Talking About Real Life

Today I am embedding 4 You Tube Videos.  All of these were hosted by GBN in Chattanooga, TN.  It is a series of "Shelter in the Time of Storm".  If you have a child/family member that has been through health problems, it can benefit you to watch.

 The first 2 episodes are about my book, "Giving Him Back To God"- but specifically focuses on my journey with Caleb as a mom. 

Episode 1

Episode 2

The 3rd episode is about our marriage, 80% of marriages of families with special needs children end in divorce- we hope that sharing our experience will in some way help others. 

http://www.youtube.com/watch?v=vDtbjHpOBQw&list=UUiazR2SxWKAUF39SyuNHcTQ&index=2&feature=plcp

Episode 3

The 4th episode is about our TEAM, Team Caleb, and my sister- my "extra hands" who was such a support to me and our 2 beautiful girls- Peyton and Camille- share their experiences with their brother as only siblings can. 

http://www.youtube.com/watch?v=H6lAwAksdnQ&list=UUiazR2SxWKAUF39SyuNHcTQ&index=1&feature=plcp

Episode 4

FOR MORE INFORMATION ABOUT:

Epilepsy

These Programs

Beth's Book: "Giving Him Back To God"

Speaking Engagements

Visit: WWW.CALEBSMOM.COM



The Notebook

Finding a way to make sense out of a day in the life of a person with Epilepsy can sometimes be a challenge--why the increase in seizures today? what did we do differently? what have we changed? All of those questions become the most important questions in caring for your loved one.

There are many ways to go about organizing yourself, but clearly- keeping good records can do multiple things:

1. Give a caregiver a sense of direction in where the loved ones' baseline really is.
2. Allow better communication between the patient and doctor.
3. Increase the neurologists knowledge of the patient.
4. Better quality of care for the person with Epilepsy.

I have seen each of these things be true in our life with our son, Caleb.  In a sea of seizures, it is very difficult to see a pattern without knowing where a true "baseline" of daily activity really lies.  Sometimes 100 a day was the norm, but there were days when 1 seizure alone lasting TOO long was enough to know THIS IS NOT NORMAL.

Keeping good records let us better communicate with the doctor what was going on, what medications we had started/stopped/increased/decreased.  This is imperative on the part of the patient.  Many doctors are dealing with many, many patients--reminding them where you are, what medications you have been on, etc. is extremely important.  You may need to record Ketones, temperature, input/output, as well as seizure activity.  Also, you may need to record illnesses, runny nose, anything that can set off seizure activity.  If you know when it started, a doctor can better know how to treat the patient.

A neurologist is a doctor, an epileptologist is a doctor, both with TREMENDOUS amounts of knowledge and expertise when it comes to seizures.  However, NO ONE knows the child/patient better than the caregiver. Period.  You are the expert when it comes to your child/loved one.  So, if you are keeping good records- it is a win/win situation.  The Doctors get a better sense of the patient, they know quickly what you know- because you have recorded it.  There are no more "When did he have his last seizure?" questions that are responded to with "I don't know."  That should never happen.  If you keep records, you know, and when you are educating others about your loved one, they learn invaluable lessons.

The child/patient with Epilepsy can have better overall care because of good records.  For us, our Caleb shared many extra years with us because of good record keeping, great doctors who checked on us weekly, and because they understood Caleb, and became experts on his care just like me.  Our efforts kept him as safe and happy as long as possible.

My method of recording information was a simple notebook, each month/half month we started a new one.  I logged monthly totals in the back in a chart.  Now, a year later I have found a remarkable FREE website that assists you in record keeping and logging other medication changes, increases, decreases and the overall feel of the patients day.  The site is : http://www.seizuretracker.com/  It is an amazing tool, and some day I hope to log all of Caleb's information there just to have.  There are charts/printouts that you can take with you to the Dr.'s appointment and it is forever saved online! 

A Notebook, Log, Online, whatever method you choose, keeping GOOD records can be of GREAT benefit to any caregiver.

Best wishes to each of you on your journey,
Remember each day to:

Be The Blessing,
Beth

Seizure Dogs

While we never had a trained seizure dog, I can tell you from experience, that our sweet dog, Abby, knew when Caleb (our son) was seizing.  She knew he was different from the start.  He didn't know how to play, so when we'd go outside, she'd gently take his hand in her mouth and lead him around the yard.  He loved her, and would just smile and laugh.  When his seizures started, she would lay quietly on the floor wherever he was, and she would stay until they quit.  When Caleb passed away, she sat on his place on the loveseat and whined for him, she knew he was gone.

Dogs are intuitive, they understand words, they have heightened senses that we aren't in tune with.  When people have seizures there are chemicals in your body that are released that some dogs pick up on, there are also visual cues that many people are not aware of that dogs pick up on.  And a seizure is an electrical discharge, another thing dogs could potentially pick up on.

Many people with epilepsy also have other co-morbidities, such as developmental delay, or Autism.  Dogs can be trained to address whatever specific disability that a person has.  Dogs are social, and can be extremely beneficial to children who are at risk of falling or wandering.

There are long waiting lists, but Seizure Dogs can be obtained free of charge through some great providers:

Canine Assistants
www.canineassistants.org

Other Links (some of them providing for free):
www.autismservicedogsofamerica.com
www.PALSwithPawz.org
www.4pawsforability.org
www.protraindog.com
www.autism.wilderwood.org

For more information on benefits of Seizure Dogs, follow this link: http://www.epilepsyadvocate.com/resources/seizure-response-dogs.aspx?src=UCB-VMP-CNS-GOO-2010-0-PS-0&utm_source=Google&utm_medium=Paid%20Search&utm_term=dogs%20for%20epilepsy&utm_content=Canine%20Assistance&utm_campaign=VMP
Dogs are wonderful companions, and can be trained to truly be a help in the uncertainty of Epilepsy.  One of the biggest struggles and "disabilities" about epilepsy is not knowing when a seizure will occur, having a dog to be able to warn families, or to warn the individual is an amazing blessing. 

