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Thanks everyone, He is feeling a little better this morning, but still has back pain. I have left ANOTHER message with his ped GI as well as another GI who is nearby (the Ped GI is 1.25 hr away). This one is an adult doctor, but saw him in the hospital when he was hospitalized for his...

Since coming off the pred (8 days now), Anthony's pain is worse. He has no energy and lots of joint pain. The last few days have been really bad - lots of 'stinging pain' in the lower right side (where his stricture is). He is walking hunched over, and now his back hurts. On top of this, if...

Thanks Nica!!!! I hope so too! Especially since three calls to his Ped GI today about his condition, and no call back. Grrr.

(((Kim))) Good luck! She will do great, you will see! I will be thinking of you guys! Please post tomorrow to tell us how fabulously she did! :-) Kelly

Thank you so much, SilverMoon. I think we need to read more stories about "Crohn's Kids" who have grown up, attended college, and have gone on to live happy successful lives. I know that this NOT happening is my greatest fear! Thank you again!

Thanks Kim, I responded to you on my other thread regarding your daughter. My thoughts and prayers are with you for tomorrow's surgery! ******************************************** Update: I got an appointment!!!! Is it crazy that I am so excited??? Next Tuesday! Now I have to work on...

Dexky, yes, I am definitely still trying to get him an appt. there. Just a few more minutes until the office opens! The only thing is - it is probably likely the appt. won't be within the next few days, so if it is weeks away I can't just allow him to remain in this condition while we wait...

(((Kim))) I am so sorry to hear that. I am new to Crohn's also so I don't have any great advice, but just want to say that I feel your pain - the fear, uncertainty, sadness at the possible loss of many dreams we have for our children. It is hard to remain positive sometimes, but I do believe...

Hi Nica, Thank you so much for the information! It is good to hear that you are heading into remission! The colonoscopy/upper endoscopy revealed that there were no other diseased parts, with the exception of his stricture. We are still awaiting biopsies, but the pictures looked good. So...

I am thinking about a second opinion for Anthony. Although going to Mt Sinai would require more travel, I would love to have him seen there because the program sounds great and they seem to have everything covered right there (nutritionist, social workers, etc.). I am not really thrilled with...

Thanks CC, she did eventually explain the infusions would be every 8 weeks. He has had a bad weekend. Pain the entire time, just very tired, laying on the couch the entire time. He is not himself. He asked me if he had a say in his treatment, and told me he would like to have the surgery...

Thank you everyone. Dusty, yes - that was me with the pred taper problem! I did call the GI and she agreed it was not right and she called in more pred to taper it down correctly. He is now off the pred, only taking asacol, and not feeling well on a daily basis. Pain, no energy. Not...

Thank you all so much for replying. I am here, reading, reading, and reading ... still unsure. I seem to change my mind each hour. I have a meeting with the surgeon to discuss on Tuesday, and I am making a list of questions for the Ped GI about the medications. I know she is supposed to be...

Thanks so much everyone. I am so, so lost. I go back and forth with feeling like I want to prolong having to resort to the drugs as long as possible, to feeling like I should try them first since he will eventually need them anyway. The side effects scare the hell out of me, to be honest...

Hi everyone, I posted this under treatment yesterday but didn't get any responses. I am really hoping for some input, maybe this was a better place to post it. Please let me know what you think!! ******************************************** Today was Anthony's colonoscopy/upper endoscopy...

Wow, no one with any input? :pale:

Misty-Eyed, thank you so much for sharing that, it is really encouraging! Thank you all for your comments, I am so grateful for this site! (((Rosie))) My heart absolutely breaks for you. Please don't take this the wrong way, but I think you are now dealing with what I am terrified of...

Today was Anthony's colonoscopy/upper endoscopy. It appears that everything is isolated to the stricture in his terminal ileum. So, his ped GI told me today that I need to choose between: Surgery to remove 6 cm of small intestine where the stricture is Remicade 6MP I admit, I don't know...

Thanks everyone! The suggestion to start with the pharmacist is an excellent idea! Doing so now, will let you know! Anthony is home from school today. He is feeling very tired and sore all over his body. He has been off the prednisone for 48 hours now.

Thanks Dusty! I don't have much experience with this, but it doesn't seem right to me either. It seemed strange that we tapered off the pm dose which was the smaller of the two initially, and then just stopped. I was going to call the doctor but I think she is already tired of me, and I feel...