Children’s clinic - the first visit

(Photo disclaimer: this photo is not from our first visit! This is probably our 5th or 6th visit! Didn’t have any photos from our first visit.) The first time at the children's clinic - my notes in hindsight:

Two days after Arlo was diagnosed, we went for our first visit to the children’s clinic. This would become a regular thing (we visit monthly now but it was very regular to begin with - weekly or bi-weekly). Arlo’s team at the clinic have now become our support network and a whole new kind of NHS family to us!

I remember being amazed and hugely comforted by the size of the team that Arlo has! There’s his paediatrician, his specialist CF nurse, two physios, a dietician and an almost identical team of people who we will see on an annual basis at the specialist John Radcliffe hospital in Oxford!

This first visit was mainly centred on meeting his full team - we had already met his paediatrician and his nurse at our house when they had come to tell us the news of his CF.

It is also at this first appointment that they perform what is known as a sweat test. This is the test to officially confirm Arlo’s diagnosis. (Note: For some babies and their families this is very important as the diagnosis is not 100% certain from the blood tests but for Arlo we were told right away that he had two copies of the DF508 mutation (homozygous) and that there was no way he did not have CF so the sweat test was more of a formality that the team had to complete. It also gives them a number that correlates to the level of fluoride in Arlo’s sweat - anything over 60 is a CF diagnosis and Arlo’s was 80. CF babies have much higher salt content in their sweat - when I kiss his little forehead I can literally taste it bless him! The test itself involves strapping little pads to his arm with a substance on them called Pilocarpine, in order to make him sweat they also need to stimulate the skin with a small battery which they told us would tingle but not hurt, and then they collect a few droplets of his sweat in a little vial on his skin. Sadly for Arlo, he was too tiny and as newborns do not sweat much, he did not sweat enough to get a result. But we did re-do the test about 2 months later when it worked! Little trooper!)

And it was at this first clinic that we got Arlo started on the right medication and vitamins to help him gain weight, keep lung infections at bay, and generally thrive as a little baby. I’ll cover his meds on another occasion - I’m sure that’s a whole post in itself!

It felt incredibly positive to be there and making the first steps towards getting Arlo what he needs. Although it is also a lot to take on - those first few weeks just getting the medication in him felt stressful and I worried a lot about doing it right and the timings of all (more to come on what he has and how we fit it all in for sure!)

God bless our NHS though - it’s really the best thing we have!

Read more in my diary entry below:

Thursday 27th August 2020

Arlo’s age: 4 weeks and 1 day

This morning was our first visit to the Children’s clinic at RBH. It was really positive in so many ways - we now have all the vitamins, antibiotics and enzymes to get Arlo started on his daily routine. Arlo was a little legend - no doubt about that. He fed beautifully throughout the sweat test. He was so chilled when they took his blood from his hand. And he had put on some weight which is super - especially considering he is not absorbing all my breast milk right now without his enzymes. I am already so, so proud of him.

There was a very surreal moment (probably shouldn’t have been surprising but I hadn’t given it any thought!) when they told us that the last newborn they did the sweat test on was last October. It was just another reminder how rare this is - and how special our little man is!

Giving Arlo the vitamins and the antibiotics for the first time this afternoon was okay - it’s a lot for him and it all clearly tastes terrrrrrrible so I felt horrible having to force it all down him. But this is going to be every day for us from now on and I just hope it gets easier and becomes a normal part of our routine. It’s tough enough with a newborn getting everything done in your day without having to add in medication but I am determined to stay positive and let’s see how we go.

The good thing is that he’s getting everything he needs from the 4th week of his life and that makes me feel soooooo good! We’re doing all we can for him!