They say that approximately 75% of the population will develop a cyst on one of their kidney's in their lifetime, and not even realize it.
I've had PKD for a lot of years now, and until just recently, haven't had anything done about it. It started when I was 17-18, and has gone untouched until this point in my life (38). All my cycsts are 'simple' and only a 1-2 on the Bosniak-Chart, but they were causing renal pain, so my doctor decided I was a candidate for 'renal cyst decortication'.
I'm not a prent, but trust me, my folks have been run through the ringer with me since I was young. Being in & out of the hospital with chronic kidney-stones was not a fun thing for them to watch me go through. To this day, evey time I go into the hospital, my Mom & Dad talk to me while I'm on the way, or go with me, and pray for me and wish they could take the pain upon themselves. All you can do is hang tight and be supportive, overly if you feel it necessary. I wouldn't wish this pain on my worse enemy, and I look at like this... I'm taking my fair share, as well as everyone elses fair share, of pain, and they won't have to suffer later as a result of my pain & suffering now.
I'm not sure how old your daughter is now, but trust me on this... she'll come to feel the same way as she gets older.
My daughter is going to seven this month. Shes very little, that makes me feel worse...
:-((
All you can do is be supportive.
There are MILD narcotic pain-killers that you can administer to her. She MAY become med'dependent (as opposed to addicted), but as YOU will be controlling the distribution, it's easily controlled.
I'm not sure if a narcotic option is something you'd consider, but there you have it. There are non-narcotic options for pain control, but you'll have to see a Pain-Management Doctor about it. There are various mood-stabilizers (ie: Abilify, Effexor, Neurontin, etc) that have shown good results in controlling chronic-pain over the long term. I myself am taking both Abilify & Effexor for this very reason, as I got hooked (addicted) to the narcotics several years back, so the narc's aren't an option for me anymore.
I would strongly suggest you try the non-narcotic route first. If her situation gets worse through the years, as it's bound to do, then her pain is only going to get worse, and you don't want her getting hooked on pain-killers as well as having chronic pain to boot (as do I). Being an addict and having chronic-pain is no easy task, but it IS manageable if you can find the right PM-doc. Talk to her Urologist and see if you can get a referral to a pain-doc.
Let me know if you have any more questions... I'm always here to help.
LMNO