Conference moira::parenting_v3

    I agree completely with your doctor's recommendation to do a thorough
    kidney study. But please do not get overly concerned at this point.
    
    I am 47 years old and suffered from kidney problems starting at a very
    early age.  Unfortunately, when I was young, "they" were not nearly as
    aware of potential problems as "they" are now.  As a result, my
    kidneys were severely damaged by recurrent kidney infections.  The
    situation is under somewhat tenuous control at the present time, but
    it's made much more difficult because of the damage done when I was
    very young.
    
    Kidney problems can take an extremely long time (maybe over 10 years)
    to develop to a critical stage.  During that time there are many things
    that can be done to fix the problem.  On the other hand, it is a good
    idea to get on top of the situation as soon as possible.
    
    Your doctor is doing the right thing by taking no chances.  In the
    unlikely case that something abnormal is found you'll have lots of time
    to take care of it.  Good luck.  Please let us know what the results
    are.  I'd be glad to talk to you if it would help.
    
    Rich

    Elizabeth,
    
    My second daughter did the same thing when she was about 5 months old.
    She never acted very sick, just ran a high fever.  Whe ended up getting
    infection after infection and finally when she was about 9 months old
    they did an IVP on her where they inject dye into their veins and 
    take x-rays of their kidneys and bladder.  
    
    It turned out that she did have a deformity in her urinary tract and
    they put her on antibiotics for over a year until they thought she
    was big enough to have surgery to correct the problem.  
    
    I'm not telling you this to scare you or make you worry.  I just think
    that it is a good idea to do further tests on your son to make sure
    that everything is as it should be.  The kidneys are nothing to mess
    with.  My daughter had her surgery when she was 18 months old and has
    done well so far, no more infections, she is now a healthy 14 year old
    just a bikini scar and no memory of the surgery or hospital at all.
    
    Good luck and try not to worry, it sounds like you have a good doctor.
    Alle had five infections (with very high fevers) before they did
    anything.  Her one kidney was slightly damaged because she had so many
    before they found out why.
    
    Vickie

    .0 & .2 - why did the doctors suspect a urinary tract infection?
    Was there anything more than a fever?  I know several toddlers
    who have had a virus over the past several weeks.  Eric had it, too.
    Eric had a fever, diarrhea some of the time and ate almost nothing.
    This went on for 3 days.  What would lead a doctor to suspect a
    urinary tract infection rather than a simple stomach virus?
    
    Thanks,
    Donna

    re: .3
    
    I assume the doctors found no other symptons other than the fever
    and began checking other things. A simple urine sample can show alot.
    A simple blood test can also. It only takes about a minute to find
    that a UTI is present. The urine sample is looked at under a
    microscope. Last time I had one, the nurse took one look, and knew
    immediately.
    
    Having a fever with intestinal symptons is usually a virus. My friend's
    son just had this last week. I have never heard of diareah being
    a sympton of an UTI.
                
    

    Hi Elizabeth,
    
    When our son was 20 days old he had a high temp and was vomiting.
    He ended up in the hospital for 2 days on antibiotics until the
    fever went down and the test results were in (poor little guy
    even had a spinal!).  Sure enough he had a UTI.  The ultrasound
    on his kidneys/bladder showed no abnormalities.  How he got the
    infection, the doctors (our pediatrician and an infant specialist)
    didn't know, but the antibiotics had cleared it up.  The doctors
    gave us the option of having more tests done in Boston or having
    his urine tested every 3 months for a year, every 6 months 1-3 years.
    We went with the urine testing on the basis that "if it happens
    again - Boston".  So far, so good - our son is 1 1/2 with 
    no signs of a UTI.
    
    You have every right to be concerned/worried.  The ultrasound/X-rays
    are painless and hopefully your son's UTI was a freak.
    (sometimes the tests are more painful for the parents!)
    
    I wish you all the best and good luck!
    
    ph
    
    

	My daughter had a UTI when she was 20 months.  She was able to
	show and tell me she was having discomfort, and another parent
	diagnosed it immediately.  I took her in and sure enough, she had one.

	The pediatric urologist suggested a VCUG (fluid injected into the
	bladder and an x-ray done to check for REFLUX -- backing up of urine)
	and an IVP (Intravenous Pyelogram (sp) mentioned in an earlier note).
	We compromised on the VCUG and then an ultrasound of the kidneys if
	the VCUG looked okay.

	Everything looked normal.  But it is important to check it out.

