- Joined
- Dec 26, 2014
- Messages
- 1,264
Hi all,
My 12-year-old daughter E was diagnosed with Crohn's 3 months ago in Dec. 2014. In hindsight, she has had symptoms for at least 5 years, but the symptoms were always attributed to something else until she finally got very ill last fall.
I've been spending countless hours on this forum since then. Thanks so much to everyone for sharing their experiences here--it's honestly been a lifeline to me during the past few months.
Our GI recommended a top-down approach, so E started Remicade on Dec. 24 (no steroids). She continued to be very ill and lose weight, so we tried SCD for 3 weeks. That took away her abdominal symptoms, but she continued to lose weight--she hit 70 pounds at 5'1"--so we started 90% EN via NG-tube. That helped her gain some weight back, but 2 weeks ago she started feeling very sick again, with high fever, and she ended up back in the hospital.
A CAT scan showed leakage from her small intestine, which had led to an abdominal infection. She was treated with IV antibiotics, and she finally also started steroids--IV in the hospital, and Entocort now that she's home again. With the steroids, she's feeling better for the first time since diagnosis, and it's been so wonderful to see her smile again.
My husband and I have been concerned that the Remicade hasn't seemed to help at all yet (she finished induction 5 weeks ago), and so were were glad when her GI had her Remicade levels tested during her hospital stay last week. The test showed no detectable Remicade at 4 weeks from the last infusion. So E will be going back for her next infusion as soon as we can get into the infusion center, hopefully this week. She's also going to start oral MTX and folic acid this week.
Have any of you dealt with a similar situation? I'm so worried that the test results might mean that Remicade won't work for her. Should we push to increase the dose, along with increasing the frequency? So far, she's been at 5mg/kg. And how often should we ask for remicade levels to be checked? I know it's an expensive test, but it's so hard to know what's going on without testing.
I've seen that a lot of your kids have had to increase the dose or frequency of Remicade. How was the decision made to change the dosing, and how long did it take to figure out the optimal dosing?
Thanks so much for your advice.
My 12-year-old daughter E was diagnosed with Crohn's 3 months ago in Dec. 2014. In hindsight, she has had symptoms for at least 5 years, but the symptoms were always attributed to something else until she finally got very ill last fall.
I've been spending countless hours on this forum since then. Thanks so much to everyone for sharing their experiences here--it's honestly been a lifeline to me during the past few months.
Our GI recommended a top-down approach, so E started Remicade on Dec. 24 (no steroids). She continued to be very ill and lose weight, so we tried SCD for 3 weeks. That took away her abdominal symptoms, but she continued to lose weight--she hit 70 pounds at 5'1"--so we started 90% EN via NG-tube. That helped her gain some weight back, but 2 weeks ago she started feeling very sick again, with high fever, and she ended up back in the hospital.
A CAT scan showed leakage from her small intestine, which had led to an abdominal infection. She was treated with IV antibiotics, and she finally also started steroids--IV in the hospital, and Entocort now that she's home again. With the steroids, she's feeling better for the first time since diagnosis, and it's been so wonderful to see her smile again.
My husband and I have been concerned that the Remicade hasn't seemed to help at all yet (she finished induction 5 weeks ago), and so were were glad when her GI had her Remicade levels tested during her hospital stay last week. The test showed no detectable Remicade at 4 weeks from the last infusion. So E will be going back for her next infusion as soon as we can get into the infusion center, hopefully this week. She's also going to start oral MTX and folic acid this week.
Have any of you dealt with a similar situation? I'm so worried that the test results might mean that Remicade won't work for her. Should we push to increase the dose, along with increasing the frequency? So far, she's been at 5mg/kg. And how often should we ask for remicade levels to be checked? I know it's an expensive test, but it's so hard to know what's going on without testing.
I've seen that a lot of your kids have had to increase the dose or frequency of Remicade. How was the decision made to change the dosing, and how long did it take to figure out the optimal dosing?
Thanks so much for your advice.