Are there additional side effects or risks that we should...
  8. Mom2oneboy

    Doc appt - Remicade and Methotrexate

    We had our doctor consult today to discuss the next steps. S has not responded to EN or steroids and his crohn's has actually spread to other areas these past 2 months. He still continues with bloody stools, as well. His doctor is recommending Remicade at this point. He's also recommending...
  9. Mom2oneboy

    Anti-Spasmodic Drugs

    Have any of your kids ever been on any anit-spasmodic drugs? Did it help with the cramping at all?
  10. Mom2oneboy

    Quit my part-time job today

    I quit my part-time job today. It was only 2 days a week but I feel like it's too much for me right now. I am emotionally drained! Mornings here are a struggle these days. I get S up extra early because he has at least 2 and sometimes 3 bowel movements each morning that include lots of...
  11. Mom2oneboy

    I feel gutted!

    S had his colonoscopy and it shows his crohn's has now spead to colon and large intestine. Now the doctor is talking Remi! How in the world did we get here so quickly?? I am shocked and beyond words. My heart seems to break a little more each day. Immediate plan is to start Rowasa enemas...
  12. Mom2oneboy

    How has YOUR weight been affected?

    I'm curious how everyone's weight has been affected by taking care of their little crohnie. There is so much stress and uncertainy and changing of courses involved with this disease and when it's happening to your child it raises the pucker factor even higher. I know we all deal with it...
  13. Mom2oneboy

    Is your child on Aza/Imuran?

    First off, thanks for the replies to my "Sooo discouraged" post. You guys are the best! After texting with the doctor last night, we are shooting to have another colonoscopy tomorrow to find out the source of the blood. I'm good with this because then we at least know what we're dealing with...
  14. Mom2oneboy

    Soooo discouraged

    S continues to have lots of blood in his stool. Had our doctor's appt yesterday and we looked at his colonoscopy pics that were done on 2/22. The colon looked fine with the only issue being in his terminal ileum. The blood in his stool started on 3/18 and has continued daily. It's gradually...
  15. Mom2oneboy

    S says he's hungry :-(

    S is on day 9 of EN and told me tonight he is hungry and wants to know when he will be able to eat real food again. Makes me feel horrible and now I sit here and cry. I hate Crohn's! I don't want my child to have to go through this!! I'm thinking part of the reason he may have felt hungry...
  16. Mom2oneboy

    So nervous about tomorrow!

    The good news is S feels well enough to return to school. Yay!! He has decided to leave his NG tube in place. He's left it in the past couple of days and said he'd rather just leave it in versus taking it in and out all the time. I think he's a tad nervous about it too but says he thinks all...
  17. Mom2oneboy

    We are home

    and it felt so good to be in my own bed last night!! It was a crazy day yesterday trying to get all our EN supplies delivered to our house due to mix ups and the crazy weather we had. Didn't get S hooked up for feeding until about 8:30. S is doing really well with the tube insertion. His dad...
  18. Mom2oneboy

    We have been admitted

    Well we've been admitted to the hospital. They want to start the EN and then monitor how he does with it. They are also doing labs because he continues to bleed and may need a transfusion. The plan is for us to be out of here tomorrow. I cannot tell you how relieved I am going to feel once...
  19. Mom2oneboy

    Had the talk with our son about going on EN

    We have a meeting with S's GI doctor in the morning to discuss starting the liquid feeds. Because he has had so much going on this week, we put off telling him about it until tonight. So we start off with all the reasons why he needs extra nutrition in order to continue to grow and get BIG...
  20. Mom2oneboy

    Question about Diarrhea

    Since being diagnosed with crohn's this is our first bout of diarrhea. S is going 10 to 15 times a day. The thing about it is that there's not that much coming out yet he feels like he really has to go bad. He says it burns when it comes out. The blood is very fresh looking which makes me...