	Eileen

    My daughter went through this just this winter at age 6.5.  She had two
    UTIs about 6 weeks apart and this was enough for our pediatrician to
    ask for further tests.
    
    The first UTI started with burning urination.  We had a long talk with
    Maggie about bathroom hygiene for young ladies since she had gotten
    herself irritated before by not wiping herself after peeing.  But I had
    already thought that if it wasn't better by morning that I would call
    the pedi.  4:00 a.m she woke up with a fever and a backache.  
    
    We got her comfortable and back to sleep and I got out some of my
    medical references and mentally had her having a kidney transplant in
    about 15 minutes flat!
    
    Of course the real story we found the next day was a UTI.  Single
    infections are not that uncommon in little girls, however, chronic
    problems usually appear at a much earlier age.   Testing was ordered at
    Mass General Pediatric Radiology.  We were to do the VCUG (Voiding
    Cystourethrogram), the Kidney Ultrasound, and, depending on the results
    of those two, an IVP.
    
    Maggie was scared to death, especially since she had had an emergency
    apendectomy less than two years earlier and had no desire to EVER
    darken the doors of Mass General again.  What really helped was the
    Child Life Specialists at Harvard Community Health.  We spent an hour
    and a half having everything explained, the whole procedure done to a
    doll, a tour of the HCHP radiology department to look at the machinery,
    and all of Maggie's questions answered.
    
    The results - a child who faced the day with more confidence than her
    mother!  And medically - they discovered a reflux - on a scale of 1-5
    she was less than 1 (5 being the worst).  Treatment options for reflux
    are do nothing but keep an eye on it (urine tests every three months),
    prophylactic antibiotics for a time, or surgery for the most severe
    cases.  Maggie only needed the first and it is expected that she will
    outgrow it by the time she is 9 or so. 
    
    She has not had a UTI since (of course), but we do feel a lot better
    knowing.
    
    Norma
    

    When they did another Urine analysis, they found that Jonathan still
    has the infection and hence he has to go and see a Urologist (SP?).
    Until then he is going to be on antibiotic; The doctor feels that the
    antibiotic is not going to be of much help.  Anyhow, on Aug 14th we
    are taking him to the Tufts Medical Center to meet the Urologist. 
    Before seeing the doctor they are going to do Kidney ultrasound and
    VCUG test.  We are hoping that everything would comeout normal.  He
    seems to be normal and did not have any fever for the past 3 weeks,
    and we hope it stays that way.
    
    Can someone explain the procedure of the VCUG test? Is it painful?
    
    Thanks for all the wonderful responses, and it is definitely
    encouraging.
    
    
    - Elizabeth
    

    My daughter Amanda is going back to the doctor's on Aug 15th for a
    follow-up visit after havint UTI.  Dr Daley said that when we come in
    he wants to try and get a clear urine sample and then we are going to
    discuss tests that he would like to perform...the VCUG and kidney
    ultrasound.  I am real happy to have stumbled upon this note.  It has
    been reassuring to know that others have been through and been just
    fine.
    
    How tramatic are these test for a 17 month old?  Amanda already hates
    Dr. Daley, the nurses and Fallon Clinic in general.  Anyone who comes
    near her with a stethascope around their neck is subject to an ear
    piercing scream.
    
    /red

	I have to say that when Leah was 20 months old, it was pretty
	traumatic since they had to use a catheter to get a clean sample.
	She had about 3-4 samples taken and by the last started screaming
	the second we walked into the doctor's office.  The VCUG involved
	a catheter also, which of course she was very unhappy about. She
	fell asleep during the ultrasound, and was fine soon after.

	However, never having had the procedure myself, I would guess
	it was mostly a discomfort rather than pain.  I remember worrying
	about her response at future doctor's visits, but she forgot about
	the whole experience pretty quickly.

	This note has helped me a lot because in hindsight I wondered
	whether I should have let them to the IVP, but it sounds like
	the kidney ultrasound is pretty standard alternate practice.

	Eileen

    We took Jonathan for his tests and everything came out normal.  
    
    During the Kidney Ultrasound we gave him the formula so he did not
    mind the disturbance.  But during the VCUG test, he cried out of pain
    a LOT - poor Jonathan he never wanted to lie down even for a diaper
    change.  
    
    They did take a urine sample using the Catheter and the doctor
    said the sample was clear and had not sign of bacteria.
    
    So everything went well, and I think Jonathan has forgotten about it
    already, as he was normal today.
    
    
    Thanks for all your support.
    
