What general advice would you give a parent whose child is newly diagnosed with kidney disease?
Newly Diagnosed: What general advice... - Parents of Childr...
Newly Diagnosed
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YollyD_NKF
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It’s overwhelming. You’ll feel scared and helpless. It took me a week to process the news that my 7 year old son had stage 4 kidney disease and would need a transplant. I found that sharing the news with family and friends was helpful. We created a bubble around him for awhile as we didn’t want people crying in front of him or acting strangely. This was also helpful. Sharing the info took a little bit of weight off our shoulders and was therapeutic for my husband and I.
Early on, I started organizing all of the information we were getting from all of his doctors in a google doc. This was so helpful for my mindset. The more I understood, the less scary things were and the more helpful I could be for my son. We have all his meds at the top, followed by his list of doctors and contact info and then a running list of the appointment that he has had that includes the date, type of appt, what was discussed and any follow up that needs to be noted (changes to meds, new scheduled appts, ideas for treatment).
We decided from the beginning to be transparent with our son about his disease. His daily medicine regime was the perfect way to discuss it. When he would take each med, we were able to say something like, “now you are taking sodium citrate. This will help your body be less acidic which will make your tummy feel better.” He would sometimes ask questions and it was a great way to share the info about what his kidneys were up to and how they needed some help doing their job.
He knows what all his meds are, what the doses are, and how they are helping him. (We are hoping this will set the stage for when he gets his transplant and the medications become that much more important).
I wish I could share some nugget to make things better...I can’t. But, I can tell you that you’ll figure things out and will surprise yourself at how quickly you will adapt. There are a lot of us out here going through a similar set of circumstances and we are holding space for you and your family.
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