Bronchoscopy Question
My 17 month old son has a CRMS dx (df508 + a "varying consequence" mutation and negative sweat). We switched clinics about 4 months ago. Our new clinic felt that my son's health history and culture history warranted a bronchoscopy. Last Wednesday he had the bronch as well as an endoscopy and an Infant PFT. Normally they have you return 2 weeks post procedure but because of the holiday it looks like we may not be getting in until sometime next month. I've asked the nurse to talk to our pulm about getting us results over the phone at least - we'll see if it happens - but in the meantime I have a couple questions ab...
Source: Cystic Fibrosis Families Forum - December 16, 2015 Category: Respiratory Medicine Authors: emason Tags: Families Source Type: forums

Tell me about the vibralung?
Anyone on here have kiddos that use it? I read about it in one of the other forums. I would love to know more about the results and what you are seeing if you use it. Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - December 16, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums

Can someone help with next steps...scared mom here
Hi All, Please forgive my frequent posting lately. My 8yr old just came home from the hospital this afternoon. Here is a timeline of events up to this point. PFTs have slowly declined over the last few months. Culture shows an abundance of staph and she is put on Augmentin. Does nothing and PFTs do not go up. CT scan shows infection, loss of elasticity, and mucus build up in the lung tissue. I am told the CT scan actually looks better than PFTs would indicate. Last Friday she goes in for a PICC and bronch. Bronch shows normal lungs. The doctor who did it said her lungs look great. No inflammation, no mucus. Pretty normal...
Source: Cystic Fibrosis Families Forum - December 15, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums

eRapid and Bubbles
Ok, I know I recently posted about this, but I'm confused, so I'm trying again since I'm not getting much help from clinic. I asked them for a new mask for my son's eRapid (he uses it for albuterol.) He has been using the Pari Smartmask Kids Mask (he's 2 years old) and we had a few left over from our last pulmonologist (but he definitely needs a new mask.) So, I went to pick up the masks, and they gave me two Bubbles the Fish masks. I don't think I can use these. Pretty sure I read somewhere the Bubbles mask is not compatible with eRapid...So, I guess my questions are, can I use the Bubbles the Fish mask with the eRapid fo...
Source: Cystic Fibrosis Families Forum - December 14, 2015 Category: Respiratory Medicine Authors: martatv75 Tags: Families Source Type: forums

Trigger: amnio diagnosed cf positive
In 2010 my husband and I found out we were carriers. We were trying to get pregnant and were screened. Because we both screened positive as carriers we were sent to a fertility clinics to get info on ivf/pgd. We didn't know we were already pregnant. Our first son was born after a complicated pregnancy and premature delivery. He tested negative in new born screen for cf and was declared healthy. Fast forward July 2012 we found out we were pregnant again had an amnio at 15 weeks and our second son was also part of the sacred 25% that didn't carry either gene. Now here we are 2015 and pregnant with our third. We found out aft...
Source: Cystic Fibrosis Families Forum - December 11, 2015 Category: Respiratory Medicine Authors: lexi0408 Tags: Families Source Type: forums

Losing the Battle on Sinus Infections
Please help. We are losing the battle on sinus infections. Sam had his second sinus surgery in October and he has already had two sinus infections. We are in a vicious cycle of three weeks of abx, followed by two weeks of good health, followed by sinus infections, and repeat. We do sinus rinses twice a day with saline and budesonide (sp?). We do hypertonic saline through the neb cubs twice a day. Sam just keeps a sinus infection. I am worried that I am going to have to quit work becuase he stays sick. I say sinus infection but they always start with some kind of virus or cold, then immediately go to an infection. His nose ...
Source: Cystic Fibrosis Families Forum - December 9, 2015 Category: Respiratory Medicine Authors: rosesixtyfive Tags: Families Source Type: forums

Do you change neb cups?
Someone in one of my other threads (sorry for hogging) mentioned changing neb cups for different neb meds. I had no idea. My daughter is 8 and has been using the same neb cup for two meds for years. I also only change the cup every 6 months. Does this sound right? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - December 7, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums

