Hope For Amanda

Living on Faith, Hope & Love

What is a seizure?

                                                                                                                                                                                                                                                                                            

Keep Fighting for Team Amanda!

A seizure is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time.  Some seizures are hardly noticed – perhaps a feeling of “pins and needles”  in one thumb for a few seconds.  During other seizures, the person may become unconscious, fall to the floor, and jerk violently for several minutes.

For more information on Epilepsy and specific seizure types, view the following link:  ♥Epilepsy♥

 

 

 

 

 

 

Amanda's last EEG was in November (2006) and was very informative.  We thought Amanda's head drops and arm twitches were myoclonic seizures. We discovered that they were actually a combination of myoclonic/atonic and myoclonic/absence seizures.....which makes our little angel and her seizure's that much more complicated. 

Amanda has had issue's sleeping since July 25 (believe me, we know the date).  She is up for a total of 2 to 5 hours every night, the average being more like 4 hours.  We requested the EEG in November to see if Amanda is waking up because of seizure activity.  We learned that she does have seizure activity throughout the night but that is not what is waking her up....she's having night time arousals.   We also discovered that when she was sleeping, it was only a light sleep and she never went into a deep (REM) sleep.  Our little angel is very SLEEP DEPRIVED!!

 

Amanda's Seizures

Amanda has many different types of seizures, thankfully some less than others.  On a daily basis, Amanda experiences more than 1,000 myoclonic and head drop seizures.  She has multiple clusters per day, where she has a seizure every 3-5 seconds, usually lasting 30 minutes.  She tends to have clusters when tired, stressed, overheated, and hungry.  We are amazed with Amanda's perservance to work through these and continue with her day.  The descriptions for the following seizure types are based on Amanda's experiences.  Please note that other children may behave differently during a seizure. 


A Myoclonic seizure is a very brief, jerking or twitching of a muscle or group of muscles.  Amanda’s most common myoclonics include both of her arms jerking upwards. 

A Head Drop seizure is a brief head drop, which may drop Amanda to the ground.  When they are strong, it looks as if someone has pushed her on the back and she falls to the ground. Amanda wears a helmet to protect her during these seizures because she can and does  hit her head on the table, wall or floor.

An Absence seizure is most commonly known as a staring spell.  Amanda may just look straight ahead for a couple of seconds and isn’t able to respond during these brief seizures. 

Clonic is the seizure most are familiar with and is commonly known as ‘Grand Mal’.  This is a convulsive seizure that includes all limbs twitching.  Amanda usually stops breathing during one of these episodes.  Amanda has only had ~ 15 tonic-clonic seizures and they usually occur before or during a fever spike.  The last tonic-clonic seizure was in August, 2007.  

Focal (aka partial or unilateral) is a one sided seizure that usually starts with 1 arm jerking, progresses to include the same side leg and continues to include the same side of the face.  Thankfully, Amanda has only had 4 of these but they have always been status.  The last focal seizure was in October 2005 and lasted 60 minutes. 

 

A Complex Partial seizure does not involve convulsions, but consciousness is impaired. For Amanda, she looks totally dazed and she is very slow to respond.  She can sit up, move around slowly and responds to you in a VERY delayed time.  Amanda has ~2 per month and they always occur during the middle of the night.

 

Non convulsive, Non responsive "Statue":  Amanda is not conscious, one arm is lifted above her head, face is turned to one side and she doesn’t breathe.   There are not any twitches or convulsions with this seizure.  We're not sure what the official name of this seizure type but it reminds us of a statue...she doesn't move or breathe.  Amanda had her first one a couple of weeks after we stopped using the drug from France.  She has averaged 1 per month since Feb, 2007.

 

Focal:  Her first seizure occurred at 6 months.

Myoclonic: Her first seizure occurred at 10 months.

Absence:  Her first seizure occurred at 10 months.

Tonic Clonic: Her first seizure occurred at 13 months.

Head Drops: Her first seizure occurred at 15 months.

Complex Partial: Her first seizure occurred at 27 months.

Non convulsive, Non responsive:  Her first seizure occurred at 42 months.

 

 

 

 

 We love the Danmar Halo Helmet..it protects her melon and helps keep her cool with the opening on top!

 

(Of course she has a PINK helmet!!! : ) )

Medications

Current:

  1. Depakote 
  2. Clobazam (not FDA approved, Canadian drug)
  3. Topamax
  4. Diastat (used once a week)

Modified Atkins Diet (35 Carbs a Day)

Past:

  1. Phenobarbital
  2. Topamax (weaned 1st time to start keto diet in Nov 2004)
  3. Keppra  (weaned October 2006 - YEAH!!!!!)
  4. Stiripentol (not FDA approved, French drug) ; weaned Jan 2007
  5. Zarontin (weaned fall 07)
  6. Ketogenic Diet (weaned December 2007)
  7. Zantac

Ketogenic Diet

Amanda started the diet at Children's Memorial Hospital in Chicago when she was 17 months old (October 2004).   We are BIG fans of the diet and would love to share our experience with anyone else that may be interested in trying it.    We weaned her off the diet after being on it for more than 3 years (December 2007).  During the majority of those years, we believe it helped control the major convulsive seizures.

 


The Ketogenic Diet is a treatment for epilepsy that relies on inducing a state of ketosis. The diet prescribes food high in fat, and heavily restricts carbohydrate intake. As fats become the body's primary source of metabolic energy, ketones accumulate in the brain, which can alleviate epileptic symptoms.

Amanda's currently on the classic Ketogenic Diet at a 4:1 ratio (4 parts fat to every 1 part carb/protein).  A typical meal for Amanda includes a beef hot dog, very small amount of fruit, flavored heavy whipping cream and mayonnaise.  Since starting the diet, Amanda has only had tonic-clonic (grand mal) and focal seizures when she is ill. 

The only negative side effect that we've seen with the diet is that Amanda has lost her desire to drink water.  With a lot of trial and error, we have resolved to spoon feeding Amanda 50 oz of water a day (5 oz every hour) to keep her at an appropriate level of hydration.  It may sound extreme but as a parent, you know that we do whatever we need to for the well-being of our children. 

 

If you would like to read more about the Ketogenic Diet, click on the following link:  Ketogenic Diet

Horse Therapy

Amanda started riding a horse as part of her physical therapy session when she was 18 months old.  If you're interested in learning about Equine Assisted (Hippotherapy) therapy, select the link:  Horse Therapy

Last Updated:  Aug 2008