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Tonsils
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We have not been diagnosed with CF. We are in the "waiting to see the genetics doc" step! UGHHH
Anyway.... both my kids who are now 12 & 13 had their tonsils and adnoids removed at a very young age. 21 months and my daughter at 14 months. They both had non-stop strep throat. It was very helpful and curbed their constant infections. However, both the tonsils and adnoids have grown back in both kids. The doctor failed to tell us that if they are removed before the age of 4 they can grow back. Not a reason to not do it but it is important that you are informed.
Source: Cystic Fibrosis Families Forum - March 13, 2011 Category: Respiratory Medicine Authors: edan Source Type: forums
for parentsEmail this article to a colleague.
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When does his blood sugar go as high as 220? For what it's worth, A1C is not a great predictor of cf-related diabetes and I'd consider asking for a fasting oral glucose tolerance test. His shakiness might not have anything to do with it (as mentioned, bronchodilators can do it, and some kids have issues with intention tremor, etc, which have nothing at all to do with cf), but mentioning blood sugars that high does concern me a bit.
Having a cup and Kleenex handy in all rooms and keeping Kleenex in his pocket sounds like a good idea. Keep in mind though, that if he swallows- at least it's still out of his lungs. It just go...
Source: Cystic Fibrosis Families Forum - March 13, 2011 Category: Respiratory Medicine Authors: mom2owen Source Type: forums
Happy birthdayEmail this article to a colleague.
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Mel was such a huge source of support for us. Miss her so much!
Stacey
Source: Cystic Fibrosis Adults Forum - March 12, 2011 Category: Respiratory Medicine Authors: Jane Source Type: forums
How do you clean a Flutter ValveEmail this article to a colleague.
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No, you inhale normally and exhale through the flutter.
Source: Cystic Fibrosis Adults Forum - March 12, 2011 Category: Respiratory Medicine Authors: Rebjane Source Type: forums
The Ground Swell for a CureEmail this article to a colleague.
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https://www.facebook.com/notes/roy-ice/julies-dream-teamnot-just-a-click/10150107029249531
Send the email request for the CURECF code at your Papa John's to rich_butler@papajohns.com
Source: Cystic Fibrosis Adults Forum - March 12, 2011 Category: Respiratory Medicine Authors: juliesdreamteam Source Type: forums
just curiousEmail this article to a colleague.
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Hello!
We got pregnant with our first daughter without any problems naturally. Our second hasn't gone as smoothly. Anyway, we had our first IUI treatment yesterday. Just wondering how many IUI's everyone had to do before you had success?
Source: Cystic Fibrosis Pregnancy Forum - March 12, 2011 Category: Respiratory Medicine Authors: kelbuckeyesrn Source Type: forums
Recruitment for VX combinedEmail this article to a colleague.
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I talked with my doctor about this a couple of weeks ago at an appointment, and followed up with one of the research coordinators via e-mail. I was told that spots will likely be very limited so they couldn't promise me anything. I really hope I get to participate though! Even if I ended up on the placebo I would love to be a part of this study.
Source: Cystic Fibrosis Adults Forum - March 12, 2011 Category: Respiratory Medicine Authors: Jeana Source Type: forums
coughing up bloodEmail this article to a colleague.
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Does any females with cf cough up blood during their period every month? Its been happening to me every month for almost a year. I just want to know if this is normal..
Source: Cystic Fibrosis Adults Forum - March 11, 2011 Category: Respiratory Medicine Authors: shortfrog316 Source Type: forums
Video Montage QuestionEmail this article to a colleague.
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Hi Tonya,
One True Media lets you upload any song you want to your project. So if you own it from itunes, you can upload it, just like you upload your pictures or video clips.
I like One True Media because you can use their codes to embed the video onto a web page, share with facebook, or put links into e-mails. But you can still keep it "private" in that its only accessible through your linking it, not by someone just searching for it. If you create something with windows movie maker you'll have to upload it to a sharing site. you tube is one, but you tube is searchable and not private. Photobucket is better, as you...
