Still very much in the thick of it with my 19 month old son. At 18 months he was discovered to have a severely atrophied right kidney with cortical thinning. Left kidney normal. We found this through oncology - who was evaluating him for persistent fevers of unknown origin and elevated lymphocytes. Oncology dismissed us but here we are in nephrology land.
I had advanced level 2 ultrasounds during my pregnancy and ultrasounds to measure amniotic fluid levels due to cholestasis of pregnancy. I have a daughter, age 4, who - as far as we know - is healthy.
His cystatin-c is 1.67. Creatinine .47. Bun 16. Calcium has been high/high end of normal (10.2-10.7) and phosphorus normal. His PTH is high. The nephrologist says he has secondary Hyperparathyroidism but given his high calcium, I don’t think that’s true.
He’s having a VCUG on Monday. He’s not circumcised so this will be extra tough. There is really low suspicion of reflux since imaging showed no hydronephrosis. Still, bephrology and urology both insist we get it done.
His eGFR is 76 using the creatinine-only equation, but drops to 56 if you factor in the cystatin-c and bun levels.
I am falling apart, imagining the worst. I don’t know what to expect and the nephrologist isn’t being clear given we don’t yet have a diagnosis. She has admitted she’s a bit stumped so far, which doesn’t give me confidence. I look at my vibrant, energetic little boy (our “Bear”, hence my screen name) and just cry. I can’t sleep, I can’t eat. I’m trying to learn and digest as much as I can and yet I feel so helpless.
Any stories of parents who have been down this road are greatly appreciated. I’ve been reading older posts and am already finding a smidge of comfort but would love to hear from others.
Thank you in advance.
Written by
BearMama0321
To view profiles and participate in discussions please or .
Have you tried getting a second opinion if,as you say, the present one is “stumped”? Maybe there is a possibility that he will improve as he grows or that a simple treatment will be available. If not, do feel reassured by his one kidney being normal - I have lived happily with one for 65 years since my right kidney was removed aged 12 after a poorly childhood with fevers and hospital admissions since birth. No clever scans in those days and no keyhole surgery. Lots of good luck wishes to you all.
Thank you so much. That’s all we want - for him the live a long, healthy life. Your story is inspiring!
We are considering a second opinion at Boston Children’s - talking to our pediatrician (who has been a great ally) on Friday.
His left kidney is close to normal size but not as big as the nephrologist would like, and his over kidney function is not good and declining over the past month. I’m worried whatever caused his right kidney to atrophy is rapidly doing the same to the left. And the PTH and high calcium makes me think there’s an endocrine component.
My son, age 2.5, has stage 3 CKD from PUV in utero. First I will say that Michael is the sunshine of our family. God knew we needed him & so did the world!
Michael has been hospitalized 4 times with kidney infections - the first one he went septic (scary stuff but we got him to hospital right away thanks be to God!). He's had 2 VCUG. (Stay strong, mama, it's a tough test.) Michael has grade 5 reflux bilaterally but since his bladder is so compromised from the damage in utero, urologist does not want to operate to correct it.
Big picture, his kidney function is stable for now & has been for over 2 years (eGfr is 50). We are concerned about the possibility of having to use a catheter to empty his bladder if has another kidney infection but trying to remind ourselves that God knows all things, even the number of hairs on our heads. He also knows when the inevitable kidney function decline will happen and when/ if Michael will need a kidney transplant. Tomorrow is guaranteed to none of us. Plus there are worse things than catheter use, which will become part of life if we have to get to that point. Stay strong and positive. Sometimes it's difficult to do that but force yourself!
On a practical note, I would for sure get a second opinion. Information is power and you never know if the new team might have seen this or something similar before. If you'd like to talk live, let me know and I would be happy to listen!
Thank you so much for sharing your & sweet Michael’s story. You’ve given me hope that I will still be able to enjoy my son despite a potential difficult road ahead. I can’t imagine your fear as you’ve navigated all of this with Michael but admire your faith and fortitude.
I will certainly keep this thread updated as we learn more.
My son was diagnosed with CKD at the age 2 years old . I know how hard it is to see your baby go through so much . Stay strong and pray !!! It make you feel helpless and question yourself and think what have done wrong . Do not let you mind take over , you hold your baby and pray over him also your 4 year old . It’s easier said then done but you can do anything through Christ who strengthens you!!! When my son was first diagnosed this blog was not around . This a great outlet to talk with parents. Your are doing a great job asking questions. You are his biggest advocate . Get a second opinion!!!
