After a long stuglle with urine infection that started at around 18 months we found out that my daughter has a simple cyst on her right kidney. After than we got her we checked out every 6 months. Just recently we found another cycst on the same kidney. Our family doctor reffered us to kidney specialist and there we were advised to have our own kidneys checked out to see if there is a family trait to it. They have also done a genetic test. All these results came out negative. But then again the specialist said we still have a small chance that we might suffer from polycystic kidney disease. We were basically told we have to wait until shes around 20 to see if she will develop any other cysts on the other side to say 'yes she suffers from this horricle disease. As a mother I fell very helpless as I cannot do anything to prevent or give a medicine to make all this go away. Are there any other parents out there who have gone through such experience. I feel very scared , I do not want anything happening to my child.
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.
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.
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