Today's question is about the first conversation with your doctor after your child's diagnosis.
When your child was first diagnosed, what was your doctor's initial advice? Treatments, lifestyle changes etc.
What were the good things you learned at diagnosis? What worried you most at diagnosis?
Share your experiences and interact with other members in the comments below!
When we were first diagnosed, our Doctor gave us insight on what the disease was etc., We met with a dietitian to go over what his diet should be. Low/no salt diet. So when we went home we all had to change our diet to help our son out! And then we went over what medications would be best for our son we first just had the steroids, but after 2 1/2 years and many relapses our son needed more help than just steroids.
We have learned many things about this disease and we pray and hope that when he is old enough he grows out of it!
We always worry about our son getting sick because the littlest illness can cause him to relapse so trying to make sure he stays healthy and that nothing happens it’s a big worry for me!
We had a high calorie and low potassium diet restriction and lots and lots of meds including epogen shots. The diet was the hardest thing. We finally figured out the diet and had a pretty good handle on that. Now her blood pressure is too high so we have changed up some of her meds and she is on a high calorie, low potassium, low sodium diet. And we are back to square one of her not wanting to eat and crying over not being able to eat the foods that she wants to eat. It is depressing.
My son was diagnosed at our 18 week ultrasound with a puv blockage. We were told he would need surgery to remove the blockage shortly after birth, and that we would not know the extent of the bladder or kidney damage until he was born. After his birth and surgery, we had alot of trouble with getting his labs balanced. He needs a high salt diet with low potassium and high liquid volume. We have been working with the same dietitian since he was born and he is now 4. I am thankful we live close to a major children's hospital and that he has great urology and nephrology teams.
When we first got the diagnosis, it was recommended that my son be put on a low sodium diet (700-800mg/day) to help keep his kidney function as good as possible, so I met with a dietician to look at different meal plans. It was also recommended that we take his blood pressure AT LEAST twice a week, if not more. What was I worried about? To be honest, the diagnosis chronic kidney disease scared the crap out of me. My first thought was, "I hope he never hits kidney failure." Also, being diagnosed at such a young age (age 1) I couldn't stand the thought of him having his whole life to live like this, but then again, he won't know any different.
Since our daughter was born with ESRD, there wasn’t much advice, just a plan. We spent her first 2 months in the hospital and with her kidney issues being a surprise, my head was spinning. Luckily we live within 15 miles of one of the best Children’s hospitals in the world and they have always watched her like a hawk. After going home, we were seen at clinic weekly, meds and diet were modified frequently depending on labs and we literally called our dialysis nurse every morning for 18 months to tell them her dialysis numbers (UF, weight, blood pressure, heart rate, etc). Although her diagnosis was a shock, it was almost a relief to me because I learned we had options: dialysis that could be done at home and eventual transplant. We got the “there isn’t much that can be done for her” talk from doctors (at a different hospital) right after she was born, so learning that there were options available to keep her with us was all we needed to know!
When our son was first diagnosed, our Peds Nephrologist, Dr. Listman @ Albany Medical Center was SOOOO super informative and incredibly caring. He stayed with us after his office closed to make sure that I could ask any questions and understand what was now to become our new normal. Elijah was immediately put on high dose Prednisone and also, on Lasix for the the water weight gain. We were told that we had to put Elijah on a low sodium diet, initially was to stay under 1000 mg a day.
Everything worried me at the beginning of the diagnosis. I am a worrier so I worried about everything. Living near a teaching hospital and a great set of doctors was something that I took for granted but never again, having a sick child. It is a blessing.
For our case the initial Dr. didn't give us much information as it was the OB/GYN. We were left with a ton of questions and referred myself to a nephrologist, which would take a month or so to get into. Then I was instructed that it was a wait and see kind of a thing after the initial ultrasounds. We would have yearly appointments and ultrasounds, with lab work to monitor. Then we did research on our own or through the websites, and have made some diet modifications.
What were the good things you learned at diagnosis? What worried you most at diagnosis?
