Today we'd like to hear how kidney disease has impacted the rest of your family.
Has there been an impact on other siblings? Partners? Parents?
Tell us about your experiences and interact in the replies section below.
What’s the impact been on the rest of... - Parents of Childr...
What’s the impact been on the rest of your family?
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Vesa
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26 Replies
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It has been very hard on my other children and our family. I have a 6 year old son who doesn't understand why his brother is sick all the time and cant play or go anywhere even with many explanations. My husband and I do not get any time together even a date night because we are unable to have that close family and friends who can take care of my son. but my son who is sick has come to the point in his life where he just wants to be left alone. I think he is very discouraged by no hope from the doctors or answers. which his dad and I are too.
Its understandable that there seems to be "no hope"..but there is! Medical advances are improving all the time and there will be a light at the end of your tunnel soon..dont give up hope! You're doing great! Keeping the kids involved has helped our family, maybe they could plan a "family night" or a "kids only night"..give them the chance to include each other..use that little time to sneak away (if only to another room) for a little mommy&daddy time. There is always a way, you just have to find a way that works for you and yours. Your child might be feeling a certain way right now because he is confused about everything. He should be able to speak freely and openly about those feelings, depression is something that sneaks in and is very hard to kick out. I'm not a professional anything, but have dealt with these issues a long time and just offering some advice that we found helpful. Remember, momma cant help anyone if she cant help herself..carve out a little time for you, whenever and wherever you can. Beat of luck to you all!
It was really hard on my other two when our youngest was born. He was in the NICU with complications for 5 weeks in a hospital that was 3 hours from our home. I was staying at the hospital with our youngest and the other two were at home with their dad and his parents helping, my older two were 2 and 4 years old at the time. After discharge he had appointments every 3-5 days and their was a lot of separation anxiety during that time as they thought we were going to stay for a lengthy amount of time again. They manage very well now that his treatment is more consistant. They are aware that he will need a transplant and are very protective of him sometimes.
As far as myself and my husbancd, it was very hard at first because he was on 10 medications that had to be given 4-5 times daily. I am the main caregiver and it was stressful to make sure he got all of his medications and continued to eat so he would grow. My husband is a great support, as is his family.
My son is recommended to have a low sodium diet so we all try to participate in that so he's not alone. It's affected us and his grandparents with always being concerned about him BC eventually, he will be more susceptible to kidney stones and pain. Like I said before, were also awaiting genetic results on some of the family to start linking this disease better. So the outcome of those, could potentially affect one side of my family.
Very difficult for us at the beginning. She was constantly sick, hurting and fatigued. As a parent, you dont want to see your child suffer. Biopsy and constant blood drawls caused fear for her and panic for us. It's hard to not know the future and when she can go downhill. Theres an underlying dread that you try to push away
At first it was scary and confusing and concerning for our family. My children are close in age so I think it made them feel his "pain" as they were so close to it. Having said that, we have always been very open with our emotions at our house, so we always have the chance to vent and rant about things that are "unfair" no matter what it was. I always tried to keep all my kids engaged in the present. For example, "everyone has something" was always spoken in my house. Just because today you feel sick there are still chores or homework or something that has to be done, figure out how to get it done. This is held for my non-chronic kids as well. This helped ease the frustration for my other kids and helped make my chronic child feel like he was still "part of the family". My kids were normal, they sometimes felt ignored, neglected and unheard..but they knew that they could speak it and they knew they were loved and supported. I also think it helped us to be more mindful of healthy eating habits and taking care if ourselves. Since my son was diagnosed so young it created a "lifestyle choice" that we still follow to this day.
Kidney disease has definitely had an impact on our entire family. “Luckily”, our daughter is our first and only child so we haven’t had to worry about other children at home (I couldn’t even imagine... props to the parents who have balanced it all - you’re amazing). We’ve spent A LOT of our daughter’s first couple of years in the hospital, at Drs appointments, treatments, therapy sessions, etc and each one of our family members has stepped up to help us more times than I can count. From visiting us when we’re admitted, to watching our dog, cooking meals, driving me in to visit when I couldn’t drive myself (after she was born and after donating my kidney to her) and even offering to be her kidney donor. There’s literally no way we could do this without them. Although this has been a difficult journey for all of us, I do think that it has brought us closer together as a family. Very thankful for that!
My middle child was only 3 when her brother was born and her mom and new brother began living in the hospital 2 hours away. She had a very rough time those first few years when I was gone so much and so much of our lives revolved around her brother. It's like normal sibling adjustments but times 10 because she really wasn't getting the attention she needed and deserved. 6 years later, she still struggles with things seeming unfair, and isn't quite yet able to see that fair doesn't mean equal. They both worry a LOT about their brother dying. For a while, my oldest was gaining a lot of weight that turned out to be stemming from overeating as a response to the anxiety he felt over his brother's health. 
