Thanks for the update----I feel better, now, but I’m still infuriated that it took so long for them to take care of her. I will say a prayer that this one does the trick for her!
Laurel
momto4girls kartagener-cpt7723@lists.careplace.com wrote:
Laurel,
Thanks for all the great information. I got a good referral today from the
PCD foundation and will be asking the doctor about the alternative to
Albuterol as you suggested.
We started doing CPT on Nick as an infant but as you say, you can only do so
much. What actually did work to clear him was to make him laugh! Although
at times, he wouldn’t laugh or it still would not "clear him (I could tell by
his coughs). And here I admit to still feeling guilty about this to a
degree – I would make him cry. It was when he took those deep breaths that he
would open his lungs that it would come up and he would finally cough it out.
Nick slept either in his car seat or a baby swing next to my bed until he was
about six months. I did not sleep much his first year of life.
I will also be inquiring into the vest. I think he is ready for this and
needs it.
I did want to share something I read years ago from an adult with PCD. He
swam as a means to work the mucous out. As he explained, when you are
horizontal and exercising, as with swimming, it may be easier to work the mucous
out. He also would keep a cup poolside to spit in which he later took in for
testing.
But the best advice I got was from a CF doctor: exercise. Our instincts are
to lay down our sick children but for CF and PCD patients, this is
contraindicated. Unless, of course, they are too sick to go out and play.
Nick has not been interested in swimming but this summer I am insisting on
it. Presently, he plays baseball and the trumpet (not exactly a good
instrument for a boy who makes bubbles with his nose but if he doesn’t mind, I
don’t). This coming year he wants to join the drum line. We still have to remind
him to clear his cough and for heaven’s sakes blow that nose!
Thanks again.
In a message dated 2/11/2008 11:34:02 P.M. Eastern Standard Time,
kartagener-cpt7723@lists.careplace.com writes:
Once you go there, click on “Treatments” in the blue menu bar, then on
"Therapies" on the right side of the next screen. From there, you click on
"Postural Drainage" on the right side of THAT screen. They have drawings
illustrating hand position and positions for the child to be in. Livvi’s probably
small enough that you could do some of those positions with her on your lap,
which is easier on your back.
With older kids and adults, we use both hands for the clapping and
vibrating, but Livvi is probably a little too small, yet, for that. I didn’t describe
the technique for the hand-vibration because I felt that they describe it
better than I do. Also, the vibration is a WHOLE lot easier if you just go out
and buy a good, strongly-vibrating vibrator and use that
on her; I spent YEARS doing this daily to everything from tiny preemies to
centenarians, and I can tell you, doing the vibration by hand it hard as heck
on the person doing it! You have years ahead of you, doing this, so making
it as easy as possible on yourself is a very good idea!
BTW, you may find that it works better if you use one hand for one side of
her and the other hand for the other side. I also want to remind you that,
since Livvi has the reversed organs, you’ll have to reverse those drawings when
you pound on her, as the right and left lungs are different.
How’s she feeling today?
Laurel
**************The year’s hottest artists on the red carpet at the Grammy
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Thank you for this post and information. It has made me think and I am
adjusting Nick’s treatments.
We have been using a nebulizer since his birth but only “as needed.” As of
this week, I have him nebulizing once a day whether he is sick or not. He is
on an inhaler but that doesn’t seem to do as well.
Presently, Nick is having a hard time kicking a sinus infection. He has
been on antibiotics off and on for the past month. His headaches are a big sign
but lately, he is more lethargic than usual. He is a very active boy
usually but he is coming home tired and needing to nap.
His lungs appear to be clear. He was treated for wheezing and that same
sinus infection a month ago. He seems to have more problems with his sinuses
than his lungs. Though this is always a guess and a doctor visit as he
maintains a good croupy cough always.
He was not too happy to nebulize every day.
Again, I thank you.
