From Italy

[sarap]

Hello,
this is the first time I write in this forum, but here in Italy is a good way to communicate with others with the same problem, so I try to write here.
My eldest boy is 6 years old and has CF (a also have a 4 years old boy, no CF). We are planning to move from Italy to San Diego CA in 5/6 months and I would love to know someone that lives there with our problem to understand how do things work there. Medications, phisiotherapy, controls at the hospital and so on.
My boy for the moment is pretty fine, though he has two severe mutations (df508 and 17171->GA), so he does phisiotharapy with the pep mask once or twice a day, he gets the creon everytime he eats, vitamins, antiacid... well more or less that's all about us.
We are planning to move to California hoping that the weather is going to help him feel good. Is there anybody here that lives there?

Thanks a lot
Sara

 

[enniob]

Hi Sara, welcome to the forums! This is a great place to connect and learn from others that are going through what you are going through. I am sure there are many here that can help you. Califormia is a beautiful place and the fresh salty air from the pacific ocean should help a lot! Will you be close to the ocean? In the US there are many CF centers and I am sure our memebers here can advice you on some good ones.

 

[cristina2014]

Sara,

I have a daughter with CF and we lived in San Diego for a few years, we now live in Los Angeles. In San Diego we went to UCSD and her doctor was Dr. Pyan. He is a great doctor and wonderful with kids. At the time he was one the the doctors in the CF team but since then he has become the director of the CF Clinic. San Diego was wonderful for my daughter specially if you live by the ocean, we lived in Encinitas which is North County San Diego. The wonderful thing about I believe, the Clinics in California, is that the doctors work as a team, your child might see more than one doctor and it is great because you get different perspectives but they all want the best treatments etc for your child. I advise you to make an appointment with Dr. Pyan if you can, he was a godsend for us. I hope this helps. Cristina

 

[sarap]

Thanks a lot Cristina, we have a house in Carmel Valley, so pretty close to the ocean, actually that is one of the reasons because we are thinking to move... when we are there my boy feels much better, he eats more no cough no bad colds...!!

UCSD?? I thought the CF clinic was in Rady's. I am also in touch with them because we spent the summer in San Diego and I wanted to be sure to have someone to call in any case. Anyway I will ask about Dr. Pyan! How old is your daughter? I really hope we will find a team of great doctors, the ones we have here in Italy are really great I have been really lucky with them, the hospital where we go is like a family!

 

[sarap]

Thanks Chris, yes... the ocean is great and living by it it's going to be great! hope I will find some help here