- Location
- North East Coast - USA
Hello All,
I am the Mom of a 14 year old son who was dx with Crohn's last year April. The flu was going around crazy last year, we all had it at some point or another. Additionally our family was under a lot of stress and I thought nothing of his "bug". However after a solid week of him not getting better and cramps setting in, we went to the doctor - they said, "it's the flu, everyone's got it." So there it is, no big deal...
Over the next week, he was on and off not feeling well, but not complaining much either. He had a huge ice hockey tournament coming up and looking back he was probably afraid to complain or I wouldn't have let him play / That weekend I remember *everything* going right through him. He needed energy to play, so he'd eat a huge meal, wait 20 mins, let it run through him and then put on all his hockey gear and go out a play a solid game (he had the most goals for his team during the tournament - grins!)...
But the flu didn't go away and he started cramping like crazy. It was like watching someone in labor! He'd go down in pain for about 30 seconds and then be fine. Initially, they came and went a couple a day (braxton-hicks?), then they started coming more regularly, and finally they were coming non-stop.
Back and forth to the doctor, hospital and home and nada. Then you know how when you look at the same person all the time you don't always notice what someone else will notice if they only see you once in a while? I had a OMGosh moment. My son was heading into the shower - and I could count the vertebre down his back - where did he go?? What happened to him??
Back to the pediatrician who asked, "Do you have Crohn's in your family?" "Do I have what?" Ummm... no. Neither side, nothing. Doctor thinks it's Crohn's and sends us to Children's Hospital ER. They send us home with the flu stating it definitely not Crohn's (how did they know? I don't know, but whew! I was relieved). A couple of days later tears falling thinking my son has cancer and he's going to die, my pediatrician calls CH GI office and says you need to see this child.
Up until then we'd seen doctors. That day in the GI office we saw a nurse who took one look at my son and said, "I don't know if it is Crohn's, but I'd bet my house it is an IBD." A what? sigh....
He spent 6 weeks in the hospital. They did an endoscopy and colonoscopy, MRI/CAT, and started him on steroids, prevasaid, pentasa. He gained 10lbs in the hospital and started looking like my son again.
Cut to a year later - they've increased the Pentasa - he takes 3 pills in the am (1500 mg) and 3 in the evening. He still takes the prevasaid, though we went off of it and went back, iron supplements and I've just started giving him a vitamin D mag supplement.
His last labs were awful, but the doctor thinks that we aren't optimizing his Crohn's and wants to put him on 6-MP. Knowing one of the side effects is Lymphoma, I'm against it. I didn't think the labs were *that* bad. His protein was 3.3 (not <3.5) and his D was really low (so let's supplement).
He was seen by the Oncology doctors while in the hospital and 6 months afterwards because he has an unusually high amount of lymph nodes in his abdominal cavity - after seeing no difference and a slight decrease after they got him stablized, they discharged us from the Oncology Clinic (yeah!!), but put him on a drug that can cause what they were looking at in the first place?? Um... no.
Anyone have experience with this drug?
I was looking for snack ideas for him when I found you all - I'm *so* glad to find this website - I'm going to tell my son's doctor about it - they should pass it along to new patients.
Thanks - that's our story (so far...)
ChampsMom
I am the Mom of a 14 year old son who was dx with Crohn's last year April. The flu was going around crazy last year, we all had it at some point or another. Additionally our family was under a lot of stress and I thought nothing of his "bug". However after a solid week of him not getting better and cramps setting in, we went to the doctor - they said, "it's the flu, everyone's got it." So there it is, no big deal...
Over the next week, he was on and off not feeling well, but not complaining much either. He had a huge ice hockey tournament coming up and looking back he was probably afraid to complain or I wouldn't have let him play / That weekend I remember *everything* going right through him. He needed energy to play, so he'd eat a huge meal, wait 20 mins, let it run through him and then put on all his hockey gear and go out a play a solid game (he had the most goals for his team during the tournament - grins!)...
But the flu didn't go away and he started cramping like crazy. It was like watching someone in labor! He'd go down in pain for about 30 seconds and then be fine. Initially, they came and went a couple a day (braxton-hicks?), then they started coming more regularly, and finally they were coming non-stop.
Back and forth to the doctor, hospital and home and nada. Then you know how when you look at the same person all the time you don't always notice what someone else will notice if they only see you once in a while? I had a OMGosh moment. My son was heading into the shower - and I could count the vertebre down his back - where did he go?? What happened to him??
Back to the pediatrician who asked, "Do you have Crohn's in your family?" "Do I have what?" Ummm... no. Neither side, nothing. Doctor thinks it's Crohn's and sends us to Children's Hospital ER. They send us home with the flu stating it definitely not Crohn's (how did they know? I don't know, but whew! I was relieved). A couple of days later tears falling thinking my son has cancer and he's going to die, my pediatrician calls CH GI office and says you need to see this child.
Up until then we'd seen doctors. That day in the GI office we saw a nurse who took one look at my son and said, "I don't know if it is Crohn's, but I'd bet my house it is an IBD." A what? sigh....
He spent 6 weeks in the hospital. They did an endoscopy and colonoscopy, MRI/CAT, and started him on steroids, prevasaid, pentasa. He gained 10lbs in the hospital and started looking like my son again.
Cut to a year later - they've increased the Pentasa - he takes 3 pills in the am (1500 mg) and 3 in the evening. He still takes the prevasaid, though we went off of it and went back, iron supplements and I've just started giving him a vitamin D mag supplement.
His last labs were awful, but the doctor thinks that we aren't optimizing his Crohn's and wants to put him on 6-MP. Knowing one of the side effects is Lymphoma, I'm against it. I didn't think the labs were *that* bad. His protein was 3.3 (not <3.5) and his D was really low (so let's supplement).
He was seen by the Oncology doctors while in the hospital and 6 months afterwards because he has an unusually high amount of lymph nodes in his abdominal cavity - after seeing no difference and a slight decrease after they got him stablized, they discharged us from the Oncology Clinic (yeah!!), but put him on a drug that can cause what they were looking at in the first place?? Um... no.
Anyone have experience with this drug?
I was looking for snack ideas for him when I found you all - I'm *so* glad to find this website - I'm going to tell my son's doctor about it - they should pass it along to new patients.
Thanks - that's our story (so far...)
ChampsMom