School Field Trips ??
Hey all!
My daughter with CF is in kindergarten this year. She's had a couple field trips so far and my husband has always been a chaperone. Another field trip is coming up and the teacher told me he didn't have to be a chaperone because they wouldn't be eating anything on this field trip (therefore no need for enzymes). I was just wondering how other families handle the field trips at school. Did a parent always chaperone? Is this something you included in your 504? Should I even be concerned about it? On one hand, I'd like to give other parents a chance to go, and also be able to give my girl a little independenc...
Source: Cystic Fibrosis Families Forum - May 4, 2015 Category: Respiratory Medicine Authors: SadiesMom Tags: Families Source Type: forums
Two Kids with CF - Cross-Contamination
My son (8 months) was diagnosed at birth and his 3 year old sister was just tested and diagnosed with CF as well.
Obviously we cannot keep them 6 feet apart, but we wash and sanitize as much as we can.
Does anyone have experience with two CF babies? How do you handle cross-contamination concerns? I am especially worried that once they get school-aged, we'll just be passing germs back and forth constantly. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - April 29, 2015 Category: Respiratory Medicine Authors: Kirio Tags: Families Source Type: forums
Advice please-girlfriend with CF
Not sure if this is the correct place to post this, but feel free to either address it here or redirect me (with url) to the correct page and I can repost on there, thank you.
I met my gf at an online dating site and after emailing and chatting for a few weeks we started going out on a few dates. On the first date she was very open and explained (briefly) that she had CFwhen I asked about her cough. At the time I honestly didn't know anything about the disease, but wanted to learn more as time went on. I did small amounts of google research and talked with a buddy who knows a lot about the disease and explained a good pa...
Source: Cystic Fibrosis Families Forum - April 25, 2015 Category: Respiratory Medicine Authors: FallingForHer Tags: Families Source Type: forums
My grandson is in the Hospital.. I am having one of those days :(
Hi.. you all may have seen my post about kids with CF reaching out to kids with CF. My grandson is 6 yrs old has CF. He is such a amazing kid and so smart.
I think he knows more about his meds and schedule than I do! He has sinus issues has always has had a runny nose :) he takes zrytec and cincular plus all his other meds :0 He had a sinus infection and even with predisone and antibiotic he got worse. He was admitted to hospital Sunday for exacerbation of CF .. to me this means he cannot stop coughing! This is hard and because of a terrible reaction to antibiotics last Oct. the docs are being very cautious with what med...
Source: Cystic Fibrosis Families Forum - April 22, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums
CF Family in need of a new kitchen
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 tohttp://contest.rachaelrayshow.com/am...s-your-kitchen and click to vote for The Ruberto Kitchen. You can vote multiple times up to one vote per minute per device. Thank you all for your help. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - April 17, 2015 Category: Respiratory Medicine Authors: mom24dodd Tags: Families Source Type: forums
E coli
Hi guys. Got my sons culture results today, and the only thing that grew was e coli. They said they do not treat it. The nurse also said it probably is due to him refluxing. He is on reflux medication already.
He did have a drop in his pft's at clinic, but his doctor was not overly concerned since he was coming off of (2) 14 day cyles of antibiotics pretty much back to back.
I had had him to his pediatrician between antibiotics because he was having daily episodes of choking on his food, liquid, and even saliva. I asked about reflux then but he said he is being treated for it and treated for a sinus infection inst...
Source: Cystic Fibrosis Families Forum - April 15, 2015 Category: Respiratory Medicine Authors: jshet Tags: Families Source Type: forums
Children's Hospital Pittsburgh CF Clinic
Hi. Was wondeing if any of your kids go to the cf clinic at children's hosp. pgh. My sons doctor unfortunately is retiring in July, and we need to choose a new doc. withen the practice. I have 2 doctors i am considering, and 1 that is a definate no.
Besides being a great doctor, we need one with a great bedside manner who is super patient. My son also has autism, and appointments can be more difficult because of it. Communication is tough between my son and doctors since he doesn't really speak to to them. His current doc is very patient and creative to get my son to cooperate. The doc definetly must be soft spoken ...
Source: Cystic Fibrosis Families Forum - April 6, 2015 Category: Respiratory Medicine Authors: jshet Tags: Families Source Type: forums
Tricare Coverage for CF Dietician?
