Therapies: What do you do each day?

[Kaethe108]

Hey there!

I think it would be interesting to read what kind of therapy everyone is doing, especially concerning age, which mutations and where you come from. If you are also interested, please share!

I will make a start:

22 months old, with f508del and r553x, living in Germany
morning: Sultanol, after that 4ml HTS 6%
midday: 2,5ml Pulmozyme
evening: Sultanol, after that 4ml HTS 6%
after/during each neb session doing stretching exercises, blowing games etc.
Taking Kreon, AntraMups, Aquadeks, Vitamin D and if necessary oral Antibiotics

 

[Ratatosk]

Morning: Albuterol/Atrovent nebs while vesting for 30 minutes. Followed by Tobi. Afterschool/Work: same. Before Bed: Albuterol/Atrovent Nebs followed by Pulmozyme (Dnase) while vesting. Takes Creon, Source CF softgels, Vitamin E (400 IU), Vitamin A (10,000 IU), Mephyton, Urisidiol (Actigall), Dicloxicillin, Septra, Azithromycin. Live in the states. DS is 9 years old.

 

[juliepat]

Hello Kaethe108,
my little one has same mutations as yours! How is she doing?
At the moment we have neb sessions in the morning and in the evening with 2 ml Mucoclear 3% and Salbutamol. Physiotheraphy 1 time a week, Mulitibionta vitamins, K-Vit, vitamin D, Creon for kids, antibiotics when needed (Cefaclor or Amoxiclav).
P.S. We are from Germany aswell!

 

[Rebjane]

Do you all do chest Physio therapy?

 

[Ratatosk]

One thing our doctor stressed from day one was doing chest physiotherapy (CPT) or Bronchial Drainage (BDs) at minimum twice a day. We did 3-4 times a day (4 or more when DS was sick) until we got a vest when he was 3.

 

[MOM247]

Morning: Source CF Vitamin, 1,200 IU Vitamin D, Prevacid
AM Treatment: 2 Puffs of albuterol & Nebulized Hypertonic Saline 7% & 30 mins of Vest, Followed by 2 squirts of Flonase in each nostril.
PM: 2 Puffs albuterol & 30 mins of Vest & Nebulized Pulmozyme

*We add lots more of Vest during colds & coughs

 

[Caro46]

My daughter is 3 and 9 months (DDF508) now and has, apart from her Creon, loads of Scandishake + weight gain supplements through her g-tube and the odd bit of food (when she's in the mood for eating), these things daily:

1 X Source CF chewable
Extra Vit D
20ml Zinplex (Zinc/selenium supplement)
3ml Ferrimed (iron supplement)
10ml 18% saline
2 puffs Budeflam morning and night
Asthavent when necessary
Antibiotics when necessary

She has physio (manual) twice a day for 15 min each at the very least, and then we encourage her to blow bubbles through a tube in the bath, blow out candles, bounce on her trampoline when the weather's good (we're in Cape Town, SA, so the weather's generally good! ) etc.

Sure I've forgotten something... that list seems too short!

 

[Kaethe108]

@julipat: ich schicke dir später eine PM.

@chest therapy:
with our little one it's very difficult to do this. She freaks out when we even try to touch her chest.
So we try as good as we can to do blowing games, stretch her chest while playing "hopping games" etc.

 

[ryry11]

Age 20, DF508 and N1303K.


AM:
Calcium and vitamin D
Vitamin B
Prozac
SourceCF


Morning treatment:
1 vial Xopenex
1 vial 7% HTS
20-30 minutes of vest while I do the first two nebs, sometimes Acapella as well.
Tobi or Cayston dependent on the month


Afternoon:
Sometimes 20-30 min of vest dependent on how I'm feeling, along with Xopenex and HTS if needed.
Cayston if it is that month


Evening:
1 vial Xopenex
1 vial 7% HTS
1 vial Pulmozyme
20-30 minutes of vest, sometimes Acapella
Tobi or Cayston depending on the month


PM:
Calcium and Vit D
Gabapentin
Extra vitamin D
MWF Azithromyacin
Source CF


Zenpep MT15 5-6 with meals, 2-3 with snack.