    Elizabeth
    

    Well Amanda had her test yesterday (ultrasound and VCUG).  It was not a
    pleasant experience.  The VCUG does show that she has REFLUX, but they
    didn't really tell me what we do from here.  They said that Dr. Daley
    would have the results early next week to just give him a call.
    
    Now I am going out of my mind wondering what happens next.
    
    Can anyone out there offer some words of wisdom?
    
    Thanks in advance,
    red

    Well, with my niece, the doctors and medical experts said, "Gee,
    she has reflux.  That means it's easier for bacteria to get into
    her bladder.  That means she's more likely to get UTIs.  Bring her
    in right away if you notice symptoms."
    
    Yeah, right, tell us something we don't already know.  That's why
    my brother brought her in for tests in the first place.
    
    Some refluxes, if they're serious, can be surgically repaired.  My
    neice's isn't bad enough to justify surgery.  I gather -- and this
    is second hand so I'm not sure I got it right -- that she has an
    abnormality of the muscle at the entrance to the bladder that
    allows stuff to get in as well as out.  Hers is pretty minor;  the
    operation is as likely to make it worse as to make it better. 
    
    The doctors did give some advice about things to avoid to reduce
    the chance of infection (always use unscented toilet tissue,
    cotton panties, showers instead of baths, that sort of thing), but
    basically it was the same conclusion the family doctor had drawn
    without going through all the expensive and painful tests.
    
    I don't know if this is comforting or not -- but the good news is
    that I think she's only had one UTI since then, and that was at
    least four years ago.  It's had no effect whatsoever on her health
    or development -- she was the star of her softball team a couple of
    years ago.
    
    --bonnie

    A few months back, I went to my doctor for a possible bladder
    infection (turned out I didn't have one), and my doctor told me
    to drink cranberry juice.  She said there's something in cranberry
    juice (can't remember what) that helps the body ward off bladder
    infections.
    
    For what it's worth...  Wish you the best of luck!
    -Cathy

Seems to me we've been through this here or in medical somewhere before
regarding cranberry juice and UTIs and how it seems highly unlikely
that the acid in the juice would do much.

Stuart

    According to my doctor cranberry juice is one way to maybe prevent UTI
    but the stuff you can buy in stores including Ocean Spray doesn't do
    much good cause it's watered down.
    
    I come from a family of cranberry growers and the juice my mom makes is
    nothing like you'll find on the shelf of supermarkets.  When I was in
    school I would gross most of my friends out when I would bring in a
    baggie full of cranberries and munch on them like potato chips.  (Now
    that I think of it I never had a UTI until I let home and stopped this
    pratice.) Some of my classmates would say that I made it look so good 
    so they would try one, I was funny watching there faces pucker.  Also 
    the cranberrys you get straight from a bog are alot better/flavorful 
    than the ones you get in the store that are reallly last years berries 
    that have been in cold storage.  Anyhow...
    
    More on Amanda....Dr Daley called Monday night.  He didn't have the
    results yet from the VCUG or Ultrasound, but he did get back the urine
    culture.  Amanda has another UTI, she was currently on Septra when they
    took the urine too!!!  He said that the kind of bacteria found is not
    affected by Septra, Amoxicillen, Bactrim and every other antibiotic I
    was used to hearing about (from Lauren, my oldest, frequent ear
    infections) so he has called in yet another prescription that according
    to the lab will cure this infection.  So we scheduled an appointment to
    see him next Friday where they will try to get a clean void and talk
    about the results of the other test.
    
    And I thought that after Lauren had her tubes and those problems ended
    we'd have clear sailing with Amanda....

    I recently got over my own UTI (yet again!) and asked my doctor about
    the cranberry juice.  He said he hadn't seen any conclusive evidence
    that cranberry juice worked or didn't work, but if it gets the patient
    to drink the amount of fluid needed to help flush out the infection
    then so be it.  Let's be honest - if the doctor says "drink lots of
    fluids" how many actually do it for the specified time?  Whereas if the
    doctor says drink x-amount of cranberry juice you tend to follow
    through a little more carefully!
    
    Conni 

	My 9 year old daughter has had a bladder urgency problem for nearly
	3 months.  She had a number of cultures, all of which were negative.
	She also had been on a variety of anti-spadmodics, including
	ditropan, all of which seem to do nothing to help the problem.
	She was also on BACTRIM for a month.