At diagnosis we learned that it was something that could go 30 years without bothering our daughter, as myself had no idea I had the disease as well. With monitoring we would have a better idea and just keep an eye on it. We were most worried about the possibility of transplant/dialysis in the future but knowing that wasn't an immediate need made us feel a weight lifted off our shoulders. When diagnosed we were overwhelmed with information, but didnt know what we didnt know. So essentially we didnt know what other questions we should be asking, in order to help our daughter. We also weren't given any local resources/support groups/etc encase we wanted to connect with other families who were dealing with a similar situation.
My son was diagnosed April 9, 2011. He was admitted to the hospital for 5 days. In the hospital, he was given albumin and lasix along with prednisone and lisinopril.
My doctor always emphasizes that we should stay positive. This is the very best advice, in my opinion. He always shares the facts and treatment options and gives us time to decide what is best.
We were sent home with test strips and direction to weigh and test urine each day. We were told the steroids would cause our life to turn upside down, and that was sooo right.
The best news from his diagnosis was that it was hopefully minimal change disease and he could possibly grow out of it. The things that worried me most was it could turn into FSGS, and what the steroids and other immunosuppressant drugs can do over time.
When my son first received his diagnosis, he was a very sick premature newborn in the NICU. The diagnosis wasn't a surprise - we had known it was coming since about his 20 week ultrasound. The doctor's advice was to settle in, start reading, and plan to be spending a LOT of time driving back and forth to the hospital. He'd need a transplant as soon as he was big enough, and our focus would be on keeping him alive until he got to 10 kg. We were to start dialysis as soon as possible, and a few handfuls of medications, as well.
I don't recall learning a lot of good things that day, other than how caring our team of doctors was. They genuinely cared about our family.
Was not told a lot at first. She was just put on bp meds. Checked urine/labs every few months. Had a biopsy soon after to get positive IGA diagnosis. Not told to limit any foods. Was worried that she would keep getting worse.
Treatment changed once she went to a pediatric nephrologist.
At my son's diagnosis appmt, our nephrologist recommended he start on Prednisone and Lisinipril right away as she said 'his labs were jaw dropping!' That was scary, especially since we knew nothing about IGA - never heard of it before. We got no advice on diet changes, she just emphasized the needed to stay hydraded. I liked that our nephrologist was very honest and did not try to sugarcoat this disease or it's possible outcome. My son really likes her and trusts her, so that helps going for our monthly appointments. He hates going for monthly blood work though. My biggest worry at the time of the diagnosis was the thought of what my son's life would be like going forward ... we didn't know what would be restricted/off-limits ... thankfully, not much has changed for now. He's a senior in high school and has a part time job after school 3 days a week and one full weekend day. He bike rides, ski's, rides his dirt bike, went bungee jumping, etc., he wears a kidney belt and helmet, but I still worry all the time. I want him to enjoy life, but wish he weren't so active! I can't say there was anything good for us at the time of diagnosis, we were all shocked ... we were hoping it was just a kidney infection that some antiobiotics would fix.
I also worry all of the time about my over-active child who had a kidney and liver transplant! She is going to give me a heart attack one of these days with all of the things she does. We have fought so hard to keep her alive - I don't want her falling out of a tree she is climbing!
My son was diagnosed at the age 2 years old , the nephrologist initial advice was to keep him hydrated. We were in the hospital for almost a month to balance out my son electrolytes and sodium level because his sodium level was extremely high . Also to the nephrologist ran test to see exactly what kidney problems he was having. My son was in failure to thrive , he was slowly gaining weight. With g-tube placement has been great , Qua’mel has to have lots of water . The doctor figured out how much nutrition and water to balance out his sodium level and enough nutrition to grow. I was scared when first learning of my son diagnosis , never knew that kids could get kidney disease. I was scared that my son wouldn’t be able to have a normal kids life . I was glad to hear that the kidney team act aggressively when it comes to kids . With the right balance of formula and water also he receives the nightly growth hormone shot for growth. Qua’mel is doing great wouldn’t even know that he has kidney disease and close for transplant. Just got a port -a-cath placement for blood draws cause he don’t like getting bloodwork done . I have learned that it is important to be active in your child’s plan of care, to listen and ask questions when you have them .
