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Old 05-11-2005, 01:25 AM   #1
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Exclamation PLEASE help - enlarged kidney in 8 yr old

My 8 yr old nephew has had many ultrasounds over the past few years because of an enlarged kidney. At first his doctor just wanted to keep an eye on it, but Nick (my nephew) has some symptoms that pop up every few months. He'll complain of pain in his abdomen or side, headaches, and sometimes he'll vomit several times in one week. This all happens a couple of times a year. The doctor says his liver enzymes are up for some reason too. Nick just had another ultrasound and it showed that his right kidney is growing twice as fast as his left - it's now the size of an adult kidney.
Everything I look up says this sounds indicative of Polycystic Kidney Disease. Does anyone know about this, or what else it may be? I'm very concerned..he's due to see a pediatric renal specialist soon, but in the meantime I was wondering if anyone might have any advice.

Thanks so much!

 
Old 05-11-2005, 06:46 AM   #2
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Re: PLEASE help - enlarged kidney in 8 yr old

I hate to mention this too you but he sounds like my youngest son did rieght before he was Dxed with polycystic kidney disease with congenital hepatic fibrosis.This all just happened one day when I sent him off to school and he actually had complained of a little stomach ache.i felt sooo horrible when only an hour later, i got a phone call from his school nurse that she had my son in her office because he had just vomited up a bunch of blood.He had been having some nose bleeds off and on at that time as well and i just assumed that the blood was coming up from that.Well, after a day from hell at our local childrens hosp, and many many radiologic and blood tests,he was Dxed with the PKD and they weren't sure just exactly what the liver Dx was yet.We had to wait for a liver specialist to come down from the university hosp and god, we were whisked on outta that er and taken by ambulance to the U of M hosp in a heart beat.It was there that he was finally DXed with the congenital hepatic fibrosis.This was a parents worst nightmare, believe me.He was only 12 years old at the time,and my baby.Your nephew does indeed sound like he has the very same thing actually.but he is being Dxed much more early than the norm.Most kids don't present real symptoms until aroud age 10-12.This is when the ongoing damage gets to the point of where they start showing symptoms.When my son was Dxed, he was already down to only 20% of his liver function left.We were shocked to say the least.The GI doc told us that the liver destruction actually probably started in the womb.And we NEVER knew he was sick until he vomited up blood.This is because he ened up with what is called portal hypertension.It was caused when the fibrosis starts to cover the portal vein with this nasty scar tissue.No blood can flow through the vein anymore so it starts to back up into the surrounding organs.Fortunetly, as time passed for my son and many procedures and meds later,about 9 mo after his original Dx he ended up needing a liver transplant.Not really quite as scarey as it sounds.it saved his life.Right now my son is doing wonderfully.his Tx was in june of 2000,and to this day, the liver has been functioning great.He does and did everything his friends do and did.And was actually told that he could play football.He didn't because I would have gone too crazy worrying ya know?I really really hope that your nephew does not have this but if he does, just remember that it is not a death sentence and they can do so many things for him.If you have any and i mean any questions at all that need to be asked and answered, I am here for you.I am on almost every morning.Just be there for him and his family.right now and in the months to come, they will need all the support anf love that you can give.i will be praying for him.Marcia


I just wanted to mention to you also that if he does indeed have the PKD, every member(adult) of his immediate family needs to have an ultrasound done to find which side of the family this came from.I did not know that I too had this as well as my sister.It came from my moms side.one of your nephews parents have this.They would have to have it in order to have passed the gene onto the children.All children of a PKD positive parent have a 50/50 chance of getting it too.Just wanted to let you know this too.by the way, if you live near a good university hosp, start going there.My son had the best care possible there as all of your specialists are right there and discuss things together.You also have all of those minds working together and to offer their ideas and input.Bye
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11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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Old 05-11-2005, 08:55 AM   #3
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Re: PLEASE help - enlarged kidney in 8 yr old

Thanks for the fast response! I just talked to my sister-in-law, and she told me that Nick has been ordered to see a Nephrologist. I can tell she's worried, but she's trying to stay calm until we know all the facts. I'm hoping he doesn't need a biopsy of his kidney, because he'll be terrified. He's a tough little boy, but he's endured so many blood tests and ultrasounds and exams over the past few years...I told my sister-in-law what you said about everyone in the immediate family getting checked out. That's a great idea, and hopefully we'll have some answers soon.
Thank God your son was able to get that transplant and heal so quickly! That's wonderful to hear, and it's hopeful for other parents/relatives out there going through a similar situation.
Again, thanks for your reply!! I'll definitely keep you posted!

God bless!
Oktobreana

Last edited by Oktobreana; 05-11-2005 at 08:57 AM.

