My little angel

Hi everybody.. im a newbie from Grahamstown in South Africa...

My little girl was diagnosed with cf last year september when she was 9 months old.... we spent 2 weeks in hospital but have battled ever since then..

Any advice on diet and boosting her immune system would be greatly appreciated as she has repeated bouts of pneumonia.

Hello,

I am almost 20 now, but I was diagnosed at six weeks.  As such, I am not sure what specific challenges my parents faced when I was that young.  However, it is extremely important that your child be up to date on all her immunizations and gets a flu shot every year, as immune system function is slightly to severely deficient in those with CF.

If possible, make sure that the humidity in your home is under control and that you keep your little girl in moderate temperatures, even to this day high temperatures bother me, but it is the humidity that is the worst.  People with CF are not able to absorb the same amount of oxygen from each breath they as are people without CF, and the humidity worsens this symptom.

Also, through the process of breathing more, coughing and clearing airways, people with CF burn a lot more calories than those without.  By some estimates, we need to eat six times more.  So, make sure that she is getting proper nutrition.  Ask your doctor what the best delivery method is, I used to take ensure drinks but my condition has bettered since then.  This nutrition is important to store up fatty reserves and a sufficient immune system to battle off such illness as pneumonia, and even the common cold.

 

Hello Cathy and welcome to HW!

I would definately keep her updated on her immunizations.  As for the constant coughing, what has the doctor advised besides the oxygen?

For extra nutrition, my son drinks the Carnation Plus Breakfast Drinks.  There is a program they have (Extra Helpings) that with the script of Creon, you can get a month's supply of drinks and vitamins free. 

Hope your daughter gets some relief soon.

You say that she did great in hospital, but not at home? - This could very well be the damp and misty conditions you talk about, or it could very well be allergy problems in your home. Have you had an allergy test done on her? Many allergens can get trapped in carpet, furniture, even her stuffed toys should be washed daily to prevent dust mites and other allergens. I know of some CFers who had many lung problems, but then once they found out that they had allergies and treated them, they did a lot better off. Get yourself a purifier with a HEPA filter for your home. This will get rid of pet dander (if you have any pets), mold, dust mites, bacteria, etc. Do you have carpet in your home? Carpet is usually pretty bad for CFers as well. I know of many who spicifically ripped up their carpet and put in hard wood floors. If you have to stick with carpet, get a carpet powder for allergens. Arm & Hammer Allergen Reducer. You just vacuum this up. A HEPA filter vacuum would work as well, and there is also a Febreeze Allergen spray you can get for your furniture. I've noticed that my CF acts up when my allergies are in motion.

As for reducing chest infections, a lot of it has to do with nutrition as well. Make sure she has a healthy diet. Oil of Oregano is a known anti-inflammatory. You can get it in liquid form, and you rub it on the heel of your child. Here's a link:

http://coldflu.about.com/od/remediesforcoldandflu/p/oiloregano.htm

Many fruits are also good for boosting the immune system and reducing inflammation of the lungs. Good fruits for that are:

Apples - They are rich in flavonoids that fight off free radicals to prevent cell damage. Consuming apples and their juice will protect against heart disease, diabetes, cancer, memory loss and improve lung function.

Pomegranates- The pomegranate carries with it the mystique of ancient myth, but we moderns are beginning to realize that its health benefits are very real: pomegranate juice may have almost three times the antioxidant potency of an equal volume of green tea or red wine.

Basically any bright coloured fruit will help with this. Cherries are great for this as well, as they are a proven anti-inflammatory and antioxidant. You should have her eating yogurt and even cottage cheese as well, as these foods control yeast growth, which in turn will control your bacteria growth. Cottage cheese is good with cut up fruits & jello. Fruits can be eaten with cream cheese as well, and you have the added benefit of extra calories as well. You should also decrease her sugar intake, as high sugary foods lead to poorer lung function.

Hope this has helped you.

Too much sugar consumption can lead to CFRD (CF related Diabetes). Your daughter should be on a high carb, high protein, high fat diet. Not high sugar intake. I'm not saying that cutting out sugar will keep you safe from diabetes, but it'll help prevent it. High sugar also can cause high growth of yeast and bacteria as well in the lungs. I've always been told from anyone of my CF specialists, that sugar is fine in moderation, but high amounts are no good. I've also heard this from a lot of CFers as well. Cutting out sugar or at least decreasing it will also lower inflammation in the lungs. Which leads to less chest infections.

Hello all..

Just to give you an update - since i first joined in June 2006.

August 2006 almost ended in tragedy. Hannah was admitted to hospital after a really difficult struggle with pneumonia and very raspy breathing. It was eventually discovered that she had a bowel blockage and an operation had to be performed. After the op she was put on a ventilator (initially they said for about 24-48 hours). She ended up being on life support for nearly six weeks, being transferred from a ventilator to a oscilator. Sitting next to her bed and listening and watching as the alarms went off when she flatlined repeatedly was heartbreaking. Thanks to a handful of super nursing staff and god she pulled through. From October 2006 to date, we have had a relatively "easy" if i can use that word, time. Have a regular routine for nebs and medicines and physio and she did really well.

The last 2 months or so have been a bit rough and she has lost alot of weight. We are now on antibiotic number THREE in the last 8 weeks. Culture tests have been done and we are waiting the results. Something that was picked up on her latest x-ray was that she had a cracked rib. I was advised that this could have been from the severe coughing???? Any ideas on this??