The other thing is, if you have PCD/KS, you have PCD/KS. You can’t have it
’just a little’, but it affects people’s health in varying degrees. At
least, that is what I’m finding.
-----Original Message-----
From: DJMina [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Monday, September 24, 2007 11:04 AM
To: Mercier, Rita L.
Subject: Re: [kartagener] Makena’s mom
I hope you looked up iga, low iga can mean chr sinusitis, bronchitis
and ear infections…i hope he checked out igg and igm also…
and did a t and b cell study…
also of course a nasal bx, you should write the pcd
foundaiton and see if they will take your child as a study.
www.pcdfoundation.org
The allergist/immunologist has done 3 different immune studies on Tristen.
WE have discussed doing IVIG and I might go that route.
What do I need to do to get Tristen considered for a study? What would they
do? Where would it be done? Thanks for the info!
Danielle
-----Original Message-----
From: betts [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Monday, September 24, 2007 5:30 PM
To: daniellemina@yahoo.com
Subject: Re: [kartagener] Makena’s mom
I am on ivig, and have pcd…it is rare to have two diseases…
but when I moved from Seattle to Arizona for my severe bronchiectasis, sinusitis, and ear problems in 1967, I was young,
but I was not getting cured like other people I have met that have
moved out West for their bronchiectasis…I got first tested
for my immune system which was zilch, so they started me
on igg shots, ivig was not available until the late 80’s…
but since I still had problems with my ears, I was sent down to
the univ of arizona, and the doc who did his training at in Denver
did a nasal bx, and repeated it…so now my cilia was not working either. I mean treatment is not different, the worse thing they
did was though take me off of ivig…now I am back on it, with more
pneumonia’s etc…with ivig my lungs will get worse…which are
already severe…
http://www.primaryimmune.org/idf.htm
www.pcdfoundation.org
will give you the info you need
Hi - this is true. Some only have dextro cardia, which is only the
heart on the opposite side. I always knew that my heart and appendix
were on opposite sides but 10 years ago I learned that all my organs
are reversed. I always have to tell the staff whenever I have any
medical tests or procedures done. It usually causes quite a stir
since it is not seen often.
On Sep 24, 2007, at 5:20 PM, Rita wrote:
-----Original Message-----
From: Rita [mailto:kartagener-cpt5988@lists.careplace.com]
Sent: Friday, September 21, 2007 11:09 AM
To: bkayyar@mindspring.com
Subject: Re: [kartagener] Makena’s mom