Re: RE: Hearing and kidney problems

[Guest guest]

Hearing and Kidney problems can definitely be linked. Branchio Oto Renal (BOR)

syndrome is one such linkage.

There can be both structural issues (which should show up on the VCUG /

ultrasound) and cellular issues which would require different tests -- biopsies

and thalium radioactive contrast testing. Another kidney/hearing syndrome is

Alport's Syndrome, I've heard that mostly affects boys.

Patty had severe nephritis / UTI infections when she was two which she outgrew.

They kicked in again when she was 5 for a bit, then again last year (when she

was 8). They were all related to growth spurts (as were the drops in her

hearing). It's generally all manageable, although somewhat frightening and

definitely a nuisance if you go on the low animal protein / low salt diet -- no

more trips to Mcs !

BOR is generally diagnosed by symptom and not genetic testing, as the EYA1 gene

on chromosome 8 associated with BOR only shows up in about 30 % of people

suspected to have BOR. There are some classic symptoms (not always present)

including pre-auricular pits (sort of look like bad acne around or on the ears)

or other external ear abnormalities, cysts on the neck, the kidney problems, a

small number (about 10 %) w/ mild heart defects, and the hearing loss is

usually, but not always mixed conductive and nerve.

Kay has several links on BOR syndrome on her site on the

http://www.listen-up.org/med2.htm page, and I can send you some printed medical

reference material offline if you like. If you have any specific questions,

don't hesitate to ask.

I'll keep my fingers crossed for you

Sheri

[Guest guest]

yes, I have heard that the kidneys and ears(hearing) develop at the same time

in a fetus, but I don't know how it would improve later on. That's wonderful

that it did. Sorry I don't know more.

[Guest guest]

Thanks for the compliment Janet. I think we all are forced by necessity to

become our own subject matter experts over time, especially in areas where the

medical knowledge is minimal or scattered. I am officially a computer geek with

a law degree but I started out as a chemistry major in a pre-med program which

might help.

Sheri

[Guest guest]

I have not written in such a long time. I have a question. My daughter was

born with a severe hearing loss which improved to a mild loss. (Can't explain

why though) Now she is 21 months old and we are going through kidney testing

due to a severe kidney infection. The doctor told my husband today that since

she did have a loss at birth it could be related. The doctor said that the

hearing and kidney's develop at the same time. Has anyone heard of this

before? My daughter goes for a VCUG (they use a catheter to insert dye into

the kidney's) and renal ultrasound on the 13th. Any feedback would be

appreciated. Thank you!

Yes, there are kidney diseases that are related to hearing loss.

Barb

[Guest guest]

At 11:25 PM 3/1/01 -0500, you wrote:

>My daughter was

>born with a severe hearing loss which improved to a mild loss...The doctor

>said that the

>hearing and kidney's develop at the same time.

Elaine, it's standard operating procedure for my ENT to do a battery of

tests on kids with congenital hearing loss. Genetic counseling, EKG, vision

screening, and kidney ultrasound were the biggies that I remember. The

kidney ultrasound was actually suspect (the radiologist saw what he thought

might be evidence of kidney reflux, which can cause kidney/urinary

infections), and we had to go to a specialist, but it turned out to be nothing.

The inner/middle ear and the kidneys do develop around the same time, and

they also share some similar characteristics, so it's common to check out

kidneys, to see if there are developmental or syndromal things they can

catch. Good luck...I know a few people who have kids with kidney reflux

(but none of those kids have hearing loss), and the kids have been healthy

with what seems to be little treatment.

[Guest guest]

Sheri,

I am extremely impressed with your breadth of knowledge...are you in the medical

field, or a mom who has done her homework??

Kudos big time!

Janet

[Guest guest]

Excellent...do you make house calls?? Teasing....

[Guest guest]

I would have never known of this, I have two hearing impaired kids and a

hearing child, everything seemed good with her except for the fact that since

she was a toddler I have been in and out of DR. S offices because of the

UTI's. We had the reflux test done and it was clear... and had her kidneys

checked and they seem to be fine... I guess I need to bring this to the drs.

attention..Should I be asking for specific testing to be done? (other then

reflux).

[Guest guest]

The nice thing about kidneys :-) are there are some very non-invasive tests you

can do at home, so you don't need to keep running your child to the Dr. to see

if things are OK

Lots of you may have used those urine dip strips when you were pregnant at your

OBGYN checkups. There are strips to monitor kidney function as well.

Specifically you want a strip that tests for White Cells, Protein and Ketones.

Most pediatricians have these at their offices, so the first thing I would do is

try and beg a handful from them. You can also buy them at a site called

Neoforma, if anyone is truly interested I can send you the URL info.

Some hints are that you always want to do the test first thing in the morning,

and you want to keep the strips in a small air-tight container and not for too

long (they only last about six months).

I test Patty about once every three weeks. If her test results are not normal,

I repeat it the next two mornings. If either of those followon tests are not

normal, then I run her into her Dr. for more detailed followup.

For those of you who want to test children that are not potty trained yet,

unfortunately it is a little more complicated and success requires a combination

of luck and perseverance. I can share those details as well if necessary.

A single, or even sometimes multiple abnormal results is nothing to panic over.

Sinus infections, or a hot day combined with lots of running around and low

fluid intake can give you funny results. But if you are getting abnormal test

results consistently, then you need to start looking at the more invasive tests.

Reflux (more typically seen in girls than boys) is bad because it can lead to

scarring of the capsule surrounding the kidney, which can lead to other worse

problems down the road.

I believe I have now shared absolutely everything I know about kidneys this week

:-)

Sheri

[Guest guest]

To everyone who responded to my question. Thank you so very much. I really

appreciate it.

Elaine D.

[Guest guest]

Thank you to Listen-Up. No one has ever mentioned a link to possible kidney

or heart problems to me before. We were just at the pediatrician for an

check up so I asked her because my daughter had also had a heart murmur when

she was younger. So as a precaution, we did a blood test and will do a

urine test as soon as we can " catch " it, if you know what I mean.

Thanks, Randie

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[Guest guest]

My daughter was given a renal ultrasound at birth.

You want this done. This will detect any thing

abnormal like only one kidney. Different sized

kidneys. Your body can function normally with these

variations but if she would to get a UTI with an

abnormality you can have a renal failure. An renal

ultrasound is nothing more difficult than an

ultrasound like you would get while pregnant.

My daughter has a skin tag by her ear and

individualistic ears. We were told then that kidneys

and ears develope at the same time. That if something

is wrong with one they are more likely to have

something wrong with the other.

They were not worried about heart murmers. She

surprised us and does not have one. Concidering

everybody else in the family does this makes her

unique too. LOL You do want to discuss with your

doctor what type it is. Depending on what type of a

murmer they will want her to have antibotics for

dental procedures.

--- randie chubin wrote:

> Thank you to Listen-Up. No one has ever mentioned a

> link to possible kidney

> or heart problems to me before. We were just at the

> pediatrician for an

> check up so I asked her because my daughter had also

> had a heart murmur when

> she was younger. So as a precaution, we did a blood

> test and will do a

> urine test as soon as we can " catch " it, if you know

> what I mean.

> Thanks, Randie

>

>

>

>

>

>

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> Get your FREE download of MSN Explorer at

> http://explorer.msn.com

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