- Location
- Northern California, USA
Hello everyone. I am the parent of a 16 yo boy with CD whom I call Badger. He was diagnosed when he was 10. It took a couple years to get him into remission but he was in a good remission for about 4 years. He is starting to flare but we are upping his meds and hoping for the best.
The treatments he has had over the years include: exclusive enteral feeding via NG tube, Pentasa, 5ASA enemas, sargramostim, budesonide, prednisone, 6-MP, Methotrexate, Humira.He has participated in a couple clinical interventional trials and several observational ones. I fought hard to keep him off "drugs" with two rounds of EEN, diet and determination. None of that was enough and I had to accept that meds were the only way my son was going to get better and that his life depended on getting better.
Badger does not have a typical CD presentation and his diagnosis was delayed for this reason. Rather than diarrhea he develops constipation. His labs are pretty much useless as guides to his illness - perfect except when he is nearly at death's door.
When he was sickest his intestines simply stopped working and became completely obstructed by stool. This happened several times, each time required hospitalization for clean out. Badger went through a lot of invasive testing because his then ped GI refused to believe these problems were due to Crohn's. Badger also develops perianal disease when he is flaring. As is true for many boys with CD, he is shorter than he should be due to poor growth but has recently reached 5'7" which has pleased him a great deal as that now makes him as tall as his mom. :soledance:
A couple ped GI's later we started him on Humira and 6-MP. We later switched him from 6-MP to methotrexate plus Humira. 2 years ago he refused to continue the Humira because the shots were so painful and he was feeling good. He has been lucky until recently when some of his symptoms returned and his MRE showed inflammation and enlarged lymph nodes.
If you frequent or know about Dragonpack, you will recognize me. I have posted there ever since I discovered it 6 years ago. It was a life-saver and I do my best to pay forward the gifts of support and guidance I have received from the other parents I met there.
The treatments he has had over the years include: exclusive enteral feeding via NG tube, Pentasa, 5ASA enemas, sargramostim, budesonide, prednisone, 6-MP, Methotrexate, Humira.He has participated in a couple clinical interventional trials and several observational ones. I fought hard to keep him off "drugs" with two rounds of EEN, diet and determination. None of that was enough and I had to accept that meds were the only way my son was going to get better and that his life depended on getting better.
Badger does not have a typical CD presentation and his diagnosis was delayed for this reason. Rather than diarrhea he develops constipation. His labs are pretty much useless as guides to his illness - perfect except when he is nearly at death's door.
When he was sickest his intestines simply stopped working and became completely obstructed by stool. This happened several times, each time required hospitalization for clean out. Badger went through a lot of invasive testing because his then ped GI refused to believe these problems were due to Crohn's. Badger also develops perianal disease when he is flaring. As is true for many boys with CD, he is shorter than he should be due to poor growth but has recently reached 5'7" which has pleased him a great deal as that now makes him as tall as his mom. :soledance:
A couple ped GI's later we started him on Humira and 6-MP. We later switched him from 6-MP to methotrexate plus Humira. 2 years ago he refused to continue the Humira because the shots were so painful and he was feeling good. He has been lucky until recently when some of his symptoms returned and his MRE showed inflammation and enlarged lymph nodes.
If you frequent or know about Dragonpack, you will recognize me. I have posted there ever since I discovered it 6 years ago. It was a life-saver and I do my best to pay forward the gifts of support and guidance I have received from the other parents I met there.
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