Friday, December 2, 2011

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)

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!!


Saturday, November 19, 2011

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 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.


Saturday, October 22, 2011

Special Show On Seizure Dogs

Please check out this link:
 and find your local listings for a story today about Seizure Dogs from Canine Assistants.  Locally it will be on WSIL at 9 am in the Paducah area.  Please see a previous post about seizure dogs here on my blog Archive from September. 

Wednesday, October 12, 2011


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

Thursday, September 15, 2011

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

Other Links (some of them providing for free):

For more information on benefits of Seizure Dogs, follow this link:
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.


Monday, August 22, 2011

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.



Wednesday, August 3, 2011

Epilepsy Awareness

Talking about Epilepsy is easy for me to do.  As a parent of a child who suffered with intractable epilepsy, I wanted anyone who came into contact with our Caleb to understand his seizures.  I always talked to his classmates about seizures and autism.  And most importantly, I trained his teachers, aides, therapists, anyone who helped him through his day, about seizures. 

It is so important to share that you have Epilepsy with others.  If you are an individual with Epilepsy, creating awareness by sharing about your Epilepsy can save your life.  If you are a parent with a child who has Epilepsy, sharing their condition with teachers, administrators, coaches, is vital. 

There are so many misconceptions about Epilepsy, some people may react incorrectly.  You may need DiaStat, sublingual medication or extra medication in an emergency.  Do the people that you have daily contact with know what to do?  Many people with Epilepsy may have a seizure that stops on its' own.  Going to the hospital is most of the time not necessary.  Would those around you "overreact"?  Would they respond correctly? 

Being an advocate for yourself and teaching those around you about appropriate response to your seizures is necessary.  Don't be afraid to talk about Epilepsy.  Your local Epilepsy Foundation can advocate for you and can also educate employers, teachers, therapists, classmates and first responders on proper seizure response.  These programs are free. 

Caleb never finished his Kindergarten year of school.  He became too ill, and contracted illness that exasperated his seizures.  His last day at school, he went into Status Epilepticus (prolonged seizures) and his teacher called me.  She knew that he needed DiaStat and I told her to administer it as I drove to the school.  I had trained her at the beginning of the school year, and she knew just what to do.  Her being able to do that allowed his seizure to slow.  It was a blessing to have trained staff who cared so much about our sweet Caleb. 

Knowledge corrects improper stigmas about Epilepsy.  Knowledge allows proper response.  Knowledge creates compassion.  Teach others about Epilepsy, or ask for a free presentation from your local Epilepsy Foundation for your support team. 

To truly be "aware" of Epilepsy, educating others is important.  If you don't know proper response for Seizures- see the Seizure First Aid blog entry on the right. 

If you or a loved one has Epilepsy - make those around you Aware.

Monday, July 11, 2011


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. 

Monday, July 4, 2011


The Fourth of July used to be an anxious day in our home.  Caleb's first seizure was July 4, 2006, and every July after that he typically had a terrible increase of seizures that day.  But today, he is Free, and there is no anxiety, no run to the ER, no emergency medication, no pain, no seizures. 
Today, I am going to be grateful for that.  However, I will miss him not being here with us.  When he could still speak, he was 4 years old, and we went with our family to Disney World that Christmas.  His favorite thing was the Spectromagic Parade, and afterward they did the amazing firework display---Caleb would say "Look, Christmas", so from then on, fireworks were "Christmas" for him.  I would show him his card with fireworks on it, and every 4th I would tell him we would go to Aunt Ellen's and Uncle Jason's to watch "Christmas", sometimes, we would see a smile.  I hope he gets to see "Christmas" up in Heaven today. 
This 4th of July, I am thankful for my freedom, for my dear family and friends, for freedom to worship in this great country, for those who protect and defend us daily...but most of all, I am thankful to God for freeing Caleb from seizures and taking him home with Him.  He is safe, he is happy, he is FREE. 
Bless you all,

Monday, June 27, 2011

Prayers for the Book

It's been a very busy week.  I am finishing my work with Epilepsy Foundation Middle and West Tennessee, picking up steam in bringing the satellite office of the Epilepsy Foundation of Kentuckiana to Western Kentucky, and also working on the Walk Around Kentucky for Epilepsy that will benefit the EF of Kentuckiana: which will be held in Murray KY on Saturday July 9th!! It is a busy time. 

Also, at the heart of my work, is Caleb's Story, and some exciting things have happened this week in regards to my book.  I have had an Acquisitions Director for a publishing company to begin doing a "quick overview" of my book and emailed me to say she had been "sucked right into the story".  She has no ties to epilepsy or autism or children with chronic illness, and she thought the story was touching and profound.  It just absolutely made my day!! I am praying that the editors that read my work are moved by Caleb's story and feel that it should be published, and I am asking for you all to pray for that as well!! Also, today, at a meeting about a potential grant for our endeavor in West Ky, a sweet lady who was there who heard me speaking about my book with my colleagues, and was so moved by what we were discussing, that she asked to read my book as soon as it came out! That just touched my heart and made me feel so thankful that just hearing a glimpse about Caleb makes people want to read and hear our journey! 