	After a month of ditropan, she really didn't want to continue, so
	we are trying the lots and lots of water solution.
	The doctor's office said she might have to be on ditropan a long
	time before it takes any effect, but a month seems long to me
	to have no effect yet.  Any experience on this?

	Leah did have a bacterial UTI when she was two, and had a VCUG and
	an ultrasound at that time, both of which were normal.

	Any experience, advice on this one?  Thanks.  Eileen

    You might want to check into food allergies or reactions, Eileen.
    
    I remember a friend of mine had urgency after eating certain spicy
    foods.  As long as she avoided those spices, she didn't have a
    problem.  Milk products and wheat products might be other likely
    candidates. 
    
    --bonnie

	Thanks.  I just might do that.

	I got a book out on cystitis which I plan to read this weekend,
	which makes a number of food suggestions.

	Eileen

	An RNC (bladder test with nuclear material) revealed that my daughter
	*does* have reflux, a condition	that was missed with her VCUG
	 (bladder test with X-RAY) when she was two.

	Now she is on low-dose BACTRIM indefinitely and will redo her
	tests in about a year.  There is some hope she will outgrow her
	condition she grows, thus making the bladder wall muscle more
	effective in stopping urine from backing up into the ureters.

	Does anyone have any experience in this condition actually
	correcting itself?  She is ten now, and	I get the impression
	that the Dr. wants to watch her for about two years.  Anyone have
	a child who has been through the correcting surgery?

	Thanks in advance,
	Eileen

    My stepdaughter has had bladder reflux since infancy, and was on low
    doses of one drug after another. At age 8  she had the surgery to close
    the hole, and came through it quite easily. For a while her urine
    tested fine, but has since had a couple recurrences of infections.
    

    My neice was diagnosed with bladder reflux when she was 9.  She's
    now 13 and hasn't had either drugs or an infection for well over a
    year.  So apparently it has healed itself.
    
    --bonnie

    My daughter Amanda, will be two next month.  She has bladder reflux and
    is on 1 teaspoon of Septra, at bedtime, for a year.  She has to have
    her urine tested every three months.  At the end of the year
    (September) she will see the urologist and see how things have
    improved/where we go from here.
    
    The only draw back from the medication, is that she has gotten a couple
    of yeast infections, but we have some medication for that when it
    flairs up.
    
    My one concern with Amanda is that I (and everyone who knows her,
    except her doctor) think she drinks EXCESSIVELY!  By excessively I'm
    talking 64 oz a day.  This is mainly juice, some milk, hardly ever
    water.  She does eat, and she is very active, so Dr. Daley has pretty
    much ruled out diabetes, although he did say they will check her urine
    for that (she had her physical on Monday).  Does anyone else have a
    child that drinks this much?  She putting us in the poor house!!!
    
    /red

     My one year old son Anirudh, is having bladder reflux. It all started
     when our pedi found that he was not gaining weight. After a series of
     urine analysis and cultures ( the baby was catheterized for 6 times in 
     a span of month !) which confirmed persistent UTI, VCUG confirmed 
     that he does have reflux. Now he is on quarter teaspoon of Bactrim
     and our Urologist says he is too young for any corrective surgery
     and till then he has to be on the antibiotic. Only hope is that he will
     grow out of it.

Re 25
>>    My one concern with Amanda is that I (and everyone who knows her,
>>    except her doctor) think she drinks EXCESSIVELY!  

    My Pedi and Urologist suggest that the kid be given plenty of fluids.
    It seems this will result in flushing the stagnant urine from the ureter,
    there by minimizing the chance for bacteria to breed.

    I  heard that it is rare to find UTI problems in male kids. I am looking
    for people who had been through this kind of a problem . What percentage
    of kids having reflux problem grows out of it ? 

    - Srini 

    re: .25
    
    Well, the recommended amount of water for an average adult is 6 to
    8 glasses of liquid a day, more if you're active.  That works out
    to 48 to 64 oz. of water a day minimum.  So if Amanda is very
    active, she's probably well within normal range. 
    
    --bonnie

Re: .26

Our son Kai has had two UTI's in his first nine months, his urologist suggested
doing a VCUG which showed no (apparent) reflux, so our case isn't exactly like
yours. He's currently on Septra until he's a year old when we will test again.
They've done three renal ultrasounds to check the kidneys (growth, swelling,
voids) and he's shown some slightly unusual voids in the kidneys.

He is uncircumcized. Our urologist said that early UTIs occur in approximately
3% of uncircumsized male babies - unusual but not unheard of.