Educate me about Pseudonomas please
Hi All, My daughter is preparing to go to the hospital next week for a PICC line and IV antibiotics. She is 8 and has never cultures pseudomonas. However, her CT scan shows some infection and blockage deep down in her lungs. While she is getting the PICC she will have a bronchioscope and they will suck out some of the gunk that is way down deep and they will culture it. I will be shocked if it is not growing pseudonamas. This scares me as I have heard that it is really hard to get rid of and always comes back. I feel like her culturing it is the beginning of a very long losing battle. She will receive antibiotics but wha...
Source: Cystic Fibrosis Families Forum - December 3, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums

Need advice from more experienced parents
Hi All, My daughter has been doing really well up until a couple of months ago. Her PFTs started dropping. She just finished a course of Augmentin as she was culturing an abundance of staph. PFTs stayed the same. Had a CT scan which shows loss of elasticity and some scarring in the lower lobes. Is going in next week for a PICC and IV antibiotics and intense chest therapy. She is in the Orkambi trial and, thankfully, I believe it has helped her maintain a healthy weight. She was in hospital two years ago at this time and she looked very sick. Today she is pink, active, has a healthy BMI, o2 at 98%. My fear is that she is ...
Source: Cystic Fibrosis Families Forum - December 2, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums

Vibralung..where can I find it? And for how much?
Hi all, I was wondering if anybody knows where I can find the Vibralung device for airway clearance? I tried contacting the company more than once but had no answer. I found it through an online retailer but it is sold for $5000 which I feel is too much after going through some posts in this form that discussed its pricing. I am visiting the US in about 2 weeks and would love to buy one for my daughter after reading great reviews about it. Any help would be really appreciated. TIA (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - December 1, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums

Cayston
I have a 23 day supply of Cayston. If anyone wants it, PM me. Bill (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - November 29, 2015 Category: Respiratory Medicine Authors: Printer Tags: Families Source Type: forums

body image
our 15 yr old girl is obssessed with thinking she is fat. she is right about the size the doctor wants her to be. she does get a slightly puffy stomach after she eats. the orkambi hasn't helped because she hates eating food with fat in it. she doesn't care about whether it is a healthy fat. we have gone round and round over her treatments the last few weeks. any suggestions? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - November 9, 2015 Category: Respiratory Medicine Authors: trghpu1994 Tags: Families Source Type: forums

New Sodium Chloride Clinical Trial
Anyone's child in the new clinical trial for a new sodium chloride neb treatment? DS13 has an appt next week to see if he is eligible. It only lasts 4 weeks: 2 weeks off sodium chloride, and then 2 weeks in the trial for the new med. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - November 4, 2015 Category: Respiratory Medicine Authors: scrapper1264 Tags: Families Source Type: forums

Pancreatic sufficient, but losing weight
Quick recap: My DS, 12 years old, was diagnosed with CRMS because of one mutation & one variant (DF508 & 5T/12TG) and borderline sweat tests (40/41). He has chronic constipation and wasn't gaining weight steadily on a growth curve so his Dr prescribed enzymes as a "trial" to see if they would help. He did begin to gain weight but I couldn't help but wonder if he was just catching up with a normal growth spurt or if the enzymes were actually doing something. The Dr that started him on enzymes left her practice and the new Dr agreed that we could do a little testing to see if he actually needed them or not....
Source: Cystic Fibrosis Families Forum - October 29, 2015 Category: Respiratory Medicine Authors: ByGrace Tags: Families Source Type: forums

Wwyd
So I picked up my daughter after school. She says oh I don't feel good today. Started after lunch but she said she didn't want to bother me or go to the nurse because I was at work. She said she was nauseous, had a headache and it hurt to take a deep breath. No fever. Min cough. question is; got a call to see if I could work 2 morrow(I am NOT obligated to) WWYD? This stuff comes up alot and my career suffers from it but her health comes first. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - October 29, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums

