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Author Topic: For those of us with kids at home - how does your kidney failure effect your kid  (Read 1235 times)
WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« on: February 13, 2011, 05:16:11 AM »

My son is 13.  I've been sick since he was 8 and on dialysis since he was 10.  Sometimes I worry about how my health is influencing his childhood.  What are your thoughts and experiences?
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lola
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« Reply #1 on: February 13, 2011, 06:09:20 AM »

our son is also 13 and has been having a really hard time, granted Otto has been having a really hard couple years with complications. I think it sucks big time that there are no support groups for kids who have a parent with ESRD and have told our social worker they really need to start something.
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gothiclovemonkey
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« Reply #2 on: February 13, 2011, 08:46:00 AM »

My son is 6, and i found out about my kidney problems when he was born, started d when he was 3. He seems very understanding, but i feel terrible that i cant play with him as much as id like. Also, I fear that my sickness is effecting him mentally. And since I am single parent, i feel he probably doesnt get as much attention, like when im in the hospital, or really feeling crappy, as i would like. I have him in therapy, just so he has that as an outlet. There really are no outlets for children Re: kidney failure. and there are no services that help with childcare or anything like that around here, for while im doing treatments. (luckily my father retired this year, so now i have him to help watch him during my treatments!)

Its scary and sad, I want the best for my child, and I often feel he would be better off with someone else. But I know he knows I love him very much, and I do try very hard. Hes a big helper, and very understanding. He gives me strength to survive. I wish I could be more healthy for him though. I try not to let him know when im not feeling well. I grew up with a very sick mother, and it scares me that one day he will find me, as I found my mother, dead.

I write to him every day, in a notebook, random things, things we did that day, things he said, or did, that i want him to know or remember. That way if something happens, he will always have that. Little love notes, and quotes, and advice for his future...

Im very blessed with him, hes an amazing, smart little boy, and like i said, hes very understanding. Even when im not feeling well he and i will snuggle up and watch a movie, or ill tickle him (we call it "tickle fights") or play a game.


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"Imagine how important death must be to have a prerequisite such as life" Unknown
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WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #3 on: February 13, 2011, 09:08:12 AM »

Concerned.

I made my son go skiing with the Boy Scouts.  He likes Ski Club at his school and he likes Boy Scouts, but for some reason he did not want to go on today's ski adventure with the scouts.  I made him go, and now I'm worried about him having a good time!  Because I'm not nearly as active as I'd like to be, I worry that my 13 year old son does way too much sitting around playing video games and such.  I think if I felt better we'd all be out doing more activities!  So I tend to make him go do things sometimes.  Usually he has a good time and is glad he went....usually.....
 

I posted this on another thread today....  He's on my mind!
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gothiclovemonkey
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« Reply #4 on: February 13, 2011, 09:56:38 AM »

im a mean mommy, i wont let my son play vid games very much, and i am starting to limit his movie time (we dont have cable!) and I have him read more now, now that he has begun to read! I want my sons mind to expland, and i let him to some "outdoor" activities in his room, just so he can have the active-ness?
If i had my way we wouldnt even own a tv...
I am hoping after the parathyroid removal i may feel a bit bette, and be able to do more...
It really is hard to get him interested in playing, he was a preemie, and he has alot of issues. Alot of other kids dont know how to take him... So we really dont have many people in our life to play with.

Its good that u "make" ur kid get out and enjoy life, its important. I cant wait til my son is old enough to do the Boy Scouts and all that other stuff! I think that will help him alot, to cope with me being unwell

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"Imagine how important death must be to have a prerequisite such as life" Unknown
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WishIKnew
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« Reply #5 on: February 13, 2011, 10:45:59 AM »

My son started Cub Scouts in first grade and has been in scouts since.  I will say that Cub Scouts here was nothing compaired to Boy Scouts (which they can bridge to in 5th grade) and my son really only did Cub Scouts because his friends did too.  His friends have dropped away from scouting over the years but my son is really into it now!

He was a preemie too - 8 weeks early and 3 lbs 8 oz.  They knew he'd be early because of my kidney health (or lack there of) so I go shots to help his lungs develop early.  He was pretty healthy considering how early he was.  He struggled early in school - very late reader among other things.  He went to a private school for kids with learning differences for 4th, 5th, and 6th grade and now is back in public school doing very well!

Anyway, each day we all try to balance our health and our duties and our desires.  I think my son is much more sensitive to the needs of others and to "hidden" disabilities both because of my health and his learning challenges....
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-Lady Noir-
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« Reply #6 on: February 13, 2011, 11:12:39 AM »

Our daughter is 5, and started school just before Mike got his transplant. She understood as much as a 5 year old could about why he had to have a transplant, and why he was on dialysis ect. She would constantly ask Mike if he's taken his pills, and tell people that Daddy isn't allowed to do this, or do that. So i really don't know how it's affecting her at this point in time. She just seems happy in her little world. Every child is different and i think it depends on age & experience with it all. Shes seen him go through many operations, especially when she was at Kindergarten, and i'm still suprised how much she can recall about it, even though she was only 3.
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
Sunny
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Sunny

« Reply #7 on: February 15, 2011, 01:17:07 AM »

       My son was 11 and my daughter 9 when I was diagnosed with kidney disease. He is now 21 and she is 20 (18 months apart). In those ten years I think they learned to be very sensitive and caring individuals, always intuitive of others' feelings and well being. This characteristic is probably one of their most endearing qualities and I see it in use everday in their dealings with life. My health has been hard on them at times over the years, but their resiliency and ability to get on with their own lives is amazing. They never ceased to suprise me with their own capabilities and I've always encouraged them to live their lives. I wanted to ease your mind a little about your children.
       
       
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Sunny, 49 year old female
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Des
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« Reply #8 on: February 15, 2011, 02:50:09 AM »

This is a very big problem for me.... I have 3 teens 2x17 and 1x19 so I have been doing D for a year now and I feel so guilty as I am not there for them as much as used to be.

I work full time and then spend 3 nights a week at dialysis. When I get home they are in bed so I miss out on all the day to day "events" in there lives as now they share there day with Hubby. I actually miss them teribly and wish that I can be there more. I try to spend time over week-ends but they are mostly busy with sport / friends and shcool work.  Last Friday my son just pictched at the unit , he told his dad that he has urgent work that he needed my help but that was a lie - he spent the 2hours chatting about hockey and school.   I think he just needed to talk to me.  :'(

So I think they miss me too.  :(
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
WishIKnew
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« Reply #9 on: February 15, 2011, 05:06:26 AM »

I really appreciate your input here!  I think about how my health effect my son's childhood so much!
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billmoria
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« Reply #10 on: February 15, 2011, 01:02:57 PM »

What kids need most is love. With that they can handle almost anything.
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WMoriarty
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« Reply #11 on: February 15, 2011, 02:30:31 PM »

My son hasn't handled it well at all. He's 9. When I went into kidney failure 6 months ago he didnt take well to it at all. He's autistic which makes this another challenge already on top of another challenge so to speak. He has a lot of mood swings at home. At school-he's great. My daughters have coped well but my son, no.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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