My little angel

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cathyf
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 6/29/2006 9:10 AM (GMT -7)   
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.

Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 6/29/2006 11:45 AM (GMT -7)   

Hi,  I am grandma to Leah age 5 months with cf.  Since her diagnosis I have been reading up as much as I can.  However, I am not living with it every moment like you but I hope I can be of some help.  I know that some teenage pwcf advise echinacea and sutherlandia.  However, Echinacea should not be used below the age of 2.  I don't know about Sutherlandia but it is produced in South Africa so you should be able to find out if this is suitable for infants or not. 

Sorry your lpwcf keeps being so ill.  Leah had pneumonia at 4 weeks old and had to have IVs but her veins collapsed because she was so small.  I hope she improves.

Sea 2


Lussier13
New Member


Date Joined Jun 2006
Total Posts : 4
   Posted 6/29/2006 1:02 PM (GMT -7)   
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.
 
 

cathyf
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 6/30/2006 1:40 AM (GMT -7)   
Thanx for the responses. getting her immunizations up to date has been a problem as she is constantly on antibiotics. I have a machine at home from a company called Vitalaire which gives her 100% oxygen but when on this she seems to cough even more. Sorry that i seem to clueless but i have not found one support system here....

The town which we live in is extremely damp and misty... will this also have a bad affect on her. To be quite honest i am at my wits end.. My paediatrician has told me that i must expect her to always be like this.. but wot i cannot understand is that while in hospital she improved and hardly coughed at all and since leaving her conditions had deteriorated. Surely it cannot be correct that she should cough insesintly... and night times are the worst.... i wake up with her about every hour... when she has a coughing "fits" and battles to breath...

imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 6/30/2006 7:36 AM (GMT -7)   

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.


Sandra
 
Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 6/30/2006 12:26 PM (GMT -7)   
My grand-daughters coughing and wheezing has been much better since we bought an air purifier but she didn't cough as much as your daughter before. If the coughing improved in hospital then it's worth considering what conditions were different. Is there something in her room that she is allergic to? Clutching at straws I know. Sorry.
Leah has physio 4 times a day for 20 minutes per time. Does your daughter have so much physio?

Chaser
Regular Member


Date Joined Apr 2006
Total Posts : 91
   Posted 6/30/2006 8:24 PM (GMT -7)   
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.

cathyf
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 7/3/2006 1:55 AM (GMT -7)   
Hi sea2 thanx for responding.. She has physio but not as much as u have advised. Will definately increase. The drs here jus keep on putting her on an antibiotic but she never actually improves much so with the result that she is on antibiotics every 3 - 4 weeks...

We had her testes for allergies in hospital and non were picked up.. Perhaps it is worth having her retested.

Hi Chaser... no our home is tiled not carpeted..... but will lookinto the Febreeze allergen for the furniture.
With regards to her diet... she eats alot of yohgurt and fresh fruit and veggies... veggies are steamed not boiled... Im curious about the sugar intake that u mentioned... the paediatrician who treats her told me that she should eat as much sugar as possible.... loads of chocolate etc.. ????(but she isnt a fan)...

Chaser
Regular Member


Date Joined Apr 2006
Total Posts : 91
   Posted 7/3/2006 4:27 PM (GMT -7)   
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.

Chaser
Regular Member


Date Joined Apr 2006
Total Posts : 91
   Posted 7/3/2006 4:37 PM (GMT -7)   
This link is from the CFF website regarding CFRD. If you read up on the causes of CFRD its because we have a hard time producing insulin due to scarring of the pancrease. If you eat less sugar, then your body is better able to produce enough insulin for your intake. Simple enough - lower sugars require less insulin, meaning the pancrease doesn't have to work as hard.

http://www.cff.org/UploadedFiles/living_with_cf/Files/Final%20CFRD%20brochure%20v2.pdf

cathyf
New Member


Date Joined Jun 2006
Total Posts : 5
   Posted 10/10/2008 2:22 AM (GMT -7)   
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??

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/10/2008 6:28 AM (GMT -7)   
Hi there Cathy,

Ouchie, I have never heard of people cracking ribs before due to coughing, I guess it can happen though. I find that when I cough my upper body tightens up and curves, and also I find that when someones examining my tummy, my bottom ribs click on both sides. I guess this could give some strain too the ribs, which could maybe create fractures. Whatever the cause, I'm glad they have found it, though I don't think you can really do much too mend cracked ribs, they can hopefully advise you how to stop it effecting Hannah!

I'm really glad Hannah pulled through such a tough time, and that you've had a couple of worry free years. So sorry that things seem to have worsened again though.

The advice that you received from Chaser in 06, I'm not 100% sure of. I go to a proper CF trust center, and we get told that if you are going to become diabetic, you will become diabetic no matter what. The amount of sugar you eat will have no influence in you getting CFRD or when you get it.

I am 22 years old, eat bucketloads of sugar-6 in my coffee, lots of sweets and chocolate, added sugar too custard. I have a lung function currently at 96% predicted. My blood pressure is actually too low. No CFRD even with a history of diabetes in the family. In my eyes there is no link between sugar and anything, and find that it's the only thing that keeps my weight high (BMI of 25 right now). However I am not a medical proffesional, and haven't done any research. I'm just going on what I've been told by my dieticians.
I have trouble with my psuedo and have IV's 3-4 monthly-but I cannot have any nebs due too allergies, and I've always been unresponsive to oral antibiotics.

All the best
Gem


Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
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