In a message dated 2/10/2008 7:02:07 P.M. Eastern Standard Time,
kartagener-cpt7723@lists.careplace.com writes:
Is Livvi on nebs or at least an inhaler (with spacer) every day? If not, I
am personally a VERY firm believer that ALL PCD kids should be. No parent
wants to make their kid take medicine they don’t need, and neither do I. But
my KS sis and I are prime examples of “locking the barn after the horse has
been stolen”. They didn’t know we had KS/PCD back then, and all the docs we
saw felt that our crummy lungs and ears were due to the rotten sinuses. They
COMPLETELY focused on treating the sinuses to the total exclusion of our
lungs, and the only real treatment we got for our ears was antibiotics when we
had an ear infection, and a surgical rebuild of my left eardrum for me, when I
was 8. I’m sure if myringotomy tubes had existed back then, my parents would
have gotten me those, if they could have—I don’t think they did, although
it would have been nice if at least one of my docs would have been willing to
lance my eardrums when I got bad
infections—it might not have
saved my hearing much, but it would have saved ME an awful lot of agony
during those years when I was getting such constant ear infections.
**************The year’s hottest artists on the red carpet at the Grammy
Awards. Go to AOL Music.
(http://music.aol.com/grammys?NCID=aolcmp00300000002565)
Laurel,
This pretty much follows how it worked with Nicholas. Because he was
diagnosed at birth and so sick, I became acutely aware of the signs and sounds of
his infections.
Many times, I would take him to the E.R. where they wondered why I had taken
him there as he wasn’t that sick. Nick would get sicker as we waited and
sure enough, I was right. My doctor back then learned to listen to me. But we
have moved many times over since then and I have yet to meet as good a
doctor as Dr. Silverstein in Orlando, Florida. We also had a great ENT doctor in
Orlando who had experience with KS/CPD children, Dr. White.
As for a remedy for ear pain, I learned many years ago from a Mormon friend
who followed homeopathic treatments, that placing a slice of onion to the ear
will draw out infection. You may want to Google this if interested. I am
not sure it does work with the infection behind the ear drum if there are no
tubes in place.
Nick’s tubes were placed in at 4 months and I think it did a lot of good for
him. He still had infections, but he didn’t have the pressure. He has mild
hearing loss but he should be tested again soon.
Unfortunately, Nick has a very high pain threshold and I can’t count on him
telling me when he is sick. By the time he does complain, he is in bad
shape. As I said, I go by my instincts and a learned ear for how he sounds. His
cough will change slightly and I am aware. One look at his face and I can
see he may have a sinus infection, as he does now.
In a message dated 2/10/2008 5:01:32 P.M. Eastern Standard Time,
kartagener-cpt7723@lists.careplace.com writes:
One time, I was at work when this happened. At 7 am, I was fine. At 8:30,
I felt a little chill, so I took my temp, and it was normal. By noon, my
temp had risen 5 degrees. Needless to say, I was pretty sick. Many of us
PCDers do not GET any warning that we are sick. It just comes ‘out of nowhere’,
as far as we can tell. Livvi may be a PCDer like
that—this ear infection sounds like she might be, and it sound pretty bad.
Now, in the meantime, you could try letting her hold a heating pad to her
ear, or a warm compress (be VERY careful it isn’t too hot—those tales you
hear of people being burned by these things are NOT old wives’ tales—I have
been burned pretty badly, myself.) If that doesn’t help, you COULD try cold
compresses, but I have never tried that, personally. She will be able to tell
which–if either of them—is helpful pretty quickly.
**************The year’s hottest artists on the red carpet at the Grammy
Awards. Go to AOL Music.
(http://music.aol.com/grammys?NCID=aolcmp00300000002565)
Missy,
What I do know is that your child needs to be on a "wide spectrum"
antibiotic. Augmentin would be one of those and I read that she is on that now. This
will work.
Also, laying down flat can sometimes hurt more than a propped head. This
has worked at times with Nick.
