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Hi, It's such a shock to the system isn't it? I remember all too well how rough it felt in the early days. Just know that now you are on a road that will lead to a much healthier baby. It sounds like he may need nasal gastric feeding? Once he is getting enzymes and plenty of nutrition/calories...

Argh it didn't keep my paragrah breaks- sorry!

Hi, just thought I'd add my 2 cents in case it might be helpful.Our girl is DDF508, 20 months old now. She had no noticeable issues until 5 weeks old, at which point she got a lung infection, after which we noticed that she wasn't gaining weight as well as she had been. She was diagnosed at 9...

Thank you everyone for your replies, they are so, so helpful! We have been trying hypertonic saline progressively over a period of a few days and it seems to be working really well. Even though there was quite a lot of wheezing at first, that seems to be improving and Leyla's lungs are much...

I'm looking for families and adults who might be able to relate to our situation and offer anything that might help us along. Our girl is 19 months old, DDF508. We have had real trouble keeping her lungs clear and each hospital stay she gets better for a few days and then gets clogged up again...

Hi, I truly hope your cousin's daughter gets tested ASAP, It would be sad to see her get tonsils and adenoids removed when she is simply getting the wrong treatment (if she has CF, which sounds likely). Can you refer your cousin to the nearest accredited CF centre? It's so important for her...

I can't yet imagine what it's like to be in your situation, but I find much solace in the words of Alan Watts when it comes too the 'big' topics in life. I hope you might find something helpful, too. http://www.brainpickings.org/index.php/2012/10/31/alan-watts-on-death/ Helen

Can you please explain to us what your symptoms are, and why you believe you have CF?

Hi, Our baby is 14 months now, she's DDF508 also. I remember acutely those first months of overwhelming helplessness, they were some of the lowest moments of my life (and my partner's), and yet- we found a way through. You get past the frustration with the meds, you get past feeling like your...

Hi there, Our daughter turned one recently and we have her on a dairy-free, low gluten diet. Many of my family members suffer from excess mucus, wheezing and eczema as a result of dairy consumption, so we are definitely avoiding it for our little one at the moment. She loves rice porridge, we...

Hi, Our daughter with CF is 10 months old. We were already giving her physio without realising it before her diagnosis at 9 weeks old- because she liked to be 'patted' heavily to sleep! Sometimes she likes it, sometimes she'd rather play, but we just persevere and try and distract her until...

Hi, Our daughter is almost 8 months now, DDF508, pancreatic insufficient. She is making good weight gain (docs say better than expected!) and is currently around 7.5kgs. I'm feeding her breast milk first (her favourite, and has excellent calories, overall nutrition and easy to digest)...

Hi again, I think your scientific background and approach will be really helpful in the long run. In terms of the steroids and antibiotics - hopefully your daughter is not being given these unless she is showing symptoms? The antibiotics are usually not too bad on the system, esp while she is...

Hi Palmera, Our daughter is 7 months old now (she is also DDF508) so we have recently been through what you are going through now. What do I wish I would have known? It helps to know that it does get easier. You find out about yourself that you have unlimited strength! Having this diagnosis...

After reading two studies showing vitamin c to thin mucous and reduce lung inflammation (in association with CF), I am truly interested and wonder if anyone knows more about this or have any personal experience. Here they are: http://www.ajcn.org/content/65/6/1858.full.pdf...

After reading two studies showing vitamin c to thin mucous and reduce lung inflammation (in association with CF), I am truly interested and wonder if anyone knows more about this or have any personal experience. Here they are: http://www.ajcn.org/content/65/6/1858.full.pdf...

Hi, I have many different allergies but no cf (my daughter has cf), but I can think of a few things that might be helpful. One thing I have found helpful is probiotics. Another is that if I can minimise my exposure to allergens in general, any reaction I do have is lessened. It's like one...

Hi, I have many different allergies but no cf (my daughter has cf), but I can think of a few things that might be helpful. One thing I have found helpful is probiotics. Another is that if I can minimise my exposure to allergens in general, any reaction I do have is lessened. It's like one...

I imagine that whooping cough would be a tough thing for a CFer to get, and since even vaccinated kids can get it, I imagine some of you have had to deal with this one. How did it go? If you have non-CF kids who got it, how did it differ for them? I'm learning as much as I can about the...

I imagine that whooping cough would be a tough thing for a CFer to get, and since even vaccinated kids can get it, I imagine some of you have had to deal with this one. How did it go? If you have non-CF kids who got it, how did it differ for them? I'm learning as much as I can about the...