(Dr O's new book), Torsten, Jennie, Lori D.

[Guest guest]

Hi,

WOO-HOO! We've got a new modem, and I've once again got the internet at my

doorstep. Major stress today while we tried to figure out just what got

fried during an electrical surge from a nearby lightning strike the other

day. Turns out only the modem and the telephone we had hooked up to the

same line as the computer were destroyed. Ms. Computer is just fine :-)

It's weird, because the power surge just tripped one of the circuits in the

house-- we were lucky we didn't lose anything but the modem and one phone.

NANCY, sounds like you've had a time of it. Take it easy on yourself and

give it a good, long time before you invite your friend and her child over

again. As for the braces-- YOWIE! Multiply that by Kailin AND Meagan, and

I'm ready to weep. I hope we get sort of a regional discount here in the

Midwest, LOL. I bet you're hoping really hard that 's teeth come in

nice and straight. As for your question about and the continuing

pseudomonas, I read Orenstein & Stern's & ?'s new book today, and they

recommend treating pseudomanas for 6 weeks with Colisten and Cipro on the

first culture, and then if there are subsequent positive cultures within the

next 6 months, they say that 3 months of treatment with Collisten and Cipro

is called for, and that alternatively, a course of IV's, or treatment with

aerosolized Tobramycin are suitable courses of action. So, if you're

wondering about IV's, they do list that as one of the options. What you've

been doing, continued TOBI cycles, is also listed as one of the options.

But of course if that's not working, I guess you could always ask to try

something different (either the Collisten and Cipro, or the IV's). Good luck.

While on the topic, Orenstein's book (CF, Medical Care) calls for doing

cultures every 6-12 weeks for kids who are not yet colonized with PA so that

treatment can be started immediately upon the first culture, and because

kids who aren't yet colonized may have subtler symptoms upon initial culure

for PA-- they say the healthier kids actually need to go to clinic and be

cultured MORE frequently, so that early signs of PA aren't missed. I'm

bringing my copy of the book to our next clinic visit when Ken and I plan to

ask our new pulm to culture Meagan every 3 months instead of every 6 months.

There just isn't any good reason NOT to culture more frequently. The book

continues that once people are colonized with PA, they should be cultured

every 6 months AND whenever respiratory symptoms worsen. The book's much

more helpful on the specifics of treatment than the " CF for Patient and

Family " book, and I'd recommned it. It takes a more aggressive tone

concerning treatment of PA than the earlier book. It's very clear in

supporting early treatment of PA, upon the first culure, and then on

subsequent cultures, and says it is sometimes possible to wipe out

Pseudomonas with prompt treatment following early cultures.

The book also deviates from Dr. O's other book in stating that there is a

significant risk of transmitting bacteria from one person with CF to

another, and cautioning families to consider this, and noting that clinics

are starting to separate patients out by which bacteria they culture. In

terms of issues of personal interest to our family, it has a helpful section

on CF arthritis (ueful to us since we're dealing with M's joint pain), and

it does a good job explaining the possible causes of different kinds of

chest pain (my best guess is that Meagan's is muscular/skeletal from the

strain of coughing and breathing harder when she's having respiratory

symptoms, since our pulm. ruled out other more serious causes in the past).

And it acknowledges the 2% of people with CF who are pancreatic sufficient

with a negative or borderline sweat test, talks about the Nasal Potential

Difference test, and lists the most common reasons for failure to diagnose

CF (pancreatic sufficiency and looking " too healthy " are right at the top).

It even dedicates a couple of paragraphs to the oddity of R117H (7T). I wish

I had this book LAST YEAR, when we were going through diagnsotic hell, or

even 4 months ago, before Meagan got Pseudo for the first time. Oh well,

better late than never....

Oh! On the sinus issue, the book says that they've found that topical

antibiotic sprays, especially Tobra, sprayed into the sinuses, and Tobra

catheter rinses into the sinuses, are more effective than sinus surgery

alone (I think it might even read " more effective than sinus surgery " but

I'd have to re-read that section to see if I got that right). Our ENT had

never heard of using Bactroban nasal spray, and doesn't prescribe Tobra as a

nasal spray, and she doesn't think the Tobra rinses are any more helpful

than the saline sinus irrigation-- frustrating! I've wanted to do a nasal

antibiotic spray for M. for some time, and I've brought it up to the ENT

twice (because the oral antibiotics don't adequately control her sinus

infections). I'm going to ask our new pulm if any of his patients have used

either Tobra or Bactroban nasal spray to control frequent sinus infections

when we see him in August.

JENNIE, do you know what the exact doseage of the Tobra nasal spray your

kiddos use is? You know, how many micrograms per squirt, how many

squirts/times a day, etc? What the inert ingredients are, how they mix it?

I want to have all the info I can before we talk to our pulm next. Have

your guys ever used the Bactroban spray (or anyone else on the list? I know

uses it, but Sally's off the list???). I'm wondering what's in

Bactroban and how that's mixed, etc. Seems stupid to just keep pumping

Meagan full of systemic oral maintenance antibiotics which only partially

keep the sinus problems under control when we could be doing something more

effective topically.

TORSTEN, Meagan vomits Clarithromycin and Erythromycin in a rather violent

fashion, so they're not options. Really the only problems with the Zith are

the empty stomach restrictions, and that the liquid is only good for 10 days

(well, that and the dumb yeast). Otherwise she's tolerating it well, and it

has been keeping her healthier than the Augmentin.

LORI D. I'll ask our pharmacy (and the pulm clinic) about Zithromax options

for kids that don't have to be taken on an empty stomach to see if there's

anything new out there. The adult tablets can be taken with food, but they

come in 150 mg. doses, and M. just gets 100 mg's of the liquid. Some

brilliant peron needs to figure out that older kids can swallow pills, and

that parents (and kids) are driven mad by the empty stomach restrictions of

ceratin meds, and put out pediatric-dose Zith tablets....

bye,

, mom of Meagan 5 (cf, asthma) and Kailin 7 (asthma)