I miss my sweet boy every day.  But knowing that his journey, his story, our lives with him, resonates to people from every walk of life, it just makes me more driven to see that his story is published to reach everyone, because I think everyone could learn something from his life. 

I am meeting some wonderful people along this journey, and I am so grateful to those voices of support and love and encouragement.

If you are dealing with Epilepsy or Autism or other comorbidities, find hope, make a team, reach out.  Contact me here, or at, I will do all I can to help you.


Beth Baker

Thursday, June 16, 2011

First ASD and Epilepsy Seminar

The first (to my knowledge) Seminar specifically for families with children dealing with Autism Spectrum Disorders and Epilepsy will be held next Thursday, June 23rd at the Vanderbilt Kennedy Center Rm. 241.
Dr. Gregory Barnes will be presenting.  He is the Director of the Pediatric Epilepsy Monitoring Unit and Assistant Professor of Neurology and Pediatrics at Monroe Carell Jr. Children's Hospital at Vanderbilt.  Dr. Barnes was our Caleb's Neurologist, and helped us in providing the best possible care for him.  He is continually looking for ways to help these children in his research and in his clinic. 

Dr. Barnes is graciously giving me time to present about Resources that could be helpful to this special population of children and their families.  In gathering the information, I discovered two things.  One: There are very few resources out there that encompass both ASD and Epilepsy.  Two: It is important for me to share my experiences with other families, and if I can empower parents to feel more able to care for their children - then, it's a win/win. 

If you know someone who has a child with ASD who has Epilepsy, or suspected seizures, please share with them this information. You can register to attend by calling ASMT at 615-385-2077, or registering online at their website:  I am hopeful that many will be able to step away for a moment from the overwhelming day that I'm sure they've had, and learn more about how to help their children and find people that will help them.  It's all about building a team, and I am so glad to be able to share what I learned from our precious Caleb....Team Caleb is still strong!



Friday, June 3, 2011

Meeting Beautiful Faces

Yesterday and today, I had the priviledge of meeting some wonderful people at the Tennessee Disability MegaConference.  It was a rewarding experience.  I represented the Epilepsy Foundation Middle and West Tennessee to sign up individuals to recieve support group and educational information, educated them about laws that protect their rights as patients, and shared first aid information.  The most rewarding part of the conference was seeing children and adults with disabilities treated as individuals and without judgement and with respect and LOVE. 

It is amazing how a child with special needs brings an amazing awareness to those around them about how important and how unselfish LOVE is.  This special population of people among us teach us more than we could ever learn about living.  They live with hope in the face of adversity.  They smile instead of crying.  They hug you even when you are a stranger, and just fill your heart with warmth.  They accept others.  They LOVE. 

I was reminded today how much I wished for Caleb to be able to grow up into a young man.  But throughout the short time he was here with us, he LOVED.  He didn't have to tell me, it was the way he would reach to hold my hand.  That is something that I miss the most.  He loved everyone around him.  He was strong and accepting and gentle and kind and he LOVED everyone. 

Despite your personal situation, you were likely brought to this site to learn more about Epilepsy.  My experience with Caleb and his fight with Epilepsy was a daily battle.  He fought, we fought with him.  But along the way, regardless of how difficult it might have been, we looked for the smallest way that he would reach out and show LOVE to us, a brief grin, holding our hand, a gentle hug, or just him looking at us with his beautiful eyes. 

Children and adults with Epilepsy deserve your LOVE and support and acceptance and kindness.  Did you know :
  • 300,000 people have a first convulsion each year.
  • 200,000 new cases of epilepsy are diagnosed each year.
  • Incidence is highest under the age of 2 and over 65.
  • 45,000 children under the age of 15 develop epilepsy each year.
  • In 70 percent of new cases, no cause is apparent.
  • 326,000 school children through age 15 have epilepsy.
  • More than 300,000 persons over the age of 65 have epilepsy
  • 70 percent of people with epilepsy can be expected to enter remission, defined as 5 or more years seizure free on medication.
  • 10 percent of new patients fail to gain control of seizures despite optimal medical management.
Epilepsy is the most common neurological disorder.  Educate yourself, and find ways to help others dealing with Epilepsy, you will learn much from them.


