What general advice would you give a parent whose child is newly diagnosed with kidney disease?
What advice do you think your child would give to a recently diagnosed child?
Share your experiences and interact with other members in the comments below!
That’s it’s gonna be a bumpy road at first, before it all calms down! I mean it’s scary to have your child diagnosed with something serious and we never want our child to go through anything. But we have to to stay positive! And I think if my son were able to give advice to a newly diagnosed child I think he would say the same but every child is different when it come to getting sick etc. my son was constantly sick with cold and all so that’s why it’s been a bumpy road but we just have to know we will get through it!
Every child will have different but similar results to their specific illness, learn all you can about the condition whether it be from the doctor, the internet or a community. When you know WHAT is happening to the childs body then you can find ways to make it manageable for them. If its without a cure, try the treatments the doctor recommends and KEEP YOUR EYES OPEN to all the effects of it (good and bad) and communicate with the doctor. We tried MANY meds, diets, treatments until we found what became manageable. Not an easy road but with patience and communication, even communication with your small child, daily life can be manageable. It becomes the new normal. I think my son would offer the advice to remember that this is not WHO YOU ARE, BUT WHAT YOU HAVE. Everyone has something, this is what you have. Some are better off, some are worse..focus on you and what works to help you manage what you have. Days will seem bleak at times, frustration is inevitable, but choosing your direction on those darker days will make the difference. We didnt really have the benefit of "support groups" when we were first diagnosed (2006)..we literally had TWO cases within 150 miles, we had to call in a specialist from 800 miles away to even diagnose, but I would have LOVED LOVED LOVED to have known about the groups that we found later on. Just venting to other people who understand your child's fight had helped immensely. Not only will the child need to heal, but the caregiver needs support as well.
Thank you for your words of advice. It's been a struggle for our family since my son was diagnosed. It's very much a rollercoaster ride and some days are a bit bumpier than others. It sure helps to read advice and encouragement from others 
Hang in there! Be patient and listen to your doctors, ask questions, and write things down. Keep track of levels and ask questions accordingly, as well as do your own research. Find a support group of parent's who are going through a similar diagnosis and learn everything you can from the doctors, support groups, and your own research. My child would probably not have too much advice to give other than to "do what you have to do". He has never lived without dealing with kidney disease so his life has always been treatments, medicines, and procedures.
That her symptoms are real regardless or what doctors say. That there will be bad days and times during regular illnesses. That there are definite side effects from the meds
My advice would be to take a deep breath and take it day by day ... when my son was first diagnosed, I was dropped to my knees with worry and anxiety thinking about what the future holds for him. Since he only has one kidney to begin with, I thought he would go downhill very quickly, but it's a bit slower progression than I originally thought. At the beginning, I was so overwhelmed not knowing much, but thanks to the Facebook IGA and Kidney Disease blogs, I learned so much and have relaxed enough to be able to see a future for him. We deal with each health issue as they arise - I no longer dread each day with thoughts of what could possibly happen, and try to live in the moment.
The advice I would give is to reach out and look for support. I found wonderful support through a Facebook group I found via NephCare. Also, do your research and find out as much as you can about your child’s diagnosis and treatment options but also take it one day at a time. I got extremely overwhelmed and worried reading about the potential drugs to be used to treat my daughters condition and that caused many sleepless nights and anxiety. So I had to take a break from the internet and just pray and trust God that my daughter would be fine. Remember every child is different and responds differently to their treatment. I would ask lots of questions of her nephrologist.
This is still new for us so not sure my daughter has any advice at this point as she is still working through the reality of her diagnosis.
My advice would be to ask a lot of questions. There were a lot of heavy questions about my daughter’s future that I avoided asking doctors and ended up worrying instead. Had I just asked, I probably would’ve saved myself A LOT of worry and avoided a whole lot of gray hairs. To new parents and newly diagnosed kids, I would say to just hang in there! The road will get bumpy at times but do research, find a community of kids or parents going thru the same thing, ask questions and ADVOCATE for your child (and teach older children to advocate for themselves). If something doesn’t seem or feel right, speak up quickly. Nobody knows your child (or yourself) better than you do. 💚
Becoming familiar with the disease and knowing your family history is the most important advice I could give. We knew no family history of Dents Disease so now we are waiting for genetic testing to begin to see who is all affected in our family. I've come to realize that kids with chronic disease, my son included, are so resilient it amazes me. It seems like nothing affects them, even though I know it probably does. Maybe they're just so used to having testing done, blood drawn, ultrasounds etc...I'm not sure. If my son could give advice, I'm sure it would be "we can't change it, but we can HELP prevent it from worsening."
