Hello to everyone!
I have not posted in awhile. Life has been crazy!
Tyler had his capsule scope on the 8th of Oct. We recieved a call from the GI wanting us to return to Boise ASAP. He said that Ty's scope showed that he had a lot of stricturing and ulceration from the Jujenum through the Illiem(sp)
The GI called it sever stricturing and fistulising crohn's, and said that he had not been responding to his current meds(pentasa, prevacid, was on immuran,). We were already half way home and had to get home because we were moving... We moved in three days(nothing short of a miracle!) We put Ty on a liquied diet and uped his pred.to make sure nothing would block before we could get here. Then both of my son's and I came back to Boise and we have been staying at the Ronald McDonald house for almost three weeks.....
Good News: While we have been here they did a capsule scope on my son Isaac - NO CROHNS!!!!
The Battle: Ty started Remicade, his first treatment went well. He gets his second one tomorrow. We started Immuran again... so far so good 8 days and no reaction!
We have started the pred. taper, and have started to notice some signs of flaring again. He is down to 10mg. Tomorrow they will do a bunch of blood tests, and then decide what needs to be done after that.
If all goes well we may be able to go home in a week, and then come back in a month for his next remicade treatment.
I miss my family so much. But I am so grateful that we were finally able to find out that there were really big problems going on inside on him. The doctors says that he is a tough patient, not only because of what they saw going on inside of him and that he was still walking, but because his symptoms don't present in the typical ways.
Questions: how long before you know that remicade is going to work? if this does not work I don't know what is next... Anybody know?
Thanks for any input, and please forgive the rambeling... Nat