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  1. That's amazing! Really heartening :)

    That's amazing! Really heartening :)
  2. [QUOTE=Ratatosk;1087706] I also wanted to ask...

    [QUOTE=Ratatosk;1087706]

    I also wanted to ask you how your LO was doing on the Vertex drugs? We may be able to access those when we move to the USA in a few months.
  3. Hi Ratatosk, thanks for your reply. Yes I think...

    Hi Ratatosk, thanks for your reply. Yes I think the H.flu is causing her more trouble than we originally thought. She has been put on cefapime and tobi to try and clear it. At my request her iron...
  4. Thank you so much for all of that excellent...

    Thank you so much for all of that excellent information! I'm very grateful.

    Lance2020x I would love to be in touch with you and your wife, I will send you a DM :)
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    Hi Energygal, I only just saw your reply,...

    Hi Energygal,

    I only just saw your reply, thanks for that :) Can I ask what your mutations are? How long did it take before you could reintroduce high-histamine foods? Are you still taking...
  6. Moving to Nashville (from New Zealand)- reaching out for contacts and advice

    Hi,

    We are moving to Nashville, TN, all the way from little old New Zealand!

    My husband is originally from New York and our daughter (DDF508)is a dual citizen. The healthcare system in New...
  7. Sudden unexplained increase in secretions, reduced general wellbeing and mood in 7 yo

    I thought I would put our current situation to the forums, because I'm not getting clear answers from the doctors, and I'm worried.

    Our 7 year old (DDF508) has recently (for the last 3 months)...
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    Hi, personally I wouldn't be too concerned about...

    Hi, personally I wouldn't be too concerned about this. You will want to make sure the teacher and parents of the other child are vigilant about keeping the child home if they are presenting with a...
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    Thanks Jaimers, yes we joined the group last year...

    Thanks Jaimers, yes we joined the group last year and started giving Indrepta C to our daughter (6 yrs) in January. We definitely noticed positive changes in ability to cough up mucus and better...
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    That is fascinating fel! I've been looking into...

    That is fascinating fel! I've been looking into steroid's effects and what circumstances allow them to be more rapidly or extensively absorbed, and what effect that can have. This comes after my...
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    If his poop is floating it usually means there is...

    If his poop is floating it usually means there is too much fat in it and he may well simply need more enzymes. In addition: plenty of water, fruits and vegetables and tummy massages can help as well.
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    Experiences with Indrepta and TauriNAC

    Hi everyone, please can you share your experiences with Indrepta and TauriNAC (positive or negative). If you could include the type of Indrepta (A, B, or C) and your mutation, that would be helpful....
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    Oh my gosh I think I cried reading every single...

    Oh my gosh I think I cried reading every single one of the posts on this thread! I agree with everyone else here. You are in a major transition place at the moment... you have the 'unknown' hanging...
  14. Gammaw and LittleLab, you are such excellent...

    Gammaw and LittleLab, you are such excellent sources of information! Thank you from all of us.

    LittleLab you bring up an interesting point regarding sugar types and sweeteners. It has been shown...
  15. He "fessed up"! There's a lot to be said for...

    He "fessed up"! There's a lot to be said for that. People only cheat if they are not inspired, I wonder if there is a way to make spelling more fun or memorable? Or to combine it with something he's...
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    Yes we used to sprinkle salt on the apple or pear...

    Yes we used to sprinkle salt on the apple or pear puree too, it worked fine. Our daughter used to throw up the saline solution they gave us, and fair enough too... it tasted like seawater!
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    Hi Carol, How old is Connor? We have had...

    Hi Carol,

    How old is Connor? We have had issues with our daughter being allergic to some antibiotics and meds, and it is very frustrating.

    Some things I have noticed: if there is also...
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    I agree with jaimers. I have been to see a...

    I agree with jaimers. I have been to see a psychotherapist on a handful of occasions over the last 10 years, which has really helped to get past something I'm stuck on at the time. Definitely look...
  19. Hi MyBabyCeline, welcome to the forum! Our...

    Hi MyBabyCeline, welcome to the forum!

    Our 3.5 year old has cultured Haemophilus twice and both times recovered on oral antibiotics. It is possible that they wanted to start your daughter on IV's...
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    By the way, thank you Aboveallislove for the...

    By the way, thank you Aboveallislove for the link, there were quite a few responses there. I definitely sense a pattern emerging with the different approaches to the subject :-)
  21. Thanks for you replies. We're in New Zealand...

    Thanks for you replies. We're in New Zealand which uses 240 volts, thus the difficulty finding something that will go to 110. We will buy something and ship it to the place we are staying as you...
  22. Which air compressor do you use in the United States? Travelling there- need help!

    We are coming to the United States (NY) for a couple of months and haven't been able to find an adaptor or transformer for our daughter's PARIBOY SX, so are wondering if we need to buy something over...
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    Thank you for all your stories. I know deeply...

    Thank you for all your stories. I know deeply that this can be an emotional subject. In regards to people who have got a diagnosis while pregnant- if that happened to us I could never terminate, I...
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    Thanks Autumn, looks like not too many people...

    Thanks Autumn, looks like not too many people have shared their experiences yet (even on the other threads), so it will be interesting to see if anyone else comes out of the woodwork! :)
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    Having another baby- how was your journey?

    So I'm interested to know what people's experiences are with deciding to have more children after you've had one diagnosed with CF. I always thought we'd try naturally knowing that there was a...
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