Source: Cystic Fibrosis Adults Forum - March 11, 2011 Category: Respiratory Medicine Authors: TonyaH Source Type: forums
Thoughts on if I should get Tested?Email this article to a colleague.
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First, you can't "develope CF" it is a gentic disease and you have to be born with it.
I was dx at age 47. I played varsity basketball in college and was a life guard on an ocean beach in Massachusetts for five years.
I would be interested in the results of any sputum tests that you have had and what if anything is showing on xrays.
Source: Cystic Fibrosis Adults Forum - March 11, 2011 Category: Respiratory Medicine Authors: jzp5079 Source Type: forums
Vest comparisonEmail this article to a colleague.
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Dear friends,
We need to buy a vest for a 2 years old and we try to choose between:
- Smart Vest
- Hillrom
- Respirtech
Pricing is in the about same range (best offer at $8,000) but we would appreciate a lot any feedback from current users of this devices. Also important is their attitude (service) if/when the device breaks down.
WHich one shall we choose?
Source: Cystic Fibrosis Adults Forum - March 11, 2011 Category: Respiratory Medicine Authors: Gusto Source Type: forums
to those with CFRDEmail this article to a colleague.
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I check them when I get up in morning and then two hours after lunch. They had me checking them 3 times a day when I was first diagnosed with CFRD. After about a month they cut it to two times a day because my sugars were in the normal range.
Source: Cystic Fibrosis Adults Forum - March 11, 2011 Category: Respiratory Medicine Authors: ej0820 Source Type: forums
Going on a ski tripEmail this article to a colleague.
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My daughter loves to ski. It's great to be outside, fresh air in the winter. She gets a lesson with a group of other children when we have gone(which I was so nervous about). I would just mention to the "ski school" she has CF and if their is a snack she needs enzymes. I also watched the lesson, most of the time anyway. She was fine! and loved it.
THe fireplace, in our case would not be a good idea. We have tried roasting marshmellows before and the smoke really irritates her airways. So, we do not do fireplaces.
Have fun! It's a great activity for the kids! OH and we also bought ski helmets for the kids.
Source: Cystic Fibrosis Families Forum - March 11, 2011 Category: Respiratory Medicine Authors: edan Source Type: forums
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Hi guys, <br />I don't know if this is the right place to post this, but I guess I'll keep this here until someone tells me otherwise.<br />I'm a writer, and a former family member of mine had CF. I am writing a book involving a CF patient, and unfortunately family information alone on treatment hasn't been enough to suffice for proper research. I was wondering, if anyone was interested, if you could give me a "low-down" on extensive hospital/hospice life for a CF patient? A timeline of sorts would be great.<br />Although I do not suffer from CF myself, I'm keeping all o...
Source: Cystic Fibrosis In The Hospital Forum - March 11, 2011 Category: Respiratory Medicine Authors: victoriathewriter Source Type: forums
IVF and PGD for couple that are both cariersEmail this article to a colleague.
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What state do you live in? There are a number of states that have a mandate for minimum infertility coverage.
However, if you are NOT in one of those states with a mandate, and you don't work for a big company like boeing or microsoft, you are INCREDIBLY lucky to have IVF and PGD coverage and if you really do want another child but might not have the insurance for much longer, I'd honestly put a LOT of thought into doing it now!
IVF ranges 15-20k and PGD ranges $6-9K and even if you can argue that it is "medically necessary" to prevent another CF child, if an ins. company does not offer IVF and PGD coverage, you will l...
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: croomabu Source Type: forums
Earthquake/tsunami in JapanEmail this article to a colleague.
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whoever has the kid with the pink shirt and shorts should know she is adorable.
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: Jane Source Type: forums
To Clear up about SSDI andEmail this article to a colleague.
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No one said anything here about deducting your out of pocket health expenses from your gross income.
