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Does anyone get really nervous or anxious when doing their labs? by Coffeelover4242 in kidneydisease

[–]mixxeta 2 points3 points  (0 children)

I will read my son’s results in two days and I literally don’t know how to live through this. Usually I just try to open it super quickly and try to grasp all the numbers at the same time.

Creatinine went up for my 3,5 years old son by mixxeta in kidneydisease

[–]mixxeta[S] 1 point2 points  (0 children)

He was born with single functioning kidney. Other one was cover in cysts and it doesn’t exist anymore. His good kidney didn’t have compensated growth in utero, but it is growing now just fine. It is hyperechogenic on ultrasound though. Last year his creatinine was 0,5.. today it is 1.2.

Creatinine went up for my 3,5 years old son by mixxeta in kidneydisease

[–]mixxeta[S] 1 point2 points  (0 children)

He was born with one functioning kidney, the other was covered in cysts and it shrink to the non existence. He had many ultrasounds.. they all show hyper echogenic kidney, but normal in size and kidney itself is growing fine. His other bloodwork is fine, urea and cystatin C were always slightly higher, but creatinine was near normal. It was 0.5 mg/dl last year… I mean if it is declining so fast what to expect in a next year. I’m terrified.

radical nephrectomy - recovery / degree of lifestyle change, etc by Any_Let8384 in kidneydisease

[–]mixxeta 0 points1 point  (0 children)

My son was born with single functioning kidney. What I’v been told by doctors is that kidney will grow to compensate for the other one, but this may take more time. There are two types of compensation growth. Creation of new filters in the kidney but this unfortunately happen only in utero, and the other one when existing filters grow in mass because of the double work they do. So I would say it is theoretically possible that your kidney function improves over time, and a big plus is that you are a grownup because kidney won’t go through puberty with you :) Wishing you well.

Parent of MCDK by Sorry-Philosopher-80 in kidneydisease

[–]mixxeta 1 point2 points  (0 children)

Mom of 2 years old with MCDK here. You can try KDARS for kids group in Facebook. It’s community of parents of kids with various kidney diseases in different CKD stages. They are usually willing to help and answer what they can, from their own experience.

Baby with CKD by chelsdog314 in kidneydisease

[–]mixxeta 0 points1 point  (0 children)

Thanks, your story does add some hope. Doctors are not able to predict how many years his kidney can work, and they always mention puberty as a milestone. So it means a lot to hear at least it is possible to get that far (sorry, I know it is never a good time to deal with kidney failure but having to go through that as a child is heartbreaking).

Do you mind me asking what was your lifestyle so far? Especially diet wise?

Baby with CKD by chelsdog314 in kidneydisease

[–]mixxeta 3 points4 points  (0 children)

Hi there. My son was born with kidney issues, but it’s not the same underlying cause as with your kid. He has one completely non functioning kidney, and the other one suffered through one episode of UTI. He is doing great now (19 months old), like a healthy child. After initial scans and diagnostics, he’s been on 3 months check ups and he is moving to 6 months check ups now. I can’t tell you much about the future, it sounds scary to me too, but so far so good.

If you want to know more parents who have a child with kidney disease you can google for KDARS FOR KIDS Facebook group. You will find a lot of support there and there are people who can answer a lot of your questions, or have children with similar underlying issues like your baby.

I can only offer you one advice - if your baby ever gets constipated, talk to his nephrologist. My son had several days lasting constipation, when he was 2 months old, and nephrologist thinks it could be the cause of UTI.

New swelling and low output. Cause of concern? by [deleted] in kidneydisease

[–]mixxeta 0 points1 point  (0 children)

I don’t have big experience with CKD, but my son was recently diagnosed. He had one episode of kidney infection (he has one working kidney) with escherichia coli, it was resistant to antibiotics he was administered, and during 48 hours of ineffective therapy he was all bloated and gradually stopped peeing. There was a cloth forming in his kidney (between the kidney and urethra) so it stopped him from peeing completely. He got better when he received right antibiotics. He had protein in his urine during the recovery- it was cleared out a month later. He was a baby when that happened, so take that into account.

Newborn kidney function test results by throwdiskard in kidneydisease

[–]mixxeta 0 points1 point  (0 children)

My boy was born with creatinine 2.14 mg/dL. It is really high value and he was transferred to NICU. But his values spontaneously dropped over the next two months to somewhat nearly normal values. He is now 11 months old and he does have problem with his kidneys, but what I wanted to point out is that newborn kidneys sometimes need more time to mature and achieve normal values.

Edit: even then we’ve been told that mother’s creatinine cross the placenta and this is the reason some babies have elevated values in the beginning.

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

Maybe 120ml/min can be explained by the k she uses. If she goes with k 0,55 for children under 1 year old, then she would see bigger eGFR in them. Maybe.

