Yes Fran, "It's a Small World Afterall". LOL
As for the prednisone, the biggest side effect was the massive appetite increase. She wanted to eat 24/7. (Initially, this was wonderful because she had gone from about 70 lbs. down to 54 in a few months when we finally realized it was Crohn's.) Eventually, I had to restrict her a little by saying "you've eaten enough" and her eyes would tear up. She climbed to 75 lbs. while on it. She got a bit of the moon face, but really nothing that looked like more than weight gain to most really...no one, not friends or anyone, said much about it and this was a relief to both of us. She had gotten so thin in the face prior that it was almost a relief to see her puff up some. Oh, another side effect I forgot about... She had trouble sleeping, getting to sleep and staying asleep was a challenge. That said, it made for great school mornings as she was up and bouncing around ready for the day bright and early and cheerful. None of these side effects presented what I would call "major" issues and paled in comparison to how much better she felt and looked.
Funny that our docs are from the same facility and have such different approaches. I think ours is starting with the most mild approach, in hopes that she'll respond positively without having to jump right into something like Remicade. That's fine by us.
As for the SCD, my husband and I have the same thoughts as you. As she gets older and more mature, perhaps she'll be more willing to work at managing her disease through diet. In the meantime, we just do our best to keep her healthy and I worry endlessly.
By the way, have you ever heard of probiotic enemas? A friend is doing this for her daughter (10 yr.) with severe colitis and she claims it is working. A "more direct"route than oral probiotics I guess. I am considering it.
Posts refer to my 9 year old girl
- Started with 30 mg Prednisone, tapered off over 3 months
Then continued with:
- Pentasa, 3 blue horse-sized capsules, 3 x daily
- Forvia multivitamin/mineral for Crohnies
- VSL#3, 2 x day
- Custom Probiotics: 6-Strain Blend, 1 x day
- Culturelle, 1 x day