Feeling lost. need help.

[destiny09]

My daughter presented with the flu in march, which lead into liver failure, we fought that and in may her blood started doing crazy things, that lead into a bone marrow biospy, they said she lost over 95% production. She has very severe apastic anemia. In june they put a port in and did ATG, she had a critical blood infection, in July she had a fungal infection in the sinus and in lung, she was hospitalized june and july and had 2 sinus surgeries and a piece of her lung taken out. She is getting tranfusions for platelets twice a week if not three, hemoglobin once a week and we are going neupogen shots nightly. she is on neoral,b/p meds,liver meds,kidney meds and anti-funal meds. They are doing another bone marrow biospy on Oct. 8th. We are going to Devos Childrens Hospital where they tell me they see aplastic anemia all the time and it's not that rare. She has been tested for over 65 diseases at the mayo clinic, has liver doctor in chicago, ann arbor.... Things don't seem to getting any better after ATG...Now this week they are telling me the anti-depressant zoloft can attack platelets and promote bleeding and they have had her on that for months. the entire journey is at www.carepages.com search alexisrose
Please let me know if any one has good ideas!!! I have the material from here, she has a 10 out of 10 match in the bone marrow regristry, but they aren't even talking bmt.... just not convinced that they are such experts in this area.

Thanks,
Destiny

[Neil Cuadra]

I'm very sorry to hear about your daughter's health problems. Treating a combination of conditions -- severe aplastic anemia, liver failure, and depression -- while preventing further infections, must be quite a challenge for even the best doctors. It may be made even harder by the lack of statistics on (and experience with) patients who have a similar combination of problems. If your daughter has multiple doctors, especially at different treatment centers, make sure they each know all of the treatments she is getting and medications she is taking.

When you went to treatment centers in Ann Arbor and Chicago did you get consultations or second opinions about her severe aplastic anemia? The University of Michigan in Ann Arbor and of course the Mayo Clinic are excellent centers with a lot of aplastic anemia experience. So are the University of Chicago, Rush University, Northwestern University, and Loyola University in Chicago. You should keep asking questions until you get answers, including why a transplant might be ruled out (or ruled out for now). You and your daughter deserve to work with doctors you have confidence in, even if they aren't the closest ones to home.

[bchenaille]

Destiny:

My heart goes out to you. In September of 2008 our daughter Kathryn was diagnosed with SAA. I scoured the internet for weeks trying to make the right decision in a world that has so few answers. My wife & I happened to come upon this article in AAMDS.org under "Stories of Inspiration and Hope":
http://www.aamds.org/aplastic/inform...rkes_story.php

I was able to contact Vincent Burke and had amazing conversations with him. Like him, we chose the Cytoxan treatments at Johns Hopkins Hospital in Baltimore, MD. I believe they are the only hospital in the country treating SAA using hi-dose chemo therapy and they are having great success. It is basically the same regimen patients go through before a bone marrow transplant, minus the radiation.

Kathryn underwent 4 days of chemo in November 2008. After living out of the Ronald McDonald House for 3 months, we came back home and her counts have steadily increased and she is back to living a normal child's life.

In Selena Burke's case, this treatment cured her hepatitis as well so it was a double blessing for her. The other benefit of Hopkins' treatment is that the only medication patients are on after treatments is antibiotics to protect from infections. Once Kathryn's immune system was close to normal, she was off everything completely.

Here is one of the articles that convinced us to get a 2nd opinion at Hopkins:
http://www.hopkinsmedicine.org/hmn/S01/top.html

If you would like to talk, my email is:
bchenaille@comcast.net