Meagan has Pseudo

[Guest guest]

Hi,

Ugh, I'll just jump right in here. Meagan cultured for Pseudo and some

other bacteria I'd never heard of (something begining with 'C...'

pneumonae). I go in for instructions on how to do the Tobra tomorrow

morning. Our pulm. wanted Meagan on Tobi (which is what I also wanted-- and

felt VERY strongly about) but our HMO Formulary ( " Big Brother " ) rejected the

request becaue Tobi's " not cost effective. " (Hey, look at my 5-year-old--

you HMO administrators-- how can you say that you're going to cover

thousands of dollars worth of Viagra for impotent men, thousands of dollars

worth of Acutane for teens with Acne, and yet not one of the most promising

CF drugs out there for my beautiful, child, whose name should never be

included in a sentence that contains the words " not cost effective " ? I am

seriously HATING HMO's tonight!). So we're doing the IV Tobra by nebulizer.

Our pulm. said it was a battle she just couldn't win-- but she did get them

to authorize the Tobra without preservatives, even though we need to pick it

up at our Pulm clinic becasue our HMO doesn't have it. I was REALLY

stressed about the thought of M. inhaling toxic substances in the form of IV

drug preservatives.

I'm absolutely convinced that Meagan has had pseudo ever since the lethargy,

low-grade-fever (which never really went away) and chest pain last summer.

She hasn't been the same kid since then. When we went in on Friday our

pulm. said she didn't really know what was up with Meagan getting so

exhausted after exercise and needing 3-hour naps. At least now we know

what's up. M's doing the inhaled Tobra for 2 weeks (as well as oral Cipro,

which the HMO pharmacy only had in pill form, so we're crushing it in sugar

water and Meagan HATES it-- does anyone know how to get one of those

training-to-swallow-pills cups????). Then we'll wait 2 weeks and do another

culture, and then negotiate about what to do next. And I do mean negotiate,

because our pulm. was sounding much less aggressive about treating pseudo

when I talked to her today then when I asked her about it in a hypothetical

sense last year, and I of course want to NAIL IT. Our pulm. says she won't

continue treatment if the pseudo doesn't show up in the sputum culture again

in a month, becasue M's PFT's are normal. I, on the other hand, am looking

at the whole child, and she can't even play at the park for an hour without

needing albuterol and then taking a 3-hour nap afterwards, she's had a

99-range temp more times than not since last summer, still has chest pain

during CPT which no-one can explain, viruses hit her really hard, and just

hasn't been the same kid she was a year ago. What I've read on both lists

indicates that 28 days on 28 days off Tobi is the standard of care for at

least some extended period of time after you culture pseudo, but our pulm

said she considers that a very aggressive approach (which is what I want to

be-- very aggressive) and is concerned about side effects and resistance.

More than ever, I'm going nuts that there's no consensus in the CF community

on treatment.

In the " when it rains it pours tradition, " (or is that " 's law? " no,

make that " Upoff's Law " ) Kailin had a major asthma episode tonight, and

might be home from school tomorrow, possibly heading towards more Prelone,

and I can't decide if it's pure allergy-related or also sinus infection).

The school nurse sent Kailin out to play in the pollen at recess even though

her peak flow reading was in the yellow zone, continuing a year of

non-compliance with her asthma plan. We also found out today that the

reason Kailin was having horrible stomach pain, and alternating bulky and

loose BM's for two weeks before spring break was that her teacher was giving

her crackers with milk in them (on the bright side, if there is one, at

least she's not developing an intolerance to soy after all). Needless to

say, I don't have a lot of confidence in this school being able to care for

Meagan next year.

On the subject of Kailin, she listened to my calls with our pulm. (1 about

the pseudo, and 2 of them over the formulary crap) and she got really

worried. I was pretty calm on the phone about the pseudo (lost it over the

formulary crap, though) but Kailin's good at reading between the lines and

could sense that something was up. She made me a card that said, " I'm so,

so, so, so, so sorry " and on the inside said, " so sorry you're stressed " ,

then " Roses are red, violets are blue, and I really, really love you " . Then

she made a card for Meagan. I wondered why she was asking Ken how to spell

" pseudo " , and then he showed me Meagan's card later. It had a big rainbow

on it and said, " Meagan I love you " and on the inside, " and I'm so sorry you

have pseudo. " At the same time Kailin's really worried about Meagan, she

was having a super hard time because all the talk/attention was intensely

focused on Meagan, and she felt sort of invisible. Ken told me that Kailin

was asking A LOT of questions about Meagan and CF and pseudo, and I'm afraid

she's starting to figure out more than we really want her to know at this

point (I'll have to talk with Ken more about that later and see what's up).

If there's anything humorous in this day, it's that I finally caved in and

told Meagan she can grow her hair long. She's been telling me she wants

really long hair for ages. I've been talking her out of it because she has

really thick hair which would be a lot of work to care for long (she hates

having her hair washed or brushed), and because she still likes to twirl her

hair while she's eating (Ken, is that mashed potato in M's hair?). Tonight I

guess the pseudo thing had me feeling a bit emotional, and I told her that

if long hair will make her happy, go for it. (She was totally blissed out).

Gosh, I'm getting soft in my old age.... Now if she cultures any weird

stuff as a teenager, she'd better darn-well not ask me if she can get a

tatoo or have her nose pierced the day I get the culture results. (And I'm

still holding firm on the fact that she IS NOT getting her ears pierced

until she's 12, although she begs for earings on a weekly basis to see if

I'll change my mind).

bye,

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