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...
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. P...
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 af...
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. ...
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 b...
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 tha...
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