Allergic reactions to Antibotics
Hi.. I have posted before that last Oct. a year ago this month, my grandson had a terrible reaction to the antibiotics the doctors believe it was the cefepime and possibly the vancomycin. He had steven Johnson syndrome, I cannot tell you how terrible it was for my family but most of all for Connor. He did recover and we do feel lucky because it could have been a lot worse he responded to the steroid treatment, but it took over a month for him to recover. Since that time my grandson Connor has had a reaction to 2 other antibiotics. He has a allergist that follows him, a derm specialist and his CF team. The docs told us Co...
Source: Cystic Fibrosis Families Forum - October 13, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums

Elastase Test--- with or without enzymes??
My son's GI ordered his first fecal elastase 1 test today. He has been on enzymes for a few years as an "experiment" to see if they would help his constipation & promote weight gain, but he's never been given a dx of either PS or PI. The GI said that we should stop the enzymes for about a week before the test so the results will be accurate. From what I've read online the enzymes won't affect the test, but I would hope that the Dr. knows what she's talking about. What have you done before collecting a sample? Should I stop giving him enzymes? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - September 30, 2015 Category: Respiratory Medicine Authors: ByGrace Tags: Families Source Type: forums

Freebies
I have LOTS (100?) of disposable, sealed in the package, nebulizers for inhalation treatments. All have the 7 foot hose, and mouthpiece. They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some. They are the green HUDSON II (2) Updraft nebs up for free. Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading. 100 sterile lancets per box. The box says: For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood samp...
Source: Cystic Fibrosis Families Forum - September 29, 2015 Category: Respiratory Medicine Authors: GoryLori Tags: Families Source Type: forums

A conversation with my non CF'er
My son is preparing to apply for college soon. He is sorting out what to write for his college essay. He has decided this year that he wants to focus on science; likely start as a Biology major. He said for his essay he wanted to write about his sister with CF; brainstorming last night. He said he is very interested in genetics because of her. He used the term "Precision Medicine".. I wanted to encourage him to write not just about his sister but about himself..That he has a level of empathy; because of her situation. I actually don't even think he has absorbed all the "emotional" stuff but is moving ...
Source: Cystic Fibrosis Families Forum - September 22, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums

Welcome to my New Granddaughter
My daughter had a BABY GIRL!! Her name is Sydney Ann she was a couple weeks early but mom and baby doing great!! She was 6lbs and 9 oz she seems so little!! Been a while since we have had a newborn! I feel so blessed she is perfect! Connor is my grandson he is 7 years old he has CF and he could not be happier!! He loves to hold her, rock her and sings to her. But he does not want us to hear so he sings very softly it just melts my heart! (L) pics on my profile! Connor had a very rough year last year but now he is doing great!! Back to school in 2nd grade and very happy, smart little guy! because of the rough year Connor...
Source: Cystic Fibrosis Families Forum - September 22, 2015 Category: Respiratory Medicine Authors: Carol H Tags: Families Source Type: forums

Question about Cultures - When is it concerning?
I've posted a few times but the quick background is I have a 15 month old son dx CRMS (one disease cause and one variable mutation). He just switched from one clinic that was being reactive to a more proactive clinic last month. The question I have right now is about throat cultures. He has never had a completely clear swab but so far we have been told that nothing he has cultured needed to be treated. I have trusted that and I do still trust that, but I guess I am wondering when a positive culture would warrant treatment or when a positive culture may be something to be more concerned over. He has never cultured pseudo so...
Source: Cystic Fibrosis Families Forum - September 21, 2015 Category: Respiratory Medicine Authors: emason Tags: Families Source Type: forums

Best nebulizer recommended for Tobi and Pulmozyme
My daughter who is almost 5 just recently started doing Pulmozyme and will start Tobi in a few days. Up until now we were doing her nebs using a device that is not specifically recommended for CF meds. I want to look for something online (I live in the middle east and we don't have these types of nebs available locally) that would be the best for use with these medications but I have no idea where to start. Can you guys recommend something for me? I want a device that is known for its best delivery of these medications and if it's light-weight and can operate on batteries as well as a power cord then this would be a plus. ...
Source: Cystic Fibrosis Families Forum - September 20, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums

