Monday, May 2, 2011


Medication will always be a part of Ruby's life. Preventative medicine to stop her getting a bug, and aggressive medicine when she does get a bug, to stop it turning into a lung infection. These  repeated infections eventually lead to lung damage. Many people don't realise that with CF comes digestion issues. Most people with CF are pancreatic insufficient which means they are unable to absorb fat or fat soluble vitamins which lead to ill health and poor weight gain. 

Here is a photo of Ruby's daily medication (the suppositories aren't daily!)

  1. Probiotics - actually these were for me when Ruby was breastfeeding. To try to stop any issues with constantly taking antibiotics
  2. Antibiotic - Ruby is on a prophylactic dose for 18 months. This means it is a low dose to help her fight off any bugs while her lungs are still growing to give them a chance to get nice and strong. The dose is low enough to let her immune system still develop. She has this 3 times a day.
  3. Pentavite - a multivitamin for general health and immunity, as well as a boost of the fat soluble vitamins
  4. Micel E - vitamin E supplement (also fat soluble). For some reason, it is not in Pentavite
  5. Plain old table salt. This is added to her milk and food. The cause of all the CF problems (sticky mucus) is due to salt not moving properly through the body. Extra salt is needed as CFers have much saltier sweat and loose it quickly, leading to dehydration and other problems. 
  6. Suppositories for constipation. Constipation can occur for many reasons, including not enough salt in the diet
  7. Creon (digestion enzymes) They are the most important! These do what the pancreas can't, they break down fat. Ruby has this before any food or drink that contains fat which is pretty much anything except for most fruits and vegies. The dosage depends on her weight and fat intake. At one stage she was on 3/4 of a capsule, that was fun...She has been having this for as long as she has been feeding ans she will do for the rest of her life. The older she gets, the more she has. Could be 10 capsules before a normal meal. If she doesn't have this, she will literally poo out fat and oil and have a gut ache
  8. Super dooper formula with probiotics. I have listed this as a med as she has a need for it, it was not a feeding choice. She is on a high ratio of formula:water and goes through a can every 4 days
  9. Nasal saline spray. Most mums have used this for their babies. It's basically salt water I squirt up her nose to keep the snot moving. I use it all the time
  10. Creon again, but the granules are already in a jar so I don't have to keep splitting open capsules (as she can't swallow then yet)
  11. Antibacterial soap - no she doesn't eat it, but it was in the med drawer
  12. Apple gel - this is what I tip the Creon onto for Ruby to eat. The Creon needs to be coated in something acidic so it gets broken down in the right place in the gut. If I forget apple gel, I normally find tomato sauce somewhere
 And that is all at the moment! Trust me, this is not much. Not pictured is a bottle of Hyrdralyte which she drinks for the same reason as adding salt. We qualify for a health care card so we get the Creon and antibiotics cheaper. Everything else is full price. The formula is $28 a can (can normally find it on special) and the Hydralye $11. We go through one of each every 4-5 days.

So much for my natural parenting, toxin free ideals!


Juggler said...

Danielle, ask about Glucolyte its the same as hydrolyte but on the PBS, so you don't have to pay the full price.

Danni said...

Thanks! We have clinic tomorrow so will ask about it then.