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What baby bottle sterilizer do you use for neb cups? Anyone use the Wabi baby or Baby Brezza sterilize and dry in one? How big is the Wabi baby? Does the Baby Brezza get hot enough?

I am 38 with CF. I have two daughters ages 12 and 15. My 15 year old is treated for CF, but not officially diagnosed. We travel the world meds, vests, acapellas, and all. We live in the US, but have traveled to Canada, Mexico, Jamaica, Belize, Costa Rica, China, Japan, England, Ireland...

Congratulations on your baby. In limbo is a difficult place to be. I have CF, but I have a 15 year old still in limbo. You are doing everything right. As for the variant 7T and 9T do not cause CF so that is good news. As for what intermediate numbers and low being better it probably does...

I am diagnosed with CF with a borderline sweat test and 2 CF causing mutations. However, my daughter has no diagnosis but her FEV1 increased from 50%to holding in the 90s after CF treatment mucus clearance vest hypersal neb and antibiotics based on sputum culture. We both culture typical CF...

I was told by a pulminologist I needed CPAP based on a sleep study before my CF diagnosis. Now I am seeing a sleep medicine pulminologist in Sep that is associated with my CF center. How common is it to need cpap or bipap with decent lung function? Do you snore when you breathe out? What is...

I looked into this recently and some term policies have no health questions, but they are costly. If you own a home and pay a mortgage you may be able to get insurance that pays the mortgage in case of your death. I figure this is one less big bill for my family.

My 14 year old has a 504 plan. I found meeting with my daughter and the school nurse to come up with a plan worked for us. Also find out your state rule for homebound instruction. For us if my daughter misses 5 consecutive days or 10 cumulative days, then she gets home bound at least 1 hour...

I forgot to mention my daughter has my known disease causing mutation and 7t 9t variants. Her official diagnosis is COPD Chronic Bronchitis type. My other daughter is healthy with my 5t variant and no mutations.

We are in a similar situation with our 14 year old. I have a CF diagnosis with a disease causing mutation, a stop codon, and 5T variant. I have mild CF symptoms but they are getting worse with age. We did get a vest for my daughter. The way we did this was we did 3 months of Manuel chest...

I found articles about children with clinically stable CF and how they have obstructive sleep apnea far more often then healthy same age peers, but I have not read research about adults with CF.

Have you had your night oxygen levels tested?

Have you looked into PCD Primary Ciliary Dyskineskia or Alpha 1 Antitripsin deficiency? These can both cause Bronchiectasis too. Best wishes I was diagnksed with CF as an adult and feel so mich betger with proper treatment.

Has anyone traveled to Canada driving from the US? Do they check prescription medicine to see if it is in prescription bottles or is a weekly pill case OK.

We also did the NPD test twice at CHOP this is a research test because it is soooo imprecise. The furst testbdiagnosed my daughter with CF then I was told it may be wrong because she got thebflu weeks later then she was yndiagbosed with CF. With CF treatment my daughter's lung function went up...

If you are looking at CF and PCD do NOT go to CHOP. We did a biopsy at CHOP which was sent to St Cbristopher's for there electron microscope and the UNC said biopsy slides too blurry to make a determination from. Go to a hospital that is part of the mucus clearance consortium. UNC and Denver...

I would see a second opinion GI who sees CF patients. If CF is suspected in a child with failure to thrive the minimum a GI should do is a Fecal elastase test which tells if the child is pancreatic insufficient to where the pancreas does not function properly and so the enzymes needed to absorb...

Did the GI test the poop sample to see if your child is pancreatic sufficient?

I go to the University of Pennsylvania and I absolutely love them. They see me when I am sick. They help coordinate appointmente for the same day. I get asked about every study I am eligjble for being conducted at CHOP or Penn and yet I am not pressured to participate. I love the entire team...

So does CF affect your tears. If I cry in a sad movie, then the next day my eye lids are swollen and I have hard crust on my eye lashes. Sometimes my eyes burn a little if I cry. Anyone else have this and is there anything to do about it? It is embarrassing.

Do you do Manuel chest PT? If the chest PT is not working I would call your CF clinic and ask if you can come see the physical therapist or respiratory therapist that teaches the chest PT. I improved after a couple of trainings and we get a refresher training beforenwe go on vacation without...