Cranial Sacral Therapy - CST

Early on in Emily's life we realized that she was and still is very sensitive to the world around her. She seemed to respond very well to Healing Touch, so I started to explore more holistic approaches to help her. I stumbled across a therapy called Cranial Sacral (CST) that seemed like a good fit for Emily and her needs.

CST is a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.

Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the functioning of the central nervous system.

By complementing the body's natural healing processes, CST is increasingly used as a preventive health measure for its ability to bolster resistance to disease, and is effective for a wide range of medical problems associated with pain and dysfunction. Taken from the Upledger Institute web site http://www.upledger.com/

I noticed with Emily that the first few sessions of CST seemed uncomfortable for her. I asked her therapist why and she said that it was probably due to her neurological condition and her cranial bones and everything being so shocked and tight from her intense seizures. Once Emily had received a couple CST sessions she began to change. She seemed more relaxed and I actually saw an improvement in her seizure control.

I also started seeing a CST therapist when I was pregnant with our second daughter. I was having major sciatica and after the first CST session I had immediate relief. I also noticed that the baby was benefiting from my session as well. As I was being worked on she would become very calm and quiet.

For more information on Cranial Sacral Therapy please contact me directly.

KristyK

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Vagus Nerve Stimulator (VNS) for Seizures

For several years we talked time and time again about the option of getting a Vagus Nerve Stimulator for our daughter Emily. We were told that she had the kind of seizures that would respond well to the VNS. However, these conversations began when Emily was less than a year old. At the time the current VNS devices that was on the market was about the size of a half-dollar. We saw how big the VNS was an realized that it would consume most of Emily's little chest. Not to mention the fact that the surgery for it would have required the neurosurgeon to make a vertical incision on her little neck just to be able to find and expose her vagus nerve. Those two things pretty much turned us off of the idea of even having the surgery.

When Emily was around three years old the maker of the VNS, Cyberonics, release a new and much smaller device that is about the size of a quarter. By this time Emily was having literally hundreds of seizures a day with no help from the six medications that she was taking. Emily has also been on all but four seizure medications available in the US and Canada and not one has been able to control her seizures. Unfortunately, each of the medications that she takes helps to some degree, but now what were we to do? So we finally decided it was time to have the VNS implanted in Emily to see if that could help control her seizures.

The recovery from the surgery was a tough one for Emily, but we anxiously awaited to be able to turn on the VNS. After a month or so we finally got to turn it on and right away we could tell it was working in some way. Emily seemed more alert and happier. I should mention that the VNS is also used to treat depression, so this could have been helping Emily in that sense as well.

After a little while at the starting frequency we brought Emily back in for adjustments to the VNS. We increased both the amount of time it is on and how intense the stimulation is. Emily didn't seem to mind the amount of time the stimulator was on and off, but she did not do well when the stimulation was turned up to 1.0 milleamperez. She would cry every time the VNS would turn on and her drooling got so bad that it was pouring out of her mouth and she was chocking on it. So we had it turned back down to .75 milleamperez and she did much better.

It has almost been one year since Emily got the VNS and I can truthfully say that it was a very good decision. We talked to many families that had kids with the VNS similar to Emily's story and many had negative things to say about the VNS. But for Emily it has been great at helping with her seizures and her overall mood.

For more information about Emily and her VNS experience please contact me directly. Thanks!

KristyK

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Hyperbaric Oxygen Therapy

Two years ago I stumbled across a story about a girl name Grace who lives in Wisconsin and has a metabolic disorder. Doctors told her mom that she would not live past the age of two. Today Grace is seven years old and the inspiration for us to bring our daughter, Emily, to receive hyperbaric oxygen therapy (HBOT). So what exactly is HBOT?

Hyperbaric Oxygen Therapy (HBOT) is the inhalation of 100%
medical grade oxygen at greater than normal atmospheric pressure. This is the equivalent of breathing 100% oxygen underwater from depths of 16.5 feet or more.

The benefits of oxygen supersaturation have become accepted by much of the international community for a wide range of conditions. The oxygen levels in the blood are increased up to 200%, and in the rest of the body, substantially more. The increase in oxygen helps to heal wounds, fight infections, reduce swelling and remove toxins from the body. As atmospheric pressure increases, so does the concentration levels of the oxygen.*

*taken from Life Force Therapies USA web site.

Emily suffers from idiopathic intractable multi-focal complex partial seizures. In short she has a neurological condition that causes her to have seizures everyday. At Emily's worst point she was have upwards of 1,600 clonic seizures in a day. She is currently taking five seizure medications and has the Vagus Nerve Stimulator (VNS) as well. We did not take Emily to hyperbaric therapy for her to gain better control of the seizures, but for all of the other benefits that is has on the brain and body. Hopefully after enough treatments the brain will realize that it no longer needs to seize.

I am more than happy to provide more details about HBOT if you wish to contact me directly. I just didn't want to create an extremely long Blog. However, here is a quick list of all of the benefits that Emily had after completing 144 HBOT sessions:

• Better eye contact - even with people she is not familiar with
• Much more vocalizing and new words
• More attentive
• Stronger core and head control
• The ability to watch something other than a Baby Einstein or Brainy Baby movie
• Better control while eating and drinking
• Better motor planning skills
• Improved response time to questions
• Better tracking of objects
• Willing to try new things without complaining
• Able to go on an outing of any length without a meltdown or any crying

KristyK

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Blog Purpose

Hello,

The purpose of this Blog site will be to help parents of special needs children connect with each other and also to find resources for themselves and their children. I plan to provide real life experiences and reviews out here and encourage you to check in frequently for new posts.

I would like this site to be an open forum where parents can feel free to post comments about things I write about or products that I have listed out here. I am a mother of two beautiful girls: Emily age four and Isabelle age 19 months. Our daughter Emily is challenged with intractable multi-focal complex partial seizures, cerebral palsy with hypotonia, cortical visual impairment, global delays, gastronomy tube, and reflux. We have taken Emily to many traditional Western medicine doctors and specialist as well as many Eastern and non-traditional specialist. I plan to provide those stories and their results out here. We have also tried and own many medical equipment pieces and I plan to Blog on them as well.

Thank you for finding us and I hope that you find this site helpful!

Kristy

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