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Wednesday, September 19, 2007

Kidney Disease and Child Insomnia..My SON??



There are many different kinds of Kidney diseases. I am not sure whether it is hereditary but the kidney disease my son has is very similar to the ailment I had when I was almost his age. Our pediatric nephrologist told us that there are no conclusive proof yet that this disease is hereditary. Our doctor even said that we are his first patient that both father and son had this similar ailment called nephrotic syndrome.

As a little boy, I was subjected to strict diets and limited activities due to risk of infection. Similarly my son is going through similar experience. He is naturally a very energetic social boy and is always curious about everything. We even nick name him "Curious George" especially when he is on full dose steroids. His cheek will round up like apples and he loves to smile with a mischievous look on his face.

Among some of the side effects from the five different kinds of medication he is taking are insomnia, suppressed immune system, mood swings and a significant increase in appetite. These are the short term side effects while long term side effects could be cancer or even further damage to the kidney. I honestly don't remember the side effect I suffered from with the exception of the mood swings and increase in appetite. I would bulk up one week and then slim down the week after. A change of 10lbs can occur within 7 days especially during the first few days of recovery, given the fact that a lot of weight gain is from water retention.

In my son's case, his church friends think that he is cute and has the ability to bulk up one week then slims down the next. It brings new meaning to "Elastic Boy!" He's like a new kid in town each week given the changes to his body. I am glad he is at least emotionally undisturbed by this condition. The side effects that does take its toll in many ways is insomnia. We notice after the last hospital stay a few weeks back, his doctor actually had to increase on one of his medication dosage and hence his insomnia becomes more apparent. He normally goes to bed around 9.30 but nowadays he won't get to bed and be really sleeping until 11.30pm or sometimes even at midnight.

He still gets up in the middle of the night sometimes several times to use the bathroom and then he wakes up at the same time in the morning which is early! Sleeping is an important part of growth and we worry that the lack of sleep would further lessen his immune system and physical growth.

A few nights ago as usual he woke up to use the bathroom. He would normally come to our room and wake one of us up to take him to the bathroom. He noticed daddy wasn't on the bed and mommy was sleeping alone. He didn't think too much about it until the morning. He woke up and started asking me why didn't you sleep with mommy last night? I didn't say much except telling him that daddy needed to sleep on the floor.

More of the story in Patient King

33 comments:

mrsnesbitt said...

Hi, I am not sure how old your son is but he sounds quite a guy!

Hugs from Mrs Nesbitt, he will know me from Toy Story! LOL!

Anonymous said...

my fathers side of the family all had kidney issues...one aunt had three...one had one extra large my cousin had to have one removed and I have only one, and have to be very careful about infection...It's terrible to be on steroids...the weight gain is scary
for a child and the mood swings stink...good luck all of you.
mauniejames3

Kenny said...

I really feel for your little boy. It must be tough changing shapes each week. Our prayers are with your family.

Colin said...

I can relate to insomnia, largely caused by medications, and that in itself is not a good thing. Your son sure sounds like quite a guy and it can't be easy for him.
Weight gain and then to lose it sounds pretty scary, but hopefully he will get all the treatment he needs to live a normal life.
Our prayers are with you and your family.

Larry Wilkinson said...

Insomnia is no fun especially on little ones. It is tough bring up kids when they don't feel good. All the best and it will get better. My son has the same disease and we know all about the ups and downs of life when your child suffers.

Jaime Moyer said...

I had nephritis when I was a kid and was able to outlive it. It was tough. I still have insomnia nowadays but it's for a different reason. :) Work Stress is killing ME

Bob Woofred said...

I love the way you write and chronicles about your family life especially the relationship between you and your son. Although he has this ailment but I am sure with parents like youself, he is very lucky.

Kathy Baker said...

I had renal failure several years ago due to diabetes. It's not an easy disease to bear especially on little kids. Swelling up and then slimming down is no fun.

Terry Jouls said...

It is the toughest for parents when they see there own kids suffered. My son was diagnosed with cancer 5 years ago but have been cancer free for a year. We are keeping our fingers cross everyday and count every day as a gift.

Here is a virtual warm hug for your whole family. Take care and great blog. You are obviously a great dad.

Nelly said...

I suffer from insomnia nightly and I can't imagine what this does to your son. Take care and hugs for your little one.

Lisa Beans said...

It must be hard having your body stretch in and out. Hang Tough and you seem to have the family support system to make it through.

Monica said...

I know all about being stretch and having water retention since i was pregnant. It was not a good feeling although it was a rewarding experience at the end. I hope your son will have the same result which is a good life experience even though it takes a physical toll.

Lotus Flower said...

Hi there,

I can very well relate to you and your predicament. Five years ago I was diagnosed with a life threatening kidney disease. My nephrologist told me that my glumereli (kidney filters)are attacking my own healthy kidneys..It was really weird. I even had to undergo kidney biopsy to actually validate the doctor's initial diagnosis. Today, I am taking an ACE inhibitor because I have become hypertensive.

About your son, I am just concerned about the steroids he is taking.

All the best to you and your family and allow me to congratulate you for being a good dad!

My other blog: http://lablabmeedo.blogspot.com
which is not really very active chronicles the hospital examinations I went through during that ordeal.

Peter said...

I am touched by a father like you. Thank you for sharing with the world and wish your son the best.

Lisa Bulger said...

I remember the no salt tasteless diets..YUCK..but I did get better. I had the same as your son. Hang in there and God bless.

Sweet Girl said...

All the best for your child.
With a caring father like you,,he doesnt need to worry

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