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My 6 year old has the delta f508/delta i507 combo. Her sweat test results were 138/143. She certainly presents as classic cf. This scenario with you wee person seems very unusual.

Hi libby are you on Facebook? Because there is a great support group with heaps of mums from the UK, It's called CF Parents Group. It's only for parents, and has a really lovely group of mums whom are so supportive, and knowledgeable. So look it up. CF Parents Group. All the best :)

It's in the cftr modulation section :)

It's there - my post is the last one, they think many people have i507 and that it's been mis identified as f508 :). It also is indicated in French origins.

I replied on you other thread too :) my daughter has the same mutations.

My daughter has i507/f508 as well. I read somewhere that they think many double delta's may have been misdiagnosed, and in fact carry one copy of the i507 gene.

Hi :) my daughter failed her GTT a couple of times - they did it a few months apart, to ensure it wasn't affected by infection. Both times she came back around the 200 mark (we are in nz and I have had to use an online converter). So we started monitoring her sugars at home pre-food and t2hrs...

Hi Helen, love to keep in contact :) all for supporting each other. Hang in there with the hypertonic, it is worth it in the end. I am on FB too, this winter seems to be particularly nasty. Keep building that rapport with your team, it's so much information, all the time with cf, such an...

Hi Helen we live in the Waikato, we always are prescribed pulmozyme during every hospital stay, it was my understanding all cf'ers were automatically put on it during hospital stays, regardless of age. I would push the point with your team. They can do it, pulmozyme is easy to access as an in...

We have had three power ports in two years. We do not like power ports. The hospital is going to stop using them as a result.

Wow, am I glad to see this thread. Jono, we are in NZ. My five year old daughter suffers terribly from "extreme complicated DIOS". She also had a regime of weekly Klean prep (golytely) 2 litres, 20ml n- acetylcisteine 4x daily, 1/2 sachet movicol 3 x daily. She also has insulin dependent...

Thank you. We are on large doses of daily medications, including N-acetylcistine, movicol, flagyl, she also has a MACE, which we use to flush her bowel directly on alternative days. Every second week she drinks two litres of golytely to attempt to manage the small bowel. I was really...

I hope you still check here! My daughter is 4 she had an ACE done earlier this year, to manage the DIOS. She was having to do oral golytely weekly before this. Can I touch base with you? It has helped tremendously.

Hi Steve, I maybe asking in the wrong place. I have a 4 yr old with cf, delta f508 & delta i507. We are in nz. My daughter has severe pancreatic issues, type I diabetes, and recurrent complex DIOS. She has this year had a MACE surgery in attempt to combat the DIOS. Is the answer in...

Hi, I was on the forum looking up DIOS, and came across this. DIOS, is a version of merconium ileus. It is where thick sticky mucus blocks the small bowel, and this is why frequently those affected with DIOS vomit undigested food. Constipation is a large bowel issue. DIOS quite often affects...

<img src="i/expressions/face-icon-small-happy.gif" border="0"> hey Laura - love the bracelets. Shipping to NZ? can you do it? I would get a few, just that i had a quick look at the list for states, and it only looked to be usa

<img src="i/expressions/face-icon-small-happy.gif" border="0"> hey Laura - love the bracelets. Shipping to NZ? can you do it? I would get a few, just that i had a quick look at the list for states, and it only looked to be usa

<img src="i/expressions/face-icon-small-happy.gif" border="0"> hey Laura - love the bracelets. Shipping to NZ? can you do it? I would get a few, just that i had a quick look at the list for states, and it only looked to be usa

My daughter Kaiya, now 3, cultured both of those last winter. The first one, seemed relatively easy to get rid of, 2 weeks oral antibugs. She grew Haemopholis pretty much all year, but they said that was more to do with her personally, rather than being a hiddeous bug to get rid of. Both of...

My daughter Kaiya, now 3, cultured both of those last winter. The first one, seemed relatively easy to get rid of, 2 weeks oral antibugs. She grew Haemopholis pretty much all year, but they said that was more to do with her personally, rather than being a hiddeous bug to get rid of. Both of...