Re: Ambry Results In

May 28, 2003

Jan,

I felt the same way when the second sweat test came back positive for my

daughter 11 years ago, she will be 16 next month. It was the last shred of hope

that she may not have cf.

As far as the persistent cough. I can't count how many bottles of phenagren

with codine, or some sort of Tussinex she has gone through. As another post

said, they really need their sleep and they need calories for better uses than

to

cough all night. Ask your cf doctor, I wouldn't use OTC products unless he

says too.

We're all here for you, good luck!

Lorenzen, mom of , almost 16 wcf

May 28, 2003

Jan,

I am so sorry!! But at least now you know how to treat his symptoms. He need

to get a throat culture to see if he has psuedomonas. Once we did and got

treatment for it the cough went away. You know you have a lot of support her

when

you need it. There are lots and lots of shoulders to cry on here!! Deb A

May 28, 2003

Aw, Jan. I'm so sorry you have that last shred of hope taken away. But

at least you know for sure now and can move forward. Wish I were there

to give you a big hug.

About the dry, nonproductive cough, been there done that with .

His doctor approved a cough suppressant. He said as long as it was a

nonproductive-tickle-at-the-back-of-the-throat-persistant cough, then

there was absolutely no reason for to lose sleep. In fact,

losing sleep and burning calories from coughing was only adding to

the harm.

So he prescribed some liquid med -- I remember it was yellow and

started with a T. Tussin maybe? It was a prescription, not OTC. It

worked like a charm and was so much better than having cough,

cough, cough until he was wet with perspiration and vomiting on the

sheets and blankets in the middle of the night.

And really, if you're giving the Benedryl, which can dry secretions,

you're probably better off doing the cough suppressant, which may not

contain something that dries secretions.

Kim

's test results have come back and he does have another CF

mutation. I cried a little on the phone and the doctor asked me if I

was surprised. I said no - just disappointed. Did he expect I would

jump for joy?

BTW, the last week has been unable to sleep most of the

night because of his cough. It is a sinus drainage type cough, dry and

non productive. Since they can't take cough syrup, what can be done to

alleviate the tickle that keeps him coughing? Tonight we are trying

a dose of Benedryl but it is not helping.

jan

May 28, 2003

I know exactly what you are going through. When the radiologist told

me that her x-rays from her lungs looked like CF, I probably had a

blanked stare in my face, not my baby!!!. It was a week before we

got to the hospital and sweat test, etc, were done. That was exactly

a year ago this week. The good news is that he is now going to be

treated right and science is non stopping, we have to beat CF.

About the cough, do get something with codeine and always keep some

at home. He needs to rest at night so he can get better soon. A

word of caution never give him any cough suppressant with codeine

without food, a gets a horrible, horrible stomach ache.

Love to you and your family,

mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf

> 's test results have come back and he does have another CF

> mutation. I cried a little on the phone and the doctor asked me if

I

> was surprised. I said no - just disappointed. Did he expect I would

> jump for joy?

>

> BTW, the last week has been unable to sleep most of the

night

> because of his cough. It is a sinus drainage type cough, dry and

non

> productive. Since they can't take cough syrup, what can be done to

> alleviate the tickle that keeps him coughing? Tonight we are trying

a

> dose of Benedryl but it is not helping.

>

> jan

May 28, 2003

I totally understand that disappointment. In fact, I felt it all over

again when I read your post.

I am sorry, but glad you are with us.

Also, when checking about the cough, just to be safe, have the

doctors listen closely for wheezing. was diagnosed with

asthma after a bout of nighttime coughing.

Probably it is just the sinus drainage.

I hope it passes quickly.

Thoughts and prayers are with you.

Lenora

>'s test results have come back and he does have another CF

>mutation. I cried a little on the phone and the doctor asked me if I

>was surprised. I said no - just disappointed. Did he expect I would

>jump for joy?

>

> BTW, the last week has been unable to sleep most of the night

>because of his cough. It is a sinus drainage type cough, dry and non

>productive. Since they can't take cough syrup, what can be done to

>alleviate the tickle that keeps him coughing? Tonight we are trying a

>dose of Benedryl but it is not helping.

>

> jan

>

May 29, 2003

I have been told it is OK in situations like this to give a cough

suppressant. If the OTC kind doesn't work, you can plead to the docs for

some REAL cough syrup with codiene. Explain the situation and that this

cough is doing no one any good and you all need your sleep. Most docs will

give it to you on the condition you use it only when REALLY needed. Just a

suggestion, take it or leave it. Sorry to hear he does have another rare

mutation. We () had the Ambry test too and she still has one df 508

and one unknown. We KNOW she has cf but she just must have a super rare

mutation. When I got the news they still didn't find her other mutation I

was not happy. But I'm sorry for you since you were wishing it would go the

other way.

love,

M

May 29, 2003

Hey Bren,

that is exactly what several CF moms in our support group said. they didn't

want everyone to just go out & buy OTC cough syrup , they wanted to tell &

know from parents what they were given child though. It makes good sense.

THEY -we all--NEED the sleep as well as the medicine. It sure helps all else

fall in proper place.

Your so wise....thanks ,

LOVE & HUGS, grandmomBEV