Just found out my 7mth old has PCD

Jennifer - posted on 10/08/2012

Kelly,



The book is off the PCD Foundation website. If you still can't find it, I can email you a copy.



Good luck with everything!

Jennifer

Kelly - posted on 09/25/2012

hi :)



your daughter sounds amazing, you have done well :)

is there a chance you can attach the link please? i have been looking but cant seem to find the book your talking about.



many thanks for sharing about your princess



:)

Jennifer - posted on 09/19/2012

My daughter, Brooke, was born in 2006 diagnosed with Situs Inversus Totalis and PCD. Those two together classify her as having Kartagener Syndrome.



Her early years were filled with active flushing and physio therapy by me. I would leave work during my 30 min. lunch to run to her daycare and provide some relief for her. Yes, very tiring but well worth the time to prevent pneumonia. I never thought I was doing enough, but I was doing all that I could and had to accept that. I would search the web and advocate for her in my town to find someone with the same condition that was older to seek advice. I have found in the past years, that it has been less demanding since she is now almost 7. She is very independent and can do a lot of things on her own now. Her airways are larger, therefore, allowing more drainage. She still to this day has drainage in her nasal passageways and ears. Constant! When she started kindergarten, I printed off the child friendly book off the PCD website for her teacher to read to the class. This was great for them and the teacher! They somewhat understood that this is Brooke and she is not sick. I provide teacher with a lot of tissue, since Brooke we be using it daily. Her kinder teacher was amazing! Allowing her to get up as needed to blow her nose and keep it clean. She just has LOTS of gunk. She was on many different antibiotics from birth until about 4 years old. I was teaching and coaching full time. Divorced and a single mom with a son who is 3 years older than Brooke. He needed my attention too. I purchased the VEST and that gave me a some relief while helping Brooke. She would wear her vest 20 min. three times a day while doing her albuterol neb treatments. Her ears would get infected and the dr. we would go. He would prescribe Ciprodex ear drops. They worked! Flushing is the only preventative for her infections. Daily!



Brooke developed pneumonia in December of 2009. I assumed that reflected on me and I had to do more for my little girl. So, the only documentation treatment out there that was similar to PCD was CF. I inquired about Pulmozyme from Genetech Jan. 2010. She started her neb treatments with Pulmozyme that January and she has not been to the dr. since. I do believe this was due to the Pulmozyme. It was amazing to see what she was able to get up after she started this med. Pulmozyme acts like scissors to "cut" up the mucus. I was so happy!



Brooke is now in first grade and is doing wonderful! We have not been back to the dr. since Dec. 2009. Yes, she still has the gunk but no infections.



I hope this helps someone. I used to think she was going to die or be sick all her life. I was wrong. All that worry for nothing. She is your normal 7 year old who is just like the rest with extra boogers! I have always told her that she is special but not to the point of extra attention. I never felt sorry for her and she feels the same way. She now tells her classmates that, this is just the way God made me. So cute! She also thinks it is pretty cool to put her hand on her heart opposite her classmates. She told me the other day that they were telling her she was doing it wrong. Brooke simply said, "No, I'm doing it right for me. God put my heart over here and I'm special." You go girl!



Have a blessed week!

Jennifer

Jennifer - posted on 01/01/2012

Steam showers!!! This does wonders. Put a towel at the bottom of the door and get it as steamy as possible. I always get something to play with for at least 20 min.

Jennifer - posted on 04/26/2011

My daughter who is 5 now was diagnosed with the same thing when she was 2 years old. She was also born with a heart defect. (TGA) We do a saline nose rinse 2 to 3 times a day with her.

Kelly - posted on 09/14/2010

thanks,
he is on flixotide and ventilin and occasionly they put him bach on the neb, but alot of the time this doesnt seem to stop his wheezing sometimes we do physio 3 times a day but he doesnt seem to be getting much up with this either.
what is vest clearance tx?

Abbigail - posted on 06/11/2010

We used to have to basically sit on our daughter to do nasal clearing with bulb syringe. We use nebs and vest clearance tx, also.