Re: Advice/ help please

February 24, 2004

In a message dated 2/24/2004 2:07:13 PM Central Standard Time, jojay9@...

writes:

Peggy

I have two daughters with CF and my youngest cough more when on tobi. I have

ask the doctor about it and he says that some people feel that tobi irritate

there throat more then others. A constant cough can mean a bacteria but an

occasional cough can just help them get mucus up. So cough is good when getting

rid of mucus but all the time can mean there is bacteria and they need to be

tested. Hope this help. Deb A

February 24, 2004

Peggy -

Could it be allergies? Are you doing chest pt's? If not, maybe you should

to get things moving around. I am sure the CF Center can get you those little

pink cups...

I guess to me coughing is normal. Sometimes its not productive but I feel

that they are moving stuff around.

If you are confused have the CF CEnter clarify. Remember, they work for you

and can't help you if you don't understand something. They will not think

your stupid, quite the contrary, they would rather you ask questions and learn

rather than keep quiet.

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

February 24, 2004

Hi Peggy,

's doctor is always saying what a " mild case " she has (yeah mildly fatal,

whatever!) but there has not been a day since she caught her first cold at 5

months of age that she has not coughed. Sometimes it is much worse than others

but she always has some cough. The type of cough you are describing does not

sound too worrysome. As for coughing more when on Tobi, I think coughs

more when off it. But everyone is different. When do you worry? hmm good

question. Some people worry all the time, that is just how they are. Trying not

to worry is ridiculous. I don't worry as much as I used to but I do still

worry. It's just life. If you are really worried, call the doctor. I have

found just calling helps. I have a call in today to try and get 's

culture results. So I may be back on later with bad or good news.

love,

M

February 24, 2004

Hi Peggy,

Just a couple thoughts from a mom who went round and round with kids

with asthma, allergies, and one with CF on top of it all...

You said your boys both have allergies and are taking Claritin. My

daughter (also known as Princess Serverely-Allergic-to-Dust-Mites)

has probably tried every prescription and OTC allergy med in the

world -- both pill and nose spray (and allergy shots). She'd always

have a honeymoon period with everything, they'd work fantastic for

about two weeks, then they'd poop out on her.

Finally, a prescription allergy med worked with her without turning

her into a zombie (can't recall the name), and she also uses Patanol

for her severely itchy eyes.

So, your boys' coughs MIGHT be allergy-related despite the Claritin,

or it could be bronchospasm due to the TOBI. Remember, any time you

inhale anything -- whether it's an FDA approved med, smoke from the

neighbor's BBQ grill, or the scent of bleach from a just washed

bathroom -- you irritate the lungs.

And TOBI is no different. Sometimes when people first inhale it, they

experience hoarseness, scratchy throat, or bronchospasm (ranging from

a tickling cough to an outright coughing fit). Sometimes the symptoms

go away in a couple days, sometimes it stays for the duration of the

treatment.

There are some people who just don't do well on TOBI, but do well on

the " old " version of tobramycin (no bronchospasm or hoareness).

The " old " version of tobramycin is a nasty-smelling, oily solution in

a glass vial that you have to use a hypodermic syringe to get the med

out of the vial and into the neb cup. It's intended used is IM

injection, but doctors got desperate for something new to replace

IM's and IV's so that's when they started having patients inhale it.

We used to mix the oily, stinky med with a couple cc's of sterile

saline for to inhale. He'd do this three times a day for three

weeks at a time (this was long before the 28-days on/off protocal).

The nebs were a mess to clean from the oily residue. Thank goodness

TOBI came along (he was one of the TOBI study participants back in

1996-1997).

Also, keep in mind that antibiotics (especially many of the type used

for people with CF) deplete the body of magnesium, even inhaled

antibiotics will over time. Allergies are a sign of histamine

release, which also points to a magnesium deficiency.

I wonder if your boys might do well with upping magnesium intake?

Magnesium relaxes constricted airways so likely won't have that a

bronchoconstricted cough. You'll know when the cough is due to

something else (inflammation/infection).

You might also really look at diet -- are the boys getting too many

inflammatory-causing fatty acids in their diet and not enough helpful

essential fatty acids?

Kim

Mom to (24 with cf, asthma, hardly any allergies) and

(21, aka Princess Allergic to Dust Mites, Mold, Cats, asthma but no

CF)

> Hello everyone,

>

> I have a few questions that I was hoping some of the more

experienced people (more so than me anyway) could help me with. As

you all know, I have five-year-old identical twin boys with CF. They

were diagnosed at five months of age when Jonah caught a cold (RSV)

and could not shake it. He was hospitalized for about three weeks

and was tested. Jonah did not go back into the hospital again

until a few weeks ago. has only been in once- back in August.

They have been very healthy thus far. (They are in the 90th-95th

percentile for weight on a very low dosage of enzymes.) Anyway, they

have both cultured PA. Both of them had clear cultures when last

checked. Jonah's was checked on the 9th of February. He had just

finished his tune-up. 's was checked on the 8th of January.

They both have allergies but are taking Claritin daily. They are both

currently on their 28 days " on " TOBI. They are, however, both

coughing again. It is not a lot and is not a constant throughout the

day. It is also not during the night. Well, if it is, it does not

wake anyone up. They would let me know if they were awake. They

cough more in the mornings when they get up and when they are doing

their TOBI. They might cough a few times throughout the day, but it

is generally not productive. Jonah's cough basically went completely

away while he was on his IV antibiotics, but it came back within a

week of coming off of them (even though he was on TOBI). My question

is this: Is it common to cough more when on TOBI, should I be

worried, how do you know when to worry. Also, is it not a given that

CF kids will cough? That is what all of the literature that I have

ever read says, but whenever they go to the doctor, they talk about

wanting them back to a baseline of no cough. I am confused.

>

> Help,

> Peggy mom of Jonah and 5 years wcf

February 24, 2004

Great post, Kim; I have one wildly allergic kid who uses Chlorpheniramine

Maleate, one who uses Benedryl (and stays awake!), and I who use Allegra! We

are all different. I am unable to tolerate Pulmozyme or TOBI,

and use N-acetilcysteine (sp?) and old fashioned unit-dose Tobramycin.

We are just all different; I guess I feel worse for my youngest who is very

allergic AND has cf, though the middle one is allergic to milk AND lactose

intolerant, BOTH; the oldest one is only allergic to ragweed (which we do

not have out here, and Acacia trees, which we DO have, in abundance!!!

I guess we are all different; we all four of us use Patanol as well for our

wildly itching eyes--such fun! Thank you for your post, Love to you,

, , Dorsey, Coby and all close to you, n