 
'Must-Haves'
for Parents of Children with Nephrotic Syndrome and other kidney
diseases
As
a parent of a child with kidney disease there are some 'must-haves'
that will make your life a lot easier. Over the years many of our
parents have come up with some great ideas that have really helped.
Idea's like daily journals to track daily albumin output when using
albustix reagent sticks for urinalysis or multistix reagent sticks.
We've also listed medication tips, information on handy items like
emla cream to help lessen the pain of blood work, a link to the
Nephrotic syndrome handbook, and children's multivitamins. We hope
you find the following hints and tips helpful.
Albustix Reagent Sticks
Multistix Reagent Sticks
Gadgets & Journals
Pill Containers &
Splitters
Emla Cream
Nephrotic Syndrome Handbook
Albustix
If your doctor or nephrologist hasn't recommended Albustix then
please do yourself a favour and get some. Albustix are reagent sticks
for urinalysis that check for protein in the urine. Most parents
in our group check their child's urine daily. Some check a few times
a week. Some check once a week. How often you check depends on what
makes you comfortable. Test the first morning urine
only as this is the most accurate reading of the day. Once a child
is up and active, a bit more protein is released into the urine.
If you check later in the day you might get a higher reading than
what you would have gotten in the morning. The first morning urine
is the most accurate.
Most
parents will have their child urinate in a small urine collection
container first thing in the morning. The containers are like the
ones you get at the doctors office when you are being tested for
a UTI. Your doctor may give you a few of these containers for no
charge. Ask if you can have some, and explain why you need them.
Parents with children still in diapers find it really hard to collect
urine. They've come up with a wonderful idea! Just place a cotton
ball inside the diaper. Some parents have also placed a small
piece of plastic wrap between the cotton ball and the diaper.
The cotton ball absorbs the urine and the plastic wrap (remember,
just a small piece!) stops the diaper from absorbing all the urine
from the cotton ball. You simply remove the cotton ball and
squeeze any urine into a container or right onto the stick.
Albustix
have chemically treated squares on them. Once dipped in the first
morning urine, the amount of protein in the urine will be measured
by the squares on the stick. The squares range from negative (no
protein at all) to 4.0 or 4+ (pretty much off the charts). By purchasing
Albustix, you are able to watch your child's protein output. This
is much better than assuming your child is fine only to wake up
the next day and find your child all puffy around the eyes because
of fluid retention. When your child is spilling protein wouldn't
you want to know? The longer a child spills, and the higher the
protein spillage, the longer it takes to bring them out of a relapse.
We highly recommend Albustix to anyone who doesn't use them.
Here's
a money saving tip for Albustix. They come in a bottle of 100 sticks.
Cut the sticks lengthwise up the center with scissors. Cutting them
does not harm the chemically treated squares at all so you get 200
sticks for the price of 100! We suggest you do the same and save
some cash!
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Multistix
Multistix are another suggestion. Multistix 8SG or 10SG have either
8 or 10 chemically treated squares on them. These sticks measure
many things like protein, blood, leukocytes (for infection), nitrite,
ph, and glucose to name a few. These sticks are indispensable if
you have a child that frequently gets UTI's or a child with reflux.
By using Multistix you are able to tell right away a UTI is present.
Leukocytes show whether or not there is infection in the urine.
Again, cut the sticks lengthwise and save money!
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Gadgets
& Journals
Journals
We can't stress this enough. Purchase a hardcover journal with lined
blank pages. They are very reasonably priced, and can be found just
about anywhere. We recommend hardcover because this journal will
last you a long time, so you want it to be durable. If you have
Microsoft Word or Microsoft works there are medical forms in
these programs to keep track of meds., hospital stays, family medical
history and individual medical history or you can download templates
from microsoft.com
After
a while you may start to notice some patterns developing. You might
notice that your child relapses after mosquito bites, or doesn't
relapse in the middle of hay fever season. One parent discovered
that her son relapsed after every flu shot. (That's not to say that
your child will do the same!)
Alarm
Watches are perfect for kids who need to be reminded to take
their meds. Of course, as parents we still like to keep close tabs
on whether medications have been taken but we think an alarm watch
is a step in the right direction for teaching our kids to be responsible
for their own medication needs.
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Pill
Containers & Splitters
Many
of us have the responsibility of handing out more than one medication
more than once a day. This can get so confusing, and the last thing
you want to do is mess up medication! If you find yourself frazzled
and at the counter opening and closing pill bottles 2 or 3 times
a day, do yourself a favour and get a weekly pill organizer
You'll only have to fill it once a week, and you'll be able to tell
at a glace whether or not medication has been taken.
A
pill splitter  is
another great idea and eliminates the chance of crumbling pills
and tablets into unusable piles of dust. They last about a year
or so.
Pill crushers are a nifty little idea when you want to hide that
icky tasting prednisone in some nice yummy chocolate pudding. As
parents we just have to do whatever works!!!
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Emla
Cream
Emla
cream is probably one of the best things you can buy for your child.
Emla is used to numb the skin at the site of injections or other
needle procedures (blood work) and really does work well. Emla cream
is available in Canada without a prescription. If your pharmacy
doesn't carry it, they'll order it in for you. You will
need a prescription from your doctor if you live in the U.S.
Nephrotic
Syndrome Handbook
This
handbook is offered by the Kidney Foundation of Canada free of charge
to the residents of Canada. A free copy is available online in PDF
format for those of you living outside of Canada. Other interested
parties may purchase the handbook for $5.00 Cdn plus shipping and
handling. We highly recommend this handbook to any parent
who is new to Nephrotic Syndrome. We also suggest using the handbook
as a way of educating teachers and family members about Nephrotic
Syndrome. Click
here to read or order the handbook. To read the booklet online,
you will need adobe acrobat reader. Click to download Adobe
Acrobat reader (its free). You might also want to check out
our list of books for parents,
and books for kids! Please
note: It is asked that your include your credit card number
in an email to the Kidney Foundation of Canada if you want to order
& pay for the handbook Do not include your credit card information
in the email. Email is not secure.
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