Looking for a thread started by a dad
The dad was lamenting that his young son had lost 40 points PFT in between office visits.. I think it was about two years ago. Thanks for any one who can help me find the thread. Salt and Light, Jeanne (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - September 6, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Families Source Type: forums

Anyone willing to do this?
I have an idea for cf awareness and donations. Basically piggybacking on the ALS challenge, having a "CF Puddin' Dump Challange". I feel the use of pudding (mucus) represents CF the best. Anyone willing to do this challange? Or have any to add? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 17, 2015 Category: Respiratory Medicine Authors: jcro125 Tags: Families Source Type: forums

Gram stain and culture results for sputum are confusing!!
So my daughter's doctor asked us to test her sputum to see if she has an infection because she's been coughing for too long now (about 2 months). She's 4 and a half years old and this is the first time we have to face this so we're still not familiar with it. I got her results on the phone and was told that the gram stain showed no WBC's or neutrophils, but the culture stated that she has Haemophilus Influenzae which was also tested for sensitivity and resistance. I guess my questions are: Does the fact that there are no WBC's or neutrophils rule out the possibility that she has an infection? If that's true then how di...
Source: Cystic Fibrosis Families Forum - August 15, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums

what is the tips of teeth whitening
My teeth is not white but i want to white it. but i can't. If there are any tips, pls tell me. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 14, 2015 Category: Respiratory Medicine Authors: mandaji11 Tags: Families Source Type: forums

School
With school starting for some in the next few weeks, might be a good idea to post some helpful hints. Here's a link that I found especially helpful. Our own Lisa Greene's site: http://www.happyheartfamilies.com/SchoolIssues.html Each year I get a packet of info together for the school as well as a letter to teachers regarding any concerns that may or may not come up. First and foremost that our child is a normal kid who just needs a few extra things to keep him happy and healthy. Our primary issues were making sure he got enzymes and dealing with more than one child wcf in the school. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 6, 2015 Category: Respiratory Medicine Authors: Ratatosk Tags: Families Source Type: forums

Travel question (a little wierd)
So we are going on a trip to across the country . Getting ready packing, daughter with CF has a slight cold. Few coughs, did complain of a sore throat this am, went away with drinking fluids. If we were staying home I would not be concerned at all; would just keep an eye on her. But; we will be flying etc. I was wondering if it would be really weird if I packed my stethescope in my luggage; just in case things go south. I do listen to her sometimes(I'm a nurse). Wondering ii would cause a problem with screening for security. THough I will be bringing her VEST, nebs, meds compressor...Is it silly? Kind of like if I bring it...
Source: Cystic Fibrosis Families Forum - July 30, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums

Fibrosis in the stomach lining.
Can anyone give me any insight on whether fibrosis found in stomach lining is DEFINITELY CF or not? My daughter's GI did a scope and biopsy last Friday and received the results today. She said they found "fibrosis in the stomach lining" and she would have to do further research to find out what that meant. I, of course, could not stop myself from googling and over and over found my queries leading to CF. They also found reactive changes of the esophagus. She is 19 months old with IgG-deficiency, they were doing the scope to look for evidence of celiac's. She has been chronically constipated since we switched fr...
Source: Cystic Fibrosis Families Forum - July 30, 2015 Category: Respiratory Medicine Authors: twinmomIM13 Tags: Families Source Type: forums

New here. No diagnosis. Question about testing?
Hi. I know that you all, unfortunately, have a lot of experience and knowledge about CF so I hope you don't mind me crashing your party. :o My son just turned 18 yrs old. A while ago, he brought this white bubbly rash on his palms to my attention. You know where I'm going with this. I did some googling and brought him to the dermatologist. He immediately confirmed my amateur diagnosis of Aquagenic Wrinkling of the Palms. My son said that they really start to hurt after his shower and the skin just falls off. The doctor prescribed some Aluminum Chloride solution to apply to his palms but my son never uses it. He has high f...
Source: Cystic Fibrosis Families Forum - July 29, 2015 Category: Respiratory Medicine Authors: Stacey James Tags: Families Source Type: forums