Glad to hear Livvi’s beter
In a message dated 2/10/2008 2:43:24 P.M. Eastern Standard Time,
kartagener-cpt7723@lists.careplace.com writes:
Does anyone have any tricks for soothing a little one’s bad, bad ear ache
besides Tylenol? Livvi has been on her Omnicef for 4 days now, still has a bad
nose & cough & this afternoon she’s feeling awful & crying a lot with a bad
ear ache. I’m thinking she probably needed a different antib. but not sure
what to do about it today. No one at the ER here would understand about PCD. I
guess I’ll just
wait & call her Drs. tomorrow. Her fever is only around 100, so not bad now.
Thanks, Missy
**************The year’s hottest artists on the red carpet at the Grammy
Awards. Go to AOL Music.
(http://music.aol.com/grammys?NCID=aolcmp00300000002565)
laural I agree, actually when the new people moved
in under the new boss, she brought some of her
own people she was surprised that I had not passed
CPR…before I left to go on disability, it was going
to be made mandatory…I am sure, someone would
have helped me out…maybe…I was now getting older…
and they were matching my 401k…just kidding…
There was also a time when they were making it
mandatory for everyone to get a measles vaccine,
will i told them I had measles…the thing is with
having CVID, I am on IVIG…the measles vaccine
is a live virus…and I refused to get one…so they
did a titer on me, and found out I did carry some
immunity against measles…
Remember, my dad told me I could have gone
on disability when I was 18 years old…under 70 per cent
will get you on disability…I had 50 at 18…I didn’t know
any better, my dad said, “well I wanted to work”.
and I did…by the time I quit, I had 30 per cent lung
capacity…and a peak flow of 200…to be hired you
needed a peak flow of 300…
But now I wonder, if i worked too many years…because
I can’t get on a plan that will pay for my co pays…
I knew of a Real Estate worker who made lots of
money, owned a 100,000 patio home…maybe she did
not work all that much…but when she went on disability
for her Emphysema, she received 700.00 social security.
My gosh, she got free housekeeping paid for, her
co pays were 2.00 dollars and still was on a Medicare
HMO…she could choose…she had a nurse check
on her, all paid for by the state, because she did
not have as much SS taken out as I did, and I am making
a little over of getting any of those benefits, where
I have to pay full co pays…
I think it cost her 10.00 for a hospital visit…okay
I am not complaining, there must be a reason, accept it.
I was happy to work all of those years, but as you
said, when you are already sick, it gets harder to
take complaints from your co workers, knowing
of my sensitivity to odors and sinus and coughing
problems…fevers at work…I guess when that boss
said to me. “Betty “if you don’t know when you
are sick you don’t belong here.” I would come in
huffing and puffing, I even got a disabled sticker…
the thing is when you are born sick, you don’t know
any better. And for the parents…I always liked my
dad’s philosophy…” I raised you kids until you were
18 years old to the best of my ability, after that
you are on your own…" IT made adults out of us
not dependent on our parents, for what to do next
or this and that…Instead of dad, what do you think
I should do, it always went, Dad I am going to do this…
----- Original Message -----
From: “lars” kartagener-cpt7723@lists.careplace.com
To: elizabethashley@copper.net
Sent: Wednesday, February 13, 2008 7:07 PM
Subject: Re: [kartagener] Livvi’s sick again-follow up appt. (after diag.)
today
Hi, there,
It’s my post that you’re responding to, and I really don’t know what group you’re in, but it seems it crosses trails with my group. Anyway, I am VERY glad for Nick’s sake that you saw my postm and you’re very welcome!
I really can’t stress enough that the single biggest thing we have to worry about in PCD is airway clearance. We can’t stop the infections entirely, but doing the best airway clearance we can certainly cuts down on the number of those that we get; if there is no mucus in our ears, sinuses, and lungs for the bugs to grow in, they have a much tougher time setting up housekeeping.
Just the fact that you describe Nick as “maintaining a good croupy cough always” tells me, both as PCDer myself, and as and ex-respiratory therapist, that Nick is not able to do a really good job of getting and keeping his airways clear the way it is now. I am very glad you’re getting him to do at least one neb a day; two would be even better, and he MIGHT just be a little more willing to do them more often once he’s gotten used to it and realizes that it helps him—this takes time to sink in, so don’t be surprised if he fights a bit for a while.