Thursday, May 19, 2011

Finding Ways To Help Others

This week, it is your turn.  In an effort to service the area of Western Kentucky, I am finding many parents with children with special needs or epilepsy who are in need of services.  This week if you are a parent of a child with epilepsy, or if you or another family member have epilepsy, I'd like for you to post your experiences.  Let me know the following:

1.  Are you happy with your current health care provider?

2. Are you seizure free?

3.  Are you serviced well in your community, if yes, what services are the most valuable to you?

4.  What resources do you need?

5.  What additional supports would be helpful to you?

I know personally that navigating insurance, health care, medications, pharmacies, educational supports, therapies and resources is overwhelming.  Finding a way to pull together the services needed and share those with families in need is my goal. 

If you are not effected by Epilepsy, think about the opportunities that exist in helping a family that is dealing with this.  Offer to run errands, cook meals, go over and fold their laundry, send them cards that let them know you are available to help in any capacity.  Even one small effort on your part can be a huge blessing in the day of a deserving family.



Monday, May 9, 2011

First Aid For Seizures

Seeing a person have a seizure can be traumatic, and then again, some seizures look like typical behavior if the person having the seizure has another underlying developmental disorder.  I hope you never have to experience seeing someone seize.  However, being prepared makes all the difference.  Last week my article was "Do You Know What a Seizure Looks Like?"  Read through it and make yourself aware of what the different kinds of seizures look like.  My response to those who might ask "how do I know if it's really a seizure?" is to treat it as though it is, because if you suspect it is a seizure- it is likely that it is in fact- A SEIZURE. 
There are simple steps for Seizure First Aid for any kind of seizure:

  1. Make sure the person is in a safe area, if not, guide them gently to a safe place: away from objects, people, or danger.
  2. Do not hold them down.
  3. Do not place anything in their mouth.
  4. Reassure them and talk quietly.
  5. Time the seizure.
These additional steps apply to someone having a generalized seizure:
  1. Cushion their head.
  2. Lie them on their side.
  3. Look for medical ID
Reasons to call for an ambulance:

  1. A seizure that lasts longer than 5 minutes, or reoccuring seizures.
  2. No Epilepsy ID
  3. Slow to recover, confused or experiencing difficulty breathing
  4. Pregnancy or other medical condition
  5. Illness or Injury
There are many sites that give information, however there are posters from the Epilepsy Foundation that are very appropriate for the general population and are easy enough for children to even understand. 

There are some caregivers who are experienced to give emergency first aid medications to a patient who experiences prolonged seizures.  If you know someone who has Epilepsy and has breakthrough seizures, it is helpful for you to recieve training on administering DiaStat (rectal valium) if prescribed to the patient.

Our Caleb experienced a seizure at school one day, and before I could get to him, his teacher, whom I had trained in giving the DiaStat was able to administer it and it temporarily stopped his seizures.  There is a great deal of thanks I have to that teacher, who during a very difficult time for him, was able to help his seizure cease.  That alone is a blessing to a person experiencing a prolonged seizure.  Our Caleb continued to have breakthrough seizures that day, and was hospitalized.  However, many times, this procedure could stop a seizure all together to prevent a person from having to endure an ER visit. 

The overall goal if for persons with Epilepsy to have the best quality of life possible.  If you know first aid for seizures, you will be calm if ever faced with helping someone through a seizure.  You can be a blessing to another.

With Hope,

Monday, May 2, 2011

Do you Know What A Seizure Looks Like??

Have you ever witnessed a seizure? Some can be scary, others are totally unnoticeable.  There are almost 3 million people with epilepsy, and  10% of Americans will experience a seizure in their lifetime. Click here for :  Epilepsy Foundation Statistics

There are two groups of seizure types: Generalized (grand mal) which simply means effecting all of the brain; and Partial seizures which simply effects a small area of the brain. However, Complex Partial Seizures can lead to Generalized seizures.

Our Caleb had many types of seizures.  He experienced: Absence seizures, Complex Absence Seizures, Atypical Absence Seizures, Myoclonic, Tonic, Clonic, Tonic-Clonic, Partial Seizures, Complex Partial and Frontal Lobe Seizures.  There are also Atonic seizures. These all vary in appearance.  Knowing what these look like can enable you to spot someone having a seizure and allow you to help them. 


Absence Seizures- Individual blanks out and stares.  Usually does not remember the seizure, and returns to normal awareness after the seizure. Typically last less than 20 seconds.

Complex Absence Seizure- Change in muscle activity, could be rigid or relaxed.  May have rapid eye blinking. May make tasting movement of the mouth.  May rub fingers together "pinching". Can last over 20 seconds.

Atypical Absence Seizures- These are particularly hard to identify in that the person can be somewhat responsive, can manipulate objects, but are not "with you".  They stare off, may have eye blinking and may make tasting movements with their mouth.  These may not look like abnormal behavior, especially in children with developmental delay.

