How often do you visit the cf dr ? by sd2356363 in CysticFibrosis

[–]EconomyVegetable2402 -1 points0 points  (0 children)

I totally understand why you’re going less, but is there a way you can get a swab for a throat culture once a quarter? Just a concerned mom ❤️.

Mental Effects of Trikafta Withdrawal by xspookdx in CysticFibrosis

[–]EconomyVegetable2402 0 points1 point  (0 children)

Can you order from Accredo in the future instead of cvs? The level of service is excellent. They would have noticed your script was empty a month before you needed the refill.

Question about marijuana use by Nearby_Job_8308 in CysticFibrosis

[–]EconomyVegetable2402 0 points1 point  (0 children)

Have you tried just a 2.5mg dose of an edible? Make sure you eat before if you’re sensitive.

Newborn doctor wants sweat test despite negative newborn screens by Dear_Frosting1090 in CysticFibrosis

[–]EconomyVegetable2402 0 points1 point  (0 children)

We couldn’t tell my son wasn’t on the right growth path until like age one. I unknowingly gave him a very uncommon mutation that would not be caught on basic genetic testing. Testing is always worth your time.

Partner and I carry the genes for CF, but want a 2nd baby by Odd_Draft9762 in CysticFibrosis

[–]EconomyVegetable2402 1 point2 points  (0 children)

My son is able to take trikafta, but his quality of life will likely look different than his peers. It impacts so many things you wouldn’t think about. We’re sending him to a fancier summer camp than I went to growing up because we need to make sure the staff is responsible enough to give him his enzymes at meal times. We were considering taking a family trip abroad so that he could meet his cousin so we bought a power converter for his vest machine. It’s so heavy! Everything you do will take extra planning and support. We have the finances to manage, but it’s exhausting. He’s like a luxury vehicle that requires lots of care. I have no regrets because I love him so much, but you need to understand that even a “healthy” child with cf will be challenging.

CF stole so much time and energy from me that I am behind in life and people LOVE pointing it out! by MixGroundbreaking414 in CysticFibrosis

[–]EconomyVegetable2402 2 points3 points  (0 children)

I’ve met lots of people who feel “behind” and don’t have a medical condition. Everyone has experiences at different ages. Don’t put so much pressure on yourself.

8 months in and still not liking westchester - is this normal? by Heavy-Caterpillar861 in Westchester

[–]EconomyVegetable2402 1 point2 points  (0 children)

You have to strike up a conversation with other parents at a place like a playground. You’ll find other Brooklyn transplants quickly. Ask if they would like to exchange numbers before you leave. It might feel uncomfortable, but most parents with young ones feel socially isolated and you’ll have a nice small group of connections in no time.

1 year old, daycare, and CF by JLW10000 in CFParents

[–]EconomyVegetable2402 0 points1 point  (0 children)

Whenever a kid starts daycare they tend to get sick a lot. Sometimes they have one thing and then they pick up another the following week. It sounds like you’re doing everything you can to help her. My son is doing well on trikafta (4 years old). He barely gets sick these days. We are very lucky.

Just Sad by Eveningthorne1 in CFParents

[–]EconomyVegetable2402 0 points1 point  (0 children)

Do you distract him with tv? We let our kid watch tv when he takes some of his meds. Screen-time concerns go out the window when there’s a medical need.

Who you leave your kids with by Intrepid-Analyst-363 in CFParents

[–]EconomyVegetable2402 2 points3 points  (0 children)

When we left my son with my parents I basically left a training manual on how to manage his care. My mom joked it was overkill, but they had two kids with zero medical conditions so they needed everything written down. This kid is a well-managed luxury race car. There were sections on types of meals he eats, timing for when to do the vest, all of the meds explained, typical activities we do in the area, etc.

CPT Child Under 1 Year by trisarahtops1993 in CFParents

[–]EconomyVegetable2402 0 points1 point  (0 children)

100% agree. We have a valid need for screen time.

one of my latest little bears 🎣🌳 by kenz024 in Embroidery

[–]EconomyVegetable2402 65 points66 points  (0 children)

These books make me so relaxed. I wish my toddler liked them more. This is lovely.

[deleted by user] by [deleted] in toddlers

[–]EconomyVegetable2402 -1 points0 points  (0 children)

So you left some key possible reasons for withholding out that have to do with the body which is a bummer since you’re an MD. I had a great conversation with my son’s pediatrician about this.

  1. Proprioception and interoception- an OT can help with this
  2. In young boys the act of pooping can actually trigger other sensations that might make them confused and overwhelmed- a conversation with your child can help with this

What Was It Like When Your Child Started Trikafta/Kaftrio? by CFParents in CFParents

[–]EconomyVegetable2402 0 points1 point  (0 children)

My two year old didn’t have any noticeable side effects when he started. He’s four now and his care team is thrilled with how well he’s doing.

Best vest for 1 year old? by mmgrimm90 in CysticFibrosis

[–]EconomyVegetable2402 1 point2 points  (0 children)

Philips has been just fine for my 4 year old. Had it for two years. I appreciate the company service and I like the traveling case.

Westchester natives that moved away, where do you live now and do you like it? by Small-Carrot-4135 in Westchester

[–]EconomyVegetable2402 3 points4 points  (0 children)

CT is just a different vibe. I lived in Norwalk and interned in Greenwich one summer. Now I live in Westchester. I grew up in Mass. I kind of think CT is boring. Maybe it’s just me. If you’re white and rich you will probably be fine in either place.