Wanting some more info

elifowler

New member
Okay my daughter is 2 actually just turned 2. She has had pneumonia 4 times in the past year twice she was hospitalised for it but the other times we caught it early enough to treat it with a series of shots. She is severly asthmatic as well. The doctor has said that she needs to be tested for CF but no one that i know of in mine or my husbands family has it. She has minor stomach problems nothing to bad. She was gaining weight fairly well up until the last 3 months and she has been up and down. She just has bad lungs. I am just broken hearted and scared to death. Should i be???

Sorry about spelling!! i am having a rough day!!
 

Emily65Roses

New member
Okay let me start by saying no family history means NOTHING. I hate that people put emphasis on it, it confuses people like you. I am the first and only CFer in my family. And I have at least 10 <i>older</i> cousins. My mom was one of six. Suffice it to say, I have a fairly big family. And as I said, I'm the first and only CFer. Many of the CFers here are the only in their family.

From what you said about her lung problems and minor stomach problems, she could very well have CF. No way to tell until she's tested. No use in getting all worried over her having it yet if you don't know. Get her tested, and if she's positive, then come back and ask questions.

Just quickly to relax you a bit... When I was born, my parents were told I wouldn't likely see past 18. I'm 22 now. And in my 22 years, the lifespan has gone from 18 to 35. Being that your daughter is so young, she will have a big advantage, and will likely see beyond 35. CF is serious business, and I wouldn't ever tell anyone otherwise, but it's not as bad as it was, for instance, when I was born. It's getting better all the time.

But like I said, don't concern yourself with that yet, because it may be for no reason.
 

JazzysMom

New member
First lets start with that many, many CF diagnoses have no known famiy history. It sounds like there is a good possibility that she could have CF. You are much better getting your child tested & knowing for sure then to leave her untreated which can be worse. Do you have a right to be scared? Absolutely. CF can be a very stubborn, difficult & confusing illness. The fortunate thing is that your child has access to meds & treatments at an early age. That helps minimize the damage over the years. I dont want to overdramatize or underdramatize the illness. Everyone is different. All I can say is to definitely get her tested preferably with genetic blood test, but they usually start with a sweat test. FYI the sweat test can come up with a false negative result, but never a false positive. If it comes back that she has CF then I suggest buying a notebook or log of some sort & keep track of all thoughts, questions, meds, concerns & answers to it. There will be a lot of info to retain. Once you have a dx & a treatment plan, I promise it gets easier. There will be good/bad days, but CF will become a part of your every day life. Much better to have to incorperate it now then when she is a teenager. Make sure the testing is done at an accredited CF center. Its not a speciality at other places. Please come back here for any ??? or support you might need. Let us know either way tho, ok?!
 

anonymous

New member
they are sending her to an allergist to get tested for everything else first. Should i press to have her tested sooner that later??
 

Emily65Roses

New member
I would press for testing myself. Her symptoms are worth the demand of a CF test. A lot of doctors don't know newer information about CF. They think you have to have sh*t lungs and weigh 2 lbs and always have diarrhea to have CF. There are hundreds of different mutations, and each CF case is different. Your daughter could possibly have CF, and I personally would push to get her tested. Either way, whether she has CF or not, when dealing with doctors, you have to be her advocate. That's one thing CFers learn, to be pushy with doctors and nurses. They tend to like to think they're always right, and sometimes they're not. So even if you're just worrying, tell them to test her and rule it out.

Feel free to keep coming back to ask anything, and feel free to private message me (the person at the top of my response box with a little chat bubble next to their head) if you like.
 

miesl

New member
Yes, push to have her tested sooner rather than later.

If she has CF - the sooner you start the correct treatment, the better.
 

Ratatosk

Administrator
Staff member
When DS was diagnosed at birth I scoured the family histories, believing it couldn't be true because nobody in either of our famlies has ever had CF. My father-in-law has 15 brothers and sisters -- so DH has lots and lots of cousins on that side of the family and a few more on his mom's side.