Hypertonic saline mixed with other medications in the same neb session
Is it ok to mix hypertonic saline with other medications in the same neb session? My DD is on Combivent (Ipratropium bromide + albuterol sulphate) and pulmicort (Budesonide) and I was wondering if we can mix the HS with them or should we do it seperately? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 25, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums

Anyone started IV antibiotics instead of orals for their first ever infection?
I was wondering if any of you were ever put on IV antibiotics for your first infection? My daughter is 4 years old, was diagnosed with CF at birth by newborn screening and has been very healthy since. She recently started coughing (about a month ago) and her doctor insisted on doing a sputum culture before prescribing her anything. It was a very hard couple of weeks trying to teach her how to cough sputum and then finally we were able to do it. She cultured Hemophilus Influenzae and her doctor immediately wanted to admit her and give her IV's for 10-14 days (she also developed a low grade fever 2 days prior to the culture...
Source: Cystic Fibrosis Families Forum - July 23, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums

CRMS and Culture results
My 1 year old son has a CRMS dx. He just had a clinic appointment a week and a half ago which resulted in a second negative sweat. Our pulm said at the appt that he appears to be healthy - clear lungs etc. She called yesterday to tell me that his culture results came back positive for staph, Chryseobacterium Indologenes, and Acinetobacter Baumannii but that because he is appearing healthy and has a negative sweat that they are nothing to be concerned about. Today he started having a running nose. He's 12.5 months so my first thought was teething. But as the night has progressed he has been seeming to be having some respi...
Source: Cystic Fibrosis Families Forum - July 19, 2015 Category: Respiratory Medicine Authors: emason Tags: Families Source Type: forums

For those with kids taking Orkambi
Hi All, I am the mother of an 8yr old with CF. She is DDF508 and is in a trial for Orkambi now. I know 100% she is on the drug but I don't know the dosage. Her health is great right now (knock on wood). She is gaining weight, her activity level is great, and no coughing at all. While I want to believe Orkambi is having an impact it could also be due to the fact that she is out of school and away from sick kids and is swimming every day. If your kids are on the drug what are you seeing in terms of impact? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 16, 2015 Category: Respiratory Medicine Authors: humphrey711 Tags: Families Source Type: forums

Just found out daughter has Mycobacterium Abscessus
We just found out my daughter 11 has mycobacterium Abscesses (not MAC which she has also cultured in past but now apparently clear) and will start the treatment process soon. right now they r recommending IV Amikacin, IV imipenem, and azithromycin for at least 5 weeks (up to 3months) until cultures clear. Her pfts are still in the 80s/ low 90s, but it's still a drop from her baseline of over 100 last year. Do you have any advice as we start this journey? We are thinking of doing a port instead of PICC due to the potential length of time. I am starting my research on treatments and these medicines.... Seems like they want ...
Source: Cystic Fibrosis Families Forum - July 16, 2015 Category: Respiratory Medicine Authors: mep65 Tags: Families Source Type: forums

Saw this and I had to share. People experience running like they have CF
https://youtu.be/8OALfJWS8jE (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - July 15, 2015 Category: Respiratory Medicine Authors: kenna2 Tags: Families Source Type: forums

best friend of over a decade is declining...
Hi all. I guess this is the kind of place to talk to people about this. Even a month ago I would never have thought about looking for resources like this forum. My very closest friend of the last decade, who I consider a sibling, has CF. She is 100% my family and I love her dearly. We met in 5th grade and I'm now a junior in college. Even though my college is two hours away we text pretty much every day. Every one at my university knows who she is.(L) She, however, has stalled out at home and stopped doing her treatments. Throughout our friendship she has gone in the hospital about twice a year, once if it's a great year...
Source: Cystic Fibrosis Families Forum - July 14, 2015 Category: Respiratory Medicine Authors: xenadog Tags: Families Source Type: forums

Mac
I am a long time viewer, but first time writer on this site. My daughter- age 12, who has CF, just cultured positive for M. Avium complex (MAC) NTM for the third time in 12 months. I was told by the doctor two months ago, that if she cultured positive again that we could have a discussion on a way forward. Until last year, her PFTs were above 100%. 6 months ago, they went down to 80% and last month they were 90% -- better, but not back at her baseline. She is an active girl - swims and plays tennis competitively year round and generally feels very good. She has only been hospitalized once for pseudomonas, also in the last ...
Source: Cystic Fibrosis Families Forum - July 1, 2015 Category: Respiratory Medicine Authors: mep65 Tags: Families Source Type: forums

