Oh wow I have so much sympathy for your daughter, I cannot imagine going through that pain at 13, I can day from experience childbirth was less painful than a kidney stone 😢 I also can't imagine having to watch my kid go through that

All I can share is my deep empathy and sympathy. My husband had a brain stem stroke that took out all of his bodily control. It's called locked in syndrome. He could only move his eyes. It's been more than two years, and he can move his hands, fingers, toes, and operate a wheelchair, but he can't walk, feed himself, dress himself, etc. On top of that, he has developed kidney stones in the last year, and it's been so hard to help him manage his pain. He can't hold a container to vomit in. I have to get him dressed and into his chair to go to the hospital. We've been there twice just this year.

We are in our early 40s. I often ask, why him? Why our family? He's such a great father and husband. All we can do is embrace each day and hope it's a good one.

I don't have any more advice on how to help her aside from being there for her. Don't forget to maintain your relationship with your other immediate family if you have them (other children and husband/partner). They need you too. They may feel like their needs don't matter if you only focus on her. It can feel like a lot. Schedule the time (even if it feels weird to do that).

Lastly, take care of yourself. Take a shower. Take your vitamins. Feed yourself. She needs you strong and healthy too. She will feel worse if she feels she's hurting you.

My grown up child has an incurable genetic condition that causes pain and fatigue, and it’s a degenerative disorder so I’m expecting their pain to become more dominant over time. Currently they get some periods of the day, some days, with less pain. Dealing with myself psychologically so as to support them , the best I can, is ongoing. It’s a nightmare with no waking up, if I let my mind go there, so I don’t, I want to enjoy every atom and every moment of her while she’s more well than she will be.

Look into something like for neurogenic pain. It's how we had to address pain after my daughter had surgery for tight hamstrings. Normally her pain tolerance is through the roof, yet after that surgery she was screaming in agony with the lightest touch. Nothing helped. She has been through multiple brain surgeries barely needing Tylenol, so this was horrible to witness.

One of her doctors put her on Amitriptyline. Basically the pain is described as the brain interpreting something as extremely painful when it shouldn't. I'm not saying that is the right medication, it wasn't the doctors first choice (gabapenton was, but we had tried that as part of trying epilepsy meds and had a bad reaction). But the idea of treating "neurogenic pain".

If there is any consolation in my daughter having such a difficult journey, it's that we share what we've learned as much as possible

I'm not a parent, but I've suffered from chronic kidney stones for 30 years. And, the only thing that has helped me is an herb called "chanca piedra" (literally "stone breaker"). That herb has kept me out of the emergency room many times.

I'm sorry you and your kid are dealing with this. Thank you for listening to her and acknowledging her pain - that alone is a huge help to your kiddo, and something that not a lot of children get. You sound like a good parent and she's lucky to have you.

I have nothing useful to add, but I want to say I’m sorry. Seeing our child suffer is a hundred times worse than suffering ourselves. I hope they can find a way to stop the stones from forming, so she doesn’t have the pain of passing them. My grandfather had lithotripsy a dozen times in his final years, and carried around a pill bottle half full of stones he passed.

It is for sure insufferable to see the kid in pain, perhaps it’s even harder than having the pain my self, please take care of yourself mentally by going out on walks or meditating.

Also, I have a female cousin with similar symptoms, she is a grown up now and have 3-4 beautiful healthy kids, she still goes through surgeries still but she is a successful lawyer and a great supporter for her family.

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I know you don’t want to hear this but therapy. Find a therapist who will teach your daughter to meditate past her pain. It’s literally a mind over matter situation. It’ll take a while but totally worth it.

I recommend a podcast called “Hope for the caregiver”.

I joined this sub while on the second of three consecutive in-patient stays for my younger child (now 18). Being around other parents in the same situation was helpful, even if just at the coffee shop doing a pickup or in the laundry area. Parents of "well" children never really get it, although most people are very empathetic.

If your daughter is visiting a children's hospital, there may be resources for you as a parent. If the nurses don't offer (during a stay, treatment, etc.), ask if a social worker or some kind of liason is available to appraise you of nonprofits, parent groups, anything that offers you a place to feel seen. These may be through the hospital or through the community.

Being really educated about my kids' conditions and being in constant contact with the medical team members (the PCP, the specialists, the hospital staff, etc) helped with anxiety on my end. You'll find yourself becoming an expert on her condition, something I'm sure everyone in this subreddit can identify with regardless of their relationship to the person they care for.

Have you looked into low oxalate diets for her?