DS was born with a bowel obstruction due to meconium illeus, so we found out almost right away that he had CF. A friend of mine's granddaughter got RSV as an infant, was tiny, but so were most people in her family and she had constipation issues. The doctor said "lets do a sweat test to rule out CF"

CF is a complicated disease. Some people don't have pancreatic insufficiency and therefore don't have the malabosorption issues that require enzymes. I met a teenager shortly after DS was born -- she pretty much just had sinus issues.

If you look on the CFF.org website you can see if there's an accreditted cf clinic in your area. Liza
 

anonymous

New member
Thank you so much!! I am so upset and just worried and i am trying not to worry myself but it is hard. We have an appointment with the allergist on May 4th and i will let you know from there. What kind of treatments do they do for CF patients??
 

Emily65Roses

New member
Treatments, yikes. There are so many. Two big categories (at least in my head) are nebulized meds and chest therapy. There are others I discuss briefly below. Oral meds, IVs, etc.

The most popular nebulized meds:
Pulmozyme
TOBI
Colistin
Pulmozyme is a mucus thinner. TOBI is an antibiotic, as is Colistin.

Options for chest therapy:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.aeropharmaceuticals.com/products/acapella_web3.jpg">Acapella </a> You breath into it and it vibrates down into your lungs.
<a target=_blank class=ftalternatingbarlinklarge href="http://papapoo.com/gad-flutter.jpg">Flutter</a> Same basic principle here. The big difference is that the Flutter does it with a ball that floats in the air when you blow into it, where the Acapella is kind of a seesaw effect.
A big popular one with people is the <a target=_blank class=ftalternatingbarlinklarge href="http://www.abivest.com/images/standard_photo_wText.jpg">Vest</a> The Vest is something you put on. It fills with air and vibrates. The reason most people like this is that it allows for independence and does a full job. Acapella and Flutter don't do as thorough a job.
The last main one (to my knowledge) is manual therapy. This is the one they always used to do. It doesn't allow for as much indepedence, but it does a more thorough job than the Acapella or Flutter do. Someone basically hits you with cupped hands for a certain amount of time in several positions (back, sides, chest, stacked on pillows elevated, to allow gravity to work). This is the one I personally use, because it works the best for me. My boyfriend has been doing it for almost a year now, and rarely misses.

Then there's also oral meds, and those are plentiful. Pancreatic enzymes, special water-soluble vitamins, acid reflux meds, antibiotics. I know I'm forgetting some, those are just the ones I take. Oh and after you get certain bacteria, they start occasional IV antibiotics. There comes a time when oral antibiotics don't work as well anymore. I myself go on IVs <i>about</i> twice a year, and I still have 70% lung capacity, give or take.

If you're curious as to why I discuss antibiotics with a genetic disease, let me run by it quickly for you. CFers are prone to all sorts of lovely bacteria because our lungs are wet, warm, and sticky. Perfect. The most common is called pseudomonas. Almsot every CFer will get this at one time or another. It's in so many places. Many healthy people have it in them at any given time, but it doesn't affect you so you don't know. And after a CFer starts culturing it regularly and continually, it's pretty much impossible to get rid of. I have 2-3 strains of this right now. There are others, but the two main bad ones that people tend to worry about are MRSA and burkholderia cepacia. MRSA is methacillin resistant staph aureus. It's fairly rare, but resistant and annoying. It's not the end of the world though. I've had it since I was 16. Cepacia is a b*tch. No sense telling you otherwise. It's not <i>necessarily</i> an immediate death sentence. Some people live with it for years. But it sucks, and most transplant (tx) centers in the US will not do a tx on a CFer with cepacia.

As for tx, in case you don't know (I don't know how much research you've done)... there comes a time where a CFer has two choices: Try for a double-lung tx and hope to get one, or die. The death may not be immediate, but it's not 10 years down the road. Many many CFers opt to try for a tx, many do not.

