Sophie IS a rock star! Seriously, what that sweet child has to go through...and the fact that she probably does not even know what "good" feels like just breaks my heart. I will be praying that this medicine is the answer to get her feeling better.
You are a rock star mom and you handle it all with such grace. Much love to you, Laura!
Laura, my heart just breaks for your little Sophie. She is so young to deal with so much! My sister has uc and I have crohns. We have both been on remicade since 2007 and it has been amazing for both of us. My sister delayed starting it for a long time because we were nervous about the side effects. However, once she started her health improved soooo dramatically. When I was running out of options a short time later I was less nervous to start it because of her success. Neither of us have had any bad side effects. We are actually both pregnant with the second baby we have each had while on the medicine and have had very healthy pregnancies and babies. I hope your sweet Sophie will have similar results and can get back to being a healthy little girl who remembers what it feels like to feel good!
Sophie is seriously the most gorgeous little girl, inside and out! I'm glad you've gotten answers and there's a path forward for improving her health and well-being. Wish it didn't come with so much fear, but trust in God to take care of what you can't and that fear will ease a bit. Give her lots of hugs and remember that you have a huge community of people pulling for all of you!
Laura, I'm so sorry for all you and sweet Sophie are having to go through. I think you are right when you say, "Sophie never complains but we have determined that although she thinks she feels ok she has most likely forgotten what good feels like. We need to change that." That is just heartbreaking. Reminds me of kids before they are diagnosed with T1D and then once they start receiving insulin, they feel SO much better.
I'll be praying this drug is just what she needs with NONE of the scary side effects. How encouraging to read Amanda's comment about her and her sister being on this same drug with success!
She is a reflection of your parenting and love, sweet Laura.
Information and clarification will only help you and Sophie's Dr.'s treat her, and treat her well.
Being scared is just a sign you love and adore your daughter . . . you will make the right decision for her, I just know it :)
My sister was dx with Crohn's at age 8, after almost a full year of mostly minimal symptoms. I think it was 1980 or so. She was on Prednisone, flare ups every 18 months or so till high school. She will be 40 this August, had 3 uneventful pregnancies, was off all medication for more than 10 years, has had 2 bowel resections, and started Remicade about 3 years ago, I think. She tells me she can feel the difference before & after the infusion.
I was dx'd with Crohn's also, at 18, just after graduation & little over 6 months of abdominal symptons & almost daily diarrhea. I am 44 now, 2 successful pregnancies, 2 bowel resections, and still on Pentasa & 6-mp.
Sophie will do fine, especially with a mother like you to care for her!! Hoping & praying that Remicade is your answer & that Sophie feels better soon.
Just a Mom
I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.
The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.
Please consult your doctor if you have any questions or concerns about your health care options.
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