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Other Therapy for a Child With Hydranencephaly:
 

There are a number of different types of therapy that may be recommended for your child. Here is information on a few of the most often used in our kids.

Range of Motion (stretches): This is one of the most important type of therapy for your child. It helps to keep their muscles and joints flexible. Your therapist will give you information on the specific stretches that are best for your child.

Passive Range Of Motion (ROM) Exercises: http://www.alsworldwide.org/pdfs/rom_exercises.pdf (this site has drawings of the exercises): An overview and explanation of Range of Motion Exercises which is included in the book "Caring For Your Child With Hydranencephaly"

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.

Horseback riding: Hippotherapy
http://www.americanequestrian.com/hippotherapy.htm
 

MOVE=Movement Opportunities Via Education
http://www.move-international.org/about

What MOVE is and isn't 
http://www.move-international.org/stories/storyReader$58 

This is a really interesting type of therapy which can help improve sitting balance or mobility.

Chiropractic Care for our kids personal experience 
Noah, age 3 : 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.

Here is a good web sites about chiropractic care for kids.
http://www.chiropractic4kids.com/
 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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