You’re welcome. He is doing well . Thank you for asking. He was born 25 weeks premature. Due to being so early his kidneys did not develop. My son was very lethargic, i had notice that his soft spot was always sunk in.Then he stopped eating, and had increased thirst. He could drink a 16 oz bottle of water and was still thirty. This was at 1 years old. I took him to numerous of times to the emergency room also to the PCP, gastrointestinal doctor . And each time they said nothing was wrong. I finally asked for blood work. My son sodium and creatinine was extremely high . The GI doctor called me immediately to take him to the hospital. In we was there for almost 3 weeks . He was not gaining weight at he was 17 pounds at 2 years old. At age 4 he was place on transplant list and transplant last August at age 5 . My son his been through a lot through prayer has kept me . I have had many breakdowns . So I understand your what you are going through. Keep us post on how your little man is doing!!
Thank you for sharing your and his journey. What an amazing story. I’m so glad to hear he’s doing well - and am amazed he carried on as well as he did as long as he did pre-transplant. I wouldn’t wish any of what you shared on anyone but am so grateful for you sharing it with me; it has truly given me so much hope for my son. I’m sending lots of prayers your/his way for continued good health. Thanks again.
You’re welcome. Thank you 🙏. I send prayers and blessings too your son/ to you and your family!! I’m glad that our journey has give you hope . He will be just fine !!!
Hi Bear Mama, it’s not an easy road and I’m very sorry to hear you have to go through this. We had similar experience. My boy (1 year old) was diagnosed in utero with left multicystic kidney, and we were told it is not functioning. His only chance is his right kidney, but it is not big enough (it should compensate in growth but it didn’t). His creatinine is 0.46 and cystatin C is 2.03. Other values are within normal limits. So far he had one severe UTI, which left the scar on his right kidney. We did VCUG when he was 3 months old and we are going to do it again in 2 months. Doctors can’t tell what’s exactly wrong with his right kidney, maybe nothing but it still isn’t big enough meaning it can’t support him for life. It will be enough for some time and in the future they expect it to fail. But how far into the future they can’t tell (except puberty is especially hard on the kidneys).
It is very upsetting going through diagnostics and learning what’s wrong. Me too had stopped eating and sleeping, I was like a sad drained zombie for a long time (and it started when I was 7 months pregnant, with him endings up in NICU right after birth and much more).
But as days go by, you come to accepting. You learn what are the options and realize that after all it is not death sentence. There are children living with this disease and they grow up and live fulfilled life. It’s not easy but once you accept it will become easier.
Thank you so much for sharing your/your son’s journey. I’m so sorry that we’re all in this club together. Your son’s situation sounds similar to mine except you’re a bit further down the road with testing and diagnosis. It is very frustrating to not know the reason why or what happened. Or what the future holds.
Is your son undergoing any treatment or dietary restrictions? How often do they monitor his labs? How is he doing day to day in general?
I’d love to stay in touch and will keep you and your son in my thoughts and prayers regardless.
I hear you, I was really annoyed because I didn’t have all the answers. As for why this happened, options are either it was environmental factor - since I had really bad flu while 5 weeks pregnant, or it is gene mutation. Doctors told us it is possible to do gene analysis but it is very hard to interpret results and come to definitive conclusion.
It is hard living with uncertainty. Knowing that every lab result can be the one where things go worse. But every time we hear something worse than before it requires some time to suck it in and adapt. This is what we do and we are getting better in it. It is definitely possible to enjoy life and enjoy your kid, no matter what.
He doesn’t have any treatment because his bloodwork is all good, meaning that kidney is still filtering his blood properly. He was on antibiotics for 3 months after the UTI. He is advised not to eat to much meat and dairy products because they are high in protein and phosphorus, so kidney would have to do more work. He is allowed 400ml milk a day. And I try to feed him plenty of fruits and vegetables (not easy).
We are doing bloodwork every 3 months. Creatinine is mostly in the same range but cystatin C went higher in last 6 months. In the future, when his values are more stable they will hopefully see us only twice a year.
That’s amazing to hear - that he’s stable! And, very much in line with our experience so far except they think my son’s kidneys were normal at birth. He did have a couple persistent viral infections around 7-8 months of age, and a pretty wild reaction to Augmentin for an ear infection, and he has cyclical fever syndrome (what led us to finding the atrophied kidney; they initially worked him up for leukemia - which was thankfully negative - but part of that workup involved a full abdominal ultrasound) - so we are pursuing genetics eval. That’s tomorrow, in fact.
I had extensive ultrasounds during pregnancy due to having cholestasis, and his kidneys always appeared normal/normal amniotic fluid pools, etc. So the theory is that this was due to an acute “injury” that was missed.
Your story has given me hope. I totally relate to the anxiety around every test but understanding that you’ve found a way for this to be your “new normal” and still have some degree of normalcy amidst all the worry is so reassuring. Thank you so much.
I’d love to stay in touch. I’m new to this community so I’m not entirely sure if there’s a way for us to exchange contact info but if you’re interested absolutely let me know. All the best to you & your son!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
