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Surprised insurance did not fight us but she has had the Hill rom for over 10 years. we have a copay for rent to own, 20% of cost for 15 months til we meet our deductible. Monarch is very heavy; took a while to get used to. We also got to keep our Hill-rom. I would fight it; write a letter...

we got one. My post just got lost.

I would definately readdress this with his doctor and his nutritionist. Is he gaining weight ok? Does he need his enzymes adjusted? Could he be constipated? From a young age; I gave my daughter prune juice every day to keep her bowels moving(yes you can be constipated even if you poop). I...

Sorry I wanted to see if that post ok. Anyway, Good hand washing and getting vaccinations is important. Flu shots every year for everyone in the family. Herd immunity and all. :).. I carry Purell in my purse. Avoid people with respiratoy illness. Things gets harder as your child gets older...

I had written a post and it disappeared. Anyway, i have a daughter with CF. She is 15. in fact she has never had a sweat test because she was tested genetically. I get the worry part. It's part of being a mom. We want to protect our kids. But, let him be a baby, a little boy; that is also...

As a follow-up they did give my daughter the incorrect dose. She was supposed to get 75 grams(not the 100grams). She still is impaired glucose tolerance, but just an FYI..

My daughter had one today(she has had it before). She is 15. My question is they gave her 100 grams of dextrose to drink. She chugged it. After I questioned the nurse , when she had it in the past they gave her 75gram. Of course her 2 hour # came back high at 194..But Looking the test up; it...

Hi there, It sounds like the doctors are taking your son's symptoms seriously; which is wonderful, they are validating your concerns. The fortunate thing is preventative therapy will keep your child healthy. The sooner you have a diagnosis; you can start airway clearance(chest PT) or VEST...

https://www.cff.org/About-Us/Media-Center/Press-Releases/Sixteen-Patient-and-Provider-Groups-Oppose-Graham-Cassidy-Bill/?linkId=42392696

Handwashing. Avoiding people with an active cough or at least keeping a distance from them and washing hands after. Lots of Fluids. Hot tea. Shower at night. Flu shot every flu season and hopefully friends and family get flu shot too. Also, resting when rest is needed...

Littlelab, What a story! Wow. So glad your brother and everyone was ok.. I had the conversation with my son"please do not throw a party" But I would not think to add "please to not use a tablesaw". My son's response to the party lecture was "mom, I am going to work and the craziest thing...

My daughter is 14 with CF. My husband and I went away for 3 nights and 4 days, just the two of us. We left our older adult child "in Charge" No other adults. My daughter with CF managed ALL of her CF care while we were gone. From enzymes to pills to miralax to VESTING. We bought a WABI...

Please still call and make your voice heard. Leave messages to your senators.

What is a minimal function mutation?

How are you feeling? Sometimes even with an inhaled steroid my daughter gets tight and inflamed. We sometimes have to use a steroid burst and or even a burst with a taper to knock down the inflammation.. Hope you are doing better.

Hi there, I hope you are feeling better. I actually would call you doctor and check in especially since you say this is not usual for you.You may need a longer course of antibiotics(10 day course is very short for someone with CF) We do a 14 day course for my daughter to start. Also, doing...

triples15, Your concerns are my concerns. You are very eloquent and I think you are correct to focus on 2 points in regard to Medicaid; the elderly and adult with complex disease. I do think some are ignorant to what others go through; may because they have yet to walk in our shoes? I will...

We have to be careful as well. Lots of Gatorade. If the air quality and humidity is bad try to avoid exersizing that day or during the peak heat hours. Also, maybe the allergy/pollen index could be high. At the end of the school year my daughter went for a hike with her school on the...

FYI, I called Senator Susan Collins yesterday to express my concerns about the BRCA. I focused on annual caps and Lifetime maximums and let the know it would be very harmful for CF. I spoke of the innovation and research of the Cystic Fibrosis Foundation; that 50 years ago my daughter would...

The lifetime max and annual caps is one of my own many concerns for my daughter as well....I think the letter is great. Thank you for speaking up..