Today was the day that I made the appointment for my daughters first Remicade IV infusion. It is scheduled for next Tuesday. I'm a bit nervous but hopeful that this will work, otherwise we are at square one.... again. I am also feeling a little scared too. I'm scared that this is too much for her little body to handle, that she has a bad reaction and that she could develop something else to complicate things more. These thoughts will always be in the back of my head even though the GI doctor reassured me of a positive outcome. However, I am keeping the mindset that this is the proverbial "light at the end of the tunnel" for her.....for us. I suppose I will feel more at ease once I see the medication actually working.
If Remicade works for her, this could potentially mean remission. THAT would be awesome! She is young and needs to live her childhood without the fear or thought of belly pain or fatigue. It could also eliminate the need for future surgery which is something many Crohn's patients eventually require. Another possibility is decrease in medication. She wouldn't have to take medication everyday....only the Remicade every 6 to 8 weeks.
In any case, Remicade is the best solution for her at the moment and pray that it will work!
I will be blogging soon.....until then.........Laugh and Love Life!
Hi Theresa,
ReplyDeleteThinking of you during this time. I certainly understand those nervous feelings. My 9 yr old son was diagnosed two weeks ago. At this point he is on Cipro and Predinsone. Wednesday we have the endoscopy and colonoscopy. His main symptoms have been unbearable stomach pains that we use tylenol/codeine to manage. This is a very new journey for us that has turned our lives upside down. We've missed three weeks of school and he's had to step away from his club soccer team, which is his passion. We're certainly trying to laugh and love life during this difficult time.
Hi Elizabeth! Sorry it took so long to respond. I hope you received some difinitive answers and that your son is doing better. There are a lot of ups and downs with this disease but know that you're not alone in this. There is a support website that I am involved in. It is mycrohnsandcolitisteam.com. Please go there and sign up. It is free and will do you a world of good. It did for me. Keeping you in my thoughts and prayers.
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