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Old 11-28-2003, 05:00 AM   #1
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ont1628 HB User
Unhappy 2year old with kidney disease

My two year old daughter has just been diagnosed with chronic kidney disease. She has had blood work done many times and each time she has had a high urea, high but normal creatinine, and very high blood pressure. They tell me that they don't know what has caused this as her kidney's aren't enlarged or have any deformities. Sometimes she appears to be in considerable pain especially at night, and when she gets up she is covered in urine. I am so confused about all of this. She is going to see a neprhrologist next week. I am just curious if these symptoms fit the diagnosis and if anyone has any information or support to offer. They tell me I can alter her diet, but only gave me a couple of suggestions, ie. no salt. They also tell me that they believe she will eventually need dialysis, or a transplant, but can't tell me any signs of that she may be getting worse. Any help would be greatly appreciated!

 
Old 11-28-2003, 07:47 AM   #2
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GirlieGooner HB User
Re: 2year old with kidney disease

I am so sorry to hear that your little babe is suffering so much at such a young age.

Sadly I have nothing I can offer you in terms of advice. So, I am sending you a (((((cyberhug))))) and along with it comes my good wishes that the nephrologist is able to help her in the best way.

Good luck
GIRLIE

 
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Old 11-28-2003, 09:23 AM   #3
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projapoti HB User
Re: 2year old with kidney disease

Quote:
Originally Posted by ont1628
My two year old daughter has just been diagnosed with chronic kidney disease. She has had blood work done many times and each time she has had a high urea, high but normal creatinine, and very high blood pressure. They tell me that they don't know what has caused this as her kidney's aren't enlarged or have any deformities. Sometimes she appears to be in considerable pain especially at night, and when she gets up she is covered in urine. I am so confused about all of this. She is going to see a neprhrologist next week. I am just curious if these symptoms fit the diagnosis and if anyone has any information or support to offer. They tell me I can alter her diet, but only gave me a couple of suggestions, ie. no salt. They also tell me that they believe she will eventually need dialysis, or a transplant, but can't tell me any signs of that she may be getting worse. Any help would be greatly appreciated!
Not to discount what the doctor says, but it's kinda hard for her to have chronic kidney disease 'cause she's not really old enough to have had a kidney disease for long enough to have it called "chronic". You say she has had bloodwork done and her urea, but not creatinine is high...this suggests volume contraction (dehydration) and not necessarily a problem with her kidneys in general. I'm sure she's had urine work done. Do you know if there was any protein or microscopic blood in her urine? That's VERY important.

You said she has hypertension eh? Any swelling around her body? You also said her kidneys look normal on x-ray eh? That's encouraging to say the least! It at least shows that she doesn't have polycystic kidney disease.

 
Old 11-28-2003, 09:46 AM   #4
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Re: 2year old with kidney disease

Yes, there is swelling around her feet and there are dark puffy circles around her eyes. Several urine tests have revealed both blood and protein in the urine. And her urea has been high over a period of six months. She is also very anemic, and even double dosages of iron does not correct this problem. I don't know a lot about the kidneys to know if this is a part of it. She seems to have both really good nights and really horrible nights. Some nights she hardly pees at all the other nights she is drenched with pee. She still wears diapers. When she has bad nights she seems like she is in a lot of discomfort or pain.

 
Old 11-29-2003, 08:08 AM   #5
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projapoti HB User
Re: 2year old with kidney disease

Ahhh, okay, THAT is why they say she has a chronic renal problem which makes a LOT of sense. The reason iron isn't helping her is because it's not the fact that she's short of iron, but the fact that her kidneys aren't producing a hormone called "erythropoietin"--which is a hormone that stimulates your bone marrow to produce blood...without that hormone, you become anemic. Anemia is a characterstic of chronic kidney disease.

As for for puffy circles around the eyes and swelling around the ankles, this also makes sense because she's losing a lot of protein through her urine, which lowers the protein concentration in the blood, which makes it so that fluid tends to stay in the tissues rather than the vessels...hence swelling.

It sounds like your daughter has a chronic inflammation of her kidneys which is leading to these symptoms. Please let me know how the nephrologist's appt goes. If you don't mind sharing, I would like to hear what happens.

 
Old 12-02-2003, 01:14 PM   #6
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Re: 2year old with kidney disease

I will definately update on what the nephrologist says. I have other children who are all healthy and this is all so new to me. To look at her she doesn't look sick and everyone always comments on how good she looks. "Pale but good" is often what I hear. Some days her eyes even look good. There is a huge difference between her good and bad days. Are these then all "typical" of renal disease? Some days she will eat great, other days she won't eat a thing. And how do I know if her kidney's are doing worse? Are there any signs that I should be aware.
One last question, should she be having pain especially at night. Since she is only two I don't know if it is pain but she wakes up some nights constantly crying and I can't settle her down. Or could it be from something else?

Thanks so much for your help, I really appreciate it!!

 
Old 01-18-2004, 11:24 AM   #7
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kneehuggers HB User
Re: 2year old with kidney disease

Hi- I posted a message for you at the top of the boards- but in short- I would like an update on your daughter. My 2 yr old daughter (with your daughter's exact symptoms) was diagnosed last week with IgA Nephropathy. I can't find anyone "out there" with a child this young having been diagnosed with this disease and wonder if you might possibly be in the same boat as us. Please email me if possible- [removed]
Thanks!
Kristin (mom to Erin 27 months)

Last edited by moderator2; 01-19-2004 at 09:19 AM. Reason: Please carefully read, know and follow the board guidelines and posting policy. The forums are for public anonymous use only. Do not offer or solicit private or off board contact. Thank you.

 
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