	-- Charles

    Well, It does make me feel good to know that drinking alot is healthy
    for her, but it sure is EXPENSIVE!!!  
    
    My best wishes to those who are going through this.
    
    Roberta

    Roberta,
    
    Will you daughter drink water?   It's definitely cheaper and probably
    better for her all the way around.   If she doesn't like water, you
    might try diluting the juice that she drinks (maybe 3:1 juice to
    water).  I do this for the whole family and don't notice a big
    difference.  
    
    Carol

    Hi Carol,
    
    Unfortunately she will not dring straight water(YET).  But last week as I
    was diluting her apple juice (she can't drink that straight), I decided
    to see if I could fake her out by adding water to her other juices.  So far
    it's working, each day I add more water and less juice.  Hopefully,
    I'll have her drinking clear water soon.
    
    /red 

    I just wanted to add some thoughts, from the perspective that AJ had
    his Ureters (sp?) reimplanted at the age of 8 months.  He was born with
    a mild hypospadeous, he had been refluxing since birth, and had a what
    was termed a membrane obstruction in the urine carrying tube in his
    penis, making insertion of a catheter difficult to impossible.
    
    His surgery was done in conjunction with release of a fistula between
    the bowel and bladder, which is common with imperforate anus (he was
    born without any rectal opening, necessitating colostomy at birth).
    The surgery went well, he had tubes inserted directly into the bladder
    just above his pubic bone for a few days, he had the tubes removed the
    day he went home and hasn't had a UTI since then.
    
    Prior to the surgery he had had VGUG, ultrasound, IVP's and all the
    miserable tests necessary to definitely determine the surgery was
    necessary.  He has only a tiny scar, less than an inch, where the tubes
    were, and no memory whatsoever of that particular hospitalization.
    Because of his bowel and bladder problems, however, he has been slow in
    toilet training.  He just turned 4 and we think he's finally turned the
    corner on being both clean and dry.  We thank the psycologist who
    specializes in toileting problems as much as his surgeons for this!
    
    Will talk off-line to anyone who needs to.
    Lyn

	Here's new on for you.  In .20, I explained that Leah had a RNC
	which showed she had reflux.  Since it was mild, the Dr. was
	mystified why she showed such high urine retension (70-90cc) after
	being cath'ed.  (They pushed a little on the belly to get the
	retained urine out).

	So she went for a uro-dynamic test, which was fascinating (for us,
	probably not for Leah).  She was cath'ed and then tested for
	bladder pressure and sphincter function.  It showed that when her
	bladder pressure went up and she was told to void, her sphincter
	relaxed *but* tightened up while there was still bladder pressure,
	causing her to retain so much.

	Few of us can really differentiate muscles and do the right thing
	consciously (most of us going through natural child birth probably
	got yelled at a lot by the nurse for pushing with the wrong
	muscles).  So she is going to 'bio-feedback' classes to train her
	to isolate and relax her sphincter muscle.  Let you know how it works.

	Eileen

	I am a recent reader of this conference and I'm still catching up. This
may be late but might help others later.

	I am (unfortunately) becomming an expert in this area. My wife and I
often kid that one of us has DNA that needs help in the plumbing department.

CASE #1

	My 3 year old daughter (Kelly) was diagnosed with reflux at about
9 months. She was running a fever and had a yeast infection. Her pedi told
us this was very unusual for a child her age and ordered tests. Sure enough
she had reflux.

	As has been stated previously, the recommended treatment has been
antibiotics to prevent infection (keep the urine that is backing up in 
it's sterile form), take a urine sample every 3 months, and do a VCUG 
each year.

	She handled the first set of tests at 9 months very well. Probably too
young to know any better. Last year, she didn't do very well but they saw
enough to know that she still was refluxing. One byproduct of the constant
antibiotics is that she has NEVER been sick or run a fever since. Although
I often wonder how sick she will be when she gets off of them.

	She will be going for the full suite of tests again next month
and I'll let you know how they go.

CASE #2

	My son was diagnosed as having one multi-cyctic, hypoplastic (sp?), 
kidney at 16 weeks...IN UTERO!!!! My wife was part of a study being done
to assess the benefits of routine ultrasounds during pregnancy. On the 
Wednesday before Thanksgiving at 6:30 p.m. we had our first of three
scheduled ultrasounds. Having seen my daughter go through several, I was
somewhat familiar with the routine. I started to get suspicious when the
technician became very quiet and spent a LONG time taking many pictures of
one area. Later, the doctor on call explained to us that the left kidney 
didn't look right but "don't worry. I don't think its cancerous." Needless
to say, we had a rather anxious Thanksgiving since we now had to wait until
Monday to talk to any of the doctors.

