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  • Support other parents with kids ESRD

    I would like to share some information or discuss with other parents who have children or babies on Peritoneal Dialysis or who need a kidney transplant. I have had lots of experience with PD and transplant. No I am not a doctor but I was a parent of a child who was on PD and had a kidney transplant.
    kidsonpdialysis-subscribe@yahoogroups.com
    teresaavent30@yahoo.com

  • #2
    Re: Support other parents with kids ESRD

    We just found out 5 days ago that our 13 YO daughter has ESRD (10% function). No real warning signs, no notice.. she had the surgery to put in the PD cath last Thursday and Childrens plans to begin dialysis and training tomorrow.

    I am absolutely terrified. Any advice or comfort you have as we begin this long process would be so appreciated. I just want my girl to have a normal life, or as normal as possible in this situation.

    Many thanks.

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    • #3
      Re: Support other parents with kids ESRD

      You should, or better yet have your daughter, go to www.kidneyfun.net. Shay, the woman who runs the site is just 21. She recently got a transplant but before that she was on PD. She can give your daughter tips on all aspects of PD including how to hide your tubing so that you look okay in a bikini! She is a wonderful young woman and enjoys helping newbies. I believe she is going on a short vacation soon, though, so don't be discouraged if you go to her site and it takes her a while to reply. Your daughter will also enjoy the site because there are lots of games there. For you, there are several parents of children with kidney disease at www.kidney-friends.net. This information is not to imply that you are not in the right place to get information and support. The people on this site are wonderfully supportive and you can get answers to almost any question here, I just thought those two sites might also be of help to you. You might also want to go to www.kidneyschool.org. They have a whole tutorial on all aspects of kidney disease and its treatment including the diet, how to interpret test results, medications, and so on. I hope this information will help you and that I will see you back here often.
      To the stars through difficulty!

      Comment


      • #4
        Re: Support other parents with kids ESRD

        Hi,
        My heart goes out to you, 10months ago the same thing happened to my 16 year old son,no warning or anything.The absolute shock was devastating,he is on peritoneal dialysis which we do at home at first it was three times a day now it's four, we cope very well with it, he goes out and has just finished school he did fantastic in his final exams in school, works part time and attends college, I would say he does as well as any other child his age.
        We have followed all what we have been told on how to do the dialysis,we always do this together, as it was such a shock for him at first he blamed me for it because he was upset but I knew he didn't mean this and if anything now we are closer than ever I give him all the support I could possibly give to him, he is so positive but so am I, next week he is starting driving lessons, believe me you quickly adapt,I know it's such a massive upset for you but it does get easier, if you saw him you wouldn't believe he has esrf as he looks so well of the treatment and he is well.
        At first when we were told our news we thought that how are we going to cope but you do,you find emotionally you go through differant stages and it does help to talk, I hope this as been of some help for you take care x

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        • #5
          Re: Support other parents with kids ESRD

          Thank you for your support. PD has been hit/miss so far, as my daughter's catheter wound is healing slowly (still leaking.) Her labs are good, though and she is back at school now. It's good to know that other kids with ESRD continue to have a normal life. Are your kids thinking about transplantation at all? That's all my daughter can talk about, but our nephrologist wants to wait a little first.

          I will definitely check out the websites you mentioned.

          Comment


          • #6
            Re: Support other parents with kids ESRD

            Why is your daughter's nephrologist not having her evaluated for transplant. The wait for a kidney is so long that the sooner the process is begun, the better. If she has a living donor, the process of evaluation of both donor and recipient takes quite a long time to accomplish. Children get transplants all the time, so it can't be her age.
            To the stars through difficulty!

            Comment


            • #7
              Re: Support other parents with kids ESRD

              The transplantation team will begin talking with us at the beginning of the year. Children's Hospital prefers to start their pediatric ESRD patients on dialysis to stabilize them first. They have also found they have a higher compliance rate with their transplants if they've been on dialysis for a few months first.

              We have a clinic visit next Monday, so I will ask about getting on the list. We have several family members who have stepped forward to be tested for a kidney donation. Thank you for your concern and for alerting me to this issue. Transplantation is definitely our long-term modality of choice.

              I am not having a good day today (just feeling overwhelmed again). It just seems so surreal that my wonderful, beautiful daughter, who looks so healthy and is so active, could be so sick. We have had to gradually work up on her PD fill volumes (due to some perceived catheter wound leaking problems) and since we've started increasing her fill volumes, her feet have started swelling, which hurts her. We used a 2.5% solution one night, and it did seem to help, but I know there are other problems that come with using the higher solution, and I'm afraid.

              We're trying to do everything just right...managing her diet, making sure she is compliant with her meds, following the PD schedule to the letter...it just is so frustrating that she is still isn't feeling good. I know PD was the right choice for us, but I guess I foolishly thought that we would do it right, and she would be "all better." (sigh) Apparently not, though.

              Thank you for listening. It helps to know that there is someone out there who understands just how terrible this is.