Myoclonic Seizures- These are brief jerks typically involving both sides of the body in a rapid muscle contraction and relaxation.  Typical areas of movement are in the arms, shoulders, neck and face.  However, there are syndromes in which myoclonic seizures will precipitate Tonic-Clonic seizures.  Caleb experienced this combination of seizures daily.

Tonic Seizures- These are a generalized seizure where there is complete flexion and stiffening of every muscle in the body.  The arms will raise above the torso, sometimes completly over the head.  Some times the contraction of the muscles push air out of the lungs with a distinct noise. If a child is awake when these occur they will fall. These usually last 20 seconds or less, however, they can last up to a minute.

Clonic Seizures- These are rhythmic movement sometimes on both sides of the body in which the muscles are contracting and relaxing that it appears in a jerking motion.  The length of these seizures vary.

Tonic-Clonic Seizures- These begin with the Tonic seizure, where the body stiffens, followed by the Clonic seizure with rapid jerking.  These seizures can last 1 to 3 minutes.

Atonic Seizures- These seizures are the opposite so to say of a tonic seizure.  Instead of flexion, there is loss of muscle tone and the person may have their head to fall over, eyelids droop and if standing, they may fall to the ground.  These are known as "drop attacks".  The end result looks similar to a tonic seizure, so it is important to observe what is happening before the fall to be able to distinguish what type of seizure is taking place.  These usually last around 15 to 20 seconds.


Simple Partial seizures- These vary from person to person. 

  • Motor Seizure, as a jerking or stiffening of a hand, finger, or foot.  They may become weak on one side, or laugh. 
  • Sensory Seizures, where tastes, smells, visual illusions and sounds may appear that are not present. They may have pain or feel as though they are spinning.
  • Autonomic Seizures which is a change in the nervous system that automatically controls body function.  Symptoms can include changes in  heart rate, breathing, sweating, discomfort in the chest, head or stomach.
  • Psychic Seizures:  These seizures change how people think, feel, or experience things. They may have problems with memory, or speech. They may suddenly feel emotions like fear, depression, or happiness without provocation.
Complex Partial Seizures-These seizures start either in the temporal lobe or frontal lobe of the brain.
  • Temporal Lobe seizures- Alertness and awareness are changed, as with absence seizures, they can pick at their clothes in a pinching motion or have an "aura" or sense that the seizure is about to occur.  Sometimes, they may scream or cry or have odd behavior.  They can have memory lapses because of the seizure. The seizure can last up to 2 minutes.
  • Frontal Lobe seizures- These seizures are difficult to diagnose, as many would attribute this to a psychiatric event: HOWEVER, THEY ARE NOT.  Sometimes these occur in sleep, with Caleb, we saw them while he was awake.  Symptoms of the seizure include:
    • Head and eye movement up and to one side.
    • Complete or partial unresponsiveness.
    • Explosive screams or laughter.
    • Abnormal body posturing, such as one arm extending while the other flexes.
    • Repetitive movements, such as rocking or bicycle pedaling.
    • If awake, may run frantically afterward.
Knowing what a seizure looks like is important.  Next the question is, when you see someone have a seizure, what do you do.  I will cover this question in my blog next week. 

People who have epilepsy need your support, encouragement and love.  Make sure that you enable them as much as possible to do everything they can do and help them to be successful.  One person can make a difference in the life of another, be that person.



Tuesday, April 26, 2011

A New Journey

After years of fighting for our child to stay with us, the moment came on January, 15, 2011 where we had to say goodbye to his tired little body, and allow his spirit to live a wonderful and happy and healthy life away from us, in Heaven.  Since that moment, my life as a warrior mother has changed.  My goal from this blog is to share our journey, my knowledge and my compassion for families dealing with Autism and Epilepsy. 

Caleb was diagnosed with Autism (PDD-NOS) in 2005. We did a combination of Floortime, Relationship Development Intervention, Applied Behavior Analysis, TEACCH and Picture Card Communciation Exchange interventions in a manner that allowed Caleb to make successful gains.  A year later, July 4, 2006, he experienced his first seizure. Caleb had been on every antiepileptic medication I can think of, all at the top titration levels, without ceasing of his seizure activity.  He also had a Vegas Nerve Stimulator placed in 2008.  We also tried the Ketogenic Diet both orally and with a G-tube.  Caleb developed Aplastic Anemia in 2010, and we suspect that an underlying Mitochondrial Dysfunctional Disorder was likely responsible for his many challenging conditions.

I am hopeful that in some way I can help others to navigate the continual battles that consume the lives of those caring for a chronically ill child.  I hope to post links and share information that is relevant to your family, beneficial to your child and that could allow your child to participate in clinical research.


Beth Baker