That is the only way I have qualified for SSDI in the past while still working, even after the trial period ended. I could still earn over the threshold by deducting copays and other medical expenses.
Maybe I'm flying under the radar for it?
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: JennifersHope Source Type: forums
chat?Email this article to a colleague.
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or anybody, lol. I just figured nobody new here knew me, came out wrong i guess.
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: icefisherman Source Type: forums
My gf has 2 daughters with cfEmail this article to a colleague.
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Hi, This is a hard situation, but it is not safe for you to be around your friend's daughters. For your protection and for theirs, you have to avoid contact with them, because it is possible for people with CF to transfer whatever bacteria they may have to each other. I believe, however, that you can still get together with your friend without her children.
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: Nick23 Source Type: forums
AAEmail this article to a colleague.
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Anyone got alopecia areata?.
Lao Fo Ye
Alopecia Areata
Hair Growth Treatments
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: leestacy38 Source Type: forums
Sorry to bother you allEmail this article to a colleague.
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There are hundreds of mutations. So to only test for 7 is not really conclusive. I'd get a second opinion.
http://kidshealth.org/parent/medical/lungs/cf.html#
"Almost 1,400 different mutations of the CF gene can lead to cystic fibrosis (some mutations cause milder symptoms than others). About 70% of people with CF have the disease because they inherited the mutant gene Delta F508 from both of their parents. This can be detected by genetic testing, which can be done in kids both before and after birth and in adults thinking about starting or enlarging their families."
Hope that helps! Good luck!!
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: dpete Source Type: forums
When (and how) you tell to your kids they have CF?Email this article to a colleague.
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Hey!
I would agree with a lot of the people here in that it's not necessary to make it an official "cf conversation". That could make too much of an issue in your daughter's head. You said you already are open in the house about it? So maybe just start adding bits of information when it naturally comes up. Like when you're getting her neb ready just talk about what it is, what it will do and how its special for her- all in an age apt way!
When I was 4 the only thing I had to take was enzymes- but I was hyper aware of the fact that I was the only one taking tablets. This bugged the crap out of me and I tried my best to always hide them!
Source: Cystic Fibrosis Families Forum - March 10, 2011 Category: Respiratory Medicine Authors: Chilemom Source Type: forums
When (and how) you tell to your kids they have CfEmail this article to a colleague.
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Never had a big conversation either with DS. He knows he has CF -- he's taken enzymes at daycare since he was a baby and knows it's because of cf and to help digest his food. He knows he has to do his vest and nebs to keep his lung happy and healthy.
We do ask from time to time if he has questions or if he wants us to explain anything.
Source: Cystic Fibrosis Families Forum - March 10, 2011 Category: Respiratory Medicine Authors: Chilemom Source Type: forums
Stopped UpEmail this article to a colleague.
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Thanks Marissa! I havent tried Fibercon yet, so that will be my next step. Thank you!
Source: Cystic Fibrosis Pregnancy Forum - March 10, 2011 Category: Respiratory Medicine Authors: bec4t Source Type: forums
What's it like?Email this article to a colleague.
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Hi guys,
I don't know if this is the right place to post this, but I guess I'll keep this here until someone tells me otherwise.
I'm a writer, and a former family member of mine had CF. I am writing a book involving a CF patient, and unfortunately family information alone on treatment hasn't been enough to suffice for proper research. I was wondering, if anyone was interested, if you could give me a "low-down" on extensive hospital/hospice life for a CF patient? A timeline of sorts would be great.
Although I do not suffer from CF myself, I'm keeping all of you in my prayers. <3 Stay strong.
-Victoria
Source: Cystic Fibrosis In The Hospital Forum - March 10, 2011 Category: Respiratory Medicine Authors: victoriathewriter Source Type: forums
Clinic results today after hospital ....Email this article to a colleague.