 
Old 05-12-2005, 06:24 AM   #4
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Re: PLEASE help - enlarged kidney in 8 yr old

You know, if he has had alot of ultrasounds,they would definitely have noticed the classic poly globs of cysts while they were scanning.this may not be PKD after all.or did they find cysts and you just did not mention it?For some reason, when you have PKD with liver involvement, one organ does not seem to get all the cysts as it would if you just had the kidney involvement only.The cysts seem to kinda spread out more,so the kidneys are not hit quite as hard.if his one kidney is so much larger than the other,with PKD, the actual cystic development is what normally causes the enlargement,not fluid retention or some other factors.

My kidneys right now are huge.When i was first Dxed with PKD, both of my kidneys were about twice the normal size,right now, they are both many CMs larger than just a few years ago.I have some cysts that are between 5 and 6 CMs.Those are considered very large.One of them actually takes up the entire lower half of my L kidney.The really bizarre thing is that even at Dx and even now, all of my liver and kidney labs are all still within the normal ranges.It amazes me just how much destruction you can have going on in any given organ but it does not show up in your labs until the destruction is really quite bad.if you look at the US of someone with PKD the affected organs take on what is referred to as a "moth eaten" appearance.I had an US just last month(I have one yearly)and honest to god, my kidneys both looked like a chunk of swiss cheese.on an US the cysts will look just like black holes on a grey background.if your nephew is not showing cysts in his kidneys, he definitely would not have PKD.there are many different diseases and conditions that involve both the kidneys and the liver.he could have something else entirely.If your Nephew does indeed show the poly glob cysts, I would seriously doubt that they would even consider a biopsy at this point.Even doing a biopsy on the kidneys can start a nasty infection.From what my Neph told me,they try and aviod doing one if possible.Why risk a possible infection that can cause major problems if you don't have to.

Do you know if your SIL has obtained copies of all of his radiology?If not, she needs to start getting copies of everything,and I mean everything.i found out the hard way that when you yourself or a family member has some sort of major medical condition,you end up ending up in various ERs and many docs offices for any number of reasons,and having copies of all tests and docs notes from clinic visits and most importantly any lab results really really helps sooooo much in an emergency or a doc vist that you have been referred to where the last doc was supposed to send over the needed info only to find out when you get there, this was never done.I cannot even count the number of times that i had to dip into my sons files for badly needed info.she needs to get one of those expanding files that have that snap shut type closure?i don't know what I would have done without the files.After every ER visit,i asked to have copies of all labs(they can copy these right away so you can take them with you)and after the visit I would call the hosp we were just at and get a release of information sent out so I could sign it, and send it back and in just a few days, I would get any other records that were generated from that ER visit and add them to the file.the labs are a must.right before my son went into total liver failure, he ended up in three different ERs only about a month before for certain things.i had the copies of all of his labs when i had to call his GI doc one night because he was having severe LLQ pain and running a fever.i started rattling off his prior lab values and when I was about only halfway through, she wanted my son up in the U of M er like right now.He never left that hosp until about two months later and with a wonderful new liver and in much better health than what he had going in.but just having the last set of labs for the doc to have a base to work from, they can really see just how much better or worse he is currently doing.those labs are a very very important thing to have,trust me.
I got so incredibly sick of every doc we had to see, asking me what this was and that was at his last labs(like i am supposed to remeber like twenty different labs??), that I finally started getting my own copies.Now when I get asked this question, I dip into the file, grab the last lab sheet and give it to the doc to see for himself.i could in no way keep track of all of those labs in my head.

If you want to do a huge favor for your SIL, get her one of those expanding files,and also one of those appt planners that have the calenders with the spaces you can write in,I would make notes on my sons continuing condition in those spaces,and also keep track of his many appts.The stuff I would wriote would be like'saw Dr so and so, she said blah blah,and we need to follow up with this or that and any recomended treatments or days he started new meds and stuff.believe me, the file and the planner are very good tools to have when you have a very sick child.You would really be helping her emensly by just getting her this stuff.And telling her to obtain every bit of medical records she can get her hands on,with special emphasis on those labs.if she hasn't done this already, have her call every single place that has seen her son for any sort of appt or test and just ask them to send out a release of information for her to sign.She needs to get all of the records that her son has generated so far and then keep on doing it.a release is good for a year so when something new happens,all she has to do is make a call to the med recorsds dept,and request the new stuff.The labs I got as soon as possible, the other stuff I would call all the places about once a month.Just make sure she takes this file with her everywhere she goes.i really really appreciated having all of my sons info in one place when he would suddenly have to go to the hosp for something emergent.All i had to do was grab that file and go.She also need to make a list of any meds he is on and the dosages given.and place THAT in the old file as well.

I really hope all of this info is helpful.i wish someone would have told me about the file thing much sooner.Find out what the US states about what was found with regard to any cystic development in the kidneys,K? I will be thinking of your Nephew and hoping the Dx is not the same as what my son had.Hang in there.Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 05-23-2005, 05:20 AM   #5
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Re: PLEASE help - enlarged kidney in 8 yr old

Oktobreana,just wondering how things are going????Marcia

 
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