Famous Poop

Elizabeth has always had an amazing way of self-soothing. I know I have mentioned this before. Even as a toddler, she was able to put herself into another place mentally. You would swear she was asleep or had been given a sedative, but in fact she just knows how to calm herself almost as if in a hypnotic state. It is amazing what out minds and bodies are capable of and how we can instinctively get through things.

Sometimes though, it is best to just play possum and pretend to be asleep, while cuddling with your daddy.....


An hour and a half into the appointment, while we were waiting for the rest of the Infectious Disease team to meet, Liz went from hiding under her sweater to truly falling asleep. We tested her by loudly commenting that her rectal exam was going to begin (there was no rectal today)....she didn't open her eyes or move, so we knew she was really asleep. Sweet girl.




This morning we went to a land far, far away..... not really, it was only UCLA. For us though it felt like a different world. We can walk the halls of Miller Children's with our eyes shut and we know almost everyone by name. CHLA is even a bit comfortable for us, and Cedars-Sinai is too. We have never been to UCLA before and it felt awkward to be somewhere new. We were treated wonderfully there and I am glad we made the decision to follow through with seeking the opinion of their Infectious Disease team.
Turns out that though the people there were strangers to us, Elizabeth had already made herself known, just by her chart notes, and her case has already been the topic of discussion there. I joked and told her she has famous poop.... she did not laugh.
Our appointment was LONG. The doctors spent so much time with us and then met with a colleague, discussed Liz, and came back for more discussion. There is much to report, but it is lengthy and a bit drawn-out, so I will note the most important things.
First, the doctors we saw have only had one other case like Elizabeth's, meaning one case where the CDiff lasted so many months and lived through so many rounds of heavy antibiotics. That case was a boy who had had a bone marrow transplant and then developed CDiff. Because of his immune system and other factors, his body had a hard time ridding the CDiff.

We have a few options for Liz, in the opinion of UCLA-
1. We can wait and do nothing and see if her gut will restore itself; if her good bacteria will overpower the CDiff and the toxic CDIff spores will back-off, giving way to the healthy bacteria. Oh, how this is our prayer!
2. She can start on Difficid- a new drug, cleared by the FDA in April. It has only been tested in adults and is obviously very, very new.
3. She can go back on the Vancomycin and we'll see if her ringing in the ears returns, which would confirm Ototoxicity and she would then be taken off the Vanco. immediately.
4. Though she developed a rash and itching while on the Flagyl in April, a clear reaction, we can try the Flagyl again and see if she has te same reaction. This carries it's own risk if her reaction in April was truly an allergic reaction to the Flagyl.
And finally
5. We can do a Fecal Transplant. A fecal transplant has never been done at UCLA. It is widely practiced in Europe, but not in the States. While it is an easy procedure to do (administered through and NG tube in her nose, down to her gut), it carries its own risk. The doctors told us it is on the same level as a Tissue Transplant, so there are risks of rejection, infection and given her immune issues, not the first choice. It is absolutely on the table though, and the UCLA pediatric doctors have consulted with the adult infectious disease and gastro. docs.

Today she had a stool sample collected. UCLA has a newly developed way of testing for CDiff. They actually check DNA and the quantitative toxic spores. We should get those results this week. If she does not get much worse before those results are in, we will wait for those to decide our next step for treatment.
UCLA also recommended we see a Gastroenterologist there for a second opinion as they agree with several doctors here in LB in thinking she has a GI disease and needs further testing. This is a totally separate issue from the CDiff, but finding a root disease would help in explaining her immunity issues and fixing the immunity issues will help in treating the CDiff. It is a hellacious cycle. Round and round and round we go with this all.

Her body is fighting the infection so hard. We just keep praying and cheering on her little tummy...hoping that she will finally kick this. For now, she'll have to keep going and we'll have to wait.