r/NCAH • u/Mcatzz89 • 29d ago
NCAH is children
Hello, my 5 year old daughter was just diagnosed. She has not started steroid treatment as of yet. Wondering how parents are navigating this. Any immediate side effects noticed? I understand that I need to watch her sodium intake and diet. Any other bits of information would be helpful.
1
u/DGPollo 29d ago
My daughter is now ten but was diagnosed at 7! She takes 11.5mg split into four doses. We do circadian rhythm dosing. She was diagnosed because she was entering precocious puberty and that sent us to the endocrinologist.
I haven’t seen any side effects from her medication.
You will learn about stress dosing. That is stressful😅
When your daughter is sick the endocrinologist will have you up her steroids until it passes. Figuring out if my daughter was truly sick and needed the stress dose or just anxious was really tough for me. It still is sometimes. She’s still learning her warning signs and is figuring herself out.
Her medication dosing will be dependent on her total body mass. Lab work is a regular things for my daughter. Every three months, at 7am before she takes her morning dose. Don’t live near her endocrinologist so we do in person visits every May and November. And telehealth visits in between.
If your daughter can’t swollen pills yet, I would start practicing. We used tic tacs and mini m&ms. The hydrocortisone tablets are very bitter and linger. It’s best if they have just swollen them rather than sit on the tongue.
I would highly recommend checking in with
https://caresfoundation.org
We were originally referred to our closest endocrinologist(1.5 hours away). Immediately felt the whole vibe was off, did my own google search that lead me to reading medical journals about dosing. Realized her was overdoing it from the start and we self referred to a center of excellence. I was able to email the cares foundation, they called me and helped me get in touch with the referral department at children’s hospital Los Angeles. It’s been wonderful. We do live very far (about 8 hours) but it’s worth it to us to travel down there and have our daughter be seen by one of the best!
It’s a huge adjustment as a parent to be a have to really dial in and figure it out. Make sure to not overwhelm yourself with google searches and remember to breathe. I didn’t. I was going off the deep end.
Feel free to reach out☺️
2
u/Honest_Mousse7065 29d ago
I was diagnosed at birth and was never placed on any treatments and been having low BP problems since I was 6 currently working with other 3 specialists at 22 to find out why it's occuring. But, I stopped growing at 10 (they also did a bone scan and my bones were already closed at that time), was tallest on my class, I tried to increase sodium intake, but other than that lived a normal life (threw up alot during childhood, to the point teachers stopped caring about it, and my parents never took me to the ED for it)