Need to talk to mums/dads who have children that suffer from nephrotic syndrome

Kidney and urinary tract
1

Hi I just joined the group I have a 4 year old daughter with nephrotic syndrome I have been looking for a group since she was diagnosed. I'm from South Wales and as far as I know ther is a very small amount of children with the same  condition. I'm a nervous wreck with what happens or doesn't  happen to LILLIE she just takes it all in her stride she is so brave she takes all the needles and mess in her stride I'm in floods of tears and she is still smileing. Am I the only wreck of a mum or do u all feel the same??? X

2

Hello I know exactly how you feel. My little one was diagnosed with this about 2 years ago and has frequent relapses. He gets put on a high amount of steroids for about 5 weeks and then is off them for 7 weeks and then has a relapse. I'm just hoping he will outgrow this

3

That sounds like my little one its a heartbreaker to see them Ill constantly isn't it. I'm keeping my fingers crossed that LILLIE will out grow it too. Thanks for writing to me hope ur little one is good xx

4

My son just turn 4 and it's been a year that we found out he had nephrotic syndrome he relapse 4 times already and it only happens when he get sick n that's every 2 to 3 months

5

That sounds the same as my little one as soon as she is ill she relapsed so I feel I am constantly panicking if she is around any children in school tha are poorly.. it's her 5th Birthday on the 25 oct and every year on her birthday she hasn't been poorly so I am hoping that this year she will be well poor little thing she never complains she said such a brave girl.. thanks all for sharing your stories and feelings with me I feel like I'm on my own as I don't have anyone close that can relate to our ways xx

 

6

It's worrying they are so brave hope he's doing good now xx

7

Thanks

8

I understand that's how I feel its not like we can put them in a bubble and I hope she enjoys her 5th birthday and they are so strong they dont understand what's going on and just to see my lil guy still run around and have a smile makes my day I have family around but still feel alone prayers for your lil one

9

Hi sian, im going through the same my son was diagnosed with nephrotic syndrome on the 25th october 2016 hes only just turned 5 years old. Im scared stiff what will happen on the future. They discharged him from hospital after being in for over a week even though his protein was still above 4, he had two albumin infusions while he was in hospital which took some of the swelling down. We have been told that he has a very enlarged liver, pleural effusions asites and that we need to monitor him closely. Since leaving hospital he is still on 50mls of pred daily his protein has come down to a trace but he looks so different from the skinny little kid he used to be. Im a nurse my self and i am struggling to understand how this has happened to him. He is scared and asks me if he is going to die. My heart is torn and i dont feel that the hospital are very supportive as the only appointment i have been given for my son is in january 2017.

i have been given open access to the childrens ward.I dont know of any parent groups in south wales. We have been told it is a rare condition and he has to take each day as it comes.

10

Hi there. My son was diagnosed in Jan 2015. Unfortunately he has never managed to get off steroids as he always relapses before we get to that stage. Tried Cyclophosphamide and now Ciclosporine. Constant worry especially with the added chickenpox concerns.

11

Dear Sianfeff,

                        One fact is certain it's not the fault of the parents. Or anyone else for that matter. These are just things that go wrong for an unknown reason. I've had this conditiion all my life, didn't grow out of it and I'm still kicking and annoying. I too am from the land of Rebecca and Sospan. It is hard and disheartening but we see great courage in life too. Tell you what, sounds like your doing a great job . E

12

Hi,

my 3.5 old daughter has been diagnosed with NS 3 weeks ago.

and yes iam very stress and Nervous every day.

what a nasty syndrome?

what nedication is your daughter?

just noticed this message was sent 10 months ago.

hope all is getting better 

speak soon

13

It is stressful at first. My son has has three relapses already. Hes still on high dose steroids. He hasnt been able to come off them yet. We tried Cyclophosphamide (chemo tablets) but he relapsed after we finnished it.

We have recently taken the decision to try CBD oil for a trial along side the steroid treatment. Fingers crossed we will get a good result.

The main thing my family has realised since october is there are lots of families out there living with this condition. Hopefully our children will out grow it but if they dont it is treatable. My sons nephrologist in UHW is amazing and is at the end of the phone if any concerns arise. Keep positive i hope your daughter gets control quickly. The changes you will notice i.e swelling does get better as they reduce the steroids. Always available if you need a chat x

14

Hi,

I see that this is an old post so I hope someone still replies back to me! My nephew is 2 years and 3 months and was just diagnosed with nephrotic syndrome last week. We are all shocked with this diagnosis , it’s hard to manage it for a such a young little boy. He’s not even potty trained so it makes it harder to check his urine. He has taken steroid for 5 days now. However we haven’t seen any result yet. His eyes are still puffy. As a matter of fact we noticed 2 days ago that his scrotum  is now swollen. How long does it take for swelling to go down after start of steroid? And has anyone seen scrotum swelling with this condition?

15

Hi, I am interested to know how the CBD worked, we are in the same boat and are considering this route.