Hi everyone, Happy Thanksgiving tomorrow to everyone! I haven’t
posted much lately about Livvi, because she has been doing quite
well. We’re so happy to see her full of energy and feeling good as a
3 yr. old should! Our oldest daughter, Tori-15, just had a
bronchoscopy & ciliary biopsy done last Friday,(Nov. 21st). Since
Livvi’s pcd diagnosis last January, we have been very suspicious of
Tori having it too. As a baby, a little girl & all the way through
middle school, Tori has had lots of pneumonias, breathing problems,
sicknesses, etc. She never had any lengthy hospital stays like Livvi
has, but she had LOTS of ER visits for breathing treatments, chest x-
rays, etc. We were always told she had asthma. Since Livvi’s
diagnosis, my gut feeling has been that it’s pcd for Tori too. We
finally had the bronch. & ciliary biopsy, (nasal scrapes), on Friday.
The pulmonologist said that Tori’s lungs were very red and inflamed,
her throat looked like she had bad reflux, (never diag. before), &
when the pathologists looked at her cilia in the OR, there was no
movement at all- the same thing they said about Livvi’s. I realize we
have to wait another month or so for the cilia ultrastructure report,
but it sounds like we have 2 with pcd now. My 15 yr. old is in
complete denial, refuses to admit anything’s wrong with her & is
awful about taking medicines & treatments. Are there any other
parents of uncooperative pcd teens or parents of more than one pcd
patient with any advice? Thanks & Happy Thanksgiving!
Missy
(mom to 4 girls-Tori-15, probable pcd, 14 & 7 healthy, Livvi-3, pcd)