Both the older kids have turned into very kind children who really don't see disabilities as any big deal, which is lovely to me as their mother. They're the kids who will play with the "different" kids at the playground without a second thought.
It's been hard on my husband and me. Not necessarily hard on our marriage in general, but definitely hard on us as individuals, and I think we both deal with stress in such different ways that we've grown into more separate people than we were before. I'm over here coping in my bubble and he's over there coping in his.
Since my son was diagnosed 14 months ago at age 16, it really hasn't effected my older son who is 19 and left for college 5 hours away, a few weeks after the diagnosis. The greatest impact on my husband and I has been the worrying, the watching, and the waiting ... for the disease to get worse. We are all trying to be as healthy as possible for when my son will need a kidney transplant - not sure who will be the best match. We try to take it day by day, but as all of parents of kids with health issues know, there's always that worry deep down that just doesn't go away.
Your feelings seem very similar to ours in terms of age of diagnosis. May I ask how it came to be and what stage your son is?
My son's urine turned the color of cola - no other signs or symptoms. Our first step was to take him to his primary care doctor who thought he had a urinary tract or kidney infection. She looped in my son's nephrologist right away, who sent him for more labs, an ultrasound and then a kidney biopsy which is when we got the diagnosis of IGAN. Since it came on pretty aggressively, he was put on a 7 month prednisone treatment, which did help, but his proteinera is getting worse at each appointment. My son is having his tonsils removed in two weeks in hopes that it will slow the progression of the disease down ... I have not asked what stage he's in ... I'm afraid to find out for myself, and not sure how my son will take the answer. He's next appointment with his nephrologist is the day before his tonsilectemy, so I'll try to ask. Can you tell me about your son's/daughter's journey?
Of course. My son is 15. He was born with MCDK and lost his right kidney to it. He was perfectly fine with the one kidney until about 2 years ago when i noticed his urine was VERY foamy. I had recently read that was a sign of proteinuria so I had his urine tested at the doctors office and it was very high in protein. So for the next year and half he was monitored by the nephrologist through MANY urine tests and bloodwork. Initially we though it was orthostatic proteinuria ( a benign form) but at the beginning of this year his numbers climbed and his GFR showed him functioning at 79% (which the doctor doesn't think is SO bad for 1 kidney), stage 2. they won't biopsy him because he only has one kidney. He is also prehypertensive. He is now taking BP meds for the kidney disease. He is on a low sodium diet. Next bloodwork is January which is hard to wait for. While we're doing everything we can to slow the progression, i feel like we just can't tell how fast it will progress and if having one kidney will make it progress faster?
I've never heard of the tonsil connection. Is it relative to infection?
Thank you for sharing your story.
So interesting - our stories are very similar! My son also was born with multi-cystic dysplastic kidney - discovered during an ultrasound when I was pregnant with him. I gave birth to him at a neo-natal hospital in case the cystic kidney was malfunctiioning and needed to come out right away. It turns out it was non-functioning, so they left it alone. My son did have kidney reflux though in his one functioning kidney, so he was put on sulpher drugs for the first 5 years of his life until it cleared up on its own. The cystic kidney atrophied over time and just left his body of its own accord. His remaining kidney also was fine until this all began 14 months ago. Our neph also did not want to perform the kidney biopsy due to solitary kidney, but she felt it was necessary to get an exact diagnosis and see what kind of damage his kidney had. We had a specialty team she recommended do the biopsy instead. I also question if having only one kidney will make it progress faster, but who can say for sure. My son's urine is so foamy it looks like a bubble bath - you cannot even see what color it is. Supposedly in Japan there is alot of IGA cases and having your tonsils removed is a course of action there - they have studies that show having your tonsils removed can either slow down the progression of the disease, or at least will help with not getting sick as often. I don't think they've done as many studies here in the US about it and if you google it, it shows it's controversial, but we spoke to our son't nephrologist about it and she said it's worth a try as she's seen studies showing it can help in some cases, but said it needs to be done very soon, before it gets worse. Here's one link: ncbi.nlm.nih.gov/pubmed/265..., but there are others out there too.
Holy cow! very similar! Something we learned during this process which my sons urologist never told us is that kids born with MCDK have a 30% chance of something happening to their good kidney. I never read anything on that. We were always told he would be ok with the one kidney. My son's MCDK kidney also found during pregnancy and also just absorbed into his body. He also had a bad testicle on the same side and had to have it removed before he was one. I personally feel that its related.
My son's urine is the same type of foamy...all i see is foam, sometimes an inch or 2 thick. I'm so glad that I noticed it that day and made a connection to the article I read.
Good luck with the getting the tonsils out. I hope it makes a difference for him. Please keep us posted.
