This is, as the title suggests, one in a series of posts, almost entirely derived from emails from her family that they send me periodically to keep us up-to-date.
At the end of this post, and in a few minutes all the others, is a standard block of text with links to each part of the story of this child, as well as some additional information.
More good news on the progress of “A”.
This latest from her father:
I thought I’d write you on a few things, as the good news on “A” has gotten better. First, we got the shipment (whipworm – Jasper), and everything went well. I realize I have yet to pay for it, but I will fax the credit card information to you early next week. I apologize for the delay. The second thing is that “A’s” GI got the biopsy slides back from her recent colonoscopy and the results were fantastic. They showed only mild inflammation, and no granulomas. Her previous slides from last years colonoscopy had shown bad inflammation, and granulomas everywhere. Her doctor said particularly the granulomas disappearing was “amazing”. I’d like to know to what extent of amazing the disappearing granulomas are, but I can’t find much information on granulomas as it relates to Crohn’s. But none-the-less it is obviously a great thing, and further reinforces the effects of the therapy. I also mentioned to her that you would be interested in talking with her, and she said that was fine. I’ll give you her information again, Dr. Name and contact information redacted – Jasper.
So good luck. She seems very excited about “A”, as are we.
On another note, I found a group on parents of children with IBD on the web. I read some of their stuff, and felt a particular kinship with both them and their kids. Needless to say, much of the subject matter is not pleasant. I was struck by the fact that their experiences could be an alternative for ours, had we not been so fortunate. I plan on posting a little thing about our experience with helminths. Perhaps someone could be moved by the irrefutable facts of “A’s” success. I’m not at all sure of the response I’ll get, if any, but if you don’t mind, and someone is interested, I could pass your information on to them.
Second recent email:
It’s good to hear from you again. You may post what you would like on your blogs, we trust in your discretion. Another good thing on “A”, is that since she got the second dose she has gotten even better. Her stools have been almost completely formed for weeks now, and we have seen absolutely no blood. This is certainly her longest run yet.
We will continue to stay in touch, hopefully with only good news! Thanks again to you and everyone else involved.
Fantastic, isn’t it?
Links to rest of series on “A”
“A” was under 2 years old when diagnosed with Crohn’s Colitis, and the disease appears from the family’s descriptions to have been severe and aggressive. They approached us when the recommendation for treatment from the child’s Gastroenterologist was one of the biologics, either Remicade or Humira, I cannot remember which.
Below are links to each of the four posts, so far, which for the most part are just emails from the child’s dad on “A’s” progress, and his thoughts and observations.
Managing the links between the posts has become cumbersome, so I have created this standard block of links to tie the story together, explain the context if someone happens upon one of the posts and does not realise they are part of a series, and will probably make a static page to aggregate the whole thing.
Part 1: Part 1 of the story of “A”
Part 2: Part 2 of the story of “A”
Part 3: Part 3 of the story of “A”
Part 4: Part 4 of the story of “A”