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  1. L

    Remicade puffiness?

    My 19 year old son has been on Remicade since April of 2015 and I noticed after he was on it for several months, he began to look a little puffy, even though he's still technically underweight. 6'1" and 175 lbs. He's feeling pretty good and has a good appetite.
  2. L

    If everything looks good, Dr. wants to stop Remicade.

    We saw a new doctor a couple weeks ago and he said that my son needs to have a colonoscopy (he's right, as it's been over 3 years) and he said, "If we get in there and everything looks good, we can take you off Remicade. But, if things look bad, we'll know the Remicade isn't working and we will...
  3. L

    Medicaid question.

    My husband is retiring, which means our 19 year old son will be losing his current health insurance in January. We can purchase health insurance for him for about $600 a month, but with the deductible, it would cost about 13k a year and would be a strain on our finances. So, I'm wondering about...
  4. L

    Things to look out for when on Remicade?

    My son has had some toe pain for a couple of days (occasional stabbing pain, seems pretty mild, but he says ouch and he doesn't say ouch for a needle stick) I googled and see that some people have so much joint pain from Remicade that they can't walk downstairs..yet they continue to get...
  5. L

    When do you think there will be a cure?

    Please don't candy coat it. I want to know what people really think. 2 years? 5? 10? 20? 100? Thank you.:ghug:
  6. L


    My son is now 19. Sick since 14, diagnosed at 16. Suffers mostly from constipation, fissures, weight loss, fatigue. He is now on Remicade. (Since April) It seems to be helping because his weight is good. 6' 1" and 155 to 160 lbs. His appetite is good. However, it is often painful for him...
  7. L

    Success stories with Remicade?

    Who has a success story with Remicade? It seems like some have success for a time and then rashes and other side effects begin to occur. I read that it only had a 30% chance of working. Is that not correct? My son's GI wants to hold off on biologics, for now. I can tell he doesn't like them.
  8. L

    Hindsight is 20/20

    I thought we might find commonality with a thread about choices we would have made differently, had we only known ___. To prevent others from making the same mistake. When my son was 4, I let the pediatrician give him 3 vaccinations during one appointment. I asked if it was safe and they...
  9. L

    Anti-MAP Therapy

  10. L

    A new biologic "without the bad sides" ?

    During our GI apt yesterday, the dr. mentioned a new medicine that my son could take for Crohn's. It had a crazy name, as meds often do and so I asked him to write it down. He must have forgot, so I just called the nurse and she said she thought it was Entyvio. Is that new? He said that it...
  11. L

    A week into EEN and there's blood

    I'm on hold waiting to speak to the doctor's answering service, where I will tell them the Peptamen relieved my son's symptoms temporarily, but he went 3 times during the night, last night and there was blood. There was a little blood 2 days ago that my son did not tell me about and blood...
  12. L

    Searching for a warm, beautiful beach.

    We're planning a 2 week vacation for when our son feels a little better. He said he'd like to go someplace warm. We want to stay in the US and can't spend tuns. Nothing too exciting, just some place we can hang out in the water, do a little snorkeling, lying in the sun, see some sights. A...
  13. L

    The importance of regular exercise?

    I'm wondering what part exercise plays in getting in and staying in remission. My son has been extremely inactive since getting diagnosed in 2013. He was in remission for about a year despite this (may of 13 to may of 14) on Pentasa and the SCD. Then had a flare that got bad in Sept of 14'...
  14. L

    Success stories with MTX?

    March 2013 Son (now 18 was diagnosed with Crohn's) May 2013 in remission after drinking Peptamen for 6 weeks. May 2014 Begins a flare, that takes him from 121lbs to 104. Sept 2014 Hospitalized, given steroids, enters remission again and is put on MTX for maintenance. Weight goes from 104 to 150...
  15. L

    Back in the hospital AKA Scary Town

    Last Friday morning, my son's weight dropped to 108. I called his GI and he asked me what I wanted to do..I said, "I would like to admit him in the morning." The doctor agreed and arrangements were made. That night, my son went from being a totally rational person to one with delusions. He...
  16. L

    Helping my son too much

    My son is 17. When he wakes up I bring him breakfast, usually yogurt or a smoothie. A couple of hours later, I bring him whichever one he didn't have yet. I prepare and serve lunch, dinner and snacks throughout the day. When I sit down to eat my lunch or dinner, he will often ask for a glass...
  17. L

    A new doctor

    So, we saw the new doctor on Thursday and he seems AWESOME! I definitely want to switch. He's easy to talk to and he just came from CHOP. He has 3 young patients with Crohn's on the SCD, doing well, no meds. So, he's familiar with the diet as well, unlike the other doctor. My son's...
  18. L

    Time to get scoped?

    My son is 17. He was diagnosed in March of 13' and then was in remission for a year. His last FCP came back at 500. His doctor has a wait and see attitude and I want to get a second opinion, but my son doesn't (right now). He doesn't want this disease or anything to do with it. It's hard to...
  19. L

    Fcp 500

    My son is 17. He was diagnosed with Crohn's in March of 2013 and has been in remission for about a year. He has been feeling poorly for about a month and sadly, I was just told that his FCP test came back elevated at 500. When I asked the nurse, "What do we do now?" She said, "The doctor is...