Re: Re: dr visit/

[Guest guest]

Krystena,

Josh is 14. Things have improved alot since he was diagnosed. We have the right

Doctors and medications now to keep him healthier and more comfortable.

His lung functions are fairly good when he is at his " baseline " (which is not

now unfortunatly). He is on a Adek twice a day, this is a vitamin. He does

Abuterol 2x a day, Plumozyme 1x, and is on a Tobi cycle of 28 days on 28 days

off. I think the tobi had been a great help. Right now he is on Cipro because

his PFT's were down 4 weeks ago and we were trying to avoid IV antibiotics.

Though there has been talk of him developing a resistance to it. Actually we

should be leaving in a few minutes, he has a clinic appt. today.

I'll get back to you on the genotyping. Gotta run!!

dr visit

Well,

I didn't mention the CF suspicion to the allergist.

I just didn't fee like it. I already know the issue is being addressed by

a very good dr in Cleveland.

Did I mention that I am pregnant? 9 weeks. I have been so sick and barely

able to even sit up. I just didn't have the strength to discuss much of

anything. I just needed to alleviate Caden's symptoms. We go next month for

proper testing. Heck, if this allergist don't suspect CF in Caden, my

suggestions sure won't amount to much with him, hugh?

I mean, he is sitting there looking at his CT telling me about his polyp

and mucus in his sinus cavities. Telling me to do nasal washes and putting him

back on steroids and possibly 6 weeks of antibiotics! !

I did ask him what could be causing this, since he does not have

allergies. He said that was the million dollar question and it is called NON

allergic Rhinitis. In other words,,, He don't know and no one does.

We go back in 3 weeks to see if he is better and probably repeat the CT

to see if things have been eradicated. He said that if he couldn't keep him

controlled under steroids and antibiotics, that he would send him to an ENT to

sinus surgery.

I have been thinking about next years school term. He will have to start

Kindergarten in August. What on Earth will I do with him? Do you guys send your

kids to school on steroids? Caden is very hyper and eats like crazy on them.

It would be nice to think that things will be normal by then, but I don't

see it happening. I have told myself that year after.

Now, we also have the new baby to worry about.

We will be doing all kinds of new born screening with him/her. It includes

CF to all metabolic disorders. Results in about 3 days.

Well, just wanted to share,

Krystena s

Caden 4 yrs GAII/testing for CF