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    new jersey cf care

    Can anyone tell me about new jersey medicaid? Are there state assistant programs for cf? Also curious about home delivery pharmacies and cf centers. We are thinking of relocating to red bank, NJ. Does anyone live in nj but go to chop? Thanks! Plus any additional info, pros and cons about nj...
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    Other Airway Clearance Techniques besides the Vest or actual CPT (Clapping)

    Tell them you want to use it at the same time as the vest. My daughter uses the pep or aerobika along with the vest for each treatment. Tell them u want the best airway clearance possible. Then when he's taking a trip he can just take the aerobika. They don't even use the vest in europe so it...
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    Other Airway Clearance Techniques besides the Vest or actual CPT (Clapping)

    My daughter has been using the pari-pep for about a year. It is by far the smallest and simplest of these devices. She even uses it with pulmozyme as well as albuterol and hyper sal because the medicine does not collect in the device. She's young and it doesn't cause her to cough so the benefit...
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    What things did CF Center tell you to do/not do re avoiding infections

    I'm sorry to have worried you believingjesus. Reptiles have the potential to carry salmonela, pseudomonas, and mycobacteria. But it doesn't mean that all do. Its just they have the potential to. Considering the length of time you have owned your reptile I'm sure if it hasn't been an issue yet...
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    What things did CF Center tell you to do/not do re avoiding infections

    Avoid gardening, rotting onions, dont eat raw mushrooms, no humidifiers, reptiles, poorly chlorinated pools.
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    CF, COPD, and Bronchiectasis

    Just wondering how much of a threat is it for people with cf to be around others with either copd or bronchiectasis? You always hear about people with cf having to stay away from each other, but why is it not mentioned about copd and bronchiectasis? They all have the potential to harbor the...
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    How does your clinic do ped lung function?

    My daughter is 6 almost 7 and has been doing pfts since she was 4 1/2. We do them in a booth. I sterilize it myself. It still makes me anxious though. It is in a booth where the breathing apparatus is callabrated with a computer. We do pfts every 3 months. She seems to have a very solid grasp...
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    2 Yr Old

    Hi, mama2max. Have they put your son in for a tune up yet? My daughter went on IVs once a year at ages 3,4 and 5 to try to clear up that area of bronchiectasis. For the first 2 years the area got about 50% better. Last year there was only mild improvement. I would suggest at least trying a...
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    Soil and CF?

    Our cf dr advises against letting kids with cf garden. Most of the bugs we worry about come from the natural environment. Cepacia, pseudomonas, aspergillus, mycobacterium all are naturally occuring. So I'm on the opposite side. I have no problem taking her ice skating, the movies, ammusement...
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    Micro-gall bladder

    My daughters gall bladder was not even visable on her last ultrasound. She is 6. She had her first ultrasound at 3 where it appeared shrunken. Her liver enzymes (ast and alt) are both slightly elevated at 48 and 56.
  11. P do or not to do

    CF Mamas, Dear CF, parenting cystic fibrosis naturally, and cystic fibrosis are all groups on facebook.
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    What does yoga do for you?

    Aboveallislove, we will be filming part of my daughters yoga session next week. I will then post it on here :)
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    Metaneb does anyone use this?

    She's almost 7, but she has bronchiectasis that she's admitted for once a year. Last time Ivs didn't help at all. I know shes young but I figure she's a good candidate since this type of machine is supposed to improve ateclastis(sp?), etc. I know of 2 other moms who's children have been approved...
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    Metaneb does anyone use this?

    This is the same as an IPV machine, right? They are available for home use. I've been trying to get one for my daughter. So far not even a response from her CF team, not sure if they even know its available. I've sent liks, etc. But may have to wait til next clinic.
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    What does yoga do for you?

    I do yoga with my 6 yr old with CF. Her teacher focuses a lot on breath work. We do some thing called "fire breath" alot. Also there are some positions to help expand the lungs. Cobra I believe is one of them.
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    mucus clearing massage?

    I'm looking for a post that I read about a specific type of massage that allowed for clearing of mucus from the lungs. Does anyone know anything or heard anything about a cf specific massage? Thanks :)
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    Curious about Prenatal Testing for CF

    If you join CF mamas on FB and post this question you will get tons of info
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    Curious about Prenatal Testing for CF

    If you join CF mamas on FB and pist this question you will get tons of info
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    2 Yr Old

    We have had this as well. It started when mine was 1 1/2. It led to bronchiectasis in lower lobe by age 3. She had no symptoms either. Cultured mrsa but wasn't treated due to no clinical presentation (cough,etc). If I knew then what I know now I would've been much more proactive. Do manual...
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    raw vegetables and pseudomonas

    I recently got my CFer into juicing. But now I'm having second thoughts. Everything Ive been reading says there's a high chance our raw veggies are contaminated with pseudomonas. I wash with a water vinegar solution but what about the sink and my knives or when the vegetables are still in the...