Other
conditions sometimes seen in children with Hydranencephaly
Bradycardia means a low heart rate. Most of our kids tend to have a low heart
rate especially when sleeping. This ties in with the lack of brain tissue. The
part of the brain that regulates heart rate may be missing or damaged. I've
found very little info on the 'net except about emergency resuscitation. It
should always be investigated but if there are no problems found you can,
hopefully relax a bit. Kayda's heart rate when sleeping was often 35-50 beats
per minute. Normally below 50 is thought to be an emergency.
Hypothermia means a very low temperature. A normal temp. is 96.8 F or 37C.
There are a lot of variations in what is considered normal for a particular
person. In talking with other parents of children with Hydranencephaly, it
appears that most of our children tend to have a lower
than "normal" temperature. When Kayda is ill her temp has gone as low
as 33.3C (92F). I know that if her temp is 35 or higher she's probably not that
ill. This, again, ties in with the part of the brain that regulates temperature
being damaged or missing. For Kayda I try to help her control her temperature by
keeping her wrapped up in blankets. When she's very cold I use an electric
"throw" that has a nice long cord. Also, our kids tend to have trouble
keeping their temps from going too high in warm weather.
Some of the children I know of have an underactive or inactive
thyroid gland. Again, it goes along with what part of the brain is present or
missing. This link gives good information about Hypothyroidism.
Hypothyroidism in Infants and
Children: Low Thyroid and its
Effects on Newborns, Infants and Children
http://www.thyroid-info.com/articles/hypokids.htm
Synthroid
This is the most commonly prescribed
medication for hypothyroidism
http://www.medicinenet.com/levothyroxine_sodium/article.htm
I am including information about latex allergies as it is a growing problem
among people with multiple health problems. Previously, I was aware of this
condition but thought that it was like other allergies-you didn't worry about it
until the person was confirmed as being allergic. Once Krista started showing a
reaction to latex and
I started researching it I learned that I'd been wrong. Every exposure to latex
increases the chance of an allergy and a serious reaction. What I've learned is
that parents of
children with multiple health problems are often told to just treat their child
as though they were allergic to latex right from birth. With Krista, I noticed a
slight rash one day where a latex tourniquet had been laid-never done up, just
lying on her arm. I told her pediatrician and nurse and we agreed that she
should be treated as though she was latex allergic. We sort of thought that we'd
over reacted and at the most had a mild allergy. Earlier this year surgery
was planned and the hospital wouldn't accept "probable latex allergy"
so she was tested. Even the allergist was shocked at the severe skin reaction
she had to the mild latex solution that was put on her arm. It turns
out that she has a life threatening latex allergy. And this reaction came after
a year of avoiding latex. So now, I have to be on constant guard to keep
her away from latex. Just the other day as she was getting on the school
bus I saw that there were balloons near where her chair goes. Latex is
everywhere. Noone is born with a latex allergy. It is acquired.
So, now I tell everyone that it can be prevented. I've included several
great links to more information about this preventable allergy.
Q & A: Latex
Allergies
http://www.latexallergylinks.org/QandA.html
Central (caused in the brain) Diabetes insipidus (DI) relates to
the fact that the brain lacks or doesn't have enough of the hormone that tells
the body to stop "peeing" This means that the person puts out too much
urine which causes the sodium level to go to
high. It is treated with a medication called DDAVP. Kayda has this condition but
apart from when it was first diagnosed hasn't needed the DDAVP. We control her
sodium level by giving her large quantities of fluids and by keeping a close eye
on it when she's ill. She had mild symptoms from a very young age but it wasn't
confirmed until after her last hip surgery. At that time she nearly died from
it. I mention it here as something to be aware of as a possibility.
Diabetes
Insipidus info Excellent explanation by nurse who does
Kayda's care plan
The following medication is what is
usually prescribed for the treatment of Diabetes Insipidus.
Desmopressin
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682876.html
Drooling is another common problem in children with
Hydranencephaly. The following link gives an excellent perspective on Drooling
and it's treatments. It is from the Special Child online archives (http://www.SpecialChild.com
) and is used with permission from the Editor.
