- Joined
- Jul 24, 2013
- Messages
- 15
Hi, everyone!
I am new here and am looking to give and get support for dealing with children who have Crohn's disease.
My name is Jess, and my 12 year old son Michael has had Crohn's for the past 4 years. His paternal grandmother was diagnosed with Crohn's back when she was around 19 years old - she nearly died three times from perforated bowels and the resulting infections, but then about 40 years ago it just went away. No symptoms or problems in 40 years, no meds, and colonoscopies show no active disease. We're still not sure if she really had that and something put here into really long-term remission or if it was something else. We are just hoping that Mikey's disease goes away, in similar fashion!
He was diagnosed when he was 8, and it was a big surprise. He was never a puker and was more likely to be constipated than have diarrhea. He was referred to the surgery department at Children's because he had an infected lump on his bottom and the doctor thought it needed to be lanced. The surgeon took one look at it and called the gastroenterologist, and he told us right off that it was a fistula nearing the durface, not an infected lump starting from the outside (the skin side)!
After getting his labs under control with prednisone, a laughable attempt at Pentasa (kinda HUGE for an 8 year old to swallow!), and an unsuccessful trial of
Imuran, he was put on Remicade for a couple of years At first, he was also on methotrexate, but that caused horrible bone pain and flu0like symptoms. The Remicade worked wonders until he developed antibodies to it and it stopped working. Then he spent three months in and out of the hospital with a horribly infected fistula and a torn anus due to the seton drain going horribly awry (his anal area was apparently so messed up from the infection that the drain cut through it and he ended up being incontinent for a month while it healed).
About 4 months ago, he was switched to Humira. Although it hurts like hell, he had a good response at first: his weight went up (it had made almost a hairpin turn), his labs improved a little, and he had fewer symptoms. Unfortunately, even though we are giving it every 10 days he is having worsening symptoms. He gets belly pain at least once a day and has diarrhea frequently. I'm calling his doctor tomorrow, but I'm worried. What can come next? Humira is one of the "big guns" - what else can be done?
So my questions are:
1. Has anyone else had a child who has had a similar path? What might the next option?
2. Has anyone had success putting their child on the specific carbohydrate diet? How hard is it to make foods that kids will eat?
A little bit about me: I actually have a degree in molecular and cell biology, and last year I moved from working in microbiology to working in Immunology. I currently study lupus and rheumatoid arthritis, but I hope to be able to get funding for Crohn's some time in the near future. So, if anyone has any science-based questions I would be happy to answer them if I can
If you have read this far, thank you!
I am new here and am looking to give and get support for dealing with children who have Crohn's disease.
My name is Jess, and my 12 year old son Michael has had Crohn's for the past 4 years. His paternal grandmother was diagnosed with Crohn's back when she was around 19 years old - she nearly died three times from perforated bowels and the resulting infections, but then about 40 years ago it just went away. No symptoms or problems in 40 years, no meds, and colonoscopies show no active disease. We're still not sure if she really had that and something put here into really long-term remission or if it was something else. We are just hoping that Mikey's disease goes away, in similar fashion!
He was diagnosed when he was 8, and it was a big surprise. He was never a puker and was more likely to be constipated than have diarrhea. He was referred to the surgery department at Children's because he had an infected lump on his bottom and the doctor thought it needed to be lanced. The surgeon took one look at it and called the gastroenterologist, and he told us right off that it was a fistula nearing the durface, not an infected lump starting from the outside (the skin side)!
After getting his labs under control with prednisone, a laughable attempt at Pentasa (kinda HUGE for an 8 year old to swallow!), and an unsuccessful trial of
Imuran, he was put on Remicade for a couple of years At first, he was also on methotrexate, but that caused horrible bone pain and flu0like symptoms. The Remicade worked wonders until he developed antibodies to it and it stopped working. Then he spent three months in and out of the hospital with a horribly infected fistula and a torn anus due to the seton drain going horribly awry (his anal area was apparently so messed up from the infection that the drain cut through it and he ended up being incontinent for a month while it healed).
About 4 months ago, he was switched to Humira. Although it hurts like hell, he had a good response at first: his weight went up (it had made almost a hairpin turn), his labs improved a little, and he had fewer symptoms. Unfortunately, even though we are giving it every 10 days he is having worsening symptoms. He gets belly pain at least once a day and has diarrhea frequently. I'm calling his doctor tomorrow, but I'm worried. What can come next? Humira is one of the "big guns" - what else can be done?
So my questions are:
1. Has anyone else had a child who has had a similar path? What might the next option?
2. Has anyone had success putting their child on the specific carbohydrate diet? How hard is it to make foods that kids will eat?
A little bit about me: I actually have a degree in molecular and cell biology, and last year I moved from working in microbiology to working in Immunology. I currently study lupus and rheumatoid arthritis, but I hope to be able to get funding for Crohn's some time in the near future. So, if anyone has any science-based questions I would be happy to answer them if I can
If you have read this far, thank you!