Hello,
I would greatly appreciate if any one has any recommendations or information about Tricare coverage for specialized CF dieticians. Currently, we have several pediatric patients that are referred outside of our military clinic and receive their CF care at specialized pediatric hospitals for their routine Pulmonology visits. However, these children have been unable to receive specialized dietician consults along with their CF team visits because Tricare will not cover the services stating that the children can receive dietary consults with the dieticians on-post. However, as I am sure you all agree, CF dietician a...
Source: Cystic Fibrosis Families Forum - April 6, 2015 Category: Respiratory Medicine Authors: rhcnurse Tags: Families Source Type: forums
Travelling to NY - best care center?
Hi All,
We are travelling to New York later this year and are looking for a recommended paediatric care center for our 3 year old PWCF. She's DDF508. We will be staying with my partner's parents near Binghamton. I am not a citizen, but my partner is, and we are currently looking at getting dual citizenship for our daughter to hopefully help with healthcare if need be.
Additionally, any help or advice about insurance would be helpful, as I am trying to get my head around the US healthcare system (we don't need it where we are currently)! Does everyone have their kids covered under their own plan until they turn 26? Is Ob...
Source: Cystic Fibrosis Families Forum - April 4, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums
CF care in Spain
Hello,
My husband and I are considering a year abroad in Spain (possible move) with our three sons. Our youngest has Cystic Fibrosis. We are in the very early stages of researching/planning, so really we are open to all information.
Our biggest question is, where would we find the best care for our son's CF? This would definitely make the biggest difference in where we decide to move.
We do have family in Andalucia, so southern and close to the beach are high on our wishlist....but we are open to anything at this point.
If anyone has any advice, information, suggestions, it would be greatly appreciated!
Thanks!
M (Sou...
Source: Cystic Fibrosis Families Forum - April 1, 2015 Category: Respiratory Medicine Authors: martatv75 Tags: Families Source Type: forums
my CF infant had a solid poop...is this normall??
My 7 month old had a solid poop today for the first time. He is breast fed amd we started to introduce solid foods recently. Has anyone else had this happen or do I need to contact the clinic for advice? First time mom and cf mom so I am cautious about everything:)
-Erica (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - March 26, 2015 Category: Respiratory Medicine Authors: Erica Wesley Tarnacki Tags: Families Source Type: forums
A glimpse of my cfers
Hi all I made a short video of my kids. I am sure all you can relate. We are participating in freezing for cystic fibrosis on April 11. Check out the video https://m.youtube.com/watch?v=lKmZiFEVIsk (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - March 22, 2015 Category: Respiratory Medicine Authors: threebabies Tags: Families Source Type: forums
Awesome CF Family Ed Day planned in Richmond, VA area- open to all
Are you in the Richmond VA area? Saturday, March 28 at 4 pm, Children's Hospital of Richmond is hosting a great CF Family Education event with Michael Boyle speaking (he did the NACFC keynote last fall, fabulous) and me AND my teenage son talking about parenting kids with CF. I hope to see you there! PS: It will be a dinner meeting and is free and open to all CF families and friends throughout the state whether or not they are a part of the CF Care Center at VCU. Details are below.
On Saturday the 28th of March from 4 to 9 pm, the CF Care Center at VCU, the VCU CF Family Advisory Board, industry sponsors and the Virginia...
Source: Cystic Fibrosis Families Forum - March 18, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Families Source Type: forums
Kids with CF talking to other Kids with CF
HI... My name is Carol and I am trying to see if there is a way for my grandson to talk to other kids with CF? His name is Connor he is 6 years old and very smart :)
He has had a rough year due to CF infections, pic lines and last Oct a really bad reaction to antibiotics he was taking. He was in the hospital for almost the whole month of Oct. he had a very difficult time. So now he scared, does not want to go see the doctors at all. I cannot blame him he really did have a difficult time. Also he is at the age and his development where he is asking a lot of questions about CF.
He said he is the only one with CF .. no o...
Source: Cystic Fibrosis Families Forum - March 18, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums
Do You Need a Recreation Grant?
I have no experience with this organization but thought some might find it helpful....if you apply for a Recreation Grant, or have done so before, let us know your experience! If your application is approved, the grant is up to $500. It is based on the premise that activity is especially helpful for CFers. Oh yes.
http://www.cflf.org/recreation-grants (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - March 9, 2015 Category: Respiratory Medicine Authors: Gammaw Tags: Families Source Type: forums
