Hello,

Posting Danielle's 3 year GHS update. (For back history, see prior posts on stories board.) Dani is 13 1/2 and continues to do well on GSH. We follow Dr. Bishop's protocol of 4 doses per day with at least one being inhaled.

She just went away for 3 days with school. This is the first time being away other than a sleep-over at a friend's nearby. She did all oral doses and never saw the facility nurse for anything. She took care of herself and we've now made it past a major milestone.

It is 3 years 3 months since her last IV and respiratory infection. It's about 2 years 9 months since discontinuing CPT and all traditional CF meds except enzymes.

Her enzymes remain at the 1/2 reduced dose of 2 creon 10 with meals and 1 creon 10 with snack. Her weight has crept to 102 lbs, 43% and height has increased to 59 3/4" which is 13%. This was a kid who usually hovered around 10% weight and 7-10% height. We found that with the reduced enzymes the weight went up and there were less stomach problems. About 5 months ago we added daily probiotics, we were never dilligent with this, usually only took when on an antibiotic but would discontinue when completed the tx. However, taking this supplement daily has made a major improvement in Danielle's life. She has a regular (Sorry Dan, I gotta go here) poop every morning a few minutes after she wakes up--she's in the bathroom and out in minutes. With some days another later on during the day. NO STOMACH PROBLEMS IN 5 MONTHS. She takes Prevacid for GERD.

Last summer she was dx with osteoporosis. She'd never been referred for a bone scan to check for this. We were advised that this was a somewhat new test that was/is being added to the routine yearly CF tests. I strongly urge that you push for this test if it's not being done at your Center. She was put on calcitriol and vitamin K. She will have a re-scan this summer.

She battles with sinus infections, does saline irrigations daily and NASONEX. Last sinus surgery, number 5, was July 2005. At her last visit to ENT 2 weeks ago, camera showed an infection but doing well and not in need of a surgery anytime soon. Polyp tissue is starting to grow again but this is a vast improvement of previous 4 years in which it seemed she was ready for surgery ever 4 months.

I'm trying not to go on forever---cause I could. GHS has truly changed my daughter's life. And on that note, Have a great day!