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Hey Jada:
Zoe has been through a tough time and Bronk x is not all that bad (so I been told) so long as it does not become severe. The relation to staff is new to me because I have Bronk x and have not cultured staff I think . It's been a while since Bronk x has been an issue here however it seems all of us have it mild to severe. Seems to be a good question and we (the forum) should find the relationship between staff and Bronk x. I thought it was the result of our body attacking itself (the bronchial lining) reducing the elasticity of the air ways and is a very slow process. Your Doc is in line with mine by prescribing ...
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: zoe4life Source Type: forums
sudden shortness of breathEmail this article to a colleague.
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Erin
It could be a lot of things..
It kinda sounds like you have dislodged a Plug or maybe a few.
Have you're O2 Sats dropped ? Are You Hydrating ??? With the new
working out you are loosing a lot of water breathing.
I know when I am dehydrated I get very SOB. My Fev1 is the same as yours
Try Fluids , water G2 and of course Keep trying to get You Doctor on
the phone !
I hope You feel better soon and can get back to you're works outs.
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: ej0820 Source Type: forums
Have you or someone you know been diagnosed with Cystic Fibrosis?Email this article to a colleague.
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Are you interested in creating awareness about and helping others understand the treatment and needs for patients, and caregivers of those patients, with Cystic Fibrosis?
We need your help and are looking for your participation in a research study. Eligible participants will receive $25 for completing the anonymous survey.
You can participate in the survey online by clicking on this link:
http://t2.ktrmr.com/surveyr.as...&id=1&chk=na&pid=auto
Completed surveys must be received by March 28, 2011.
Source: Cystic Fibrosis Adults Forum - March 10, 2011 Category: Respiratory Medicine Authors: Ennio Source Type: forums
Block Party on Wisteria Lane April 16thEmail this article to a colleague.
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Go to www.wisterialaneblockparty.com to find out about our party with the Band from TV, lots of ABC stars, great food, and a Volvo to win in a drawing!
Source: Cystic Fibrosis Families Forum - March 10, 2011 Category: Respiratory Medicine Authors: judy3430 Source Type: forums
Party City has picked Cystic Fibrosis for this monthEmail this article to a colleague.
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I love it! DId the CF Foundation provide the pins?
Source: Cystic Fibrosis Families Forum - March 10, 2011 Category: Respiratory Medicine Authors: SARAHSARAH253 Source Type: forums
Are you on Pulmozyme?Email this article to a colleague.
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you should just post the link here for everybody to see. you'd definitely get a lot more participants that way.
Source: Cystic Fibrosis Adults Forum - March 9, 2011 Category: Respiratory Medicine Authors: LittleStar30 Source Type: forums
vx770 and vx809Email this article to a colleague.
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for those who are participating in the combo trial of 770 and 809, are you able to answer the following:
what did you have to remove from your daily regimen?
And what was/is your starting fev1?
Source: Cystic Fibrosis Adults Forum - March 9, 2011 Category: Respiratory Medicine Authors: musclemania70 Source Type: forums
Anyone have a spouse in the Air Force?Email this article to a colleague.
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I'm not in the position you're describing, but can sort of relate. I was a USAF brat growing up, so there were regularly periods of time when it would just be me mum, my brother, and me at home. Thankfully, my mom was/is a healthy lady with lots of energy, so we always got by nicely. (Well, we were fairly naughty - but she could deal with us.)
Give some thought to how comfortable you are with being alone with an infant / toddler / young child for months at a time. Once he's enlisted (or in OTS - whatever), you may not always have good control over when he's around and when he isn't.
Source: Cystic Fibrosis Adults Forum - March 9, 2011 Category: Respiratory Medicine Authors: Jakesgirl05 Source Type: forums
How hard is it to get to see the CF doctor in NCEmail this article to a colleague.
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The FIRST thing that your son should do is to GET A NEW PRIMARY CARE PHYSICIAN. This Doctor is a roadblock.
