Kids with CKD

[peachymomma]

Hi all! Want to start a thread for parents of children with CKD. (Chronic Kidney Disease) A place for everyone to share their stories,experience, and advice. I have 2 kids. A 6 and a half year old son with Autism, and an 8 and a half year old daughter with bilateral renal hypoplasia. Currently her function is at stage-3. She will require transplant in the future. She is taking 2 blood pressure medications, and another for para-thyroid disease (which she developed due to the kidney disease). She is pretty good about taking her meds, but is getting at an age where she notices not everyone else has to take them. Is anyone else out there at the point of dialysis, or transplant yet? Would love to hear how you and child coped with those situations.

 

[purplerat]

Hello my son William has polycystic kidney disease (ARPKD) and is now 2 and a half. He is at stage 4 to 5 and is having his transplant on September 4th from his daddy at Great Ormond Street. He is also on medications for his blood pressure, iron, vitamins and is tube fed. It's been difficult with many hospital stays as any normal cold can wipe him out. He also has a blood sugar condition called Hyperinsulinism which is the opposite of diabetes which doesn't help. Where are you seen? Will is still small enough to not know he is different and is very good and seems to take all the appointments and medications in his stride . I am hoping he won't remember how he feels before his transplant as he gets older I have another son who is just 3 months old and luckily clear of the disease, there was a 1 in 4 chance he would have it too. X

 

[peachymomma]

Welcome to my little thread, Purplerat! Doesn't seem to be a whole lot of other ckd kids here. My daughter is treated at Nationwide Children's Hospital in Ohio. That's wonderful that your son's father is able to donate a kidney. I'd love for you to keep me updated on the process. That is just around the corner. I really hope all goes VERY well with your son's surgery. And he and his father have speedy recovery's.

 

[purplerat]

Thank you very much, I will keep you updated. The surgery has been pushed back to the 18th September as we need an extra test to be carried out. Its frustrating but in the long run only an extra 2 weeks to wait x

 

[1stTIMER86]

Hi, hope you don't mind if i join. My daughter was born with ARPKD also. She was given a very limited chance of survival, had her kidneys removed and commenced peritoneal dialysis at 11 days old. she finally came home with us at 5 months old after spending her first 3 months on life support due to underdeveloped lungs. during which time she underwent many hurdle including losing her hearing. she is currently a happy 15 month old who gets dialysed at home on a nightly basis and are trying to get big enough for a transplant hopefully by the age of 2. i have a Facebook page created for her if you would like to take a look

www.facebook.com/KidneyAChance

 

[peachymomma]

Welcome 1stTimer! I'm sorry to hear of the struggles that you and your LO have gone through. These kids are fighters! If it gives you any encouragement my daughter was a 29 week premie. She was given a 0% chance of survival. The doctors wanted me to end the pregnancy at 20 weeks,saying and I quote..."The fetus you are carrying is not compatible with life." When she was born she was in end stage renal failure, they gave her less than 2 weeks to live. Slowly her kidney function improved as she matured a little more. She will celebrate her 9th birthday in January. There's been struggles, and she will need a kidney transplant, but she's a survivor. Every bit of the pain and hardship has been worth it. Sometimes growth can be tricky with ckd kids, I really hope your daughter is growing well, and will be able to get her transplant at age 2. How does your daughter do with the dialysis? Does it make her sick at all? I am dreading that hurdle as I watch my daughters kidney function decrease. Thanks for posting. I hope this thread grows and can be a source of information and support. For all of us navigating this roller coaster called ckd.

 

[purplerat]

Hi 1stTimer! You and your daughter have been through so much, its amazing how far she has come. I really hope shes ready for her transplant as soon as possible. We are about to go through the transplant process in 2 weeks, so if you ever want any information from a parent whose been through it I am here and also to you Peachy. You're daughter is also a fighter, it really does amaze me how our children cope and recover from very serious illness. I hope both of them continue to stay stable for a long time to come.

As you mention growth, my William hasn't grown much in about 6 months, I just hope this transplant will sort that along with other things out x

 

[1stTIMER86]

My Daughter surprises me everyday. whilst i know that being dialysed throughout the night leaves her feeling average when she wakes she never fails to wake with a smile on her face. it takes her a couple of hours to fully perk up but one she does she is so happy.
she really is very small for her age, whilst she is nearing 16 months her little body is the size of a 6 month old. we will be starting growth hormone within the next few weeks so hopefully that gives her the boost she needs. Secondary to the ARPKD she is also deaf (just had cochlear implants put in last week) and she also has low muscle tone, she still cant walk crawl or sit unaided but have started weekly physio and OT. Purplerat i hope all goes smoothly for yout LO and his transplant. while i cant wait for the time to come for my lil one, i am scared to death of it!

