Becky Re: Good news on Rebekah and so so on 's clinic visit

August 24, 2000

So nice to see such good news on your kiddos!!!!! We have found the same

thing with boost plus and ensure plus, will drink all we will give

him, so hopefully he won't ever need a tube.

As far as your 's polyps go, you know my had sinus surgery for

polyps at age 2 and we couldn't believe the difference in him after that. He

really enjoyed smelling, it seems to me it should be a basic human right!

BUT, for what its worth, they did grow back, but the doc said maybe half of

the opacification on the sinus CT was polyps and half infection, so we did a

21 day tune up and that seemed to help (this was 15 months after sinus

surgery). Now, he is doing the " sniffing " thing again, which means the

sinuses are totally blocked again (good indicator for ) and his nose

never runs, too blocked to run. So, at his next clinic appt, I guess we get

to see if the doc wants to get the ENT to do sinus surgery again, or try

another tune-up. For , it seems to be such a quality of life issue

that we just can't leave it unaddressed. I bet your was kind of mad

that the doc dismissed his opinion that he wants to smell Bacon again.

Perhaps an ENT referral would help? I assume he is already on nasal

steroids? One thing they say is that, after sinus surgery, that nasal

steroids will at least delay the re-growth of the polyps. Also, our CF doc

said that controlling the infection inthe sinus will also delay added growth

of the polyps (which is why he does Tobra nose spray). I hope you find a

solution that works for JOSHUA (as opposed to working for the doc.....)

Thanks for your comments on ph.....you are right, now we can get him to

grow!!!! The CF doc charted him today, and had the comment, whoa, I didn't

realize he was so far below the growth chart. He said he thinks we can get

the weight up, but his total growth has been effected, and that it will take

longer to get the height up. He also told us to use up to 2 creon 10's with

meals. We also re-started the prilosec. So, he is gonna grow, I just know

it. I can't wait for him to get weighed and measured at his next appt (in a

month)....hey, thats a first, we can now look forward to weigh-ins......

Thanks again, and good luck with the sinus stuff

Jen

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