Source: Cystic Fibrosis Adults Forum - March 9, 2011 Category: Respiratory Medicine Authors: Tammy15 Source Type: forums
Need facebook supportersEmail this article to a colleague.
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Yeah, I cant believe I forgot that...
Here is the link to become a fan
Breathe easy facebook pagehttp://www.facebook.com/home.php#!/pages/Breathe-Easy-Foundation/291029199304
Source: Cystic Fibrosis Adults Forum - March 9, 2011 Category: Respiratory Medicine Authors: minimedic304 Source Type: forums
Received the new shipment of CF awareness bracelets!!!Email this article to a colleague.
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These are awesome. I am sticking my check in the mail tomorrow. Can't wait to wear it!
Source: Cystic Fibrosis Families Forum - March 9, 2011 Category: Respiratory Medicine Authors: zoe4life Source Type: forums
What are your favorite videos (about CF) for kids?Email this article to a colleague.
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Whoops, guess you have my favorite one posted!
DS loved the part about the Gorilla doing physio and we sometimes now refer to his vest as the gorilla.
Source: Cystic Fibrosis Families Forum - March 9, 2011 Category: Respiratory Medicine Authors: LisaGreene Source Type: forums
Please HelpEmail this article to a colleague.
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I need as much help as I can get on this topic. I need to formulate a list of questions about atypical cf. Please take a minute to post some questions you have about atypical cf that you believe would be helpful to have answered to educate anyone interested in this topic. Thanks in advance for your support!!
Source: Cystic Fibrosis Families Forum - March 9, 2011 Category: Respiratory Medicine Authors: amyr Source Type: forums
Serum sicknessEmail this article to a colleague.
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I am not a medical professional, but it sounds to me more like a typical allergic reaction...?? I don't blame you for not wanting to use it again... repeated use of a drug one has been shown to be allergic to drastically increases odds of severe reaction (for example, anaphylaxis, which can be life-threatening.) Allergic reaction is a whole lot more common than serum sickness, esp to a drug in the penicillin class (to which allergies are very common.)
eta> I didn't even catch the 'virus' thing in your post. It's laughable to me to even think that your child could have the SAME reaction twice to a drug, and the allergist ...
Source: Cystic Fibrosis Families Forum - March 9, 2011 Category: Respiratory Medicine Authors: Eden Source Type: forums
Tobi?Email this article to a colleague.
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Hello,
Tobi is a more concentrated version of tobramycin. It's treatment was FDA approved to be long-term and on the rotating 28 days on/28 days off schedule. Tobi's main side effect is hoarseness and throat irritation. I had really bad problems with this when I was on Tobi and lost my voice every cycle I was on it.
However, there is now a concentrated version of tobramycin available for the eFlow nebulizer. It is basically the same as Tobi, but in the eFlow the treatment time is significantly reduced. A lot of people are now on that version of tobramycin, although Tobi is virtually the same thing.
Source: Cystic Fibrosis Families Forum - March 9, 2011 Category: Respiratory Medicine Authors: melleemac Source Type: forums
What are your favorite videos (about CF) for kids?Email this article to a colleague.
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My favorite as well!
Source: Cystic Fibrosis Newly Diagnosed Forum - March 9, 2011 Category: Respiratory Medicine Authors: LisaGreene Source Type: forums
Lung EngineeringEmail this article to a colleague.
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<a target=_blank class=ftalternatingbarlinklarge href="http://www.jove.com/details.php?id=2651">Lung Engineering</a>
Source: Cystic Fibrosis Transplants Forum - March 9, 2011 Category: Respiratory Medicine Authors: Imogene Source Type: forums
Starting an exercise routineEmail this article to a colleague.
