My two year old went in for his two year check up last week. We have always struggled with his very small size. He weighs exactly twenty pounds. He also has always had a cough, or rumble in his chest, and lots of bouts of sinus infections and such. His doctor decided to refer him for a sweat test to rule out CF. I really don't know alot about CF, but know enough to be scared. I have three older children, two of whom are followed by endocrinology for short stature. I assumed that thier size is genetic. They have not had a diagnosis of anything in particular. CF has never been brought up by attending pediatricians. If my two year old turns up positive for CF, should my older kids be tested also? Or at thier age, is it pretty definant they don't have it? (age 14 and 11) My 11 year old has also had many bouts of pnuemonia and bronchial stuff, but seems to be growing out of it, he also is very small for his age (49 lbs.) Please forgive me if my questions sound ignorant, I just don't know much about this yet. If you get a chance, please pray for my little guy. As I'm learning more about this, I am adding your kids to my prayers! Thanks!
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Sweat test Nov. 3 for my two year old
- Thread starter kadensmom
- Start date
Emily65Roses
New member
If your youngest tests positive, absolutely have your other kids tested. There are many adults on here that didn't get diagnosed until their 20s or 30s. This can be either because doctors just missed it for 20 years (though I don't know how), and the person always had respiratory problems.... or because they just appeared that healthy. Either way, people are diagnosed way into adulthood all the time. So even if the other kids seem healthy, chances are high enough that they might have it, so it's worth getting tested.
Another piece of advice. Have ANY AND ALL children tested at a CF accredited center. You can find one here:
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a>
The reason I say this is INCREDIBLY IMPORTANT is because although many regular doctors can be very smart, CF isn't widespread enough for the average doc to know much about it. Often non-CF centers administer the test wrong, read the results wrong, or both. So it's imperative that you find a CF center for this testing. Besides, if your child has CF, the best place for them to go is a CF center, because they're prepared to tackle all aspects from all angles, and with the best knowledge, meds, and treatments. So check out that link. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for being scared, no one will blame you. But CF's getting easier to manage all the time. The average, according to the CFF 2004 patient registry has jumped from 32 to 35. That doesn't hold for the entire gamut of patients (for instance, those of us my age or older generally don't fair as well, simply because by the time the newer meds come out, we already have too much lung deterioration to be helped a whole lot - it's a lot easier to prevent than it is to go back and repair damage already done), but it holds very true for the younger children, as they are *generally* still in pretty good shape.
Let me just leave you with this one last piece of info. When I was born (1984), my parents were told it was unlikely I'd live past age 18. Here I am now, at 21, with about 70% lung function. And the average is now 35. So the average for your children would be 35 now... and by the time he hits 35, it may very well be 40s or 50s or higher. So don't completely lose it. Read around the boards, a lot of us have a lot of bad stuff to say about our lives (who doesn't?), but we also generally have a lot of good to say. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Another piece of advice. Have ANY AND ALL children tested at a CF accredited center. You can find one here:
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a>
The reason I say this is INCREDIBLY IMPORTANT is because although many regular doctors can be very smart, CF isn't widespread enough for the average doc to know much about it. Often non-CF centers administer the test wrong, read the results wrong, or both. So it's imperative that you find a CF center for this testing. Besides, if your child has CF, the best place for them to go is a CF center, because they're prepared to tackle all aspects from all angles, and with the best knowledge, meds, and treatments. So check out that link. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for being scared, no one will blame you. But CF's getting easier to manage all the time. The average, according to the CFF 2004 patient registry has jumped from 32 to 35. That doesn't hold for the entire gamut of patients (for instance, those of us my age or older generally don't fair as well, simply because by the time the newer meds come out, we already have too much lung deterioration to be helped a whole lot - it's a lot easier to prevent than it is to go back and repair damage already done), but it holds very true for the younger children, as they are *generally* still in pretty good shape.
