I’m all in on Joy’s story BECAUSE I get labeled as noncompliant almost everytime we have clinic (but I can’t label THEM as medically neglectful when they refuse my recommendations… it’s BS if ya ask me… like when they say, until he cant go to the bathroom or is in pain, we arent admitting him… that’s when i learned to fix ascites myself, and thank goodness I did ).
I actually forgot what I was threatened with when he was 4, and I emailed the CEO of the hospital to get the social worker who threatened me, FIRED… I forgot what that one was over… probably because I wouldn’t give him albuterol 7 times a day, or everytime he has a cough, although it’s completely safe… uh, no it’s not). 
I stopped giving him pediasure after I LEARNED, and after he was diagnosed with diabetes (the amount of aluminum and food dyes in that stuff is insane. I have no doubt it CONTRIBUTED to diabetes). Labeled non-compliant
*No COVID vaccine = noncompliant + threat of medical neglect + guilt trip using death
*no Ursidol (because even though his pulmonologist prescribed it, his liver doctor said there was no science to back the claim that it’s beneficial) = noncompliant
*refusal of banding when he has no esophageal bleeding & refusing to let them do endoscopy every 6 weeks (although he didn’t start getting ascites until they banded him during an endoscopy without my permission) = non-complaint + threat
*No to liver transplant = non-compliant + threat of being turned in (then went to transplant consult and the transplant team backed me on him not needing it, but I was threatened, which is a huge factor in why we went).
It’s by the grace of God that I still have Brayton. I honest to God believe the ONLY REASON it hasnt happened to us is because my husband and my mom have been active in showing up to clinic visits, so they know Im not alone… but that’s not the case for everyone, and it shouldn’t even be a factor of threat. I will say one of the many factors In me deciding to leave my career was that everytime someone else would take him, I’d get a call from the nurse and a lecture on how I need to be the one bringing him, as his primary care giver, or It could be considered medical neglect (let’s not consider they throw me Into a PTSD rage everytime we go, but okay).
OR because every time we went to see his pediatrician, she would remove “non-compliance” from his chart after I explained my reasoning (fortunate to have HER on our side).
At this point, he’s old enough to emancipate himself if they decided to get side ways, BUT this court case will affect everyone’s parental rights with medical freedoms because that’s how courts work. They look at other court case rulings and interpretation. I only found 2 supreme court cases that relate to this, and one was over a cancer patient. One was over an incompetent adult’s care. This court case will either give the CF foundation more power to control us than they already have, or it will put them in their place. I wish children’s health defense would send a team of lawyers in there on February 9, to demonstrate their support for mothers.
THIS IS EXACTLY why I will bring down a hammer and go too far everytime I feel as if either of my kids are being threatened, at any point. This is why I have medical trauma PTSD. Dealing with this ALL THE TIME is enough to make anyone crazy.
You’re a voice for all of us who have been vilified for asking questions and disagreeing with doctors. The CF community is a true blue example of the victims of medical cartel (including their DCFS henchmen), and Joy is going through one of our biggest nightmares.
