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

Little Things that make a BIG difference

Most every day I follow up with families I have met who have children with ASD/Epilepsy.  I wish sometimes I had a jet and could just fly over to wherever you are and help out for a few days...but in the real world, that isn't possible.  So, I thought I would make a list of the little things that always helped me make it through --and especially during busy months.

1.  Keep a bag at the door.  This bag should contain anything you need on a regular basis for your child, a days worth of meds, picture cards, sensory toys, favorite items, a change of clothes, diaper, wipes, and a favorite DVD or two.  If you have to rush to the ER, you're ready, if there is another emergency- you have enough for a day- and the rest can be brought to you later...if you make a trip to a family members home, there are things for your child that they enjoy that will keep them happy.

2.  Keep two copies of a list of your child's CURRENT medications in your purse.  You'd be surprised how that in an emergency it comes in handy.  Or if you are at the doctors office, you can just hand them the list to attach to your file--it saves time and you don't have to sit and spell them out for the nurses who are unfamiliar with Anticonvulsants.

3.  Make a Procedure bag.  Get a gallon ziploc bag and put the following in it:
*EEG wire (save some when they have one done)this is a great visual for kids so they know if they are going to be "plugged in". 
*A "No No" - this is a small splint that covers the whole arm and velcros together-if they've had an IV, they've probably had one on- keep it. (some hospitals don't keep them and it comes in handy) 
*Children's Anbesol (night time) you can put this on the area prior to a stick and it "numbs" it some to keep it from hurting quite so bad.
*Take pictures of your child in hospital situations and then keep them in this bag---when they see themselves in a hospital bed, they know what to expect.  This is especially important for nonverbal children. (Also take pictures of their regular physicians, so they can anticipate a visit.)
*Anything that can help you and your child get through a particularly difficult procedure, put it in there ( favorite band-aids, a special toy, stickers they really like)
PUT THE PROCEDURE BAG IN YOUR BAG AT THE DOOR.

4.  Keep a list of your child's daily schedule inside the door of your medicine cabinet.  If something were to happen to you as a caregiver--somebody needs to be able to look at the schedule and be able to care for your child.  This should include all med times and doses, any other medical therapies, nap schedule, and bedtime schedule.

5. Daily record.  It is important for you to keep a log of your child's successes, changes in behavior, seizures, bowel changes, illnesses, and any medication changes.  With epilepsy, when your child has breakthrough seizures the first question a doctor will ask you is "What has changed?"  If you don't keep a record, you will have no idea.

These are just a few ideas, but were some of the most helpful to me in dealing with a chronically ill child.  You never know where you will end up in a day, so being ready at a moments notice, will give you peace of mind and allow you to BREATHE.  Taking a moment every day, just to yourself, even if it's just 5 minutes, can also make a big difference and can help you recharge.

Little things, and a little organization can make a big difference, for you and your child.  Take the time to implement them and then you will be prepared for anything!!

Blessings,
Beth

Food for Thought

November is National Epilepsy Awareness month, and on the 7th of this month, the birthday of our precious Caleb.  Many are aware of Epilepsy, of its existence, but beyond that- to really be compassionate towards those families dealing with Epilepsy, to help them, to be supportive of them- that is an even bigger goal.

During this season, it is difficult for many with Epilepsy or other disabilities who have food restrictions.

So many get togethers and holiday celebrations rotate around FOOD. 

For those with allergies, make sure and remove all ingredients from your home that could be a problem for any guests.  Reading labels is important.  And make sure you let others who are bringing foods to your gathering about any allergies.  This makes it so much easier for small gatherings.

For larger gatherings it is easier to make foods ahead of time and place them in serving size portions and freeze them individually.  Then you can take out SAFE FOODS as you need to in an individual size.

Our Caleb was on a gluten/dairy/yeast free diet as well as the Ketogenic diet (a modified dairy free version) for his health.  This was extremely difficult to follow but it was necessary to follow for Caleb's well being.  It was difficult to be part of Thanksgiving and Christmas...but I made ahead foods for him and always put them on the same plates that everyone else had. 

The hardest part was when we moved to tube feeds, for me. For the first several months we didn't eat anything around him and then later we were diligent at making sure his favorites were no longer in the house.  He adapted so well.  During holiday times we always made a quiet safe place for him to be with his favorite things.  Just being with him was the most rewarding time...so think of that if you have a loved one who is unable to eat.  Just spending time with them is a blessing for them and for yourself.

Make the most of the holidays with your family and while the mountains of food will be present--don't let that keep you from being with each other and enjoying togetherness.

Those moments are the things to be most THANKFUL for.

Blessings,
Beth

Different

We're all different.  That is what makes us unique.  So when many will say just that, and how beautiful different is, then why are there so many stereotypes, social stigmas and generalizations made about people with disabilities? 

If you are reading this blog, you likely have a connection to a person with epilepsy.  Our son, Caleb, dealt with the sterotyping of "Autism" when he was first diagnosed with that, and then we dealt with seizures and Epilepsy.  Once he was too weak, and we had to use a wheelchair for him- most people were kind, but they talked as though he weren't there.  Before the wheelchair days, I'm not sure what they thought...I usually focused on Caleb and helping him- instead of dealing with the looks, and negativity.  I am a pretty thick skinned person- however, it is difficult to deal with glaring eyes, sighs, and "deal with your child" looks when things aren't going well.  But, I quickly decided to not care about what others thought, and do what I needed to do- which was take care of Caleb.  His needs came first- regardless of where we were, what was going on, or who was around.  We did not restrict what we did with others, as long as he could tolerate it physically.  We in fact did as much as possible with him for as long as we could- just not putting his health at risk. 

Different is okay, in fact in our experience, without different, without Epilepsy we would not have met some very beautiful people that helped us through our journey.  Caleb's journey was full of difficulties, but he taught us so much from his short life.  Learning to live, to find joy in simple things, to smile and cherish it, to be grateful for all we are so bountifully blessed with, to find hope in the darkness and to believe that different really is beautiful- these are just some of the many lessons we have been so blessed to make a part of our every day living.

Epilepsy should not claim you, it should not define you or your loved one-- no disability should.  Hold up the hands of the child or family member with disabilities, treat them with love and respect, insist that others around them treat them with love and respect.  Teach others about Epilepsy, find ways to share information.  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