Bailey, Brain surgery and C-diff

[bugem2]

My 15 year old daughter was diagnosed with a brain tumor in the vermis area of her brain. She had surgery on May 17th and the tumor was removed, we thought. She didn't have a drain put in and was suffering from horrible headaches but as she was stable, after about two days they moved her from PICU to step down. When she first moved into the room I was horrified because it wasn't clean and it looked terrible (there was a patient already in the room as well). On the 20th she began to have diarrhea and was given imodium, she was still having terrible headaches and was on a ton of pain medication and also clyndamician. We knew she was allergic to Ampicillin and Amoxocillin and had warned the dr's that she had quite a lot of sensitivity to antibiotics. The following day she began to have uncontrollable diarrhea and we were told they only were able to take out 30% of the tumor. The dr. suggested a second surgery before the skull healed and they had to redrill. We agreed and she had her second brain surgery on the 22nd. During her surgery she had uncontrollable diarrhea and they had to stop the surgery to clean the room. In PICU after, they tested and she came back positive for C-Diff. She got worse and worse during the 14 days of Flagyl and Vancomicyn and three other antibiotics. Her stomach grew to look like a 9 month pregnant woman. There were no bowel sounds at all and when the GI doctors tried to do a colonoscopsy, they were unable to because of the severe swelling. The GI doctor told us that she would have to have her entire colon removed as they had never seen such a horrible case. This whole time she was receiving antibiotics through IV, NG tube and rectally and was incoherent from pain. Step mom works in a different hospital and had noticed that bleach wipes were not being used to clean the rooms. She pitched a fit (which I backed entirely) and they found bleach wipes to use in her room. I had read something about fecal transplant but had been told that they didn't do that for pediatrics. We insisted on the fecal transplant, and they found a doctor who was willing to do it. Fecal transplant was done and antibiotics stopped for about three days. Bowel sounds resumed slightly and each day she was a tiny bit better. They felt it necessary to start another series of antibiotics for 14 more days. She had been NPO for 20 days at this point and they restarted food, slowly. She was still receiving 24hour TPN. She was in the hospital for a total of 1 month in PICU all but three days. She is home now and after two weeks is on TPN for 3 days a week. She is extremely slowly regaining her life. Her tumor came back as a grade 1 so no further treatment but it was amazing that her tumor became secondary to her C-DIFF. She has had only negative C-DIFF tests since the transplant and we believe it saved her life. She is the first pediatric transplant at the teaching hospital where this all happened. She has a good day and then a bad day with vomiting and diarrhea. She lost 25 lbs (she was extremely thing prior) and can just now walk up stairs again. She is taking Lactobacillis and clorestimine, both of which make her stomach hurt terribly. She is eating a lot of yogurt as well. We have no idea how long this will stay with her or if the fecal transplant will make a difference in recurrence. So far, no C-DIFF so we are hopeful.

[bugem2]

I should probably be clear: I am mom! Step dad and Dad and Stepmom and I worked together as a team, it did bring us all closer together.

[bugem2]

Haven't posted in a while and I wanted to update. many of you saw the article on C-Diff in the USA today. That young lady is my daughter Bailey. She is almost a year CDiff free (three transplants) and is one of the very very few who make it through Toxic Megacolon without losing a colon. She is a Jr. in high school with a 4.0 and tons of talent. She is really doing well but she is struggling with exhaustion. Trying to research Brain Surgery and toxic megacolon Cdiff recovery and quite frankly, there isn't any out there. Apparently the two together don't make for great survival. If anyone has any experience with recovery time etc, please share. Bailey is also having difficulty eating much. Complains of stomach aches and discomfort. How do we combat this. She takes some probiotics but they upset her stomach as well. Anyone have suggestions? She is back in school full time (after being out all last year) but I think I may have to keep her home a day a week. She is so exhausted she is now dealing with depression and the doctor says PTSD!

[Bobbie]

Burge,Wonder when we'd hear from you about how Baily is doing. Have you tried ensure?

I "feel for you." I had PTSD when my mother died 3 years ago at Xmas and again last Xmas when I was in a car accident (no fault, but damage to both vehicles). Next I broke my left wrist (unrelated to accident) and developed C. diff. again. i thought PTSD affected only those in battle situation, but doc. told me long time stress is also responsible.

Check the nutrition section for nutrition hints. Best to all of you. C. diff. is a a stubborn disease.