AZMOM
Moderator
- Joined
- Nov 12, 2010
- Messages
- 1,457
Hi! I'm happy to have found this forum. I spent a lot of time reading yesterday to decide whether or not I wanted to post. However, it seems like there are a lot of caring, supportive folks on here so I'm going to give it a shot. I routinely post on the CCFA forum and it is great but there are some folks on there that tend to be very critical and it has made me uncomfortable and frustrated at times.
Anyway, my daughter, Claire is 7. At age 3 she was diagnosed with polyarticular juvenile arthritis. We had a tough time getting her into remission but Enbrel was our miracle. 3 weeks after starting Enbrel, she was in complete remission. I'll never forget hearing those little feet RUN across the hardwood. She had not been able to run in months and I just cried and cried.
She started feeding herself again, coloring, running, playing with her friends. I called the makers of Enbrel to say thank you for giving us our little girl back.
Fast forward to just before her 6th birthday. We were in Hawaii on vacation with family and Claire became very ill. After 3 visits to the ED because she was unable to pee and then lost bowel control, we flew home with a foley and went to the children's hospital. After a month of testing (and a horrible C Diff infection in the middle of it all), she was diagnosed with Transverse Myelitis. TM is considered an "adverse neurologic event" and unfortunately, that is one of the black box warnings on Enbrel. So, we immediately stopped the Enbrel. All of this took place over a 2 month period.
11 days after stopping the Enbrel, Claire started yelling from the bathroom. And as many of you can guess, I went in there to find the toilet full of blood and pretty much nothing else. I know you can relate. I loaded her up and drove to the hospital. Things got much worse, 15-20 toilet episodes a day during the first few days of hospitalization, very anemic, fever, etc. So, after admission and workup, she was diagnosed with Crohn's Disease. Her Peds GI theorized that the Enbrel kept her just suppressed enough that she couldn't have a full-fledged flare and now it was, in his words "rip roaring". As far as where her Crohn's was, he said everywhere and they "couldn't believe she eats at all". She had mouth sores and then the aphthous (spell??) ulcers and granulomas from her esophagus through her rectum. And of course, the skin tags. Anyway, we were there for 2 weeks.
Because of the Transverse Myelitis event, she can't have any TNF blockers because they all carry that risk. So Remicade, Humira, etc are not choices for us. I wish they were. We started the typical course of Prednisone and 6MP. It took about 5 months to get here weaned off the steroids and the 6MP to a therapeutic level. The current doc theory (and I agree) is that for Claire, the arthritis and the Crohn's are separate.
But now......we have been OFF the steroids for a year and she has maintained remission on just 6MP. Alo, the arthritis has remained quiet - even at the worse of her Crohn's flare. We are just SO thankful this is working and also thankful for every single day that she feels great. :thumleft: I always say that all this autoimmune craziness is part of who she is but it doesn't define her.
We have also moved back across the US to be closer to our families so I should really probably be KYMOM instead of AZMOM. Ha.
So, there's the short version of our story. I look forward to being part of this online community. Thanks for listening.
Anyway, my daughter, Claire is 7. At age 3 she was diagnosed with polyarticular juvenile arthritis. We had a tough time getting her into remission but Enbrel was our miracle. 3 weeks after starting Enbrel, she was in complete remission. I'll never forget hearing those little feet RUN across the hardwood. She had not been able to run in months and I just cried and cried.
She started feeding herself again, coloring, running, playing with her friends. I called the makers of Enbrel to say thank you for giving us our little girl back. Fast forward to just before her 6th birthday. We were in Hawaii on vacation with family and Claire became very ill. After 3 visits to the ED because she was unable to pee and then lost bowel control, we flew home with a foley and went to the children's hospital. After a month of testing (and a horrible C Diff infection in the middle of it all), she was diagnosed with Transverse Myelitis. TM is considered an "adverse neurologic event" and unfortunately, that is one of the black box warnings on Enbrel. So, we immediately stopped the Enbrel. All of this took place over a 2 month period.
11 days after stopping the Enbrel, Claire started yelling from the bathroom. And as many of you can guess, I went in there to find the toilet full of blood and pretty much nothing else. I know you can relate. I loaded her up and drove to the hospital. Things got much worse, 15-20 toilet episodes a day during the first few days of hospitalization, very anemic, fever, etc. So, after admission and workup, she was diagnosed with Crohn's Disease. Her Peds GI theorized that the Enbrel kept her just suppressed enough that she couldn't have a full-fledged flare and now it was, in his words "rip roaring". As far as where her Crohn's was, he said everywhere and they "couldn't believe she eats at all". She had mouth sores and then the aphthous (spell??) ulcers and granulomas from her esophagus through her rectum. And of course, the skin tags. Anyway, we were there for 2 weeks.
Because of the Transverse Myelitis event, she can't have any TNF blockers because they all carry that risk. So Remicade, Humira, etc are not choices for us. I wish they were. We started the typical course of Prednisone and 6MP. It took about 5 months to get here weaned off the steroids and the 6MP to a therapeutic level. The current doc theory (and I agree) is that for Claire, the arthritis and the Crohn's are separate.
But now......we have been OFF the steroids for a year and she has maintained remission on just 6MP. Alo, the arthritis has remained quiet - even at the worse of her Crohn's flare. We are just SO thankful this is working and also thankful for every single day that she feels great. :thumleft: I always say that all this autoimmune craziness is part of who she is but it doesn't define her.
We have also moved back across the US to be closer to our families so I should really probably be KYMOM instead of AZMOM. Ha.
So, there's the short version of our story. I look forward to being part of this online community. Thanks for listening.