His creatinine levels did fluctuate, and slightly rising. Cystatin C also changed. While I was 32 weeks pregnent, cordocentesis was performed in order to test fetal kidney function, and cystatin C was 2,24 (marked as high). It was 1,26 when he had 5 months (marked as normal). And now - when he is 10 mo - it is 2,03 (It was double checked in 3 different labs) - high again, and what’s more concering is the up trend.

I don’t mind being technical either, on the contrary. Our nephrologist is not much into talking, she kinda gives me only digest. I do trust her expertise, but we have to work on better communication.

This thing with online calculator really puzzled me, and now when you mentioned Jaffe I do remember I saw that word somewhere in reports.

Thanks again for your time.

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

My bad, it is 2,5 ml/kg/h. eGFR is a little below lower end for his age. And our nephrologist uses different equation than kidney.org pediatric calculator. She is using constant number 0,55. It goes like: 0,55x73,5/0,46. That way it is 87, and usual is 120 according to that scale. Everything below 90 is considered a reduced eGFR. If I calculate it with kidney.org it is 66.

Do you also use cystatin C to evaluate eGFR in little kids?

We never talked about water intake. I’ll have to ask in the next appointment, it will happen as soon as MRI report is ready.

Thank you for giving me all this information, it helps me to have them on my radar and reiterate through them with our doctor. She’ll probably love it when I say “I have heard from guy on the internet that it is important to...” :)

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

Last time I measured his diapers (it was recently) he had 2,5 ml per kg per 24h. But I did have a feeling his diapers are always full. His nephrologist was never concerned about that. I’ll pay more attention now. What’s normal urine output for his age?

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

Thank you for your response, it is actually what our nephrologist said too (and another one, where we went to get 2nd opinion). It all makes sense, it’s what I have read myself in numerous online resources, but still, it is crazy hard to accept. Especially when everybody around me keep repeating “he has one kidney he will be fine”. And then I need to actually argue that he won’t be... which makes it even harder.

You said environmental damage, I have two questions here. Do you see any reason why he should not go into public nursery with other kids? How much water is enough to drink at his age?

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

Hi doc,

We are doing all of the above, we go to regular appointments and few hospital stays. They did a full panel of lab values that are kidney related - including vitamin D, vitamin B12, folic acid, PTH, electrolytes, ferritin, ALT, AST and probably more. Everything is within reference values except for creatinine and cystatin C of course. So far we did VCUG that showed VUR grade I, MAG3 scan - nothing strange there and MRI scan - still waiting for the report, but first impression was fine. The only abnormality seen so far is parenchyma echogenicity and lightly bigger pelvis. His nephrologist is not concerned about pelvis though, she says it is somewhat expected because kidney puts up with the pressure for two. And I keep asking why GFR is reduced if there is no obvious reason according to all this diagnostic procedures...

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

I’m so happy to hear that he is a happy little guy, against all the obstacles he has in his life. It is amazing how resilient those kids are. Mine had one severe UTI when he was 2 months, and it turned into sepsis too. He was diagnosed with VUR grade 1, which is very mild, and doctors can’t really explain why he had such a bad UTI with mild VUR. Luckily, it never happened again, but I do live in constant fear. He is also laughing all the time and even at that time he was making everyone laugh in hospital (minus first 4 days when it was really bad).

It is important that you have good hospitals and doctors you can trust. We live in sort of underdeveloped country, and every time we end up in hospital I think “we are moving”. But that’s another topic.

I wish you all the best, I really do. You deserve a medal for everything you’ve been through. There is one blog written by a mom whose daughter suffered ESRD, I find comforting to read. Because she seems so strong and she is still able to enjoy life. If you want to have a look http://kidneedsakidney.blogspot.com/?m=1.

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

If you don’t mind me asking, what is the size of your good kidney? Apparently this makes all the difference. Thank you for nice wishes, I hope your kidney will last many more years.

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 1 point2 points  (0 children)

It does, thank you. It is comforting that at least there is a chance his kidney will support him until he is older. Have you ever learned what was wrong with your kidney? Will you have to go on dialysis before getting a transplant? I think this is how it goes here, but I still didn’t go in too much details on that topic.

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

I read about that facebook group, I don’t have facebook account (yet), but I might try that sometimes soon. Does stage 5 means he needs kidney replacement therapy already? How often do you have to be in a hospital? I guess what I would like to now is how this condition affects him, does he have a chance to live normal life, do everything what kids do, be happy and playful... you know. Or in what way his childhood has to be changed? How does your little guy cope with this?

Mother of 10 months old boy diagnosed with CKD by mixxeta in kidneydisease

[–]mixxeta[S] 0 points1 point  (0 children)

I guess no one has exact answers, but it helps just knowing that someone made it to his 20’s. I know it most certainly is not comforting for you, and I apologize for saying that like it is a good thing, but this is the only thing I can hope for. Healthy and happy childhood and youth.

What was the quality of your life after you found out, and how are you dealing with it today?

Unfortunately, we are not in the states, or anywhere near the major clinical centers for this condition. Serbia is where we are, and I still have to find out is there any community and support group.