Recent content by pipersmom

While I love the thought of fewer exacerbations, I'm not sure the weight gain is from the actual drug. Aren't people taking it required to take it with a meal or snack with a high amount of fat? I was attributing the weight gain more to that, they're probably adding a significant increase of...

We don't use CHOP, but...what I would recommend is getting in touch with them and just going for a consult and feel things out. I've heard of a lot of CF adults doing that, and most clinics seem to be open to it, from what I've seen. Just think of it as a second opinion. I can tell you CHOP is a...

Check your emails! I received my cards yesterday, ya'll shouldn't be far behind!

Erin, I signed up and referenced you. Have you gotten your first gift card yet? We could get a chain going if everyone referenced the person above them. -Amanda (mandaishere@hotmaildotcom)

Under a 504 plan you can modify the school day pretty much any way you want. I would put it as "absences caused by illness verified by a Dr's note will be automatically excused without penalty", and (example)" "Name" will have a modified start time of 8:30 am". If they question or try to refuse...

1. Do you have CF? My 12 yr old daughter has CF. - When were you diagnosed? At 4 months old. 2. Are you on inhaled meds? Yes. - If yes, which ones? Duoneb, pulmozyme, hypertonic saline, budesonide, alternates colistin and gentamycin. 3. How long does it take to do full treatment? About an hr. 4...

We've never had a problem with her port getting infected, and to be honest, I'm active on several CF boards, and have never seen anyone mention an infection. It may be because it seems like it would be harder for a port to get infected...when it's in use, the dressing is covering it at all times...

Jshet, I would do it. My daughter has Asperger's and GAD as well. She was receiving IVs often enough that they couldn't place a PICC anymore when she was around 7 yrs old. The port has reduced her anxiety significantly because she always knows what to expect with it. We still get a few tears...

It's estimated that now around 40% of the general population cultures MRSA, hand hygiene in general goes a long way.

We swim in pools and do a lot of other "normal" activities, but she isn't allowed around a lot of smoke (down to me not burning candles in the house) because of the amount of lung issues/damage she has. There are occasionally exceptions, but as a rule we don't do lake swimming either. Piper was...

I'm a one and done Mom also. Before Piper was diagnosed, I always thought I would have more than one child, but when she was diagnosed that changed our mind. There was not mandatory newborn screening in our state when she was born. She was diagnosed because she had pneumonia and a partially...

Kaethe, unfortunately I'm very aware of what it's like to spend time with a toddler..5 yo, 6 yo, (keep going up to 11!) in the hospital..lol. There are lots of posts here about things to take to the hospital. Our constants have been comfy clothes (she never wears hospital gowns..usually tees and...

Piper(10) goes on IVs anywhere from 4-6 times a year. She got her first port when she was about 6. She has not been inpatient at all in the past 18 months, we've done everything at home. Her Dr's view is that she's more likely to pick up new bugs in the hospital, also because I do all her IV...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AugieDoggie</b></i> My daughter has recently been diagnosed a 2nd time with MRSA. Reading your post Piper's mom, you stated "red man X 10". Could I please ask if that was a reaction or what you're referring to? May be a silly...

Just a quick question- does she take an antacid daily? Piper takes prilosec, partly because CFers are more likely to have heartburn in general, but also because it helps her enzymes work more effectively. Def something to check on at clinic next time <img...