When complications arose with my pregnancy we were told that he would struggle to survive after birth. He was given a 5% chance to live and struggled greatly at birth. The doctors were always informative, truthful, and supportive. The best advice they gave us was to treat him as normally as possible and to be patient during this process as it will be a lifelong battle for him.
The day our son was born, the doctors told us we had three possibilities for his kidney issues: 1) he was born so prematurely that his kidneys weren't yet functioning properly (unlikely since his kidneys should've been developed enough by 33 wks); 2) he could have an infection; or 3) he has a rare condition called Congenital Nephrotic Syndrome of the Finnish Type (say what?!). And wouldn't you know it ... genetic test results confirmed Congenital Nephrotic Syndrome of the Finnish Type!!! Since his kidneys were leaking protein, the immediate plan was to undergo frequent albumin infusions to replace the lost protein and the long-term plan was to eventually have a kidney transplant when he was large enough. The albumin infusion plan didn't work so well and he kept getting various infections, so by month 3 in the NICU, the plan quickly changed to bilateral nephrectomy and peritoneal dialysis! Hubby and I were (oddly enough) just happy to get moving forward in the direction of bringing home our child. We knew that we could do PD at home and we finally could see the light at the end of the NICU tunnel. Once our son came home at 4.5 months, we hooked him up to PD nightly, checked blood pressure before and after 12-hour PD cycles, gave epogen shots, an abundance of oral medications (well, mostly given through his g-tube), decanted his Similac PM 60/40 formula with Kayexelate to remove extra potassium, measured every bit of fluid he took by tube or bottle ... and estimated every bit that he then vomited right back up (thanks to the nausea caused by PD...), bloodwork constantly... It was exhausting as a parent, but our son never lost his joy. Yes, he screamed and wailed when it was time for bloodwork, but the second it was over, he began smiling again. We put on our brave faces for him day after day and he believed it. After ~16 months of PD at home, he got bacterial peritonitis and a couple weeks after treatment for that infection, he was diagnosed with fungal peritonitis. This is when the conversation changed to kidney transplant. He had already been approved for transplant once he grew to a certain height and weight and my husband was a match to donate (the worry over finding a match was huge! One pediatric nephrologist told us up front that she didn't know if we could donate since we both carried the gene leading to our son's disorder; however, transplant team knew otherwise! Hubby matched!). Transplant surgeon wanted to hold out until our son was closer to 2 years old just to have a bigger kid going into the OR, but these serious infections moved up the timeline. Hubby and I were relieved to move on to transplant. Again, it was what needed to happen to keep moving forward and improve our son's life. Since peritonitis had ruled out PD, our son did hemodialysis for the 1-month hospital stay leading up to transplant. HD was just awful, but it was just one more step he had to take to get healthy again and transplanted soon thereafter. Transplant went well for both donor dad and our recipient son. New set of rules to live by post-transplant, but we have found that we have success by adjusting our expectations and embracing our "new normal."
Our situation was very similar to yours with our baby daughter. Her rare genetic disorder (primary hyperoxaluria) lead to 1 year of DAILY hemodialysis at the hospital AND DAILY peritoneal dialysis at home until she was big enough for transplant (10 kilograms). She received a kidney and liver transplant at 16 months of age and life improved immediately! She is now a happy 12 year old who worries most now about what to wear for Halloween! I hope your son is doing well!
Our Nephrologist explained Nephrotic Syndrome to us and then prescribed a steroid treatment. She scheduled a full blood work-up and instructed us to keep our daughter hydrated and feed a well-balanced, low-salt diet.
