So why does Arlo have to have his eyes checked before he can start Orkambi?
One of the rare but potentially serious side effects of Orkambi is that it has been noted to cause cataracts in children. Aka an abnormality of the lens of the eye.
Because of this it is routine for the eyes to be tested before Orkambi is started to make sure there is nothing untoward going on and that there are no abnormalities prior to starting the drug.
Thankfully Arlo’s eyes looked clear and his vision is exactly as it should be for his age. 🙌👏💃🙏
My tips on the eye test part:
The drops they put in the eyes in order to look for cataracts make the pupils dilate. Nobody gave me any advice prior to the test (or told me to bring anything special 😡!) but it turned out that sun shades for the car window for the drive home were a must to protect his eyes (thank fook I’d packed em!!) And same goes for sunglasses / a sunhat / shade over the pram, etc. etc. if we planned to be outside for the rest of the afternoon. There is a risk of damaging the eyes without these. So please know this! Cause I didn’t!
The drops take 30 to 40 minutes to work and we were sent back out into the waiting area for this so I was glad I had snacks and entertainment sorted. Kept him amused whilst we waited and obviously we couldn’t wander outside the hospital because of the sun (see above) ☀️
Prepare to pin your child down for the cataracts scan. The doctor managed to assess the right eye almost without Arlo noticing but the left eye was another matter. Ended up having to pin him down in the same way we would for a cough swab or a more invasive medical procedure.
It’s worth it though 😍
Let’s get this in him and get on the road to prolonging his life - a life unlimited! 💛💛💛
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