 

[peachymomma]

1stTimer I really hope the growth hormones work well for your LO. My daughter's growth has started to really slow in the last year, but we haven't had to do the hormones yet. Like your little one, my daughter also has other medical issues. She (Lexie) has hydrocephalus and has a shunt in her brain to drain the access fluid. Lexie didn't walk till she was 16 months old....so hopefully your daughter will walk soon! Purplerat I really hope the transplant helps with your sons growth. I can't imagine how nerve racking, yet exciting it must be that his surgery is so close! Was his Dad a really close match? Thats what I pray for is my daughter get a great match when the time comes, to help cut back on the amount of Meds she'll have to take. I've heard their real sticklers on the health of the donor. Did you guys have any hangups along the way?

 

[purplerat]

old size. Those growth hormones should help her. I am hoping will will start growing again post tx but if not I think we may be on the growth hormones too. Will didn't get to the size for transplant until 14 mos. I hope the physio helps her to move and develop, Will also didnt walk until 16 months. how do you find home dialysis?

I am a mixed bag of emotions with the transplant, I just want it now and to skip recovery and just have a healthy boy at home. His dad is a great match and infact I was too , but due to having a baby recently I wasn't eligible. They hope this kidney could last 30 or 40 years but if not I'll hopefully donate next time. We have had a few hang ups as there are many tests the donor must go through. The GFR KIDNEY FUNCTION test that his dad took had to be over 80 for a pass but his was 79 but it was a hot day so he could have been dehydrated and so retook drinking plenty and passed with 83 also it has been pushed back as his dad needs this bone MRI due to an underlying condition which he is having today, all being well then tx can go ahead. From people I've spoke to it seems common in planned living donation for the date to be pushed back as they must prepare the donor as well as possible. I don't think I'll believe it's going to happen until we're in the hospital. X

 

[purplerat]

Sorry part of my post disappeared! 1st timer are you Christine on the arpkd Facebook group? will is about the size of an 18 mo old as he didn't stip growing until Christmas. He is noticeably smaller than kids his age and the difference in what he can do physically is becoming more noticeable x

 

[1stTIMER86]

Sorry part of my post disappeared! 1st timer are you Christine on the arpkd Facebook group? will is about the size of an 18 mo old as he didn't stip growing until Christmas. He is noticeably smaller than kids his age and the difference in what he can do physically is becoming more noticeable x

yep that's me

 

[peachymomma]

Purplerat:
I thought about you and your family today....I truely hope your son's surgery went well. I hope he and his father are recovering quickly!

 

[purplerat]

Hi again ladies! I thought I'd give you a little update: The transplant finally went ahead on the 16th October, third time lucky! The 2nd planned date was pushed back as Will caught a nasty UTI, the first in his life.

He is doing brilliantly. His kidney function is normal, he's started to eat and has more energy. His dad is feeling a lot worse and resting up but seeing Will looking so good is helping him through.

The next step is to slowly wean him off his ng tube and get him to drink orally which is gonna be tough. I'm so happy we've got through it, it was a difficult couple of weeks, very draining but Will had minimal complications (bar excessive bleeding post op needing 3 blood transfusions, plus a plasma and chryo transfusion too) and recovered very quickly.

We're currently staying in patient accommodation but are hoping to go home soon. The hospital will provide transport for 3 months for clinic appointments as we must avoid public transport.

How are your kids doing? Sorry it's been so long since I updated- this last month or so has been a blur! Xx

 

[peachymomma]

Wonderful news PurpleRat! So glad to hear the surgery went so well, and that it happened! Keep us updated on his progress. My daughter is doing well, taking her meds and keeping an eye on her kidney function. Her Gfr is down to 34, I find myself getting nervous as we get closer and closer to dialysis. But hearing about your son's sucessful transplant surgery gives me hope!

 

[purplerat]

Thanks! I hope she continues to stay stable, now were at the other end of it all I am so pleased we've had the transplant. It wasn't as scary as I thought it would be. Ill make sure I update you soon xx