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Barb
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Myths about Hydranencephaly
Myths Brochure
Dear Doctor Letter
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Other Therapy for Children With
Hydranencephaly
Therapy for our children isn’t just stretches.
Here are some pictures of several of the children doing therapy.
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Using a ball to help Emily with balance and head control
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When sitting, support at Noah’s chest to maintain good straight posture.
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On tummy bounce gently |
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Roll forward, back and side to side |
Sitting, support chest & head bounce gently |
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Lie on back and gently rock side to side and
back to front |
Heather is getting stretched in a different position
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Working on head control for Heather |
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Using a foam block to work on head and arm use for Heather
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See how many different ways a large ball can
be used in therapy. |
Hydrotherapy/Swimming, preferably in a warmer-than-average pool.
Any exercise or movement done in the water will be easier and more effective at
exercising muscles. Recreational therapists may be used to teach your child how
to swim. For some people with cp, swimming is their only independent mobility.
Here are some pictures of Heather
receiving the same sorts of exercises as above but in the water.
More Types of Physio:
Horseback riding:
Hippotherapy
http://www.americanequestrian.com/hippotherapy.htm
Here are pictures of 2 of the children horseback riding:

MOVE
http://www.move-international.org/about
What MOVE is and isn't
http://www.move-international.org/stories/storyReader$58
Other Types of Therapy:
Here are some less known treatment strategies that some of our families find
help their child. Again, they're only presented here as a possible hint of a
treatment tha might help your child. Please sonsult your child's Dr. or
Therapist before seeking out any of these treatments. I am just presenting a few
links you can go to to get more information. I am in no way promoting a specific
treatment
Infant
Massage
Here are some links to further information on this way to help your baby or
child relax and develop
http://www.infantmassage-imis.com.au/benefits/index.html
http://iaim.homestead.com/Benefits.html
Chiropractic
Care for our kids personal experience
Noah, age 3 ½ : We have now been seeing Noah's
chiropractor twice a week for about 6 months. We have been so lucky to have
found such wonderful people who really care about helping anyone (especially
special needs kids) to get well and stay as healthy as possible (they usually
charge $38 per visit but are seeing Noah for free and I am now going and they
only charge me every fourth visit).
Our chiropractor uses a technique called sacro-occipital technique. This
technique doesn't involve a lot of 'back cracking' but lots of gentle pressure
on different parts of the body to restore health by opening nerve channels so
that the body can heal itself, and/or to correct spinal distortion and potential
nerve failure. Our chiropractor Naomi has given me some information on the
technique she uses, so I will firstly explain the 'technical' side of it and
then will talk about how it has affected Noah.
Chiropractic has been based on the scientific fact that the nervous system
controls the function of every cell, tissue, organ, and system of your body.
While the skull protects the brain, the spinal cord is more vulnerable, covered
by 24 moving vertebrae. When these bones lose their normal motion or position,
they can irritate the nervous system. This disrupts the function of the tissues
or organs.
It has been shown that cranial bones move and this could affect the movement of
cerebrospinal fluid. CSF is supplied to the nervous system through a gentle
pulsing action of three pumps. The first pump is located in the skull, the
second is the juncture of the skull (Occiput) and the neck and the third pump is
located at the pelvis (Sacrum).
Structural changes primarily to the spine and pelvis will occur affecting
balance and stability of the sacro-occipital pump. The pulses between the
occiput and sacrum will become irregular and change the free flow of CSF. This
creates CSF pressure change, increased toxicity, loss of nutrition and a
breakdown of essential nerve energy transmission.
The chiropractic objective is to re-establish structural stability, improving
neurological function and tolerance. With a higher level of tolerance the body
is better able to compensate and adapt, it becomes symptom free and increases
physiological adaptive range achieving a higher level of health.
Okay - that is the technical side of it all. Whenever Noah sees Naomi (our chiro)
she does a lot of work on his skull. I don't understand exactly what she is
doing or feeling but she makes sure all the bones are moving well and often
adjusts things by just rubbing a little at the top of his neck, or moving the
bones in his skull a little.
