Re: dr visit/

[Guest guest]

,

Thanks for your story.

Sorry that it took so long to dx your son but it does give me some hope that in

the end we will have some answers. Naturally, I hope he does not have Cystic

Fibrosis but I would rather know, that not know.

Caden's nose is really full too.

The dr pulled away from his nose in a flash and said, " Oh, yea, it's really

full. "

How is your son now? Any lung problems or digestive problems?

His first sweat test was negative? What was his last one?

Has he had the genotyping?

Sorry all of the ?'s.

Thanks for sharing your story. It always helps to know that I am NOT freaking

out for no reason.

Other people have been in the same situation and it feels like you are sooo

alone.

Well, got to run. but thanks once more for sharing,

Krystena

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