Posted , 4 users are following.
My daughter is 4 1/2 years old and had just been diagnosed with chronic kidney disease. She has kidney reflux which we believe to have caused CKD. Read up on the info the doctor gave us and the website she gave us and they all say talking to other parents helps. Just wondering what other people have gone through and what I should be expecting. Thank you
0 likes, 2 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
helen54849 victoria75751
Posted
Hi,
Scary time huh?. Right firstly I have Alports which is different but my Mum's cousin had reflux and the issue was corrected and she was perfectly fine. So I suppose it depends on what the Drs plan is. CKD is just a label, a lot of people are in the CKD range (there are 5 stages, 5 being the worst) like I say a lot of people are at stage 1 or 2 they just don't know about it. I know people who are stage 3 and haven't moved from this stage. In my personal situation I lead a perfectly normal life until stage 4 and had minimal symptoms even then. The key is to speak to her medical team, before any appointments write down a list of any questions you have (that way you won't forget anything) They should be happy to help. Ask for a treatment plan, what are they going to do and when, what stage is she, is it likely to progress things like that. I hope this helps a little, it is a lot to get your head round I know, especially as she is so little. Sending big hugs xx
MrsO-UK_Surrey victoria75751
Posted
Being a much older person with CKD, I always feel especially sad when I hear it diagnosed in little children. Have you been told that both kidneys are involved? If only one is affected and if my experience is anything to go by, the problematic kidney can be removed and your little one can be cured and free of reflux. After a childhood full of cystitis bouts, I had a kidney removed aged 12 with very many years being problem-free. If both kidneys are affected, then Helen has given you lots of information as to what to expect from her experience. There is an active forum on kidney problems on healthunlocked which you might find helpful. Also, if you haven’t already done so, do get in touch with the National Kidney Federation who will be able to put you in touch with others for support. Lots of good luck wishes to you and your little one.