I never heard about kids with MCDK having a 30% chance of something happening to the good kidney either - so much we don't know! Thank you for sharing your story with me and I would like to keep in contact as our cases are so similar. Have you joined the FB blog 'Children with Iga nephropathy & HS Purpura'? I have found it very helpful and we can keep in contact - it's a private group, so only the members will see anything we post.
I have not seen that group. But I am in a Kidney Disease Awareness group. I'll look for the one you mention. And yes! lets keep in contact. What state are you in? We are in NJ.
Hi - this was posted today on the IGA/Berger's Disease FB blog and thought I'd share it with you: healthline.com/health/iga-n.... I was a little surprised at the percentage of people they claim that the disease does not progress to anything serious.
Where do I start? My two other children aren't getting my attention. I really have to work at giving them some time. The kids fight a lot because my daughter is already so irritable from the steroids. My husband is amazing and has so much more patience than me--God bless him-- but after a long day of work and then trying to get our kids to bed, we both pass out and have hardly any time together. It's emotionally draining.
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Our daughter's illness was very difficult for our family. She was diagnosed at 3 months of age and her old sister (2 1/2 years old) needed a lot of attention. Our family relocated for three years to a different state to give her the very best care. The move was very hard on all of us, but we did move to where the girls' grandparents were and they were hugely helpful. We enrolled our older daughter in a full-day preschool so she would have her own life and friends. I spent most of my time at the hospital with my younger daughter doing pre-transplant dialysis. Our family then relocated for 3 months again to another state for her double transplant. Luckily, the girls' grandparents were able to go with us to help with our older daughter. Our daughter's illness affected all of us a lot. We were stressed, worried, exhausted, etc. It was hard to find time for me, my husband, my older daughter, other family, friends or anything else. But, slowly over time post-transplant life got more and more normal. I find myself watching each milestone pass (e.g., going to pre-school, playing sports, sleepovers, etc. and I am grateful for our new normal.
We have 5 children, so my kids already battle for attention at times, but when my son was diagnosed, it was a whole new level. It has gotten better as the shocks worn off, we've learned more about Nephrotic Syndrome and its become more day to day life. We are all trying to eat less sodium so my son doesn't feel left out, which is extremely hard for the kids. But now our biggest impact is dealing with his mood swings from the steroids. Overall the siblings are very understanding, and we make sure we do special things just for them as well.
It has had a significant impact on my family. For me particularly I became extremely anxious and searched and searched to see what could be done to “fix” this. When I finally came to the conclusion that this would probably be a life long condition for my daughter I became very sad. It was like going through a grief cycle. For our family we have been adjusting to low sodium and not eating out as much as we did in the past. My other children are younger and don’t completely understand the concept of kidney disease but they are very conscious of the fact that we have to be low sodium and constantly remind me, or act like the food police around my daughter. My husband has been the rock in all of this which had been wonderful and sometimes I get frustrated at his optimism. I am living and seeing the reality of this, every morning when my daughter has to check her urine and take her medicine. Dealing with the complaining and frustrations she has about medicine and urine sample. Don’t get me started on the constant lab work. My poor child has been poked so many times in the last three months and what makes it worse is that they always have a difficult time finding a vein so dealing with multiple needle sticks or moving the needle around and seeing the pain and bravery in my child’s eyes is heart breaking as a mom. I am thankful for a good support system of family and friends who have been very attentive and helpful. However, the constant fear,worry that things will get worse is always there as much as I try to be hopeful and positive.
Our son is our first (and only) child. When he was born and diagnosed, and my husband and I were confirmed carriers of the NPHS1 gene, we learned that any future child would have a 1:4 chance of also being born with Congenital Nephrotic Syndrome of the Finnish type. This information certainly affected the rest of our family plans; we decided that we wouldn't try for any additional children. While our son is our greatest joy and biggest blessing, my husband and I decided that we wouldn't grow our family biologically.
As far as the relatives are concerned, they have adjusted to the "normalcy" of our son's life as a kidney transplant recipient, but the early days were very tough for them (dialysis/feeding tubes/pre-transplant days). No one was sure how to act around us, around him as a baby, afraid to touch him and get him sick or hurt his g-tube/PD cath ... He was the first born grandchild on both my husband's and my side. Great expectations for the first-born and it was a lot of adjustment for everyone!
In normal day to day life, we have a pretty normal situation. However, during this last relapse, we have really felt the effects. My youngest is only four and has had to spend time away with other family members while my son was admitted to the hospital. It was very hard on us all. I have had some bad anxiety during the past month or so due to the relapse and also some other things in my life. All in all, we deal with the disease the best we can, and I think we do a decent job.
My daughters diagnosis let to me own diagnosis so that was a positive. Our biggest concern was the possibility of having another child with this disease if we choose to have more children. We also consistently remind those close to our family, that our we try to limit sodium in her diet for medical reasons, and though they feel its not a big deal, it is.
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