None of us LIKE doing nebs or all the other stuff we have to do with this disease; we have simply learned that life WITH these things is a whole lot better than life WITHOUT them. It will take time for Nick to feel the difference, but stick with it. Yes, he CAN live without it all–but he could also wind up like me, who also had no treatment; on oxygen 24/7, and pretty sure I’m in my last year or two of life, at 52. All the rest of my body wants to stick around and see what’s gonna happen tomorrow, but it doesn’t look like the lungs can hold up their part.
THIS is why I take the time to talk to PCD parents about what they do to help their kids now. In the PCD Foundation, we have found that PCD kids, while they’re getting diagnosed much more often, are still not getting very good treatment, in general, simply because they can’t get to docs who know anything about PCD. The few who have participated in the PCD studies are doing well, as well as those who live close enough to go to those centers, especially UNC at Chapel Hill. But many, many PCD kids are woefully undertreated, and need a lot more aggressive treatment NOW, in childhood, when there are still halfway decent lungs, ears, and sinuses TO save.
So, as I wind my way off this mortal coil, I figure I will have accomplished SOMETHING with my life if I can help even one kid with PCD have a little better life. I don’t know everything about either lungs or PCD, in spite of having been a respiratory therapist for many years, and in spite of having PCD myself. What I do have is a rather unique perspective on it, as nobody knows what it’s really like to have PCD except another person with it.
Of course, I will probably never know whether I was able to help any kids, but I can try; as the Biblical quote goes, ‘cast thy bread upon the waters’. So that’s what I’m doing.
Laurel (52, PCD/SI, SC)
Mom2Nick kartagener-cpt7723@lists.careplace.com wrote:
I obtained this article from 2004 about the latest treatments for PCD. You
normally have to pay for this so it is not for general dissemination. You
may want to print it off and give it to your doctor to help them understand
the disease better until you can be seen by one the centers for PCD.
On a personal note, I have found Mucinex-D extremely helpful, especially
with swellings in the sinuses. I had a bad infection in my sinuses for a
while and it was really affecting my hearing. I was getting embarrassed. I
went to my regular doctor who recommended taking it four times a day instead
of twice a day. It really did the trick. I take it regularly now. For young
children, it is a must to check with their doctor about using because they
are still developing.
Good luck!
-----Original Message-----
From: Mom2Nick [mailto:kartagener-cpt7723@lists.careplace.com]
Sent: Wednesday, February 13, 2008 12:32 PM
To: shelagham@cox.net
Subject: Re: [kartagener] Livvi’s sick again-follow up appt. (after diag.)
today
Excellent!!! I hope the doc recommended by the PCD Foundation turns out to be a good match for you and Nick! They still aren’t perfect (nobody is!) but the PCD Foundation is very good at actually checking these docs out before they recommend them to anyone, so I feel very confident that Nick will at least be getting seen by a doc who may really HAVE a little experience with PCD, or at the very least, who is willing to keep and open mind and try different things with Nick, to see what helps him most. That’s something even the most experienced of the few docs with PCD experience really have to do, anyway, as we are so very different from PCDer to PCDer.
I don’t BLAME you for making him cry, as long as you didn’t actually hurt him doing it----a desperate parent has to do whatever they can to help their child to the best of their ability. My mom never had to worry about making me cry, to make me cough; my aunt one time told me she never saw a child who cried more than I did, as a baby—that I cried 21 hours out of every 24, every day, til I was about 13 or 14 months old.
What really boggles MY mind is how my poor mother, who had NOTHING to help her ‘fix me up’ except antibiotics for my constant ear infections, managed to not only deal with me so sick with no help (and no REST, either!), but also deal with my older KS sister, who was nearly as sick as I was, and still didn’t go nuts and kill me, at some point—if only to put me out of my misery. I don’t know how you PCD parents manage to stay sane even nowadays, when there IS so much more stuff out there to help the kids of today! You are incredible people, I need to TELL you that, all of you!
