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Although it's always been advised to go to a CFF accredited facility to get a sweat test for consistency and accuracy, any medical clinic can do one... So you could see if your doctor could do it. I guess I'd get ahold of my chart/records and see exactly what your doctor requested and what the...

Turns out they were supposed to run a regular IGE test or panel and not the Anti-IGE test. So next time he has bloodwork, it's on order.

DS cultured it about 9 years ago and the doctor really wasn't concerned as it was shown as rare, I don't recall what it was sensitive to, but doctor didn't change any of his meds --- was already on Tobi due to a culture of pseudo a few years before, but no longer cultured and azithromycin. It...

Congrats! glad to hear you're doing so well.

DS' doctor retired and we're now attending a new CF Clinic and a few new labs were ordered. Got most of them figured out --- an additional liver test, the usual vitamin levels, glucose, immunoglobulin... However, on test that I couldn't find any info on, was Anti-IgE, which was shown just as...

I seem to recall discussion years ago that there were studies done with pulmozyme and whether it was appropriate to take it at night or morning, and during/before CPT/Vest or after and there wasn't a wrong answer. I think the study talked about how if done at night after airway clearance, then...

DS had issues when he was younger with constipation/DIOS. He'd still stool, but when he got plugged up, it'd be very loose and his tummy would get very distended, his eating would decrease and sometimes he'd vomit. So we'd have to use a laxative --- cherry milk of magnesia worked for us. His...

We started off with Pari and then a relative gave us a 10 year old Devilbiss Pulmoaide for use as a spare. Realized how poorly the Pari had been performing -- as a newbie didn't realize Tobi shouldn't take 25-30 minutes. So I purchased a devilbiss and it worked great for a couple years, but...

DS' symptoms were mainly digestive and sinus. He cultured H. Flu and would get a sinus and/or ear infection. He cultured pseudo usually with not symptoms, though a couple times he did get a junky cough. Nowdays he usually cultures steno. maltophilia and his symptom was an odd, throat clearing...

DS was diagnosed as a newborn before newborn screening due to meconium ileus. Genetic testing for most common mutations showed CF. He had a sweat test at 3 weeks and it was a normal 32; however, it's my understanding teeny tiny babies are difficult to test. He hasn't been tested since, though...

DS had a sweat test of 32 at 3 weeks. He was already in the hospital due to a bowel obstruction caused by meconium ileus, with suspected cf. Basically his issues were digestive -- very loose stools, reflux and he had very thick sinus mucus. This was before newborn screening. He did have a...

Yeah, I always thought bath toys were kinda gross and had potential to grow things. We always used things that were easy to clean or toss -- cups, plastic spoons, combs, solid plastic figures, bubbles to blow...

I'm curious as well about those who've gone from Orkambi to Symdeko. DS has done fine with Orkambi -- gained weight and grown taller, his sinuses seem clearer (breathes quieter while sleeping) and for the most part, cultures have come back with normal flora. He was asked by his doctor if he...

DS has been on atrovent and albuterol nebs since he was an infant -- a week or so old. It's my understanding atrovent is longer lasting, whereas, albuterol is a more immediate, short term bronchodilator.

When DS was an infant, he had an inconclusive genetic blood test due to an incomplete blood sample. Fortunately, the local hospital had also drawn blood for the test prior to transferring him to a children's hospital, so they had results from that and didn't have to retest. It's my...

I do know of a child in our area who had a lung transplant in Texas --- Houston?. Don't know details other than that was the only transplant hospital that would take him. His mom and brother had to relocate there from the Midwest while waiting.

If ds doesn't take enough enzymes (creon) his stools are not well formed, break apart easily when I flush and leave a residue at the waterline, float or "stinkers not sinkers". He also would stool frequently, not just once or twice a day, but every few hours if not more. Sometimes his stools...

The reason I asked about stools and the sweat test numbers is because maybe you could ask if they could do a fecal fat test to test for pancreatic insufficiency. DS had a sweat test at 3 weeks and it was 32; however, he was a very teeny tiny baby and sweat tests at that age if low, weren't...

When you say sweat test was negative, what were the numbers, how old was he at the time and was it done at a cf facility? What do his stools look like? Are they normal, greasy, floating, frequent, bulky...? Was he tested via newborn screening for cf?

I seem to recall with Orkambi, it was approved the beginning of July. I'd assumed we could just have our doctor send in a prescription and we'd be covered. Nope. We had to sign up with Vertex GPS because it wasn't even on BCBS' radar and Vertex only allowed 9 specific pharmacies to distribute...