Hello Sharon,
I'm SO sorry that I haven't gotten back to you at all this week about your
experience. I had a medical emergency here at home, and am just now getting to
my emails. In any case, I see that you have gotten some wonderful responses
from Malcolm, and other members of the list, and they have answered many of
your questions and concerns with words that I feel would have come from my
fingertips, as well.
A couple of things that I would like to add or expound upon. Firstly, I
believe it was Malcolm who recommended an ultrasound over an IVIG. I am in
agreement that an ultrasound is a non-invasive way to check your daughters
anatomy and be certain that it is within normal limits, as well as the best way
to ascertain if she has cystitis or stones or the like.
I am 1000% for using nutritional and supplement treatments (and the like)
rather than mainstream physicians......and do so whenever remotely possible
even though I am dealing with a child who is significantly and chronically ill.
However there come times that the best options are to combine the
two.....learn from the doctors and treat from the earth. ~:-} I know that you
have been battling this UTI problem with your daughter for 3 years, and
although I agree wholeheartedly that you shouldn't have jumped the gun and done
invasive testing in the beginning, I believe that it may be time to look into
what is causing all this. As you have said, children would have usually
outgrown this by now, esp. since you have implemented the "no baths, proper
wiping with wipes" protocols. (which by the way, is another thing I was going
to recommend ~:-})
It's my opinion that you should get an ultrasound performed of her urinary
tract system, including her kidney's (looking for stones). If the ultrasound
shows no abnormalities I would recommend a test called a VCUG. Malcolm had
explained a similar nuclear medicine test called a VIG or IVIG where the radio
active dye is injected via IV and they wait to see how the kidneys pull it from
the blood stream and bring it to the kidneys and eventually the bladder. I
don't think that there is as much indication of your daughter having a kidney
problem, as there is of her having a bladder/kidney reflux problem (judging by
your explanations). (BTW, did you ever say what her creatinine is? and her
BUN? I am curious to know, as well). The VCUG injects dye, via catheter in
her urethra, directly into the bladder and watches on a monitor to see if any
of the dye "backwashes" into her kidney. It does not take nearly as long as a
VIG and gives startlingly accurate pictures. It still amazes me to watch this
take place each time my daughter gets one.
I know this is not a pleasant test for your daughter to experience at her
age.......catheterization isn't fun at any age. However, many children's
hospitals who perform this test pre-medicate with a drug called Versed that not
only relaxes them, but makes them forget what happened, so they aren't left
with the trauma of having that memory. Unfortunately, my daughter is allergic
to Versed, and has to "suck it up" and go through it unmedicated.
You mentioned in one of your emails how you had been giving your daughter
cranberry, and each time you stopped, the infections came back immediately.
Such is the case with my daughter as well. In my daughters situation, she has
grade IV reflux from her bladder into her kidney, so "dirty" urine is
constantly flowing back and forth whenever it wants, so there is no way to stop
the infections from coming. In these cases, the doctors almost always
recommend daily doses of the antibiotic Bactrim for the rest of their lives (or
until corrective surgery, which is not an option in a transplant). We have
found however, that the cranberry pill twice a day has stopped this from
happening. Yes, if we miss a dose.......she gets an infection......but I would
rather her be on cranberry everyday than an anti-biotic. ~:-}
As far as the pill swallowing, I used the same technique as one member of the
list (sorry I forgot your name ~:-{) suggested..........applesauce and red
hots. It worked wonders on my 6 year old son, however, my 7 year old daughter
is too developmentally delayed to swallow pills yet. I open the cranberry
pill, mix it with a tsp. of water and have her drink it. The particular brand
of cranberry that I recommended (Nature's Way Standardized Cranberry Extract)
does not taste bad when opened like that, so it hasn't been a problem for her
to take it that way. She has fully cooperated since day one....Thank God! And
yes......I taste EVERY medication and supplement before I give it to her (so I
know what she'll experience and can support her) and this one truly isn't bad.
(I know, hard to imagine....but try it, you'll see.)
<sigh>
Well, I've probably taken up the entire digest amount with this email. I think
that between this and the other wonderful comments and suggestions others have
made, you should be VERY equipped to make an informed decision as to what your
next step should be. I would love to hear of her progress, and also want you
to feel free to contact me offlist should you have any specific questions or
concerns.
I know that dealing with a child's illness and suffering can be unbearable at
times.......and sometimes the questions and concerns are overwhelming. Please
know you are not in this alone. Hang in there.
God Bless,
Christiane