Sialorrhea
Excessive Drooling in Children with
Disabilities
http://www.specialchild.com/archives/ia-037.html
Medications Used for
Excess Drooling
Disclaimer: I have
included information on 3 of the medications discussed in the previous article
which are frequently prescribed for relief of drooling/excess saliva in our
children. This material is for informational purposes only. It is taken from
websites and is not intended to be a substitute for a consultation with your
child's Dr. I have included the material from each site in it's entirety so some
information will have nothing to do with it's intended use for our children.
Atropine Sulfate:
http://www.hopepharm.com/saltropine/sialorrhea.html
Scopolamine Patch
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682509.html
Glycopyrrolate
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a602014.html
Constipation
Unfortunately this too is
a common problem for our children. According to our survey 78% of the children
have trouble with constipation. There are a couple of reasons our children tend
to have this problem.
-
Because they don't move as much as other children food doesn't move through
their systems as well
-
Because they may have high tone throughout their body and limbs it also
applies to their digestive systems.
According to the parents
that have filled out the questionnaire and from the discussions we've had on the
mailing list on this subject, most of our kids need laxatives, suppositories
and/or enemas from time to time. I tried every laxative under the sun for
Kayda. Some worked for a while, and others, even in very high doses didn't have
any effect at all. The following article gives an overview of constipation,
causes and treatments. It's not entirely applicable to our kids but may be
helpful to some. I've also included a "poop goop" recipe at the end. I made
something similar to this for Kayda. It worked for a while. I had to stop using
the "poop goop" due to the number of calories in it, so for awhile I was adding
senna powder directly to her formula. Again, it worked for a while and then
didn't any more. There is also a commercially available product (here in Canada
anyways) called Fruit Lax. I preferred to make my own as I could then make sure
it was blended smoothly enough to be put in with her formula and given via gtube
pump. I finally resorted to Magnolax.
One thing to be aware of,
is that laxatives with mineral oil shouldn't be used if there is any chance your
child is refluxing and/or aspirating. Oil is the worst possible thing for lungs.
Once again, for Kayda it was a balancing act. We decided that the problems that
go with extreme constipation, far outweighed the risk of aspirating on the
Magnolax. I also used suppositories as needed.
Reminder: Always discuss
these treatments with your child Dr. before trying them. They are presented here
for informational purposes only.
Chronic Constipation and Encopresis
in Children
http://www.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/Constipation/
Why do children become constipated?http://www.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/Constipation/causecon.cfm
What are the symptoms of chronic
constipation?http://www.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/Constipation/symptoms.cfm
How do we treat chronic
constipation?http://www.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/Constipation/treatcon.cfm
Miralax
Miralax is the laxative that seems to
work the best in our children. Here is a little bit of information on it for
reference purposes. Miralax is available in the US on prescription only. It
isn't available in Canada. The Canadian equivalent is Colyte (or Golytely). It's
what is used to clean out the bowels before medical procedures. However, given
in small amounts it is a very effective laxative. The main difference from
Miralax is that it also contains electrolytes.
http://www.fruit-eze.com/brands/miralax.html
Chris Taloff's Famous Poop Goop Recipe!
Contributed by Chris Taloff
Note: If you have questions about the safety of this
recipe for you or your child, please consult your physician.
1/2 pound figs
1/2 pound prunes
1 cup molasses
1/4 pound powdered senna (from senna leaves if powder not available) (Senna can
be bought at most health food stores)
step #1 Grind figs and
prunes very fine and mix together
step #2 Warm the molasses
step #3 Stir senna into molasses thoroughly
step #4 Take the senna and molasses off heat and put in figs and prunes.
step #5 Stir well and preserve.
Dosage: begin with 1/4 of
a teaspoon every night before bed. It's a maximum dose of 1/2 teaspoon per day.
DO NOT EXCEED THIS MAXIMUM DOSE!!!
Vesicoureteral Reflux
A few of the children have
had this condition so I've included some information just in case anyone else
encounters it in their child.
http://kidney.niddk.nih.gov/kudiseases/pubs/vesicoureteralreflux/index.htm
Vesicoureteral Reflux
http://pediatricurology.upmc.com/VesicoureteralReflux/Treatment.htm
Precocious puberty
This is another common
occurrence in children with Hydranencephaly-both girls and boys.
http://www.mayoclinic.com/invoke.cfm?id=AN00091
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