I am newcomer...My 9 year old daughter is diagnosed with CF.

MAK8675308

New Member

Joined : Nov 2018

Posts : 1

Posted 11/25/2018 9:30 AM (GMT -7)

Hi. My daughter was diagnosed as a baby with Cystic Fibrosis. The last couple of years she has been on antibiotics more than not. Stenotrophomonas maltophilia has continued to grow in cultures and she's averaging about 40 percent lung function. Sometimes lower....Why wouldn't they try and eradicate it early on??? My Mommy radar was up years ago but I trusted their judgement... Her care team that is... She's had soooo many PICC lines that her body can't take anymore. Hence, she got a port last month. Can this bacteria... Stenotrophomonas maltophilia be eradicated??? She has had multiple hospitalizations and home recovering time. I am a single Mom and it's just hard watching my daughter suffering. Anyone dealing with anything similar?

Chutz

Forum Moderator

Joined : Jan 2005

Posts : 9477

Posted 12/4/2018 12:50 PM (GMT -7)

Hi and welcome to Healing Well. I don't have much experience with CF except for a friends' son who had it years ago. I did some looking around to see if I could find anything that might give you more hope. Here are some links to articles that might help. Good luck and warm hugs to your daughter.

Warmly,
Chutz

https://academic.oup.com/jac/article/62/5/889/724259

https://www.cochrane.org/CD009249/CF_antibiotic-treatment-stenotrophomonas-maltophilia-people-cystic-fibrosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4142553/

https://www.google.com/search?q=+Can++Stenotrophomonas+maltophilia+be+eradicated&ie=utf-8&oe=utf-8&client=firefox-b-1

ForverFinding

New Member

Joined : Jan 2019

Posts : 17

Posted 1/13/2019 9:50 PM (GMT -7)

I’ve had it for 18 years and it started to change me 2 years ago when I began culturing pseudomonas chronicle.

Beachbumgirl

Regular Member

Joined : Jan 2016

Posts : 97

Posted 1/16/2019 12:11 PM (GMT -7)

Hi Mak-
Welcome! Has your child had an Infectious Disease consult at a reputable Children’s Hospital in the area? If not, that would be my first place to start. They can also answer many of your questions.

Best wishes 🌸

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