You’ve probably noticed that Nick will cough when he goes to bed, most of the time. This is a good indication that changing the normal position of some of his airways by lying down is enough to help some of that stuff get moving. That’s part of why postural drainage and percussion work (CPT)----the positions we put ourselves in gets gravity on our side, so to speak; we’re draining some of the mucus higher in the airways so we don’t have to cough so hard and so long to get it out. That’s why swimming, crawling through tunnels at the playground, squirming around on the ground playing ‘war’ or cowboys and Indians (do kids still DO those things, these days?) helps us so much. It’s even better if you can get him to swing by his knees upside-down from the monkey bars or a tree branch—I did a lot of that as a kid for fun, never realizing I was helping myself.
That’s one of the biggest keys to getting the kids to do airway clearance stuff regularly until they’re old enough to both realize that doing it all helps them feel better and not get sick so often, and the whole POINT to it all----making it all as fun (or at least as ‘unboring’ as possible. No kid likes to waste time feeling lousy and being sidelined by nebs, CPT, Vests, doctor’s visits—and PCD kids are no exception. It’s very hard when you’re young, to be having to mess with all this medical nonsense that it seems like nobody ELSE has to mess with, but it’s extremely important.
I used to hate my mom’s attitude towards all this, but she had TWO of us to deal with, almost no treatments for us, she wanted the best for us and did everything she knew of to get it—it wasn’t her fault the docs she took us to had simply never HEARD of KS. But one thing that helped a lot, not only with the KS, but with many other things I’ve had to face in my life along with that, was her attitude. Once she made up her mind that a doctor’s advice was good for us, we were going to DO it, and the less fuss we made about it, the easier it would be on us and everyone else concerned, and the sooner it would be over for a while. She didn’t brook any real fussing about doing something for our health—we could COMPLAIN about it, but we had to DO it.
This sounds harsh—and it was, because in those days, parents didn’t get arrested for child abuse if they spanked their kids–and Mom did, if she had to. We knew, from a very early age, that nothing the docs were likely to do to us was going to hurt as much as Mom would, if we made too much of a fuss. So we developed a very clinical attitude towards our bodies, and learned to cooperate with it—and that’s one of the handiest things I’ve ever learned. That, almost always, in all things, the quickest way OUT is THROUGH. And often it’s also the best and easiest, in the long run.
So, I suggest to all PCD parents, don’t abuse your kids, but firmness about doing things you KNOW they need to do is probably not a bad thing----a little healthy fear of parental displeasure can sometimes motivate a child when nothing else can! And lots of little rewards when they pitch in and begin to really take some responsibility for their own therapies—there should be SOME compensation for all they have to give up, to treat their illness, I think.
Keep me posted on how Nick is doing, okay?
Laurel
Mom2Nick kartagener-cpt7723@lists.careplace.com wrote:
laural, i think you hit the nail, we did survive,
although I did need antibiotics…esp penicillin,
there were not many in 1944…and my dad had
to fight for it…but we didn’t have nebulizer’s or tubes?
I am not sure on that one…PFT tests…the most
important thing is “clearance.” and keep ing the
infections down…parents of course did drag
us to allergy specialists too…and CF doctor’s…
etc…but for your poor mom, even Laural you
did great, even going into respiratory therapy work…
Actually when I think I was in my 30’s where I worked
they wanted me to learn CPR…I could not breathe
enough to pass the test…they said, "well we will just
get someone to help you out…but before I left , I was
55…they were going to pass a rule, all have to learn
CPR…good reason to fire someone I guess.
----- Original Message -----
From: “lars” kartagener-cpt7723@lists.careplace.com
To: elizabethashley@copper.net
Sent: Wednesday, February 13, 2008 4:50 PM
Subject: Re: [kartagener] Livvi’s sick again-follow up appt. (after diag.)
today
Well, if they HAD tried to fire you over that, you could have tried getting the ACLU out to help you fight it----being fired over a disability that existed when you were hired for the job is probably NOT acceptable—discrimination against a disabled person, I think it would be considered. Considering that your job was NOT to actually take care of patients, like a nurse or respiratory therapist would have to, and also the fact that there were plenty of people right nearby who could come running and COULD do CPR if someone needed it, I don’t think they could have gotten away with firing you—but I could be wrong about that.
