Hi everyone, just wanted to give an update on my son.
My original story is titled Linda’s son. He is now 6 years old and currently in a bad flare. We are at the children’s hospital here in Orlando, FL waiting for the remicade medicine to arrive from the pharmacy. Why it takes so darn long to mix i have no idea!! since he is so young, they admit him to the hospital for each treatment, and we are here an average of 7 to 8 hrs. each time from start to finish. today they are backed up and we are pulling a 10hr. plus today! My son has lost 10 lbs in 2 and 1/2 weeks. he is so weak, tired, and in alot of pain! this will be his 4th remicade in fusion and is was moved up to 6 weeks since he is doing so bad. not sure if we will be able to go tonight. his labs came back and they were off the charts for high white blood cell count, liver function was not great, and, today we found out he has a sinus infection and could also have a bladder infecti on. How much more should my son endure before he gets some relief?
I am so tired and depressed myself but, have to stay strong so he can’t see his Momma breaking down. On a high note, we have been doing the SCD for 15 days now, and i’ve seen some improvement for him, but, obviously not enough. I’m trying to stay strong and keep the faith.
I appreciate anyone’s comments on here as this is such a great support group to turn to. thanks guys, Linda.
Currently trying to find a great longterm treatment for a 5 year old son who was recently diagnosed with ulcerative colitis. Previously tried the Asacol, prednisone, Colazal and now Remicade infusions.