She then checks his pelvis is in line by checking to see if the lines where his
legs meet his groin area are even (I hope that makes sense). When his pelvis is
out of line either the lines are uneven (one will be longer than the other) or
one leg may have more creases in the skin than the other. She then just works on
his pelvis put putting a little bit of pressure in certain spots (it actually
looks like she is doing nothing but when she has finished I am always amazed at
how she has evened up the lines).
She has told me that once the pelvis is more in line and needs less adjusting
then the top half of the body stays in line a lot more also. If the pelvis is
out, then this causes the rest of the body to be out as well and therefore the
nervous system doesn't function to is highest potential. This is because the
pelvis supports everything in the body - spine, skull, shoulders, arms, legs as
well as internal organs are suspended by ligaments that attach to the spine and
pelvis. All these things must be balanced, maintained and coordinated by the
pelvis being stable to produce normal nerve action.
After she adjusts his pelvis, she then feels his spine and shoulders and often
she will say something like 'his small intestine is working overtime today, or
something else and she is ALWAYS exactly right. Whenever we go I don't usually
tell her what is going on with him until after she feels his spine etc and she
always knows what is going on with him even before I say it - such as if he is
having a bad day refluxing, a bad chest etc. She has told me that she can tell
this by the way that certain parts of the spine feel, and these parts of the
spine relate to different parts of the body. She is also really good at telling
which parts of his chest are clear and which are not by different taps that she
does.
Since seeing her I have to say that Noah's general health has been a lot better.
He seems to get over chest infections a lot quicker and without as many
antibiotics, he is having a lot more bowel movements WITHOUT medication, he is
sleeping a LOT better (all night most of the time from 9pm till 9am) and that he
generally heals from different things a lot better and is now on less medication
overall.
I have to admit I was quite skeptical in the beginning as I didn't understand
really how chiropractors worked or how they could help, but it has definitely
helped Noah. I know that not all chiropractors use the sacro-occipital technique
that ours uses, for different reasons, but our chiro explained it to me as being
more 'holistic'. Our chiro is also very interested in nutrition as well.
I had my first time with her last week and I felt amazing afterwards. I am
looking forward to having more appointments with her for myself now! LOL She
said I need a 'lot of work!'. Lucky I am not paying full price LOL
I hope that helps a little Barb. It isn't about decreasing spasticity at all -
it is more just about getting the body functioning well so that you can be as
healthy as possible.
There are a few good web sites about chiro care for kids.
http://www.chiropractic4kids.com/
http://www.icpa4kids.com/
Point Percussion Therapy:
Point Percussion Therapy (PPT) is a breakthrough technique developed in the
1980's by a Chinese orthopaedic surgeon, Professor Wang Zhaopu. PPT is a
physical exercise program. Although it is not a complete answer to cerebral
palsy, with early intervention it provides a useful practical tool that has
positive results. Mr. Mengde Yu, a leading therapist has modified PPT technique
into a simple format to suit a family program. The simplified PPT exercises are
simple, safe and easy to use at home; they are just like a baby gym and baby
aerobic exercises for your special child.
For more information go to:
http://www.members.optusnet.com.au/mengyu/index.html
Cranial Sacral Therapy
This has been suggested for a few of the children. I’m not sure how effective it
is.
Commonly Asked Questions About
Cranialsacral Therapy
The Upledger Institute, Inc.
http://www.aboutarachnoiditis.org/content/commonly_asked_questions_about_craniosacral/commonly
_asked_questions_about_cranialsacral.html
Other pages in this section:
Cerebral Palsy
Orthopedic Considerations
Medical Treatments for Spasticity
Orthopedic Surgery links and
resources
Orthopedic Surgery Personal Experiences
Therapy for children with
Hydranencephaly
Range of Motion Therapy
Principals of Positioning
Positioning:
Orthotics and Splints
Orthotics and Splints Experiences
Equipment
Wheelchairs
Alternate Positioning
Standers
Personal Care: Practical
Information
Practical Care: Transportation
Practical Care: Carrying and Lifting
Sleeping Medications
Glossary
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