Cystic fibrosis medication and vitamins for a baby

Part 1 - Flucloxacillin

This is Arlo’s prophylactic antibiotic taken twice a day. This means it’s a low dose of antibiotic that we are giving him to try and keep chest infections at bay.

The bacteria that you or I would easily breathe in and then breathe out again gets stuck to the mucus inside Arlo’s lungs and can colonise there resulting in a chest infection. This is why chest infections are so common and so much more serious for those with cystic fibrosis. This prophylactic dose of flucloxacillin is designed to almost combat any bacteria before it can even become an infection.

If Arlo does colonise a particular bacteria that the prophylactic antibiotics doesn’t get rid of - and he did colonise staphylococcus bacteria in the middle of December - then his team will test the exact bacteria in Arlo’s lungs and will recommend the best antibiotics to treat that particular infection. And the dose will likely be more frequent or with a higher strength of antibiotic to get rid of the infection. All very clever.🤓 (Note: I am seriously not medical at all and still learning correct terminology🙈🙈🙈.)

As you can see we give it to him in a syringe orally. The best way to administer it is to load up the syringe (he’s currently on 2.5ml at a time) and then pop your little finger in his mouth and get him to suck on the tip of your finger. Then the syringe goes in his mouth down the side of his cheek and slowly squeeze the syringe as he ‘chugs’ it down!😆

When we first had to give this to Arlo it was a BATTLE to get it in!🙈I honestly can’t tell you how 💩💩💩💩💩this stuff tastes! (Why they haven’t managed to make it taste like Calpol baffles me?!?) But somewhere along the line he got used to the taste and now he absolutely guzzles it down!

Part 2 - Timing of flucloxacillin (rocking a hangry baby!)

In the early days the most challenging thing about Arlo’s prophylactic antibiotics was the fact that flucloxacillin must be taken on an empty stomach. You must wait an hour after a feed before administering it and then you cannot feed for a further hour once it has been given.

This caused all sorts of headaches when we were responsively breastfeeding. It’s pretty hard to tell a tiny baby he can’t feed now cause he’s only just had his antibiotics!🥺

There was many a time when we walked Arlo in the pram or in our arms - or rocked him in his bouncer - to distract him from his hunger whilst we waited for the hour to pass until he could have his feed.

Thankfully now he is older - and we have more of a set routine each day - it is getting easier and easier to factor in the 2 hour window required. Although lately there have been times when I’ve wished I could just give him a feed to get him sleepy for his last nap of the day!😆

Part 3 - Vitamins and enzymes (creon micro)

Arlo is pancreatic insufficient. This is the case for about 8 out of 10 people with cystic fibrosis. The pancreas does not function properly because thick mucus in the pancreas blocks pancreatic enzymes from moving from the pancreas to the digestive tract. Without these enzymes, the body is not able to properly break down fats, protein and carbohydrates in food. This results in slow weight gain and ‘failure to thrive’ in babies with CF.

This was probably the only ‘warning sign’ we experienced in the first 4 weeks of Arlo’s life. He lost 10% of his birth weight in the first week (which is actually relatively normal) but was slow to regain birth weight. We literally only just got him back to his birth weight a couple of days before his diagnosis. Which is actually pretty impressive without the help of additional vitamins and enzymes!! .

Another warning sign in an otherwise healthy baby can be found in the baby’s nappies. Had Arlo not been our first baby, we might have noticed that his nappies were not normal. A baby with CF that is pancreatic insufficient usually has smellier, mucousy and/or greasy poos💩 (Hope you weren’t eating whilst reading this!) But Martyn and I had never changed a baby’s nappy before Arlo so we did not suspect a thing!

VITAMINS

At the first clinic we were given all the vitamins that Arlo needs. The most crucial ones are the fat soluble vitamins A, D, E and K.

Arlo takes about 7 x the recommended dose of a regular multivitamin that any baby might take - this is the rather revolting yellow looking syringe. It smells horrendous but must taste delicious cause he laps it up.

He also takes extra vitamin E - this is the white syringe. Again he takes this very easily so I think it tastes pretty good too.😋

He has these once a day - usually with his 5pm feed. I refer to them as his pre-dinner cocktail.

ENZYMES - CREON MICRO

Here are the enzymes we give Arlo - magical little granules of creon micro that help pancreatic insufficient baby’s to get the calories, vitamins and minerals they need to gain weight and grow/develop properly. This is especially important for newborns so that they can absorb the fats in breast milk or formula. And then it helps older babies to absorb the protein, fats and carbohydrates once they start weaning.

This has to be given before every feed on a baby spoon with some apple purée. So Arlo has been taking apple puree since he was 4 weeks old! The puree helps the granules to go down without being chewed or otherwise getting stuck/spat out. But it is also important for its acidity in helping with absorption of the granules themselves.

The granules are measured in spoons - but not your normal kind of spoon. It’s a scoop that is fit for The Borrowers! It’s tiny! It started at just half a scoop when Arlo was teeny and now he is on 1 and half scoops with every milk feed. (Adults with CF take their creon in tablets and at a much higher strength I believe.)

We started weaning 4 weeks ago and whilst the ‘first taste’ veggies and fruits required no extra creon (other than avocado or coconut due to their fat content), now we have started to introduce other things like egg, meat, fish, cheese and nut butters it is really tricky to pre-empt how much Arlo will eat and therefore how much creon we should give prior to his meal. Especially as some days he eats a lot and other days he doesn’t have anything!🙈

I think we will get used to it - I am told that giving the right amount of creon is an art not a science.🙏

But hats off to all those out there with CF managing this every day.