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TOPIC TITLE: CF
Created On 12/28/04 4:08 PM
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BigSis
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12/28/04 4:08 PM
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Hi I have a sister with cystic fibrosis, and I never chatted with any frum people online about it, so if anyone has anything to say...
 
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downsyndrome
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1/2/05 9:13 PM
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There is a frum 'veibele' who has Cystic Fibrosis and she publishes a newsletter for the frum community, called The CF Family Times. You can contact her via e-mail at <CFFamilyTimes@aol.com> Good luck and a refuah shleymah.
Sarah S.
 
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Booster
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1/16/05 5:10 PM
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my little cute niece; 11, has cystic fibrosis. last year she had to be hospitalized for a few weeks due to some complications that arose. but B"H she is very taken care of. how old is your sister? and how's she doing?
 
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BigSis
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2/1/05 7:05 PM
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Hi!
My sister is 6. She's BH doing great. We don't really put her on any meds like pulmozyme (however you spell that). She's small, but other than that she's very pretty and totally normal. One would never know...
 
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YEHIDI
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2/2/05 9:58 AM
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YOU CAN TRY THE ORGANAZATION "CHAIM LAYELED" SORRY I DO NOT HAVE THE NUMBER
 
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jshap32
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2/10/05 9:10 AM
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Hi! I have a daughter that has CF and she is 12 years old. Baruch Hashem she is doing well, but it takes alot of work to keep her healthy. It can be stressful and depressing at times, and that is our daily challenge, but she gives us alot of Nachas. I started an organization years ago called Concerned Friends of Cystic Fibrosis, (CFCF), and I give out money to families here in Israel who have children with CF. If anyone ever needs to chat it would be my pleasure. Kol Tuv!
 
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pcd
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2/10/05 1:00 PM
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just wondering, at what age and how did you tell your daughter that she has cf?
 
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jshap32
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2/10/05 4:56 PM
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We told her when she was much younger, but even today at 12 I dont think she grasps the true gravity of the disease which is probably a bracha. She doesnt need to know how serious it really is, or else she might want to just give up and not bother with all the therapy and medicines all the time.
 
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BigSis
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2/10/05 6:15 PM
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My little sister knows she has CF. If you ask her she'll tell u. When we ask her if she's sweet or salty she says salty... Since like 4 yrs old.
 
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hb
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3/27/05 1:39 PM
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PCD, Please contact me privately, I'd like to ask you a question.
Thanks,
 
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pcd
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3/27/05 10:05 PM
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hb, i'd be happy to answer any questions, however i have been unable to e-mail you privately.
 
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hb
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3/27/05 11:37 PM
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Hi PCD. I can't find a private email address for you. If you could please email to me at ocr4me@yahoo.com, I'd appreciate it.
Thanks,
 
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hb
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4/6/05 12:18 AM
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For those of you whose children are using the Vest, How do you entertain your child while using it? My child gives me a very hard time while on it, needing constant entertainment. Being that we don't have a TV, video, I find it difficult to entertain. Do you bribe your children, or make it a discipline issue?
Thanks.
hb
 
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pcd
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4/6/05 8:50 AM
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my daughter likes having books read to her, she also likes to play video games. if anyone has daughters who use the vest, i sometimes will polish her nails which she enjoys and they dry by the time she is done with her treatment.
 
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pcd
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2/6/06 10:47 PM
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my 4 yr. old daughter will be having her first bronchospy soon. does anyone have any suggestions how to prepare her emotionally for the procedure? she may also have to be admitted for iv meds. thanks.
 
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downsyndrome
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2/6/06 11:07 PM
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My 2.5 year old daughter, who does not have CF, but has other respiratory issues, has had two bronchoscopies/endoscopies over the past 6 months. WE did not go into detail about the actual procedure because they sleep through it anyway so why tell them about how invasive and possibly frightening it will be? We told her about going to the hospital, being given 'funny' pajamas to change into, and a while later going to sleep for a bit while they 'check' her.
 
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pcd
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2/23/06 10:15 PM
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i have heard that when a person is sick it is a minhag to add another name to their hebrew name for refua and to change their mazal. does this apply to chronic illnesses such as cf? also is one suppose to say tehillim for someone who has cf?
 
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pcd
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3/6/06 5:45 PM
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i was told that my child has permanent atelectasis in her middle lobe. i am very depressed and just wondering how this will impact her life long term. thanks.
 
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refua
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3/7/06 9:47 PM
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why were you told it was permanent? you can still daven for it to heal.
 
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frizzle
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6/22/06 7:11 PM
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I have two daughters with Cystic Fibrosis, 5 and 9. I agree it is a lot of work but it is worth it. What kind of supporyt system is ther in place in Israel. We live in America and are possibly thinking of moving to Israel
 
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frizzle
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6/22/06 7:13 PM
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My two daughters either sing or read books in funny voices due to the vibrations of the vest
 
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pcd
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6/22/06 11:00 PM
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there is a rabbi in bnei brak, rabbi reuven sklar, who has an organization that helps cf kids get funding for medical equipment and treatment. he also sponsers trips and other events for cf kids in israel. i forgot the name of the organization- it may have been yad l'yeled, but i will find out.
 
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pcd
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6/22/06 11:03 PM
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sorry, i was wrong about the name. it is called chaim layeled and they have a website you can check out.
 
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jshap32
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7/10/06 12:09 AM
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when you are serious about moving to israel you can contact me, i am the father of a 12 year old with cf
 
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hb
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8/27/06 1:10 AM
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got a question for you regarding Tobi, have you ever used it for your kids? Can it be used with a regular nebulizer or does it need a SinuNeb? Please advise.
 
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shlimazel
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11/18/11 7:54 AM
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Hi. I'm new to this forum. I have two daughters with CF, ages 12 and 10. I was wondering if anyone had experience with MRSA and what they were able to do to get rid of it?
 
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CAP
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12/28/11 12:37 PM
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having worked in the health field, MRSA is not really somethign you can really get rid of. body just gets used to it in system and hopefully doesn't react. but i'm not sure with CF - perhaps its more risky...

ps. anyone who has owrked with geriatrics and other medically compromised patients prob has MRSA in them (colonised)
 
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FORUMS > Genetics > Cystic Fibrosis < Refresh >

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