Cystic Fibrosis News Today Forums | JeanDArc | Activity https://cysticfibrosisnewstoday.com/forums/members/jeandarc/activity/ Activity feed for JeanDArc. Wed, 15 Apr 2026 17:15:03 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 a9d941b44f92109acb323722da287c58 JeanDArc replied to the discussion Trikafta//Kaftrio 9 months evaluation in the forum CFTR Modulators https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-kaftrio-9-months-evaluation/#post-20103 Mon, 16 Mar 2026 14:13:08 -0500 Reply to Trikafta//Kaftrio 9 months evaluation

Many thanks Paul, that’s very helpful. My niece has been taking Dekas vitamins containing all sort of vitamins that help as a supplement, we order them from a doctor based in Netherlands, let me know if this would be of interest to you, I’ll share the link to the website and the doc’s email address.

]]> 4b0dff6f5763be1dcec4b9b8f8757cf5 JeanDArc replied to the discussion Trikafta//Kaftrio 9 months evaluation in the forum CFTR Modulators https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-kaftrio-9-months-evaluation/#post-20096 Fri, 13 Mar 2026 18:51:19 -0500 Reply to Trikafta//Kaftrio 9 months evaluation

Hi Paul, that si great to hear how well you are doing with Trikafta. 🤩 may I ask if you have been taking anything to support the liver as well? My 7yo niece with CF didnt have very good liver function test results after taking Orkambi for a few year and now she has just switched to Kaftrio and we wonder what supplements to give her to improve…

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]]> 17a7a1a398b7809c40073c4a95498092 JeanDArc started the discussion Hello dear friends, in the forum Friends and Family https://cysticfibrosisnewstoday.com/forums/forums/topic/hello-dear-friends/ Sat, 23 Oct 2021 15:38:51 -0500 Hello dear friends,

Hello dear friends,

our 3yo girl has been taking Orkambi for 12 months. Her doctor has increased her doses of Creon and Solmucol – do you have similar experiences please, as we were under the impresion the doses of other medicine should have been reduced not increased ..? Many thanks for any advice and experiences.

A.

]]> 286ac6df4f96631192e8c4ba1694496d JeanDArc posted an update: Hi All I just wanted to ask, once you or […] https://cysticfibrosisnewstoday.com/forums/activity/p/3877/ Thu, 12 Nov 2020 10:29:42 -0600 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… Read more

]]> 1 faae1cab91e032390b503fb4900173e8 JeanDArc replied to the discussion Godmother of 10months old baby with CF in the forum Introductions https://cysticfibrosisnewstoday.com/forums/forums/topic/godmother-of-10months-old-baby-with-cf/#post-15667 Tue, 29 Sep 2020 20:34:35 -0500 Reply to Godmother of 10months old baby with CF

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

Wishing you all the best, strenght and happiness.

]]> 55df138a6d9010ef6a13e966fc44622a JeanDArc replied to the discussion Godmother of 10months old baby with CF in the forum Introductions https://cysticfibrosisnewstoday.com/forums/forums/topic/godmother-of-10months-old-baby-with-cf/#post-15655 Sat, 26 Sep 2020 10:27:06 -0500 Reply to Godmother of 10months old baby with CF

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… Read more

]]> d3a5884ff85a1175dd63ffc0f229fca7 JeanDArc started the discussion Godmother of 10months old baby with CF in the forum Introductions https://cysticfibrosisnewstoday.com/forums/forums/topic/godmother-of-10months-old-baby-with-cf/ Thu, 11 Apr 2019 18:43:36 -0500 Godmother of 10months old baby with CF

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… Read more

]]> b37e91a864378b20f86f6f054e0bf2ae JeanDArc became a registered member https://cysticfibrosisnewstoday.com/forums/activity/p/1035/ Tue, 09 Apr 2019 22:11:09 -0500 1