ANy parents with feeding tips and tricks?
Our dietitian recomended getting some avacados into our lil ones diet. It has all that good fat, high calorie, and vitamin and minerals that could be so benifical to her diet and well being. So I gave it to her and she gulfed down half of it. I also let it ripen a lil more. Since then she wants nothing to do with it. Loved it and now hates it. I don't get it. Lol. I've tried mixing it with other things. Has anyone gone through this and any recipes for what there lil ones liked? (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 27, 2015 Category: Respiratory Medicine Authors: lrs2015 Tags: Families Source Type: forums

Vest For Donation
I know someone who has a barely used vest to donate. Her mother passed away about a month ago from a non-CF lung condition, it was her vest. It hasn't been used in over a year and her mother only used it for about 2 weeks so it is in excellent condition. She would like to donate the vest to someone with CF. It is made by RespirTech and purchased in March 2011. Here is the information she provided: Item 500008-000/HFCWO Air-pulse Generator System. Serial No. UD03M12. InCourage System Jacket kit size 40. Everything is included in kit - Filter, fuse, cord hose and case. Boxed and ready to go. The website is: inCourage® A...
Source: Cystic Fibrosis Families Forum - June 27, 2015 Category: Respiratory Medicine Authors: Rosie55 Tags: Families Source Type: forums

Which air compressor do you use in the United States? Travelling there- need help!
We are coming to the United States (NY) for a couple of months and haven't been able to find an adaptor or transformer for our daughter's PARIBOY SX, so are wondering if we need to buy something over there to fit her LC Sprint nebuliser (we currently use hypertonic saline only). Any ideas? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 22, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums

Having another baby- how was your journey?
So I'm interested to know what people's experiences are with deciding to have more children after you've had one diagnosed with CF. I always thought we'd try naturally knowing that there was a possibility of having another with CF, but I've recently changed my mind to thinking IVF with PGD is probably the more sensible option. Our daughter (DDF508) is 3.5 now, and though I wouldn't change her or our journey so far, I think having any more children with CF would stretch us too far and impact what we are capable of giving to our children, to each other, and to our lives in general. Another option that my SO has put on the ta...
Source: Cystic Fibrosis Families Forum - June 18, 2015 Category: Respiratory Medicine Authors: Helenlight Tags: Families Source Type: forums

IVS changed every 24hrs??
So my friend has cf and has been in hospital since last week. She has a port, but lately hasn't been working. They gave up on port & put in IV, but changing it every 24hrs...is that normal? I thougt IVs were good for few days. She's just miserable & wondered if this was normal to happen. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 15, 2015 Category: Respiratory Medicine Authors: Ryan_cfsupporter Tags: Families Source Type: forums

Anyone using alternatives to the vest in young kids?
Hi all. We travel a lot and are looking for alternatives to the vest for our little one (3years). when it's both my husband and I travellibg its not such a problem but if I travel alone it me, two kids (twins) a stroller, 2x car seats, back pack of stuff and a 28lb compressor!!!!! Not a lot of fun! Anyway cups are a bit of a non starter as its like wrestling a small alligator and think I get more of a work out than his lungs do!!! Any thoughts greatly appreciated (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - June 12, 2015 Category: Respiratory Medicine Authors: lovemyboy507 Tags: Families Source Type: forums

Mother's Day
This is an interview my daughter Sarah did many years ago...with Lisa Greene. Lisa is a most amazing MOM of two children with CF! Days must be challenging for Lisa as her husband surprisingly died a few weeks ago. https://www.youtube.com/watch?v=c5hRLWgPLaM May God give her strength and peace as she continues to inspire us all! Happy Mother's Day! Salt and Light, Jeanne (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - May 10, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Families Source Type: forums

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 independence; but ...
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 meds...
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 ┬ľ 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