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Was the sweat test done at an accredited cf facility? There are plenty of people who've passed the sweat test with flying colors. My son is one of those with a normal 32 for a result, albeit he was a teeny tiny baby at the time and babies don't really sweat that much. Also, the only...

DS has been on it for 3 weeks. He had some initial GI issues -- really loose stools. A bit of a stuffy nose. I don't believe he is as salty. He's had a really good appetite, energy level is fine. He continues to gain weight and has grown an inch in the past month. could just be regular...

Glad to hear he's feeling better and you're switching clinics. With our old clinic, I would get so stressed out prior to and during appointments. Was such a relief when we opted to switch our primary care to our current clinic. BTW, I'm still waiting to hear back from the old one 10 years ago...

To reiterate what emason stated ds was born with a bowel obstruction and while recovering in the NICU from the surgery, a sweat test was conducted at 3 weeks and it was normal (32); however, a local doctor suspecting cf had sent in blood tests which at 7 days showed two copies of delta f508...

I would ask your doctor to do a repeat sweat test being he's so salty. If your doctor refuses, ask him to put that in writing in your son's chart then walk, if not run to a new doctor. Something is going on with your child, you'd like to figure it out, if it's not cf, then what is it. DS at...

Ds culture h flu as a baby and he'd usually get a sinus or ear infection and be treated with augmentin. The worry was it'd get in his lungs. When he was 2 1/2 he was put on azithromycin and doctor said as a plus, it would get rid of the h flu. It did.

Correct me if I'm wrong, but I don't believe Arizona does lung transplants any more, so if that's something that could occur in the future... There have been a few people on this site who live outside of Phoenix -- Tucson?, who've complained about the quality of care or lack there of, so I'd...

The questionnaire the doctor submitted to Vertex GPS only asked is if he's DDf508 and if the treatment is appropriate. There weren't any additional questions regarding FEV1, though the doctor did mention DS' lower pfts -- he still hasn't mastered them yet --- the last time that it would...

DS has been crankier; however, I attribute it to him having a very busy last couple of weeks being outside -- yesterday he went on a 20+ mile bike ride with his daycare, today he's at a baseball game, he's gone camping, swimming, and while he usually spends most of his days in the summer...

It did get to the point where I started asking for names and direct extension numbers "In case I lose you....what number can I reach you at". What really annoyed me was the delay in receiving the medication. I would ask if there's way you can order online, so you can track the progress.

We've had a couple hectic weeks, where his schedule has been off -- not his normal routine where he spend all day at daycare playing hard. So we weren't sure if he was sweating out at much salt/salt crystals. He doesn't seem as salty -- when I kiss his forehead my lips aren't stinging from the...

I ended up going thru Vertex GPS and they contacted our insurance who determined which pharmacy we were to use. Our prescription drug insurance is thru Prime Therapeutics, which isn't one listed as an approved distributor, so our insurance chose Walgreens Specialty Pharmacy. I haven't had to...

I had similar issues with them years ago when DS was on adeks and we could only get them from CF Services and then again when we were eligible for the tobi program. With the vitamins, I finally just ordered online and it was much easier not dealing with a human over the phone. Was darn...

Rabia72, a friend of mine's daughter who has a different mutation and is on Kalydeco, said something similar happened. Her daughter would get so overheated, even just putting on a winter coat at the end of the school day and briefly waiting for her ride home was horrible. She'd just get so...

With school starting for some in the next few weeks, might be a good idea to post some helpful hints. Here's a link that I found especially helpful. Our own Lisa Greene's site: http://www.happyheartfamilies.com/SchoolIssues.html Each year I get a packet of info together for the school as...

When the pharmacist reviewed some potential initial side effects I was thinking for the most part they sounded like typical cf symptoms -- may have nausea or stomach upset, cold or respiratory symptoms, looser stools... I've been trying to figure if the loose stools are typical malabsorption or...

DS age 12 has been on it for about 6 days. His main symptoms have always been digestive and sinus related as well. Never really coughs, usually doesn't bring anything up. He seems to be doing more throat/nose clearing, but he also started up his month of tobi a couple days before. His...

While I'm thankful that we finally received ds' Orkambi today, I'm especially thankful that he FINALLY learned how to ride a bike and earlier this summer mastered swimming underwater. With all the extra stuff (treatments, etc) it's hard to find the time. Last night he said he wanted to ride...

When ds was still on liquid meds -- some 3-4 times a day, I'd measure up oral syringes for the day the night before and keep them in a baggy in the fridge. Kept me from forgetting, and was a little better organized. Because everything was flippin' pink (Keflex, actigall, azithromycin, septra)...

We already go over all his meds with him and what they're for and he puts on his vest and turns it on along with his nebulizer. He's a little shaky on putting meds in the med cups and remembering how many enzymes to take. In the coming days when things settle down at home in terms of...