 

[Kyrav]

Age 24. I switch between tobi and cayston, I'm on tobi and other ivs this month. So this includes that as well.

7 am : cefapime
10 am: albuterol, pulmozyme, vest 10 min, tobi
2 pm : albuterol, hts 3%, vest 10 min
3 pm : cefapime
4 pm : levoflaxacin
6 pm : albuterol, hts, vest 10 min
10 pm : albuterol, pulmozyme, vest 10 min, tobi
11 pm : cefapime

pills: vitamins a, d, e, an OTC vitamin, tums for calcium, ursodiol, azythromyacin m, w, f, zenpep 6-10 per meal, trazadone when needed

 

[franzie2984]

29 years old, with Df508del, U.S.
morning: Symbicort, 2 puffs, lantus insulin: 14 units
evening: pulmozyme and albuterol
varies: Extra vitamin A, D, E, K, and multivitamin, exercise, Ultresa 5 with meals 3 with snacks and humolog insulin: 1 unit for 20 carbs.
weird stuff: I eat at least a spoonful of coconut oil every day and sometimes I boil water with eucalyptus oil in it then breathe in the mist before I go to bed or I rub a mix of coconut oil and eucalyptus on my chest (it's like vapo rub).

 

[Jellybaby]

Im 17 years old with DDF508.
I do month on tobi month on cayston so both months are different

Tobi Month!
Morning: ventolin + Saline neb + Tobi podhaler
Afternoon: maybe exercise!
Evening: Ventolin + Saline Neb + Physio (Pep mask)
Night: Ventolin + Tobi

Cayston month!
Morning: ventolin + Saline Neb + Cayston
Afternoon: Cayston
Evening: ventolin + Saline neb + Physio
Night: Cayston

I try and do as much excercise as I can and loads of singing!

Tablets: Creon, Aqua Adek, Vit K, Vit D, Iron, Azythromyacin, Losec,

 

[Radies]

I'm about to turn 36, I have DDF508 w/pseudo. I'm also a husband and father of 1 and 4 year old girls. We live in Houston, Texas. You could say I'm busy and don't have time for treatments. My regimen is designed to minimize the interruption of my daily life as much as possible while still doing the things I need to stay healthy. So here it is.

6AM – 7AM (Breakfast)
3-4 puffs of my Albuterol Inhaler
7% HTS while wearing my vest (12 minutes)
Breathing exercises with my Acapella (15-20 minutes)
Pulmazyme (5 minutes)
Alternate each month with either Tobi or Cayston
1 puff Advair 500
Nasal Flush
2 squirts each nostril of flownase (fluticasone)
MWF 1ea. Azithromycin
ADEK Multi-Vitamin
2-3 cups of coffee and I’m ready for the day

8 PM – 9PM (Before Bed)
3-4 puffs of my Albuterol Inhaler
7% HTS while wearing my vest (12 minutes)
Breathing exercises with my Acapella (15-20 minutes)
Pulmazyme (5 minutes)
Alternate each month with either Tobi or Cayston
1 puff Advair 500
Nasal Flush
2 squirts each nostril of flownase (fluticasone)
MWF 1ea. Azithromycin
ADEK Multi-Vitamin
1 Peanut Butter and Jelly Sandwich washed down with 12 ounces of Vitamin D milk and Scandishake mixed in.
Hit the Sack around 11PM
In addition I take 4 Zenpep pills with each snack and 6 with meals.
I also take 1 ML of Cypinate (testosterone injections for LOW T) every 10 days
FYI - I recently added the acappella and the vest to my regimen because my FEV1 fell to 35-36. I’m trying to get it up to 40% so I can get into the combo VX 809 / Kalydeco study. It was 44% one month ago.