Mommy of a two year old on dialysis

[TeamTinyTank]

I'm new to the world of dialysis.  On Dec. 26th 2014, my husband and I took our two year old son to the E.R. at the Children's hospital in Dallas, Tx.  We had gone to a local E.R. but they immediately told us to go there instead.  The next day, he had surgery to have a catheter so he could undergo dialysis. Two days later he had a biopsy of his kidney... FSGS.  He will need a kidney transplant and we do not even know if the new kidney will be affected or not. 

I did not even know children could be on dialysis at this point.  I was unaware of kidney disease and the signs and symptoms of it.  We were blindsided.  My son had only been sick that week (with the flu) when we noticed his feet swelling.  Other than this time of him being sick, he had never been sick before.  He was always underweight and height for his age but we assumed that since both of us (his parents) were really small as children that he was just going to be a small child too.  Months before this, we did take him in for a check-up because we were concerned that he was not eating well and not gaining any weight since his two year checkup.  We had also noticed his eyes seemed puffy some days and usually in the mornings.  We assumed it was allergies and the pediatrician did not seem too concerned about it. 

Anyway, to put it shortly, here I am today looking for support.  I like to read about other's experiences on dialysis so I can know what to expect and learn more about it.  We have briefly discussed PD but at this point, I don't really know what it best.  He is doing okay with hemo right now and has been going 3 times a week since we left the hospital after a two week stay.  This week, he had to go four times.  Once was due to an emergency dialysis session where he had a  lot of extra fluid build-up.  I'm not sure what caused this.  He barely eats or drinks as it is and we strictly monitor sodium, phosphate and potassium.  They removed 1.5lbs and the very next day removed 2 more pounds of fluid from his tiny body.  He has had a low grade fever on and off for three days.  I'm not sure what is causing this but they do not seem concerned about it at the hospital at this point. 

My little guy (we call him Tiny Tank) is so much stronger than I could ever imagine.  He has endured so much in such a short amount of time already.  I just hope I can keep a strong face and be an anchor for him during the duration of this new way of life.  If you say prayers, please say one for my son, Axten (Ax)  He will be three years old in Feb. and this is not the life I had hoped for him... or anyone.  I hope I can donate one of my kidneys to him and if I am not a good match for him, maybe I will be for someone else! 

[PaulBC]

I did not even know children could be on dialysis at this point.  I was unaware of kidney disease and the signs and symptoms of it.  We were blindsided.  My son had only been sick that week (with the flu) when we noticed his feet swelling.

I could have said almost exactly this back in October. My daughter (then eight years old) just seemed to be a little under the weather. She didn't have a fever, and had been keeping up with school and activities, including swimming. She even gave a short class presentation she had been looking forward to. Her voice was weak, but her delivery was confident and organized. I was already proud watching her, and I had no idea how sick she really was. We eventually noticed that her face was swollen and her weight had jumped to nearly the same as her older brother.

By the time they did a blood test, her potassium was at a dangerous level and we were told to bring her to the pediatric hospital by ambulance.

I think it's safe to say most people don't know a lot about kidneys unless they work in the area or have direct experience with kidney disease. Blindsided is exactly the word I used when describing what happened.

Anyway, to put it shortly, here I am today looking for support.  I like to read about other's experiences on dialysis so I can know what to expect and learn more about it.  We have briefly discussed PD but at this point, I don't really know what it best.  He is doing okay with hemo right now and has been going 3 times a week since we left the hospital after a two week stay.

We started with hemo because getting ready for PD was just too much too soon. But we switched recently, and it has been working out well. She wanted to stop missing school in the afternoon and to leave time for activities. The HD catheter also seemed really scary, though I realize the PD catheter carries a risk of infection. The situation may be different for a two year old, and you should get all the time and support you need to make this decision.

They removed 1.5lbs and the very next day removed 2 more pounds of fluid from his tiny body.  He has had a low grade fever on and off for three days.  I'm not sure what is causing this but they do not seem concerned about it at the hospital at this point. 

If they're not concerned, they should give you their reasons for reassurance. You have every right to worry about this. Keep asking questions, and get their worst case scenario even if it isn't what they want to tell you.

If you say prayers, please say one for my son, Axten (Ax)

I'm not religious, though I have accepted many offers of prayers and will keep your son in my thoughts. My own prayer, such as it is, begins with thanks that my daughter is alive and just as smart and funny as ever. If there is any mercy to this experience, it is that we haven't lost the joy. We just have work harder for it.

