Hi! I came here before a couple of years back and I soaked up SO much information! Unfortunatly, I lost my user name and don't have my old email address with my old login here. I was pretty quiet when I was here before, just trying to learn everything I could to try and help my son.
Harley is 10 and was diagnosed with crohn's 2 years ago. Unless you count in the 4 years before that when he went untreated because the gi doctor told us that it wasn't crohn's, but sent a report to my son's peds doctor stating it was. We were told to come back if he had any more problems. Thankfully he went 4 years without problems, but that means he went untreated for 4 years.
The past 2 years weren't too bad considering what others have gone through. Harley has learned about crohn's, taken responsibilty for his treatment, and has even met some good friends at camp for crohn's kids. We are at a major turning point with his crohn's and we are both overwhelmed. We would never have known he was in a flare up based on how he feels. No extra bathroom trips, able to eat, and thankfully NO PAIN! The only way we had any clue anything was going on was because his stool sample came back high, 2000! Then he got an abscess, that is (or became?) a fistula. His numbers went higher. Then he had the abscess removed and his numbers dropped by half! Then the next sample the numbers were rising again. He then had surgery and they advised it is a fistula. We were expecting high numbers from that sample, but it came back 800!! Last night when I told him that, he was so happy! The doctor had started talking about Remicade awhile back, but both my husband and I wanted to try something else first. His doctor did a blood test a couple of weeks back to see if he was able to do 6MP and the test came back fine. The first words out of Harley's mouth last night were, "Yes!! We can try 6MP instead of Remicade!" You see, this child is deathly afraid of needles. Every time the doctor says they need blood, Harley immediatly bursts into tears.
Then this morning, Harley's nurse called and asked us to come in for the tests that have to be done before starting Remicade so that if the doctor decides that needs to be done at his appointment on the 6th, they can get started right away. WHAT!?! Here is my problem with Remicade. Right now the only medicine Harley is on is Apriso. When the original topic of Remicade came up, I asked questions, and basically the doctor handed me a pamplet about it and walked out. I have tried asking why this is the next step and all I seem to get is mumbo jumbo talk. I want to know how it will specifically help HIM and where he is with his crohn's. All I want is an explanation as to HIS crohn's and the reason HE needs it. I just feel like she is rushing through patients and pushing meds. I am not opposed to it if I can get those answers and know my son does truly need it at this point.
Jessica
Harley is 10 and was diagnosed with crohn's 2 years ago. Unless you count in the 4 years before that when he went untreated because the gi doctor told us that it wasn't crohn's, but sent a report to my son's peds doctor stating it was. We were told to come back if he had any more problems. Thankfully he went 4 years without problems, but that means he went untreated for 4 years.
The past 2 years weren't too bad considering what others have gone through. Harley has learned about crohn's, taken responsibilty for his treatment, and has even met some good friends at camp for crohn's kids. We are at a major turning point with his crohn's and we are both overwhelmed. We would never have known he was in a flare up based on how he feels. No extra bathroom trips, able to eat, and thankfully NO PAIN! The only way we had any clue anything was going on was because his stool sample came back high, 2000! Then he got an abscess, that is (or became?) a fistula. His numbers went higher. Then he had the abscess removed and his numbers dropped by half! Then the next sample the numbers were rising again. He then had surgery and they advised it is a fistula. We were expecting high numbers from that sample, but it came back 800!! Last night when I told him that, he was so happy! The doctor had started talking about Remicade awhile back, but both my husband and I wanted to try something else first. His doctor did a blood test a couple of weeks back to see if he was able to do 6MP and the test came back fine. The first words out of Harley's mouth last night were, "Yes!! We can try 6MP instead of Remicade!" You see, this child is deathly afraid of needles. Every time the doctor says they need blood, Harley immediatly bursts into tears.
Then this morning, Harley's nurse called and asked us to come in for the tests that have to be done before starting Remicade so that if the doctor decides that needs to be done at his appointment on the 6th, they can get started right away. WHAT!?! Here is my problem with Remicade. Right now the only medicine Harley is on is Apriso. When the original topic of Remicade came up, I asked questions, and basically the doctor handed me a pamplet about it and walked out. I have tried asking why this is the next step and all I seem to get is mumbo jumbo talk. I want to know how it will specifically help HIM and where he is with his crohn's. All I want is an explanation as to HIS crohn's and the reason HE needs it. I just feel like she is rushing through patients and pushing meds. I am not opposed to it if I can get those answers and know my son does truly need it at this point.
Jessica