Hi!
I am the mom of a pediatric PD patient. She has been on PD for over 2 years and we are on the list for a kidney transplant.
Are there any other parents of young children out there???
Tara
Melbourne, FL
i have know idea how being a mother of of young child with esrd would be , i find it tough with someone much older, i hope that the kidney comes in for your child real soon, theres not to much more to say except that i know its extremely hard, its the hardest thing i have ever went through , i feel selfish sometimes because i think of how hard it is for us caretakers, i cant imagine actually doing it , but everyday we sit by and watch as our loved ones hookup and unhook so that they can have a life. i hope you are dealing with this in a much better way than i am.
thank you for your concern!
my daughter got ill after a measles, mumps and rubella vaccination at the age of 15 months. since then, we have dealt with the multiple hospitalizations, the over 2 years of dialysis, and a close call with death.
unfortunately, i am unable to work since i don’t know what will happen from one day to the next… i am a full-time student working towards a degree in forensic science.
meanwhile, my daughter goes to school at a private school that has only 53 children from grades preschool through grade 6. the tuition for her is steep, but it is the only way that i can get her an education without taking too many risks. our local school district will fail a child for missing 15 days or more of school… that doesn’t work into our schedule! she misses too many days with hospitalization, let alone normal sicknesses.
i know what you mean about feeling selfish… the benefit for me (and heartbreaking, also) is that my daughter really doesn’t know or remember life without a dialysis machine and hospitalizations. she is a really strong girl and i know that this is making her even stronger.
we are patiently awaiting a kidney transplant, but we have been told that it could take anywhere from 8 months to a year for a donor kidney. luckily, she is not that emergent and is doing pretty well.
i hope things go well for you. it is hard as a caretaker. sometimes, i get into the phase where i think of how much of a hardship it is for us… no vacations, long trips, etc. but then i think that she is still with us, and that is all that matters.
Tara C
Melbourne, FL
Hi tara I’am a 22yr. old female who was diagnosiesd with kidney failure at the age of 11. I was fortunate to have a transplant when I was 13 but it only lasted 8 1/2 years. I have been on dialysis ever since. I know what you must be going through and I know my mother would be willing to talk with you and so would I reguarding the transplantation and any other questions you might have. I know it helps when you can ask someone that has experience first hand instead of asking doctors who give you the run around…Also was curious where you are listed for the transplant? Reason I ask I live in florida and are familiar with most the transplant hospitals. If you would like to talk my email is jessica_4820@yahoo.com You and your family are in my prayers.
Wishing you well,
Jessica
It is stressful being a parent and having a child with a chronic illness can add to the normal stress of parenting. However, it’s also important to try to let (and even encourage) your child to live as normal a life as possible. I am a social worker worker and have known a number of adults who developed kidney disease as children. I hope that you are talking with the social worker at your child’s dialysis clinic about your stresses. The social worker may be able to suggest things you can do to reduce stress. Also, since many children doing dialysis are on PD, your child’s social worker should be able to link you with other parents of children on PD.
I’ve known quite a few youth with kidney disease who that grew up to be independent adults. In talking with them there seems to be a common theme. They were the ones whose parents had expectations for them to do normal childhood activities, household chores, attend school, do homework, spend time with friends, etc. They were not treated special because of their illness.
One such adult who was the youngest child to start PD in California years ago is Lori Hartwell. Lori has posted messages on this message board about her Renal Support Network annual meeting. She started the RSN several years ago, has a directory of patients in CA that offer support to one another, organizes a prom for teens with kidney disease each year (with celebrities), offers instruction in patient advocacy, manages a couple of websites, and much more. See www.renalnetwork.org or www.lorihartwell.com. She wrote a great book called “Chronically Happy” that might also be a resource for you.
Finally, the statement that the school system only lets someone miss a certain number of days before failing them doesn’t take into account the law that was established to require schools to provide individualized education programs for children with disabilities. The law is called the Individuals with Disabilities Education Act (www.ed.gov/parents/needs/speced/iepguide/index.html). Public and private schools are supposed to evaluate children to see if they have disabilities (kidney disease is considered potentially disabling by Social Security). Schools are required to develop a plan with the parent and others to assure that children with disabilities get the education they need to eventually transition to being a healthy, happy, productive adult.