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Hey guys!<br /><br />I just recently started an exercise routine. My FEVs are in the 30s. I wanted to start exercising to not only get into shape, but to also see if, with some hard work and dedication, I could get that number higher.<br /><br />I started doing pilates. I like it, but it didn't incorporate any kind of cardio. I got one of those "Walk off the Pounds" DVDs. I figured if I slip on my O2, I can walk pretty well as an exercise routine (I only use O2 at night). Well, this Walk DVD has way more cardio than I thought. I like it a lot though, it *seems* to be a good level of a...
Source: Cystic Fibrosis Exercise and Fitness Forum - March 9, 2011 Category: Respiratory Medicine Authors: ej0820 Source Type: forums
ACHROMOBACTOREmail this article to a colleague.
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Dust is everywhere lol
Anyways - the bacteria is not state-specific. You can get it anywhere. If memory serves it can be found in the soil and water and is emerging as a nosocomial infection (not 100% sure though).
And no, it's not a common bacteria. There are a few on the forums here who have it though; we had a discussion on it at: http://www.cysticfibrosis.com/...atid=5&threadid=63321
And I'm 19...
Source: Cystic Fibrosis Adults Forum - March 8, 2011 Category: Respiratory Medicine Authors: MAVTRICKS Source Type: forums
Anyone know of cf'ers that have had heart attacks or "silent heart attacks"Email this article to a colleague.
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Well i hadn't heard of it until yesterday, but we are in the process of possibly removing the right upper lobe (my daughters) and the appointment coordinator mentioned that they would be doing test on her heart to make sure that cf had not affected it. she said 9 out of 10 times it doesnt but anyway i was shocked.
Source: Cystic Fibrosis Adults Forum - March 8, 2011 Category: Respiratory Medicine Authors: Jbenjamin152 Source Type: forums
Chat time !!Email this article to a colleague.
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I can't make it tonight, Joni. I have a special Ash Wednesday service at church to attend.
Please tell everyone hello for me.
Stacey
Source: Cystic Fibrosis Adults Forum - March 8, 2011 Category: Respiratory Medicine Authors: BelEAche Source Type: forums
antacids questionEmail this article to a colleague.
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I have terrible reflux and use a combination of zantac and dexilant. I have tried everything (nexium, prevacid, prilosec). I don't know if they make dexilant in kid formulations, but its relatively new and works really well for me. I also used aciphex for awhile and found it was pretty similar to prevacid.
Source: Cystic Fibrosis Families Forum - March 8, 2011 Category: Respiratory Medicine Authors: SadiesMom Source Type: forums
Enlive Ready-to-Drink Mixed BerryEmail this article to a colleague.
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They were sitting on the front step when we got home last night and were quite cold. I tasted it and thought it was pretty good considering there's no juice in it whatsoever. DS sucked down the first one right away and half of another during his afterschool snack.
Source: Cystic Fibrosis Families Forum - March 8, 2011 Category: Respiratory Medicine Authors: Ratatosk Source Type: forums
2nd clinic appt.Email this article to a colleague.
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We went to the other CF clinic here today since they have a better track record of follow-up between appts. We were told that Owen has severe asthma of a rare type that causes a build up of mucus vs. wheezing and reactions to cold/exercise/allergies. They said he needs CPT to get the junk up since he is really phlegmy. They are taking him off alubuterol nebs since they made his cough worse but we were finally trained in CPT. He could easily cough up sputum for a culture which is good.
Their reason for thinking he does not have CF is that they think it is this "rare severe asthma" and because the dose of Creon which is help...
Source: Cystic Fibrosis Newly Diagnosed Forum - March 8, 2011 Category: Respiratory Medicine Authors: mom2owen Source Type: forums
Diagnosed yesterday - 34 years oldEmail this article to a colleague.
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Much appreciated, welshwitch. Very cool that you're active with the endurance sports.
[ Tangentially: the wife and I have already agreed to foster and/or adopt locally instead. That will be an exciting adventure in of itself. ]
Source: Cystic Fibrosis Newly Diagnosed Forum - March 8, 2011 Category: Respiratory Medicine Authors: xin Source Type: forums