The doctor gave us a bunch of information about Nephrotic Syndrome and what as a parent we had to do once my daughter was discharged from the hospital. We had to check urine and weight daily. Very low sodium diet and she was on fluid restriction as well. In the hospital they gave her lasix and albumin to relieve swelling, the hospital nephrologist mentioned she would need a biopsy. Which was very frightening at the time. We were still trying to understand this diagnosis and so much was thrown at us at once. She was started her on a high dose of prednisone and we were told to follow up with a nephrologist immediately to start care. The nephrologist wanted to give some time to see if the steroids would work and if not she would need a kidney biopsy. I was hopeful that the steroids would work and was glad the nephrologist was not as eager to perform the biopsy as was the hospital neph. I don’t feel like I got any good news it was just we have to wait and see, which is very Frustrating and scary as a parent. The hospital nephrologist tried to be positive in saying that you can live with only one kidney and that dialysis is available, but I didnt see either of those two things as a positive after just receiving the shock of my life that my what I assumed was a healthy child now has Nephrotic Syndrome. It has been a frustrating few months. Things don’t move very quickly. My daughter is not in remission yet although the protein in her urine has lessen she is still spilling. Nephrologist at this point wants to wait before considering the secondary level drugs because we are coming into the winter months. He is convinced that the risks and side effects of the secondary drugs outweights the potential benefits at this point. I don’t know if to agree or not. I have been learning and talking to other parents trying to educate myself but it’s hard knowing if waiting is the right decision.
Our daughter was 3 months old when we learned she was in kidney failure. Her labwork determined it and an ultrasound confirmed "echogenic" kidneys. My husband immediately knew that she would need a transplant, but I was lost and overwhelmed by it all. There was nothing good about that day. Our lives changed completely. We started the quest to determine why her kidneys had failed.
It took another 6 weeks and a second children's hospital to determine the root cause: a rare genetic disorder called primary hyperoxaluria. Basically, she was born without an essential liver enzyme which lead to the destruction of both of her kidneys. Thankfully, our nephrologist consulted with the experts on the disease and a plan was set out for us: 1. insert a g-tube to help her grow as she was considered FTT "failure to thrive", 2. start DAILY four-hour hemodialysis treatments at the hospital to clear the oxalate (for nearly a year), 3. start NIGHTLY peritoneal dialysis at home to expand her abdomen for new organs (for over 6 months), 4. grow her big enough for transplant despite all of her vomiting (the magic 10 kilograms=22 pounds), 5. have a successful combined kidney and liver transplant (at a third children's hospital). I thought to myself "Really, is that all?"
Our doctor's best advice was: "This is short term pain for long term gain." He knew we were doing the impossible for our daughter and that her diagnosis and our lifestyle changes took a huge toll on all of us (e.g., we relocated three times for our daughter's care, we had another daughter who was 3 at the time, my husband was building a business, etc.).
Somehow we made it through. I have always appreciated the honesty of our doctors and nurses. If I know what I'm fighting I can face it much easier. My daughter is still followed by those three hospitals and I always appreciate the collaboration of her team. We are all working towards keeping her donated kidney and liver as healthy as possible for as long as possible.
When my son was first diagnosed our doctor reinforced the 3 things we must do, monitor sodium, hydrate, daily medication and that these were the only things we could do to try and keep it from progressing too fast. He said it could be years before he could need a transplant and I remember thinking about making it my mission to keep him at stage 2 forever (even though I know it unreasonable). I worry most about the 6months between blood work because I’m anxious to know if what we’re doing is really working.
We are very lucky that my son, 15, has a very good attitude about this and is learning about diet and will try anything new we offer. My short term goal is to have him well educated so if he decides to go to college he can take care of himself.
Our doctors initial advice was to learn as much as we could about the condition and to observe and write down as much as we could so we could learn our sons patters/triggers. We were told low sodium and fluids for swelling, and to try to let him live as normal as a life as we could. Honestly we left still not knowing a lot so I was worried about everything. But in time getting to know this condition and joining groups to hear others stories helped a lot.
Chronic Kidney Disease 