              Comment


              • #8
                Re: Support other parents with kids ESRD

                One of the reasons this site exists is so that members can vent when they need to. So, no need to apologize. Seeing a child sick is a very hard thing, especially if being very compliant with treatments is not achieving the desired result. Talk with your daughter's doctor and PD nurse about your concerns. By manipulating her fill levels and dialysate you should be able to improve things some, at least. Come back often. We are here to support you.
                To the stars through difficulty!

                Comment


                • #9
                  Re: Support other parents with kids ESRD

                  Thanks, Chefnancy! I appreciate the encouragement.

                  BTW--did you know your tagline is the motto of the State of Kansas? (Ad Astra per Aspera)

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                  • #10
                    Re: Support other parents with kids ESRD

                    Yes, I know that. That is why I chose it. I am originally from Kansas and that attitude was instilled in me from a young age.
                    To the stars through difficulty!

                    Comment


                    • #11
                      Re: Support other parents with kids ESRD

                      Proud graduate of Fredonia High School.

                      Comment


                      • #12
                        Re: Support other parents with kids ESRD

                        Long ago and far away, when I was on the debate team at Wichita East, we used to debate your high school. You had a very good debate team in those days (1961-64).
                        To the stars through difficulty!

                        Comment


                        • #13
                          Re: Support other parents with kids ESRD

                          QUOTE=COHippyGirl;15391]The transplantation team will begin talking with us at the beginning of the year. Children's Hospital prefers to start their pediatric ESRD patients on dialysis to stabilize them first. They have also found they have a higher compliance rate with their transplants if they've been on dialysis for a few months first.

                          We have a clinic visit next Monday, so I will ask about getting on the list. We have several family members who have stepped forward to be tested for a kidney donation. Thank you for your concern and for alerting me to this issue. Transplantation is definitely our long-term modality of choice.

                          I am not having a good day today (just feeling overwhelmed again). It just seems so surreal that my wonderful, beautiful daughter, who looks so healthy and is so active, could be so sick. We have had to gradually work up on her PD fill volumes (due to some perceived catheter wound leaking problems) and since we've started increasing her fill volumes, her feet have started swelling, which hurts her. We used a 2.5% solution one night, and it did seem to help, but I know there are other problems that come with using the higher solution, and I'm afraid.

                          We're trying to do everything just right...managing her diet, making sure she is compliant with her meds, following the PD schedule to the letter...it just is so frustrating that she is still isn't feeling good. I know PD was the right choice for us, but I guess I foolishly thought that we would do it right, and she would be "all better." (sigh) Apparently not, though.

                          Thank you for listening. It helps to know that there is someone out there who understands just how terrible this is.[/QUOTE]

                          Hi,I still get overwhelmed myself and it's nearly twelve months since my son was diagnosed,it is hard at first because we are having to deal with something that we never expected and seeing your child so poorly is devastating,Nathan was a couple of months on diayalsis before he started looking and feeling so much better,he looks more healthy than me now and has loads of energy you would never know his condition,it does get easier.
                          Nathan is starting the home choice machine tomorrow so we have been having some short training for that so all his dialysis will be done overnight I am uncertain about the machine and upset to see him hooked up to a machine but hopefully not for long as we are hoping for his transplant next summer,he has three matches myself his older brother and his dad and if everything goes ok with the rest of the testing Nathan will be having one of my kidneys and I am terrified, although I am
                          sure deep down that everything will be ok.
                          When he was first admitted into hospital he was on about twenty tablets a day and epo twice a week his blood pressure then was 240 it is now around 115 and he can now start to come off some of his bp medication so i am pleased about that as they really struggled to get his bp under control but that's another hurdle we are coming through as that was a worry.
                          It takes a long time to accept what as happened and it really winds me up when people say you have to keep strong for him because sometimes we don't feel strong at all I keep trying to tell myself how lucky we are to have him he is always laughing and puts a lot into his life everything he does he does well and I am so proud of him this illness dosen't hold him back if anything he has a real determination and drive.
                          As a mum I know where your coming from and sometimes you just need someone who is experiencing a similar situation I did I still do, when I look at Nathan and how good he looks I know it's all down to us and it helps.
                          Take care x

                          Comment


                          • #14
                            Hello! I am new to this site. I have a 5 month old son that has ESRD. He has had both his kidneys removed (one when he was just 2 days old) We have been on a long and stressful journey. We are now home from the hospital for over a month and enjoying every minute of it! He does PD dialysis every night for 12 hours. Things have been going pretty well but it just so stressful. Not only are we dealing with kidney issues and PD but we also have normal baby things. (development, bottle feeding, etc) We are having a great deal of trouble with bottle feeding. He was taking a bottle great and eating about 1/2 by mouth and just in the last week, he does not act interested at all in the bottle. He has a feeding tube so we are able to get the proper nutrition but has anyone else had this issue?? Any advice is greatly appreciated!

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