	The short story is that this, while not a high percentage, is a
condition that is well understood, and treated quite often at Children's
Hospital in Boston. We then had ultrasounds done every month during
the pregnancy to monitor the development of the cystic kidney. The
cysts can sometimes continue to grow causing problems with a vaginal
birth. We were lucky in that they didn't grow much from 5 months on.

	The next decision was what to do about it. The options were;
#1 nothing - no harm being done, why bother. #2 corrective surgery - this
was only an option if there was still some function in the kidney.
#3 removal of the kidney.

	For many reasons, the primary ones being that there was no function
in the kidney and it was not clear if there were complications ( they
found during the surgery that there were), we elected for option #3 when
Chris was 4 months.

	He sailed through the surgery and there is now great piece of
mind knowing that all of the "bad stuff" is gone. You only need one 
kidney (in fact the doctors claim you don't even use 100% of one). His
only restriction is the recommendation that he never play foodball or
hockey. While I am a sports nut, it doesn't bother me too much that
he won't play those sports.

	The surgery also provided evidence that he may have outgrown his heart
problems and may be off the digoxin soon (I'll save that story for another
time). Now, if we can lick the newly developed stomach reflux with the
two additional medications we'll be home free. Anyone know how to buy
stock in CVS? :-)

							Mark

    Thanks so much, Deb.  There is a ton of excellent info in 181.*
    that answered a lot of questions for me.
    
    Donna
    

This past Wednesday, Sept 25th, our 4 month old son Michael had a followup
ultrasound on his left kidney and ureter (tube connecting the kidney 
and bladder), the results were not good.  Seems the kidney and bladder are
further dilated than before.  He is scheduled for a renal nuclear scan this
Monday to determine the function of the kidney and compare it to the 
previous scan done when he was three weeks old.  The Uriologist(sp) will 
probably schedule surgery within the month to correct the problem.
 
When Michael was a week old he had  a bacterial infection which got 
into his bloodstream. This was the result of urine getting back into his 
kidney due to this dilation.  We came very close to losing him for a few 
days.  He was in Boston Children's Hospital Newborn ICU for two weeks. While 
in the hospital, the doctor's found out that his ureter was swollen, but at
the time could not find a blockage due to the dilation.  Rather than perform
surgery right then they decided to see if the dilation would go down and
keep him on antibiotics.

Both the Uriologist and Radiologist were surprised by this ultrasound,as
we were too.  Michael doesn't seem to be in any pain.  He is the happiest
baby and looks great.  To say the least I am a basketcase and very 
distressed.

Now that I've rambled.  Is there anyone who has gone through this procedure 
or a similar one? We were told it will be about a 3 to 4 hour surgery. Also
any input on the uriology(sp) group associated with Children's would be
greatly appreciated.

Thanks,

Pat K.

Pat,

	I've detailed my son's problems in an earlier reply to this note. 
The short story is that he had a defective kidney removed at 4 months.
He had it done at Children's, it was a 3-4 hour surgery. It was done on
Tuesday, by Saturday you would have thought nothing had happened.

	They went in via a <1" incision in his side. By Saturday you could
pick him up by the sides and he didn't even notice. Now there is a barely
perceptable scar. To look at him you would never know the difference. He's a
big, active, healthy 1.5 year old. You only need one kidney, actually less than
that, to remain healthy. Nature just provides overcapacity for cases like
ours. The doctors told us that some estimates are that almost 20% of the
population only have one functioning kidney. My mother knew a man who found
out at 83 that he had only had one functioning kidney all his life. And he
lived to be 91!

	As far as the urology department at Childrens, I can't say enough good
things. Dr. Mandell was Chris' doctor. He is a recognized world expert on 
pediatric urological problems. He did the surgery. What most impressed me was 
that a world renowned (sp?) doctor was willing to spend as much time with us
as needed, before and after the surgery, till we felt comfortable that we
knew what was going on and what to expect. He doesn't have the swelled head
that many in his position seem to acquire. He's been great! He runs the
department so I assume that his actions are reflected in the department.

	Please feel free to contact me if you want to talk. And good luck.

							Mark

    Mark,
    
    Thank-you for the response and the feedback.  Dr. Peters did spent
    a long time with us explaining that Michael would be fine even if
    he only ends up with one kidney.  He also eplained that Michael
    would be up and around within a week, whereas if it was an adult
    we would take two to three weeks to recover. 
    