I wound up in RT because I got interested just BECAUSE I have lung disease myself. It wasn’t anything altruistic or noble—just found it interesting because of my own condition. I did enjoy it, though—at least, working with the patients. I hated some of the rest of it—weird hours, sometimes, double shifts, CHANGING shifts (the worst, for me), and especially the era of HMO’s and DRGs, which gradually helped change a job I loved in to one I nearly hated. But I never hated the actual patient care that I did----that part was always a love affair, for me. I just hated the REST of the job, which made doing the GOOD part much more difficult.
But I do think my mom has earned her crown in heaven, just by not losing it in the wee hours of my infancy, and bashing my brains out against the wall! She not only DIDN’T lose it, with every provocation in the world to do so, but she did her level best to get me as much help as she could, in those days. We don’t get along too well, but I love her and would defend her to the death—quite a woman, my mom! She just turned 80 on the 3rd of Feb.
Laurel (52, PCD/SI, SC)
betts kartagener-cpt7723@lists.careplace.com wrote:
Laurel,
It is terribly late but I didn’t want to go to bed without a huge THANK YOU.
I will respond to your kind posts tomorrow. You gave me much to think
about and do.
S
In a message dated 2/13/2008 5:50:36 P.M. Eastern Standard Time,
kartagener-cpt7723@lists.careplace.com writes:
So, as I wind my way off this mortal coil, I figure I will have accomplished
SOMETHING with my life if I can help even one kid with PCD have a little
better life. I don’t know everything about either lungs or PCD, in spite of
having been a respiratory therapist for many years, and in spite of having PCD
myself. What I do have is a rather unique perspective on it, as nobody knows
what it’s really like to have PCD except another person with it.
Of course, I will probably never know whether I was able to help any kids,
but I can try; as the Biblical quote goes, ‘cast thy bread upon the waters’.
So that’s what I’m doing.
Laurel (52, PCD/SI, SC)
**************The year’s hottest artists on the red carpet at the Grammy
Awards. Go to AOL Music.
(http://music.aol.com/grammys?NCID=aolcmp00300000002565)
I’m really glad, S. For Nick’s sake (and yours! You don’t like worrying constantly and losing sleep and all the rest, when you can’t know you’ve gotten him in the best shape he can be in, I know that----you’re obviously a very loving mother), I will be glad to offer any suggestions/advice that I can. Any PCD parent, child, or adult, including me, can use all of that that they can get. I always warn people that I do not know everything, and I have been out of the field of Resp. Therapy for 7 years now, so there have been many new developments that I don’t know much—or anything----about.
So always keep researching on your own, because I learn new things every day, going to the kartagener_syndrome@yahoogroups.com here on Yahoo. I know it’s hard for parents to find the time (especially PCD parents, who have so much extra to worry about with their PCD kids) to visit yet ANOTHER online group, but I always suggest that they check in there from time to time, even just to read back a bit and see if they see something that might help their child. And you can ALWAYS ask questions in there—someone will answer—maybe not right away, because we don’t always feel up to checking it ourselves every day, but you’ll get an answer within a day or two from at least one of us. We can be a valuable resource to parents; after all, we collectively have an AWFUL lot of years’ experience with living with this disease, and we have a treasure trove of info, compared to almost anyone else out there (except other PCD support groups, of course!)
Gotta get cracking on my day----I’m feeling a lot better today, so I have to strike while the iron’s hot and get to the stores I need to get to while I still have the stamina to do it! Hope Nick is taking his first steps on the road to being as well as he possibly can be—he’ll feel a lot better when he stops having to deal with these infections QUITE so often!
Laurel
Mom2Nick kartagener-cpt7723@lists.careplace.com wrote: