u/lifeishard99111

Does anyone else have a child with level2-3 autism that just speaks a little, can use the potty, but DOES NOT STOP WHINING AND SCREAMING. All day and all night. I’m not joking it’s non stop. Every 20 minutes some days if I’m lucky, some times it’s every 10 minutes she’s screaming wanting to be held. She will be 5 next month, and we’ve tried so many things. Nothing gets her out of this habit of wanting to be held. She wants to be held, or sitting in the vehicle. If anyone else has a child like this, why did you do. It’s just miserable here at home, no one is happy I’m getting 1-2 hours of sleep, and having to hold her non stop all night and day.

Has anyone came off creon or enzymes since being in TRIKAFTA? My daughters CF team just informed me 2 days ago to discontinue all use of digestive enzymes saying mt daughters stool test is coming back at a level of 302 which is normal. However I’m very concerned about stopping enzymes she’s been on them her whole life and she’s 5, and she’s non verbal so she can’t tell me how she’s feeling. Right now she’s severely comstioated, so I’m not sure if it could have been because of the enzymes. For the record she’s been on TRIKAFTA for 2.5 years.

My 4 almost 5 year old daughter screams and cries inconsolable for over an hour every single night, sometimes multiple times a night. I am at my wits end here, she sleept 4 hours and is up Loosing her mind, inconsolable no matter how patient I am, I am actually so over this life. I can’t live like this everyday. It’s been years and I haven’t slept in years. The Pediatrican prescribed her trazadone even that didn’t stop the wake up flip outs!!! What other medication can we try? 😭 I’m ready to give up honestly I really am. She wakes the entire house up including her younger sister every single time, then I have two kids to console while one is going absolutely ape sh!t. And I could handle it if it was every now and then, but I mean this is constant screaming and crying and massive tantrums for 40 minutes straight. She woke up 5 am screaming flipping out yesterday my day wa so miserable, she finally went to sleep 10:30, and Boom up again 3 am FLIPPING her ever living mind! I can’t handle much more, we have no respite or help either because we’ve been on the waitlist for years. Any advice please before I actually just run away and never come back

Hey all, wondering if I could get some input and advice. My daughters seems to be having intense side effects from TRIKAFTA, constant pain, screaming and night terrors that we’ve noticed, it’s hard to tell exactly what because she struggles with speech as well. We did no Trikafya yesterday, she had an amazing day no crying screaming and she actually slept for the first time in over a year. Anyways, I gave her Trikafya this morning just half a morning dose to start, and bam, crying screaming saying ow ow ow and needing Tylenol asap, she literally grabs it and brings it to me. I’m afraid to tell her team I want to stop TRIKAFTA for a bit( they are adamant about staying in it, are there any other options out there besides TRIKAFTA? I thought I read something about “ kraftio” I’m not sure the spelling. If anyone has any experience or insight , also to add, we switched the evening and morning dose around about 5 months ago , which was when her extreme night terrors started as well, so we skipped yesterday and were planning to switch back to mornings today, which I did , however she had this intense screaming pain fit today, now I’m worried and want to keep her off to monitor that for a week. What would you do? What do you think in your opinion? To add she’s 5.