Godmother of 10months old baby with CF

[JeanDArc]

HI All

I am a Godmother of a 10 months old baby girl with CF living in Slovakia.CF was diagnosed a few weeks after the birth, we have been giving her Dekas Plus vitamins in liquid form, she’s had good results.once she is 2 years old, the doctors will start prescribing Orkambi I think. I recently learnt that there are better CF medicines than Orkambi on the market, e.g. Symdeko. However, Symdeko is not available in Slovakia and Slovakian doctors do not work with it because they are backwards a lot and don’t care much either so I wonder how to get it and how much it costs please. Thanks for any advice.

[JeanDArc]

Our girl is now 2 years old and is going ot be prescribed ORKAMBI by doctors soon. I wonder if we have someone here with 2+ yo who has been prescribed ORK please – have things improved since and how? Have you been able to drop some of the usual proceedures pre-ORK medication like inhalations, Creon, sanitising everything constantly etc.? I would be grateful for any replies and experiences. Many thanks and have a wonderful day all 🙂

[Jenny Livingston]

@jeandarc It’s wonderful to heat that she’ll soon be starting Orkambi! As an adult with CF, I personally benefitted from Orkambi tremendously. I wasn’t able to stop any treatments or change my daily routine, but my health stabilized and my quality of life improved.

I know things are very different for children vs adults. Starting modulator drugs early in life, I imagine, will make a world of difference! I cannot give the specific perspective you’re looking for, but I can definitely ask around and hopefully find someone who can share their experiences with a child starting Orkambi.

[Julie Anne Dick]

Hi there,
My son is 3.5 and started Orkambi when he was 2. It’s difficult to tell at this age exactly what benefits it has since kids at this age are usually asymptomatic, but he hasn’t had any sort of lung infection since starting it! We still do all the usual things as before (enzymes, treatments, extra salt, vitamins, high fat/protein, precautions for staying well, etc). He never had a lot of trouble staying on his growth curve before Orkambi (always just above 50th %), but we have just been told to start removing some fat from his diet because he’s climbed past 90th %! I believe those are the two things that Orkambi seems to help with the most (less exacerbations and weight gain). Hope that helps.

[JeanDArc]

Many thanks Jenny and Julie, for your sharing your experiences, much appreciated!

Wishing you all the best, strenght and happiness.

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