Continue to ask any questions.
 

elifowler

New member
I really appreciate all the help!! I am so worried about her that i cant even see straight. My husband is just beside himself. Our insurance is not that good and costs are going through the roof. I work at a childcare facility and my boss just loves my daughter and we are trying to find a CF fundraiser even if she does not have CF this is a scare that i wont forget. Any ideas or any organizations that you can recommend for CF
 

Emily65Roses

New member
The main one is obviously the Cystic Fibrosis Foundation. All sorts of fundraising, volunteer opportunities, etc. The main site is here:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/home/
">http://www.cff.org/home/
</a>
There's also the Milan Foundation. That's a pretty big one:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.milanfoundation.org/">http://www.milanfoundation.org/</a>

Oh there are more, btw, those are just the two I can come up with this instant.
 

ReneeP

New member
Hi... You've already been give really good information so I won't go through that again... I just wanted to touch on your comment about having an appointment with an allergist to try eveything else first. I would HIGHLY recommend you ask for the sweat test first. When my first daughter was 2 she had also had pheumonia several times and wheezed constantly. There was no history of CF and the drs didn't even mention it to me. They did send her to an allergist and put her through allergy testing and it was less than a week later that (by sheer coincidence) I ran into a high school friend whom I hadn't seen in years and she was telling me that her 2 daughters have CF. When she described it to me I knew immediately that is what my daughter had. I took her to the pediatrician and he laughed at me but I wouldn't leave the office until he ordered a sweat test....of course it was positive.

Sorry, I'm getting off track....the point I am trying to make is that the sweat test is SOOOO much easier on the child than allergy testing is. The sweat test is painless and easy.... quite the opposite of allergy testing. Now, that isn't to say she won't still need the allergy testing...but I would certainly try the easier stuff first.

Good luck to you... And remember, even if the results are positive, it really is not the end of the world....it may feel like it, but it isn't... My older daughter was hospitalized multiple times before she was diagnosed at 2 1/2...she was hospitalized once right after diagnosis to clean her out and she has not been hospitalized since...she is now 11. Her health improved so dramatically after diagnosis that it was like I had a different child. So there are positive sides to the diagnosis...At least they know what they are treating now...
 

Emily65Roses

New member
On top of what Renee said. If you do a sweat test, make sure it's a CF center. Docs at other centers don't know how to perform the test / read the results. And more conclusive (these days) than sweat tests are genetic blood testing. That would be worth doing too.
 

thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

Options for chest therapy:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.aeropharmaceuticals.com/products/acapella_web3.jpg">Acapella </a> You breath into it and it vibrates down into your lungs.

<a target=_blank class=ftalternatingbarlinklarge href="http://papapoo.com/gad-flutter.jpg">Flutter</a> Same basic principle here. The big difference is that the Flutter does it with a ball that floats in the air when you blow into it, where the Acapella is kind of a seesaw effect.

A big popular one with people is the <a target=_blank class=ftalternatingbarlinklarge href="http://www.abivest.com/images/standard_photo_wText.jpg">Vest</a> The Vest is something you put on. It fills with air and vibrates. The reason most people like this is that it allows for independence and does a full job. Acapella and Flutter don't do as thorough a job.

The last main one (to my knowledge) is manual therapy. This is the one they always used to do. It doesn't allow for as much indepedence, but it does a more thorough job than the Acapella or Flutter do. Someone basically hits you with cupped hands for a certain amount of time in several positions (back, sides, chest, stacked on pillows elevated, to allow gravity to work). This is the one I personally use, because it works the best for me. My boyfriend has been doing it for almost a year now, and rarely misses.</end quote></div>

There's also the percussor. Not sure if this was mentioned. Its like an oversized wand that vibrates on you back and chest. You hold it to your body to do it. Kind of like a massager.
 
Top