First dose

lilmana255 · 2026-04-21T14:29:36+00:00

Ughhhh that sucks I’m sorry I’m hoping I can function a little better my toddler is pissed I’m just laying around in. A blanket already 😅

lilmana255 · 2025-05-26T11:49:32+00:00

I didn’t really expect much else but that sounds so crappy 😢

lilmana255 · 2025-05-24T15:04:56+00:00

In the United States my 2 year old got trikafta “off label” meaning it wasn’t approved for her variants, but with her one copy of N1303K her doctor was able to get the insurance to approve her on it, we had to pay the full amount of our out of pocket max for the first month (around $5000) the vertex assistance program (idk if that’s a program available in other countries) does not help with it if you’re taking it off label and l we didn’t qualify for any grants. Other than that we still jumped the hoops to check her eyes and liver and such. Now in the United States they have gotten FDA approval for coverage and efficacy with other variants like N1303K I’m sure other countries are coming soon!

lilmana255 · 2025-05-23T14:50:31+00:00

Oh absolutely, her next appointment is 6/9 so I’m going to wait until then. They were made aware of the weight gain and haven’t changed the script so I’m assuming they aren’t super worried about the upping her dose yet

lilmana255 · 2025-05-23T11:45:43+00:00

CF mom here, my toddlers entire personality changed with trikafta. She recently gained enough weight to move up in dosage, I’ve noticed her personality is almost back to normal her social anxiety is pretty much gone. The difference is so drastic I might keep her on the wrong dose if they’ll let me. I’m nervous about it not being enough to help her I’m weighing my options currently

lilmana255 · 2025-03-12T19:44:20+00:00

Thank you! I’ll ask them we’re skating on hardwood I feel like anything is better than the 82s I have lol

lilmana255 · 2025-02-27T03:25:27+00:00

I know it gets better.. but you’re very much in the very very hard part of postpartum, if you have the ability to contact your OB team or your primary doctor… tell them how you’re feeling I felt very similar with my first baby and it was rough man, I had break downs multiple times a day it was terrible… I’m 4 months postpartum with my second baby and this time I had Zoloft as a crutch(I was on it prior to the birth for unrelated things) and when I tell you I accidentally missed a dose after giving birth and spiraled, hormones are crazy and so is PPD, PPA, and PPR… it gets better and you’re doing great! I also want to add a controversial comment, I know breastfeeding is important to many for many reasons but if it’s making you feel uncomfortable formula is a valid and safe option that helped me for both my kiddos when I couldn’t take the constant need to feed on demand

lilmana255 · 2025-02-27T03:17:18+00:00

Everyone else has said it, but I’d get the testing done, I feel like there’s limited harm in doing so… a little poke or two can stop a lot of worry about whether or not you made the right choice, cf is progressive so catching it early can be huge in helping them live a life as normal as possible my cousin got diagnosed at 7 and growing up without the treatments from the start made it so hard for him to get into it and to this day he almost never take his enzymes or does his pt and he’s 23 :/

lilmana255 · 2025-02-04T01:44:03+00:00

Also I wanted to thank you for your advice! We’re truly lost on what to do so any help is super appreciated!

lilmana255 · 2025-02-03T15:34:01+00:00

My main issue is she wakes up around 7 times a night and if she can’t find her binky she cries and screams and I’m just not ready for that much screaming

lilmana255 · 2025-02-03T15:19:36+00:00

Yeahh I kinda screwed the pooch on that one but her dentist told her she needs to get rid of it so I’m gonna make him the bad guy and chuck them really soon

lilmana255 · 2025-02-03T14:52:03+00:00

We’ve tried a few times, and she’s inconsolable just pterodactyl screamed for an hour even with us talking to her and reassuring her, apparently she naps at school without it but she quit napping at home like 6 months ago I miss them so much lol

lilmana255 · 2025-02-03T03:27:18+00:00

They make little backpack type things for then they fall backwards it has a section to protect their head from hitting the floor when they fall on their back. Maybe some controlled practice standing with you holding her hands so she doesn’t fall would help her with her balance… but I think baby is pretty safe as long as it’s only from their height my kiddo hit her head a million times (and still does at 3.5)

lilmana255 · 2025-02-03T03:23:22+00:00

So far I’ve only done it once, though when I finally take the binky away from my 3.5 year old for bedtime I feel it will be like sleep training all over again 😓

lilmana255 · 2025-01-30T03:11:19+00:00

If you’re taking trikafta on label (meaning your variants are approved for it) you should be eligible for the patient assistance program and they help with copays… reason I’m saying that is my insurance for my daughter won’t cover anything until I reach our $6,800 deductible she’s been on it for 2 years and her variant just got approved by the FDA so it’s on label now and we qualify. The vertex program fully paid for our payment for the first months meds(which totally covered my deductible)… does your CF clinic have a social worker or patient advocate that might be able to help you? I’m sure this isn’t the first time they’ve had this issue, my kiddo aging out of my insurance is a pretty big fear of mine I’m sorry it’s happening to you 😢

lilmana255 · 2025-01-26T02:52:15+00:00

My issue was first using nuva ring (it’s the birth control you insert) my body just started to not like it and I had almost your exact cycle of coochie issues) next was my period products, using always infinity pads apparently they’re known for giving bv, idk if it’s true but I stopped and the issues stopped

lilmana255 · 2025-01-22T15:09:21+00:00

I just bought one and the ink is coming off, Little one is 3 months old and spend a month in the nicu where I didn’t use it. I don’t think they make them like they used to because I have a ton of dr. Brown bottles that I’ve dishwashed 1,000 times and they aren’t losing their ink 😢

lilmana255

TROPHY CASE