STATS: Personal info: Extremely active girl who has her red belt in karate, attends classes 3 x's per week and as usual for summer enjoys swimming in the pool and going to the beach. She plays the violin and has been accepted into the honors program classes for eighth grade. School starts in 3 weeks and cheerleading will be added to her activities. (Thanks for letting me be a bragging mom for a minute.) UPDATE: Two months ago we swithed CF centers after a positive meeting with the department head and nurse. We explained using GSH and the non-use of traditional CF meds. I'd sent them a copy of Dani's chart for review prior to the meeting. A mutual understanding was reached: since they are an official center they cannot advise on our use of GSH but will consider us a "homeopathic family". They agree that her treatment should be driven by results. Both parties agree to have open dialogue. With us, her parents, being the ultimate decision makers. One of the reasons that we liked this center was that the pulmo doc was not the be all and end all with regard to treatment. She works closely with every related specialty. Dani was sent out to consults with ENT, GI, Allergy, Endocrinology so everyone could be familiar with her case. It was refreshing to get a different spin on things after being at the same center for 10 years. For example: Dani was scheduled for a sinus surgery 2/05 with her prior ENT and at pre-op had a virus, surgery was cancelled. "No surgery for 2 weeks post virus"...but a cancellation gets you a 4 month wait on the surgery calendar. Since we were contemplating switching centers, we did not reschedule. ANYWAY-----The new ENT saw her early June and had her on the schedule for surgery 2 weeks later. They have an understanding with the CF team that it's soooo important to keep the sinuses clear so the sinuses don't affect the lungs. (This sounded good to us.) However, the ENT has developed a protocol of her own. She likes a good 3-5 days on IV anti's and pre-op steriods to get things ready for surgery and another 1 1/2 weeks on IV anti's post surgery and a couple post-op days on steriods all to be followed up with an out/pat hosp 2nd surgery clean out/debridement and in Dani's case removal of her adenoids. With the IV to be removed after the 2nd surgery in recovery in the hosp. After much discussion back and forth we understood the ENT's point (she swears Dani will not need another for a year) and with a kid who after every prior sinus surgery was in need of another after 3-4 months post op...we agreed to give her protocol a shot. It was a really hard sell to Dani but with a bribe to her favorite amusement park with friends as soon as she was cleared...she agreed. So far every post op visit has been fantastic with all results far surpassing every prior surgery. Time will tell. She had a great time at the park!!! As for those beautiful lungs of hers...they are fantastic. She's been blowing 120% FEV 1 consistently on the little office PFT machines (including prior to the IV anti's and sinus surgery) and even last week when she went for the full PFT series she was at 120% FEV 1. They just can't believe how well she is doing. Again--no albuterol, TOBI, Coly or Pulmozyme. This is our disclaimer: Neither myself nor my husband is in the medical field. We added GSH to our daughter's treatment regime on our own. No one has ever told us to take our daughter off of any meds. We continue to strickly follow Dr. Bishop's protocol. Any questions, feel free to email me at GSH4CF@MSN.com Have a happy and healthy day!
on August 15, 2005, 11:54 am
Dani will be 13 in two weeks and has been on both oral (HMP Ultrathione) and inhalled GSH (Theranaturals GSH Plus) for 2 yrs & 4 months. She has Delta F508 both sides. She's got respiratory, digestive and sinus symptoms. She cultures psud and staph regularly in her lungs and sinuses. She's been ABPA free since 2002. Her Creon 10 dose has been reduced from 4 pills with meals to 2 and from 2 pills with snacks to 1. She has GERD and is on Prevacid. She irrigates her sinuses daily with saline and uses Nasonex. She is 57 3/4" tall and weighs 89 lbs (this translates on the charts as 25% for weight and 7th% for height with a BMI of 19.3 and puts her at the 58th percentile BMI).
Danielle continues to have amazingly good health. Has not used any "CF" drugs other than enzymes for the past 2 years. Normal illnesses continue to come and go with ease.
A trip to the GI revealed a few tests that Dani never had done before...they wanted a Pancreatic Elastase (PE1) and a 72 hour fecal fat. The PE1 showed that Dani's results were normal. This was a relief since we always think the worst even when we had been seeing good stools, increased weight gain and less belly probs with the reduced enzymes. The 72 hour test is still pending...I need to find a 72 hour span when she'll be home. She was also referred for a Bone Density test which she'd never had before and this I suggest to everyone!!!!! She has OSTEOPOROSIS and will start meds for same. The GI assures that this will be completely reversed in several months.
Colleen
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