Seizures Stink!

Elise had a Grand Mal seizure last week. She has at least one of these a year, sometimes a few. Her daily seizures can be just as scary, but don’t last as long and don’t involve as much convulsing. When your kid has epilepsy, seizures just become a kind of regular part of the day. Elise’s first seizure was in a Chile’s restaurant in Florida. We were there to attend training sessions for ABR (an alternative type therapy for kids with Cerebral Palsy). I immediately knew that the grimacing and tightening of her body that I was seeing wasn’t normal. One moment I was sitting there eating chips and hot sauce, and the next moment I was watching my 5-month-old baby girl twitching and repeating odd movements over and over again. I knew at that very moment that my daughter had epilepsy. We had hoped to dodge the seizure bullet. Not only did she not dodge it, it hit her square on! That day marked the beginning of a new frightening aspect of Elise’s brain injury- additional damage to her brain and possible death by seizure. Fun stuff!

A few days ago, I had just stepped out of the shower when I heard an unusual sound coming from the master bedroom (Elise has the master b/c of the large amounts of therapy equipment and aids that are needed in her room). Although I had never heard this particular sound before, I instinctively knew that Elise was having a seizure. A big one. I opened the bathroom door to see her lying in her bed, definitely not breathing. She was making a deep guttural noise. Her lips were blue, and her upper body was racked with convulsions. It doesn’t matter how many times you see this happen to your child, each episode feels like the end. The end of her life. The end of having a daughter. The end of Elise. The end.

During earlier episodes of these Grand Mal seizures, we have called 911, and then, on the way to the hospital, put in calls to grandparents and close friends alerting them to the possibility that Elise is dying. After going through this process several times in a row, and each time taking a sigh of relief when she stops seizing and begins to breathe normally again, we became pretty desensitized to the situation. Now, we have emergency medication at home (what the EMTs would give her). We can give her rescue breaths while waiting for her seizure to stop. We have become very good at determining when to wait and when to call for an ambulance.

Some of you may be wondering, “Why wouldn’t you ALWAYS call an ambulance if your child isn’t breathing?” Well, we used to. Elise’s lips can turn blue during smaller seizures that only last a few minutes. This was the typical scenario when faced with these sorts of seizures:

• Look at Elise and realize she isn’t breathing and is having some sort of seizure.
• Panic.
• Call in spouse and argue over what should be done.
• Wait for 20 seconds or so to see if it will stop on its own.
• Call 911.
• Call GiGi.
• Try to make Elise breathe. Rub her chest, shake her shoulders, sit her up, lay her down.
• Listen as sirens fill the air and call out all of the neighbors to watch the ensuing scene of panic and chaos.
• Watch as 2-3 police cars, 1 firetruck, and 1 ambulance pull up to the house.
• Greet the EMTs and point them to the living room where we have brought Elise.
• Watch as Elise takes a big breath just as the EMTs enter the room.
• Pack up into the ambulance even though she seems back to normal.
• Spend 1-2 nights in the hospital receiving tests that confirm what we already know…

Elise has epilepsy!

After doing this several times and eventually figuring out better ways to communicate with each other, keep Elise comfortable during the seizure, and give her enough time to take a breath on her own before calling 911, we finally got in a groove that has worked for several years. Less hospitalizations and less panic.

This last one, though, crossed the line a little and kind of ruined our “groove”. It lasted quite a bit longer than usual. Chris quickly administered the emergency medication only for us to see Elise have an allergic reaction to it. Of all responses, this one was “neurological”. Nice. The original seizure ended, only to be followed up by a new, somewhat smaller one. She began having severe muscle spasms in her legs and cried on and off in discomfort for about 30 minutes. After calling the doctor and describing what happened, we have decided that next time she has one of these larger episodes, we will pick up the phone and call the ambulance. Better safe than sorry.

Episodes like this last one keep us on our toes! We can’t get too complaisant, or too comfortable in our life with Elise. She is full of surprises. You know what, though? Take any one of these moments that are filled with anxiety, fear, and uncertainty and they don’t even begin to compare to the millions of moments that we have with Elise that are filled with joy, laughter, and deep, deep love.

Do seizures stink? Sure! But there are lots of things that don’t:

Thank you Jesus for… Elise’s ability to laugh. Hard!

Thank you Jesus for… helpful doctors who treat Elise the best they know how.

Thank you Jesus for… Elise’s ability to enjoy pureed food by mouth.

Thank you Jesus for… seizure medication.

Thank you Jesus for… my husband.

Thank you Jesus for… answered prayer.

Thank you Jesus for… therapists who love Elise and help her daily.

Thank you Jesus for… teachers and caretakers who treat Elise as their own.

Thank you Jesus for… extended family who are forever helpful.

Thank you Jesus for… Elise.

This is a picture of Elise during her 1st EEG (along with the one at the top of the post). She was able to get up on her elbows and hold her head up at this point. Not for long. After the onset of seizures, Elise’s physical abilities took a nosedive.

She usually had an EEG repeated after any big episode. Eventually, they stopped doing them, b/c we knew the problem, and she hardly ever had a big one during the EEG itself!

I've been told that her brain waves - all of the time, not just with seizures - are all screwed up (not a medical term!) compared to a typical child with a normally functioning brain. Kind of weird to think about.

