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Hi all! I have 2 questions regarding night feeds for Anna, our 3 year old: - When do you give enzymes, and if so how many? - What type of formula/liquid do you have at night? (Anna has Scandishake with a few extra protein/carb powders, but not sure what is the norm) Any answers welcome..!

Hi So we've been trying to give 1 x tube feed (gravity feed) to our 3 year old at night, but have to wake her up so she can take her enzymes, which is so traumatic for her. She gets SO upset. If anyone else is in a similar situation, please could you give me a little insight as to how you give...

Thanks for the help and advice...! We've got a very clued up dietitian and as far as I understand it she's on the best formula available here (South Africa), which we're boosting with extra carbs & protein powders. The thing that troubles me so much is that her intake has increased so much since...

Hi After much debate, our daughter had a g-tube placed end of March which was replaced with the Mic-Key button about a week ago. BUT, she's not yet gained any weight, in fact she's lost a few hundred grams, despite her total Scandishake intake having increased quite substantially. Her appetite...

My daughter is 3 and 9 months (DDF508) now and has, apart from her Creon, loads of Scandishake + weight gain supplements through her g-tube and the odd bit of food (when she's in the mood for eating), these things daily: 1 X Source CF chewable Extra Vit D 20ml Zinplex (Zinc/selenium supplement)...

Africa is a big place, so don't rule out the whole continent! Come to South Africa - healthcare is definitely not "3rd world" (1st heart transplant in the world took place in Cape Town, where we live, for example...). In fact, come to Cape Town... fresh sea air, mountains... it's really very...

Hi Kapil, I haven't read all the responses above, so hopefully I'm not repeating what anyone else has said! I come from South Africa. We have clinics here, but there are certain 'norms' that are different to in America, simply due to the availability of certain things. Physiotherapy vests are...

I agree with Anomie on this one. Though I would love a second child, it wouldn't be fair to knowingly bring a child with CF into the world. Anna is still young, I do not yet have first-hand experience or what she might have to endure in the future, but I know enough to know that it could be...

I agree with Anomie on this one. Though I would love a second child, it wouldn't be fair to knowingly bring a child with CF into the world. Anna is still young, I do not yet have first-hand experience or what she might have to endure in the future, but I know enough to know that it could be...

Anna started losing weight at around 5 months, despite eating and drinking. She became very lethargic and irritable. Over the course of a couple of weeks, she went down to 3.8kg, and pretty much gave up eating. Her paediatrician (who had typically been taking his well-deserved christmas holiday...

Anna started losing weight at around 5 months, despite eating and drinking. She became very lethargic and irritable. Over the course of a couple of weeks, she went down to 3.8kg, and pretty much gave up eating. Her paediatrician (who had typically been taking his well-deserved christmas holiday...

So glad I noticed this post, since it's been taking up so much of my brain space recently! Anna's starting at a Montessori pre-school (kindergarten) next year - she'll be 3 and a half when she starts. Classes are fairly small, and from what we see, the school looks very clean...! Following on...

So glad I noticed this post, since it's been taking up so much of my brain space recently! Anna's starting at a Montessori pre-school (kindergarten) next year - she'll be 3 and a half when she starts. Classes are fairly small, and from what we see, the school looks very clean...! Following on...

Don't forget: Wish You Were Here...

Don't forget: Wish You Were Here...

Hi We're in South Africa, so hopefully this calculation is not too challenging, considering we're metric, but: Anna takes Creon 10000. She is currently 11kg. So she is allowed 11 in total per day. She's thus on 'the maximum', which is quite high compared to other 2 year olds at the clinic. We've...

Hi We're in South Africa, so hopefully this calculation is not too challenging, considering we're metric, but: Anna takes Creon 10000. She is currently 11kg. So she is allowed 11 in total per day. She's thus on 'the maximum', which is quite high compared to other 2 year olds at the clinic. We've...

my thoughts are with you. i am so, so sorry for your loss...

my thoughts are with you. i am so, so sorry for your loss...

... and for that clever retort she deserves to go to Disneyland! <img src="i/expressions/face-icon-small-smile.gif" border="0">