  He will be three years old in Feb. and this is not the life I had hoped for him... or anyone.  I hope I can donate one of my kidneys to him and if I am not a good match for him, maybe I will be for someone else! 

Yeah, it is not what anyone expects. I sometimes fall into the habit of taking allograft survival time and extrapolating it into my daughter's expected age. It is certainly no way for any child to begin their life. The way I see it, today's medical treatments buy some time. Tomorrow's treatments will, I hope, be a real cure.

[TeamTinyTank]

I don't think we want to switch to PD just yet because that would be too much too soon.  Everything he has gone through so far has been scary enough for us.  We did notice that he had been gaining weight over a couple of months but we attributed that to the new gluten free diet our pediatrician suggested for him to try to help get him to eat more.  It seemed he was eating more foods and trying new things so we really had no clue that it was something underlying.  He only weighed 19.2lbs when we switched to the GF diet.  When we took him to the ER he weighed about 23lbs and with more fluid accumulating, he got up to 24lbs.  Just a few minutes ago we put him on the scale and saw 19.2 again.  That verifies for us that none of the weight he had gained over that time period was from eating more but from fluid buildup.  It really makes us feel guilty that we didn't realize the signs could have been something worse than what we were thinking.

Before all of this, we had already planned on homeschooling our son but that is even more affirmed now unless he is able to get a transplant in the future and do well with it.  We are also worried that the same thing could happen to a transplant and it will fail.  Next month, we will do some genetic testing and  hopefully get more answers though all of the answers we have gotten have just been worse than the previous ones and none of the news has gotten any better.  I know this is just the beginning and we are definitely trying to stay strong and positive.  I don't want him to ever know how scared I am. 

I'm glad your daughter is doing well with the PD.  I imagine it to be better in several ways and understand there is more risk for infection.  Is she able to sleep okay?  Is the machine loud?  I'm really trying to stay away from Google because the more questions I ask about toddlers on dialysis, the more worried I get.  Hopefully some good news will come soon though.  There is always hope that science will prevail and things will greatly improve.

[PaulBC]

I don't think we want to switch to PD just yet because that would be too much too soon.

HD had some advantages. We got to stay in regular contact with the hospital at a time when we were just adapting to the situation. We weren't really comfortable performing a sterile procedure (it just takes some training).

PD catheter placement also turned out to be a more difficult procedure for our daughter, who took most of a week to get over the abdominal pain from it. In fact, I'm glad we started with HD, because our daughter got back to her normal life a lot faster and was even able to go trick-or-treating with her best friend as she planned before being admitted. PD would have left her in the hospital longer and probably would have made her feel worse at a time when she needed all the optimism she could muster.

So I would advise just sticking to what you're comfortable with. I think PD will be better over a longer term for us, but it could be different in your case. Don't feel pressured either way. Both are effective.

It really makes us feel guilty that we didn't realize the signs could have been something worse than what we were thinking.

I understand this feeling well, but people usually don't expect kidney failure, and they're usually right. It is a rare thing for it to happen to an otherwise healthy child, who may have discomfort and fatigue for all kinds of reasons. It doesn't show a lot of symptoms until it's too late. Probably your pediatrician didn't suspect either.

I'm glad your daughter is doing well with the PD.  I imagine it to be better in several ways and understand there is more risk for infection.

There is risk of infection in an HD catheter too. There are fewer restrictions on what you can do with a PD catheter (such as swimming) but this is less of an issue for a toddler.

Is she able to sleep okay?  Is the machine loud?

She had some discomfort initially, mostly during drain and fill, but this is less common now. She sleeps through the night pretty well but sometimes rolls over in a way that prevents draining and sets off an alarm. This is happening less often, though I don't know why.

[iolaire]

I know this is just the beginning and we are definitely trying to stay strong and positive.  I don't want him to ever know how scared I am.

Welcome I'm glad you found the site there is a wealth of information and support.  I'm now 40 but was a teenager with active lupus causing all kinds of health problems and to this day I think about how hard it must have been on my parents.  (My kidneys have slowly failed 20 years after the lupus activity from the damage done back then.)  Your role is the hardest, I think the child is more able to live in the moment and deal with an illness with much less stress than the caregiver.

[PaulBC]

I don't mean to intrude, but in case you're still reading, I'm curious how your son is doing. The fever and excess fluid sounded worrisome.

We are a week further along on PD with our daughter and it's going smoothly.

[Darthvadar]

  to IHD....

Good to see you've found us... I don't know much about children and renal disease, but as you can see, there are others who do...

Hope the little man is doing well, and we get to see a lot of you....

God bless....

Darth... Moderator...