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Does your daughter take enymes? How many and what is her digestion like,

how many times does she have bowel motion per day

mum toLiam 14 monthswcf

Re: Severity of the disease

> Cheryl,

>

> I looked at a few older studies that did suggest that the kids that

> cultured Pa early didn't do as well - BUT - I now have a better

> understanding of why it seemed to look like more of a correlation. I

> think that it's just because Pa is one of the main trouble makers for

> CF'rs and they didn't have a lot of the knowledge or tools that we

> have now. Basically the simple fact that they weren't able to

> eradicate intermittent Pa or manage mucoid Pa as well as they do now

> made these subjects suffer problems sooner than those who didn't

> culture it as early. Some say it is the difference in the mucous,

> that some is more hospitable to it than others while others say

> getting it is just the luck of the draw. I have heard from quite a

> few that cultured it early but weren't colonized with the mucoid

> variant until much later. I talked a long time to a CF doctor who is

> in my family about this subject and he was very reassuring about it.

> He said that even if our Abby did culture some mucoid Pa that it

> wasn't such a huge deal these days.

>

> Abby cultured Pa from a bronch when she was diagnosed at 5 mos. old,

> was treated aggressively with IV tobra, timentin and Tobi for 2

> weeks. Her throat culture was clear at discharge. She had one clear

> culture 3 mos. later then after 3 more mos. she cultured it again.

> We did 2 weeks Tobi and Cipro. At the end of that course she

> cultured it again. They then performed a bronch a few days later

> which revealed she had no Pa in her lungs and they were very clear

> with hardly any inflammation. A small amount of Pa was obviously in

> her upper airways causing the positive culture. We just had a

> culture done Friday and are awaiting the results. She is completely

> asymptomatic now - no cough, wheeze and in 97th percentile in wt.

> 90th in ht.

>

> If she cultures it this time I may try to get her doctor to put her

> on an azithromycin regimen. Maybe go for a full blown IV course.

> I'm not sure. There are differing schools of thought on this. They

> do know that it comes and goes at first normally then comes to stay.

> In Denmark they have demonstrated that they can eradicate

> intermittent non-mucoid Pa and can delay mucoid Pa by treating very

> aggressively with antibiotics - IV and inhaled. Ask your doc about

> the Danish model.

>

> This subject is one that has horrified us at first but have grown

> much more optimistic. Your post looks like one of mine verbatim a

> few months ago. This disease is in it's " short-rows " , which is an

> old farming expression meaning it is about finished. In the

> meantime, with good care, our kids are going to kick butt - Pa or no

> Pa. Don't fear it.

>

> Joe

> (Dad to 3 girls: Kelsi,7; Chloe 2 3/4 & Abby,15mos.w/cf and fat legs.

>

>

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

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