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lauryn.tubes...if your daughter has two CF mutations - is she not already on a CF regime? Maybe I did not understand your statement? My son only has shown the digestive symptoms so far - and he does CPT three times a day and is on all kinds of nebulized lung meds plus kalydeco.

Does not sound like other CF symptoms - but to be sure - get a sweat test. I think your regular pediatrician can order that. My son - 10 - also has CF and autism - dx at birth through screening. No history in our family either as far as we know. I thought I was alone in the world. If you need...

If you are feeling dizzy when you are working out - that is heat exhaustion - I think due to losing too much salt - and you really need to pace yourself and try not to do exercises that make you sweat so much. Lift light amounts of weight instead of heavy - or use your own body weight. Do...

I think the thing about all CF centers is they follow - or should follow - a standard protocol for care - and all should be on the aggressive side to treat testable infections. The only difference is if you actually get a doctor you like and get along with and respect that they are doing the...

how do you guys handle taking meds while pregnant?

What about boiling? That also sterilizes?

If you have two mutations and a positive Sweat Test - isn't that enough for a diagnosis? I don't understand who is refusing to diagnose CF but I would see another doctor if I were you - keep trying as Jaimers said.

Would you be able to spread the word about our CF Family in need of a new kitchen? We are in a contest on the Rachael Ray show and we made the final three. But to win we need all of our CF friends to help. We need you to vote for us. So please go...

I am so enjoying reading all these posts. I am a mom. My son was diagnosed at 4 weeks old - on our one year wedding anniversary. He also then was diagnosed with Autism at 16 months. He is 9 years old now and has the most wonderful smile. I love him to death. I cry a lot.

I have researched this for a while - because it is very difficult to go on vacation as a family without staying in a place with a kitchen. My next attempt was to use a fry daddy - it will keep the water boilng for the recommended 10 minutes. 10 minutes in a microwave does not keep the water...

I just have a question about those of you with CF who have been pregnant - did you go off all meds during the pregnancy? Also - what about your chest PT? I think it is great that you guys want to have children but I am curious what your CF center says about whether or not you continue your own...

Thank you Aboveallislove -I need to find a way to contact that mom who wrote that blog to see how she got her very young son to start taking that pill. My son has Autism - he will just not take a pill that does not dissolve or does not taste good. We still put the enzyme beads in applesauce and...

I am a mom - and I totally hate the whole sterilization process - but it is for my son's health - so I never think I do not have time -this is something I make time for and stay up late if I have to. We use 6-8 per day - one clean new sterilized one for each use/med - and just rinse them after...

2roses: Wow - ok - seems like your results are very good. My son will be 9 this year and has only had to be on anti-biotic one time - thankfully - and never has been hospitalized for being sick. He has autism too so we really cannot do PFTs - we just get the respiratory therapist to do deep...

I totally think my son is one of those 150 people - I about drained every ounce of liquid in my body with tears when I talked to his pulmonologist about this. Of course I was the one who had to inform HIM - but I don't really care. Does anyone know anyone who is on this? Does it mean an end to...

I also was told I better try to have kids soon - at 35 years old. So soon after marriage - we started trying right away - got pregnant within a couple of months. I was tested as a non-carrier in pre-natal testing - so my husband was not tested. Come to find out - our Son was born with CF anyway...

Carriers I wish you both the best. I was tested as a non-carrier in pre-natal testing - so my husband was not tested. Come to find out - our Son was born with CF anyway. You never know what life will bring - all you can do is try to enjoy every moment. Our Son also later was diagnosed with...

My son is 7- and because he also has Autism - I am still giving him enzymes spoon fed in applesauce. He did have a phase in school where he was not taking. We used everything - even cake frosting! Just keep trying - eventually they know this is the drill.

My son is 7- and because he also has Autism - I am still giving him enzymes spoon fed in applesauce. He did have a phase in school where he was not taking. We used everything - even cake frosting! Just keep trying - eventually they know this is the drill.

my son has autism and cystic fibrosis. i qualify for respite care from the state for the autism - but cannot get the state to get a home health aide to give my son enzymes for the CF during the respite care. I am as frustated as you sound -mom247 - and printer - I did not know cff had a legal...