@jeandarc
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JeanDArc posted an update 2 months, 2 weeks ago
Hi All
I just wanted to ask, once you or your child/relative have started taking Orkambi, does the amount of chloride in sweat go down at some point and when approximately? Our 2-yo girl started Orkambi a month ago and the chloride hasn’t gone down yet so we are wondering when/if this may happen… Many thanks in advance and keep well and safe.…[Read more]
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JeanDArc replied to the topic Godmother of 10months old baby with CF in the forum Introductions 4 months ago
Many thanks Jenny and Julie, for your sharing your experiences, much appreciated!
Wishing you all the best, strenght and happiness.
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JeanDArc replied to the topic Godmother of 10months old baby with CF in the forum Introductions 4 months ago
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…[Read more]
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JeanDArc started the topic Godmother of 10months old baby with CF in the forum Introductions 1 year, 9 months ago
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…[Read more]
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JeanDArc became a registered member 1 year, 9 months ago
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Hi JeanDArc! I’m one of the forum moderators, Tré. How are you today? We’re encouraging new members to go introduce themselves in the Introductions topic, if you don’t mind!
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I was in the clinical trial and was blinded to the results of my sweat chloride tests, but I do know they dropped over time. The Orkambi website states that in children ages 2-5: after taking Orkambi for 24 weeks, sweat chloride decreased 31.7 mmol/L on average…
[Read more]