I would advise to hook up with other families as soon as possible. In person, on the internet, whatever. Being told things by the doctor is great, and fine, but nothing really beats seeing other kids with the same condition as your kid - older, growing, thriving, living. Even the kids who struggle.
I would advise to listen to the doctors, but to understand that they're just people and they can also be wrong. Just because they're doctors doesn't make them always right. Ask questions. Don't agree to anything you don't understand. Educate yourself. Read research studies, ask the doctors WHY they recommend X. What are the alternatives? Why do they like X over Y? Could we try Z? I have a friend whose child is seen at Hospital A - their team does X - why do you prefer Y? Ask politely, and with a willingness to learn, but do ask. You're the parent. The decisions are ultimately yours. And you can't make them if you don't understand. We had our son's first urologist drawing us diagrams in the NICU because I was too tired and too new to the language to understand the words he was using but I really wanted to understand why he wanted to do one thing instead of another thing, and why he wanted to do it more or less immediately instead of continuing to wait and see, as we'd been doing. A series of pictures later, I was on board with full understanding of what we were doing and, more importantly, why.
Be an advocate for your child.
At this point, my child is 6 and fairly delayed. I don't think he still actually realizes that his life isn't normal. I honestly think his advice would be to be super charming and nurses and whatnot will bring you treats and small toys from the prize chest. In terms of practical advice, he likes to take a deep breath and tell himself that it'll hurt for just a minute and then it'll feel better before infusions or labs. And WATCH the needle, don't let the Child Life people distract you, because it's worse to be surprised.
It’s hard. Stay positive. Learn all you can, and find a support group ASAP. I didn’t find a support group until about two years in. It is invaluable. Also, make sure you trust your doctor. Try not to look back and wish you would have stood up for your child more. Advocate!
Your family, friends and doctors are all here to help you feel better. Take one day at a time. You will get used to ouchies such as blood drawls and taking meds. You need extra sleep to give you energy. You are strong and brave.
I agree with the other posts - it's important to learn about the disease and advocate for your child and to find support from other parents in similar situations.
I would also add that it's REALLY important to take care of yourself: the caregiver. It sounds like we are all dealing with complicated medical situations. We cannot help our children if we are falling apart. Make an extra effort to carve out small amounts of time for yourself each day. Try to: sleep, eat well, exercise, talk with family/friends, take a time out from your situation, etc. When my daughter was first diagnosed these things were virtually impossible for me, but over time I realized I had to start doing them. When people offered to help I started to take them up on it and asked that they watch my daughters for a bit so I could go for a walk or run an errand. It's a marathon, not a sprint! Be good to yourself so you can be good to your child.
I’d let other parents know that while life in general is a rollercoaster, prepare yourself for for quite a ride once kidney disease enters the picture! From our initial 4.5 months in the NICU, my husband and I learned to be “cautiously optimistic.” That’s a phrase that has always repeated itself it my mind for the last 7 years. We knew transplant would make life better for our son and it has - we just had to hang on tight through all the peaks, valleys and curves that came his (our) way... then and now!
I think my son would tell someone who’s newly diagnosed that you can still live a fun and full life, but you just have to drink a lot of water (and pee a lot!) once you get your healthy kidney!
To be apart of as many support groups as you can find. The groups are how we learned the most and found out about different options.
I wish our first doctor told us the risks of dehydration while on Steroids. Our 2 year-old daughter became so dehydrated because she got the flu while taking meds. It happened so fast, we wound up in the ER and were admitted for 3 days. We were so unaware of the side-effects of this medication and weren't sure if she was actually sick or reacting to the Pred. We've since changed doctors.
What general advice would you give a parent whose child is newly diagnosed with kidney disease?
Get support as soon as you can. Try and locate other families, kids, parents that share the same disease of your kid. We had no idea where to look for help or information, which leads to being an internet doctor and that isn't always best. Find Dr that is the best fit for your family/child, we spent over a year with a Dr. that we weren't all that comfortable with just because they were close to our house. We learned later that an extra drive can make all the world in the care that you could receive.
What advice do you think your child would give to a recently diagnosed child?
It's not all bad, lots of people have medical issues and the doctors are going to help keep you as awesome as ever.
Chronic Kidney Disease 
15 and Stage 4 CKD