Blessings to each of you on your journey.

Beth 

Epilepsy and VNS Therapy

Refractory Epilepsy simply means that seizures (one or more)continue to occur although the patient is being treated with more than two antiepileptic drug (AED) during an 18 month period.

An option for refractory patients is Vagus Nerve Stimulation therapy (VNS).  This is a simple device that is placed in a pocket of tissue in the chest.  A wire leading from it to the left Vagus nerve in the neck is then placed and it sends an electrical impulse to the brain to "reset" it.  It functions similar to a  pacemaker. VNS Therapy is not a drug and does not interact with other medications. The VNS sends periodic stimulations to the brain which help to prevent sychronus neuron firings that cause seizures. Treatment is delivered at regular intervals all day, by settings programmed into the device by your epileptologist. 

Our Caleb had a VNS implanted in May of 2008.  While his response was not as dramatic as we had hoped in stopping his Tonic seizures, he did have his Myoclonic seizure numbers to go from 300+ daily, to around 100 daily.  That in itself was a blessing.

A magnet is worn by a caregiver or by the patient that is able to be placed over the VNS device when a breakthrough seizure occurs.  This "wand" is capable of delivering an elevated stimulation to the brain to try to interrupt the seizure.

I can remember at first making sure and timing every time the VNS would send a stimulation, but eventually Caleb's settings were advanced so that it was "on" more than it was "off".   The most dramatic thing we saw was during one Tonic seizure after he'd first started VNS therapy, while placing the magnet over the device- his seizure stopped.  Although this did not happen regularly for him, even being able to stop one large seizure was a glimmer of hope for improvement.

VNS Therapy should be viewed by the family/patient as a medication.  Although it has no typical side effects that medications can have, it is a treatment that has potential benefit.  Many are concerned that it involves surgery, but I can attest that it is minimally invasive. 

Over 60,000 patients have begun VNS Therapy.  Those who benefit from VNS Therapy can achieve seizure reduction and in some cases eliminate seizures completely.  The positive effects of VNS Therapy actually improve over time, sometimes taking a few months to a year or two to reach optimum performance levels.  Medications may be able to be weaned as a result of positive VNS Therapy.

Many anxieties exist with any surgery.  However, when a patient is refractory, VNS Therapy should be carefully considered.  For more information on VNS Therapy click here :  Cyberonics

Thinking of Caleb, and the many procedures he went through in his short life, I remember his VNS experience as one of hope.

Blessings,

Beth

Grief

Grief is a difficult emotion to "work through".  Mainly, because many people, including myself, don't want to not grieve...because the grief is the feeling in your heart, that hole, that void, that place where the memory of your loved one now lives. 

However, along our journey with Caleb, one thing was apparent to me, we grieved him as he lived.  With each loss, we grieved.  We grieved with the diagnosis of PDD-NOS (Autism).  We grieved when he had his first seizure.  We grieved when his seizures continued to persist.  We grieved when he lost speech, when he lost his ability to walk, when I had to buy his first wheelchair, when his seizures became 100's every day, when he lost his ability to eat, when his stomach would not handle his feeds, when he had to have a GJ-tube placed, when his feeds had to be continual-and he lost weight.  We grieved terribly when he developed aplastic anemia, and yet during all this....during the grief, through the grief, we chose to help him live.  We hurt for him more than for ourselves.  We hurt for his quality of life, we wanted him to be happy and not to hurt.  Grief is loss. And you can grieve the living. 

If you have a child with special needs, you grieve.  Many days are filled with happiness, and through the everyday struggles you learn to appreciate the little things- the real things in life that matter.  But in the back of your mind, there is that hope as a parent, that somehow things could be better, somehow things could improve for your child, and you grieve that loss for them.

Caleb never grieved.  He didn't feel loss- he adapted.  I was so upset when he couldn't eat that for 2 months we did not eat where he could see us.  I didn't want him to "miss" it.  I would give him an empty tube to hold as I would bolus in his formula.  One day, he crawled to the kitchen and pulled up to the counter and instead of standing in front of the microwave (his indication that he wanted microwaved bacon) he grabbed the empty tube.  I cried.  He knew that this was his was of being fed- and he was right, it was time for his feeding. 

Children are so amazing.  They are stronger than we are as adults.  They adapt to situations when we ourselves are grimacing in anxiety and hurt for them.  It is okay to grieve the losses for them, that is what parents do.  However, finding a way to help them live in whatever way they can, a day at a time, that is the job of a parent of a child with special needs. 

Find a way to get through each day.  Find at least one moment, one special time with your child to just be "mama" or "daddy" and share joy with your child.  I know some days for us it was watching Caleb's beloved Barney video for the 5th time- but if it brought a smile to his precious face, it was worth it.  Some days a swing (one of the adapted swings) at the park would bring a smile, and some days the hour long pack up/drive/unload only made him agitated-but it was worth the try. 

Loss happens to everyone in life.  Along the way we all grieve something or someone.  Finding a way to overcome that loss and to be determined to find a way to make the most of life- there is the key to overcoming the feelings of despair. 

This Friday marks 6 months on earth without our Caleb.  We no longer grieve for his losses, for he has gained the glory of Heaven, the riches of health, and his spirit is no longer trapped in an ill body.  We know that the grief now is purely for ourselves.  The loss in our hearts, we fill with our memories of Caleb and our love for him that will continue to help us - to live.