    Again thanks very much,
    
    Pat
    

    AJ had both of his ureters re-implanted at 6 months. His was a Umass
    medical, so I can't comment on Childrens.  He had what looked like a
    C-Section type of incision.  He also had his tounge-tie release at the
    same surgery, I personally think that bothered him more.
    
    He had a suprapubic urine catheter, with a drain tube going to each
    kidney, which allowed the doctors to monitor the kidney function
    postoperatively.  He was fine, he had some pain reducing drugs for the
    first 24-48 hours, and only tylenol after that.  He was home within a
    week, within a couple hours after the drain tubes were pulled.
    
    I think I suffered more than he did!
    
    The wonderful(?) part of this is that my birthday fell during the
    recovery period.  My husband, bless his heart, who has trouble boiling
    water, baked me a cake and brought it to the hospital.  We of course
    shared it with the great staff on the pedi floor.  He knew better than
    ask me to leave AJ, I just wouldn't do that. (we did get out for a
    belated birthday dinner a couple weeks later)

    Michael had the renal scan this past Monday.  The poor little guy,
    it took 2 different technicians four trys before they were able to get the
    IV into a vein.  The test was almost an hour long.  Michael finally
    fell asleep from exhaustion due to crying for so long.
    
    I spoke with the Doctor last night and he will require surgery in
    the next month.  Both kidney are in great shape! There is a
    significant blockage near his bladder in the left ureter. If he
    doesn't have the surgery he will evenually loose function of his
    left kidney. 
    
    Today, I will be calling to schedule the surgery and one more test known
    as an IVP.  The doctor told me to plan on hime being in hospital
    a good week.  Also, he will probably have temporary tubes, for a
    few days, inserted in the ureter until the swelling goes down.
    
    That's it for now.  Thanks to everyone who responded.
    
    
    -- Patty

    Michael's surgery is scheduled for December 5th.  We were told to
    expect him to be in the hospital a good week.  He will
    have the drain in ureter, sounds similar to AJ's experience that
    Lyn mentioned in an earlier note.             
    
    Michael's doctor is Dr. Craig Peters, who is an associate of Dr
    Mandel. We feel very good about the care and attention he is receiving
    from Dr Peters and his staff.
    
    Friday nite I had a message from the Drs. office to call them back.
    When I called, I was informed that they found some bacteria in
    Michaels' urine culture and due to his history were changing his
    medication.  Boy was I scared!  All I could think of was not another
    bacterial infection again.  Basically, it's a smal amount, but he
    is building up immunities to the amoxicillian, so they switched
    him to Bactrim. A 10 day dose twice a day to kill the bacteria, then 
    a once a day dose until the operation with followup cultures.
    
    So looks like we're on hold unless there's a cancellation prior
    to December 5th.
    
    That's all for now,
    
    Pat 

    Well, this past Thursday I received a call from Children's Hospital,
    because there was a cancellation.  Michael's surgery is now scheduled
    for November 21st, next Thursday.  Monday the 18th we go in for
    an IVP test and his pre-op exam.  He'll be in at least until
    Thanksgiving maybe longer.  
    
    I'll be able to stay over with him.  There's a chair that turns
    into a cot in the rooms for a parent to stay with a child.  I dread
    this operation, but at the same time can't wait until this is over
    and done.                 
    
    You would never know that he is sick. He's attempting to crawl,
    is sitting up and saying "Dada".  We were told not to be surprised
    if initially after the operation there is a slight delay in his
    development.  Has anyone experienced this and to what degree if
    any was there a delay?
    
    Thanks to everyone who's responded in notes or sent mail or called.
                                                   
    Pat K.
    
    

    Pat, first let me tell you you will be with me in my thoughts and
    prayers.  Second, from my experience, I wouldn't expect any major
    delays.  AJ was monitored by the developmental people from early months
    through their "discharge" of him at roughly 3 years, and the only
    developmental delays noted, we blamed ONLY on his prematurity, NOT due
    to all of his surgeries.  If we took his age, and subtracted the numbe
    of weeks he was premature, his actions were right on target.
    
    Sounds like you will have much to be Thankful for this year!
    Lyn

Pat,

	Good luck. As I stated earlier, one week after this was done to my
4 month old son (now 1.5 years), you would never know anything happened.

							Mark

P.S. Who's doing the surgery?