Let me just leave you with this one last piece of info. When I was born (1984), my parents were told it was unlikely I'd live past age 18. Here I am now, at 21, with about 70% lung function. And the average is now 35. So the average for your children would be 35 now... and by the time he hits 35, it may very well be 40s or 50s or higher. So don't completely lose it. Read around the boards, a lot of us have a lot of bad stuff to say about our lives (who doesn't?), but we also generally have a lot of good to say. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Emily65Roses
New member
Oh and... feel free to private message me (upper lefthand part of your screen, underneath the cysticfibrosis.com logo - looks like a little lock and will say "no new messages" or "1 new message" or whatever) if you like. I'm willing to discuss anything on your mind.
Thanks Emily! I have been reading some of the posts and I'm feeling better. Whatever the outcome of his tests are, I wouldn't trade him for the world! Your stats are encouraging. I have to admit, I thought the average was like 15 or 16. (I told you I was ignorant!)Of course, I want all my kids to live to be 100, but more important than the length of thier years is the quality of them, and I plan to help my kids have awesome lives! If the tests come back positive, I will definantly have the other kids tested, especially my 11 year old. My two year old, Kaden, is being tested at our local Children's Hospitial. They have a CF center, but our HMO only covers the test. If it comes back positive, I'm not sure what we'll do. I guess we'll cross that bridge when we get to it! Thanks for all the info.
Mom to Kaden age 2 (CF?)
Mom to Kaden age 2 (CF?)
Dear Kadens Mom- welcome and dont feel ignorant. I have a son who is 20 and was diagnosed at 3 mos. He has generally done very well- not much lung involvement, mostly sinus and asthma. I do agree with Emily about having your other children tested and at an accredited center. I will definitely pray for you - I have just found another great web sight- CF 4 Christians- look under the Cystic Fibrosis ring. Both this sight and the Christian one are great. Susan
Dear Susan, I looked for the CF4Christians online. I can't find it. Is it a seperate part of this website? I tried cf4christians.com but that wasn't it. I'm interested. This website also has been really informative. I'm learning alot. I'm not asking anyone to play doctor, but do his symptoms sound like CF to anyone? Two years old and twenty pounds, coughing and sinus infections. Is that usually all you'll see with a two year old? Some of the parents on here have very sick little babies and at this point, besides the coughing, he's pretty healthy. What about constipation? I heard that loose stools are usually a symptom, he has the oppisite problem. I'm not trying to be in denial, but I'd like to be informed when we meet with the pediatrician again. Has anyone heard how Kaiser Permanente handles thier patients with CF? Do you reccomend going outside the HMO? Ok, that's enough questions for now! Thanks again!
Kaden's Mom
Kaden's Mom
oops..
We have Kaiser in SoCal and they have an accredited CF center in Panaramo City (near Burbank). If you live in SoCal this is where you will go. (we are over 100 miles away) We have found that the CF coverage is very good as the medications are the normal co pay. The CF team is very nice and they spend as much time as YOU need and don't rush you out! As far as your sons symptoms, yes it COULD be CF. Constipation is a problem with many CFers.
We have Kaiser in SoCal and they have an accredited CF center in Panaramo City (near Burbank). If you live in SoCal this is where you will go. (we are over 100 miles away) We have found that the CF coverage is very good as the medications are the normal co pay. The CF team is very nice and they spend as much time as YOU need and don't rush you out! As far as your sons symptoms, yes it COULD be CF. Constipation is a problem with many CFers.
Welcome Kaden's mom. Just a word of advice - have your kids take a jacket with them for the sweat test - they forgot to tell me that and so we spent almost an hour running around children's hospital trying to make her sweat enough! It is a totally easy test and if I were you - I would have all of your kids tested regardless if your 2 year old comes out positive. We just had our 3 year old tested a couple weeks ago and she did great - thank god it came back negative (less than 10). Good luck to you - we will keep your family in our prayers.