Beautiful new baby boy with Cf- What cf center?????

L

Lee2006

New member
Hi I am new here and have lots of questions . My baby was born 2 weeks ago with CF and still in the hospital <img src="i/expressions/face-icon-small-sad.gif" border="0"> , we are trying to choose the best CF center for him. We are deciding between Dupont in Delaware and Childrens Hospital in Pa. Any info would be great, my head has been spinning from all this and I just want the best care for him. Thanks
Lisa mom of Tommy Luke 2 weeks old w cf
Jayna 8 years old w/o cf
 
F

folione

New member
I've heard good comments about both - especially PA. Keep in mind too that you have to go to CF clinics on a regular schedule and distance/convenience can be relevant too. It's hard enough dealing with CF, let alone if each clinic visit is a major excursion.
 
A

anonymous

New member
While I dont know the best center, I want to remind you of something I have learned along the way. Over the years we have learned that being close to our family and friends as a support system has been very very important to all of our emotional and physical health.

My husband had to choose between the excellent CF docs in Cincinnati and no family or excellent Cancer docs and our family in Columbus. We had already been the cinci route and decided that being near family was a very large part of our decision.

Your entire core group will be effected by this diagnosis and you will need support just like your baby will need care.

So keeping that in mind, there is no problem with consulting with the best docs in the country maybe once a year and having local docs carry out the care. It doesnt mean you have to pick up and move to a strange place.

I am sure this week is very very hard. My heart and prayers go out to you and your family during this difficult time! I just cant imagine and hope you feel all the support and love this group of people are sending your way!
 
C

catboogie

New member
lee,

sorry to not have a responce to your question. i just wanted to say i hope you can get good information and that you will feel supported and welcomed here. keep in mind, there's nothing wrong with making appointments at BOTH clinics and then deciding which one you prefer...

laura
 
C

catboogie

New member
hey kelly!

sorry to hear about your worries yesterday. glad your kidney's are okay for now. hopefully you can find a way to keep them okay down the road!

as for the cipro, i know a lot of times the docs say to take it on an empty stomach, but my doc has told me that doesn't really matter. it might irritate your stomach less if you eat a bit of food with it.

laura
 
D

Diane

New member
Lee,
I live in Pa. and hear that Childrens Hospital is a good place for cf children. I went to St. Christophers Hospital ( in Pa.) for children when i was young, and they are also known for being good for cf children. I like what Catboogie suggested .... making appointments at both and making your decision based on that.
 
A

ambie20

New member
yale children's hospital in new haven connecticut is really good. i was diagnosed at birht as well and have been going there for 20 years. they treat you like family and you really feel at home. they also are very informative and give you alot of resources to learn more things.

have you ever heard of a little girl named alex? (i cant remember her last name) but her dad wrote a book about her and a movie was made form the book. but anyway she had cf and died in the 70's when she was like 8 or 9. well to the point her doctor(Dr. Dolan) was my doctor until her retired. just thought that was a cool piece of info i would share. <img src="">

<a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/1558535527/qid=1149470283/sr=2-1/ref=pd_bbs_b_2_1/104-8550763-4535158?s=books&v=glance&n=283155">http://www.amazon.com/gp/produ...ooks&v=glance&n=283155</a>
 
You must log in or register to reply here.
Top