    Lyn, Mark and those who sent me mail,
    
    Thanks for encouragement and support, it's greatly appreciated.
    
    I apologize for not responding sooner. We've been on the run this 
    week, since our sitter is sick with strep throat and ear infections.
    The backup sitter is also sick. So my husband and I are juggling 
    taking care of the children and working. One of us  goes in 
    at 6:00 am and the other at 1 or 2 pm.(It's amazing hardly anyone 
    on the road at 5:45 am or at 8:00 PM ;^)! ) I don't want Mike getting 
    sick with the surgery scheduled for a week from today.
    
    Dr. Craig Peters from the Uriology department at Boston 
    Children's Hospital, an associate of Dr. Mandel's who I believe
    Mark stated in an earlier note performed his son's surgery, is 
    performing Michael's  surgery.
    
    Thanks again,
    
    Pat K.   
    

Yesterday was  Mike's pre-op and a special IVP test.  The IVP is a 
special x-ray/dye test  to check the kidneys and stuff.  The radiologist 
uncovered further problems that no one anticipated.  They seem to think the 
bacterial infection damaged his hip joints in the growth areas.  

We were called back to the uriologist office after the routine pre-op work and 
informed then what radiology found but that further x-rays were required.
The uriologist told us he spoke to and scheduled us if we were up to it 
to see an orthopedic surgeon at Children's after other x-rays were complete.

Radiology performed further x-rays to exam the rest of his joints as well.  
The rest don't show any damage at this time.  

In order to find out the extent of damage the orthopedic surgeon must 
inject a dye into his hip which is done while he is under.  So the uriologist
thought while he was under to have this procedure done sometime during the
surgery on Thursday.  This way they save having to put him under a second 
time.

The orthopedic surgeon wouldn't even say what the treatment would be, but did 
mention body cases and braces as a possibility. There is definitely damage
but to what extent they are not sure or speculating until after the dye test.

Now we have to get the HMO through Mike's pediatrician to approve this 
additional procedure before Thursday.  Good thing the orthopedic surgeon 
uses the same pediatrician for his own kids and know's him.


Patty

    Good luck Patty,
    
    I am so sad to learn of the extent of Mike's problem, and that he may
    need more surgery.  May your son be blessed with rapid healing.
    
    Laura

Today is my first day back to work, since Mike's operation.  We came home on 
Thanksgiving Day!!!  Both procedures were successful!  There was a blockage in
the ureter about a centimeter long.

We arrived at Boston's Children's Hospital at 6:15 am on November 21st.  The 
operation finally was underway around 8:00 am.  The orthepedic surgeon finished
about 9:30 and the urologist surgeon finished at about 1:30 pm.  We finally  
got to see Mike in recovery about 2:00 pm.  The rest of the day is a blur.

Mike was restrained by a harness until the following Tuesday.  This meant I 
couldn't hold him at all.( This broke my heart everytime he cryed all I could 
do was stroke his head or arms )  They had to keep him flat on his back until 
most of the tubes were taken out.  He had an epidural for the first 48 hours 
for the pain from bladder spasms.  Mike was such a good little trooper through 
it all.

Tuesday he had a steintagram (sp) to check the ureter and this test was 
positive so the tube in the ureter was removed.  I finally got to hold him, 
hug and rock him that afternoon. (I'm not sure who was happier! ) 

On Wednesday morning he had an MRI (magnetic resonance imaging) test.  This is
a type of X-ray of tissue using magnetics.  This showed the extent of the hip 
damage.  Dr. Kasser the orthepedic surgeon came by that afternoon and said 
there is damage but it is fixable.

The last tube came out Wednsday at noon.  In fact Dr. Peters, the urologist
removed it, which is unheard of for a surgeon to do according to the nurses, 
usually only the residents do this day to day stuff.  Dr. Peter's came by
at least once a day or more to check on Michael.  I can't say enough good
things about the urology department at Children's.

Gotta get back to work.


Pat K.

    Pat, you really had something to be Thankful For on Thanksgiving day! 
    I am so glad this is for the most part behind you!  It sounds like your
    little guy had a much worse time of it than AJ, I feel so badly you had
    so much to endure!  I remember that was probably the hardest of all the
    surgeries to handle, probably because there just is so little you can
    do to help.
    
    I do hope recovery is well underway, God Bless you!
    Lyn

Pat,

	Nice to hear things went well and you have this over before the
holidays. Good luck.

> I can't say enough good
>things about the urology department at Children's.
>

	Seconded.

							Mark