** UPDATE ON 8/2017 **

I want to update this post with a couple of things that we have tried with Elise to deal with her seizures.  

Over the years, Elise's seizures have worsened to a point of desperation.  The last school year was crazy with 911 calls happening and the teachers calling me to come get Elise because of uncontrolled seizures during the day.  

At home, we were having to administer her emergency drug, Diastat, 1-2 times each week, which was a drastic increase from years past.  Elise was having large Grand-Mal seizures at home, at school, in restaurants, and wherever we happen to be at any point of the day or night.  Her life was on hold. 

So, we decided to try the Ketogenic Diet...

The following info on the Ketogenic Diet is taken from the website:

 http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet

What is the ketogenic diet?

The ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy. It is prescribed by a physician and carefully monitored by a dietitian. It is stricter than the modified Atkins diet, requiring careful measurements of calories, fluids, and proteins.

• The name ketogenic means that it produces ketones in the body (keto = ketone, genic = producing). Ketones are formed when the body uses fat for its source of energy.
• Usually the body uses carbohydrates (such as sugar, bread, pasta) for its fuel, but because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead.
• Ketones are not dangerous. They can be detected in the urine, blood, and breath. Ketones are one of the more likely mechanisms of action of the diet; with higher ketone levels often leading to improved seizure control. However, there are many other theories for why the diet will work.

Who will it help?

• Doctors usually recommend the ketogenic diet for children whose seizures have not responded to several different seizure medicines. It is particularly recommended for children with the Lennox-Gastaut syndrome.
• The diet is usually not recommended for adults, mostly because the restricted food choices make it hard to follow. Yet, studies done on the use of the diet in adults show that it seems to work just as well.
• The ketogenic diet has been shown in small studies (case reports and case series) to be particularly helpful for some epilepsy conditions. These include infantile spasms, Rett syndrome, tuberous sclerosis complex, Dravet syndrome, Doose syndrome, and GLUT-1 deficiency. Using a formula-only ketogenic diet for infants and gastrostomy-tube fed children may lead to better compliance and possibly even improved efficacy.
• The diet works well for children with focal seizures, but may be less likely to lead to an immediate seizure-free result.
• In general, the diet can always be considered as long as there are no clear metabolic or mitochondrial reasons not to use it.

So, Elise was checked in to the hospital and monitored by her neurologist and a dietitian.  We stayed for 3 days, slowly putting Elise into ketosis by restricting certain foods and only feeding her specific foods.  

It was a MAJOR change in taste for Elise.  Since she is deaf, blind, and has a dulled sense of touch, we know how much she loves and enjoys using her senses of taste and smell!  She did very well in the hospital and was released on a very strict diet.  I had to measure her foods very specifically using a gram scale.  It was much harder to prepare her foods, and a challenge to travel with her meals.  But, we were willing to try anything and go to any length to get her some relief.  

Elise decided several weeks in that she was not going to eat the food anymore by mouth.  So, we switched to feeding her 100% by g-tube and used a formula called Keto-Cal.  

Unfortunately, the diet did not help Elise's seizures as we had hoped.  After several months, we took her off and resumed her regular diet.  I'm glad we tried, though... You win some, you lose some!

I bought a book to learn all about the diet before starting.  This is a view of the charts we had to keep for her foods and water intake.  Everything had to be measured on the gram scale.  

It was always a very small amount of food.  We worked hard to figure out recipes that she would enjoy.

We had to check her levels each day to make sure she was still in ketosis. She slept quite a bit during this period, which the doctor said was normal.

  

Another intervention that we have tried for Elise that has been WAY MORE SUCESSFUL is the Vagus Nerve Stimulator...

Elise received a VNS in July of 2017.  We decided to try this for Elise after feeling like nothing was working (seizure medications, ketogenic diet).  

The following info on the VNS is from the wesite: http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns

• The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.
• The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.

http://epilepsyu.com/blog/vns-technology-could-help-improve-lives-of-people-recovering-from-stroke/ 

http://www.neurodoc.in/vagal_nerve_stimulation

Loving on her right before surgery :)  We were thankful that Elise didn't have to stay in the hospital overnight.  She received the implant, stayed for observation, and was allowed to go home without any complicaitons.  

She has 2 scars. One on the left side of her neck, and another on her chest.  Both are about the same size.  I don't have 

(They aren't purple now...that was marker for the surgery)  

This picture shows the generator implanted under her skin in her chest.  You can see that it is there, but it doesn't bother her at all.  The other scar is right below the generator.  

The VNS comes with a magnet that we can swipe across the generator when Elise is having a seizure.  It is supposed to stop the seizure, or at least limit its length.  Elise hasn't had her implant long enough and has not had it turned up enough for the magnet to be useful yet.  We keep it on a hook by her bed and we have another one in her bag that goes everywhere with her.  

So far, the VNS has improved Elise's quality of life by leaps and bounds!  Far beyond any other intervention ever tried.  Her seizures have decreased more than ever in her life.  We have recently begun tapering her off of one of her seizure medications, and hope to be able to do the same with her other medications, as well.  She still has seizures, and I don't know if this will continue to be the best answer for Elise.  Sometimes, when we see great results with a new therapy or medication, things tend to backslide again.  But, I'm definitely praying for this to be a long lasting solution.  Either way, we are enjoying its effects on her every day!