Another National Month?

Did you know that November is National Epilepsy Month?  I never thought I'd be blogging about Epilepsy, but since April of this year it became very real to us.  Emma is doing so well since being diagnosed with Epilepsy in May.  Epilepsy is a blanket term for people with a "seizure disorder", in Emma's case she has Simple Partial Seizures-affecting her right side, chest up.   She continues to take medication twice a day and will continue to do so until May of 2012 (unless she has another seizure between now and then, she must be seizure free for TWO years before they will allow her to be taken off the medication).  She has minimal side effects, usually only when we have to adjust her medication and they only last a few days!  

The most difficult part for me as a Mom is having to forewarn and make others aware of her "medical condition", the risk of a seizure and what to do if she has one.  Also letting her go and have fun despite her "medical condition".  Even after an MRI, CT scan, EEG and other neurological tests Emma's neurologist was unable to determine the cause or trigger for Emma's seizures (in 70% of cases there is no known cause), so although Emma has been seizure free since May of 2010, they could happen at any time.  With that she has medication she must keep with her at all times in addition to her daily medication.  This medicine is for a prolonged seizure (lasting 5 minutes) or cluster seizures (back to back seizures), it is a very strong and very expensive medication, she has one to keep at school and one I keep with me when she's with me at home or out and about.  This medication is basically liquid vallium, so in addition to having to use it she would have to be seen ASAP at the hospital.  

Since being diagnosed Emma's neurologist strongly suggested a medical ID bracelet, which we let Emma pick out, that she never takes off.  She has recently gotten to the point where she doesn't want to wear the bracelet or people to know she has Epilepsy.  Usually after reminding her why she takes the medicine, to prevent seizures, she knows she must take her medicine, wear the bracelet and make others aware so that they can help!  

We are extremely thankful that Emma doesn't have more frequent seizures, since Emma's diagnosis, we have met two children in our church with Epilepsy.  One is younger boy (Anna's age) who has seizures frequently and has use of a "canine" helper, the other is a girl a year or two older than Emma who had Epilepsy and has grown out of it (which is what we are hoping for Emma).  We are also very thankful for the medical insurance we have, her daily medication costs coupled with her "emergency" medication, neurologist visits, EMS, ER visit, initial tests and doctors she saw = a lot of money, but God provided!!! 

Epilepsy is serious and affects so many people around the world, I ask that you take the time to be educated, you never know when you might be around someone having a seizure and you could be the one to help!  Take this quiz to Get Seizure Smart!

Can you help?

There are so many worth while causes out there, but this one hits home with us...check THIS out, a friend from highschool whose daughter also has epilepsy, together with friends and family have organized a 5k run November 13, 2010 to help benefit epilepsy patients in North Carolina through the national epilepsy foundation.  There are few of these organized benefits, so if you could help in any way please do!  Check out more information on the national epilepsy foundation HERE.  The Epilepsy Foundation is the national charitable organization committed to a better world for people living with epilepsy. Through research, education, advocacy, and services, they aim to prevent, control and cure epilepsy, and to ensure a positive quality of life for everyone living with epilepsy.  You can "like" this on facebook and help spread the word!

Emma :)

Today Emma gets to meet her teacher for SECOND grade!  Here in Georgia they have a "sneak-a-peek" at each school before the school year starts.  They post what class and teacher each student has at the front of the school, you bring your school supplies and meet your teacher then, TWO days before school starts!  I remember when I was younger getting my school teacher assignment way before school started!  Emma is excited to start back to school, but nervous because of all the "new" stuff, friends, teacher and routine!  She is really nervous about the actual school part too.  We noticed a few months ago our "Miss reads a lot" wasn't reading books and writing stories, just drawing pictures in her journal.  We finally figured out she was scared to read because that's when she had her seizures!  We explained to her that she's now on medicine to prevent seizures and she finally started reading books again (consistently) a few weeks ago!  She also had a neurologist appointment last Monday and they adjusted her medicine, and she is experiencing more side effects!  This time the dosage adjustment will take about 3 weeks, they gradually increase her dosage, in her case a half a pill, each week until they get her to the dosage they want her at, based on weight!  

Please pray that Emma will have an easy transition to second grade and the new dosage of her medicine, that the side effects (blurred/double vision and headaches) would ease up before school starts and that she can manage them if they continue!  Also pray for her new teacher and class, she had a bully (yes in FIRST grade) in her class last year that was mean to almost everyone and it was a GIRL!!!  I'll be updating in a few days with pictures of her first day of second grade :)

Just a quick note...

we heard from the neurologist last week and Emma's MRI came back normal, she said we may never know what caused the seizures!  Just for the count the EEG, CT Scan and MRI all came back normal, but because she's had 2 seizures she is classified as epileptic and will be until she is seizure free for 2 years.  Emma is continuing to take the medication twice a day to prevent any further seizures and is almost up to the full dosage (they've gradually increased the dosage each week) with minimal side effects, occasional headaches.  We are very thankful that all the tests came back normal and she is adjusting to taking the medication :) 

MRI

Neither Jody or I have ever had to have an MRI, so when Emma had to have one done recently, we had no idea what to tell her.  We looked up the hospital where she was having the MRI and found pictures and were able to explain to her about the whole process.  Click here for more information about the MRI that Emma had done.   As I said before we decided not to sedate her for the test, so we wanted to make sure she knew what was going on and that there was nothing to be afraid of!  In this particular MRI, she was able to watch a dvd for the duration of the test, about 30 minutes.

Here she is picking out her dvd...

still choosing...

final choice, High School Musical 2 (which is what Jody and I had thought she'd pick anyway)!

We had to remove all jewelry/metal objects, watches, phones, cameras, etc. before entering the room with the MRI because the machine is always on!  They even waved us with metal detectors before we entered the room just as a last minute precaution, so I wasn't able to take pictures before or during the MRI.

But here she is after she was all done!

They even gave her a special prize for holding so still!!!  We were very proud of our Emma and all the tests she's had to endure the past few weeks, great job Emma!!!

Saturday is the day...

for Emma's MRI. Her neurologist thought she'd do fine without being sedated for the test, but ultimately left it up to Jody and I. We agreed with the neurologist since she also mentioned Emma being able to watch tv during the test to keep her still. Please join us in praying for her tomorrow, Pray that...

1. She'll lay still for the entire 30 minute MRI, if not it has to be rescheduled during the week.

2. The neurologists will find the source of the misfire (causing the seizures) or nothing at all!

3. If we can find the cause of the seizures it will be something we can continue to control by medication and that she will grow out of epilepsy.

We trust in God and His plan for our lives, whatever comes our way we know we can handle it with His help!  We'll keep you updated!

Update on the Update :)

Unfortunately I wasn't able to email or send messages to everyone about the results of Emma's neurologist appointment today.  I only had a few minutes so I updated the blog and then sent a link from facebook.  


Before today, Jody and I had a limited knowledge of epilepsy. Epilepsy is really a blanket or broad term.  Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.  Seizures happen when the electrical system of the brain malfunctions. Instead of discharging electrical energy in a controlled manner, the brain cells keep firing. The result may be a surge of energy through the brain, causing contractions of the muscles.  Seizures cannot be stopped once they start and must run their course.   They can last from a few seconds to a few minutes.  Emma has simple partial seizures, where she is awake and aware but cannot control the parts of her body affected, they jerk uncontrollably.  

Emma's EEG was normal but she still has seizures, not that uncommon for those with epilepsy.  She also had a CAT scan which was normal.  We are waiting to hear back from the hospital for when her MRI will be scheduled.  Her neurologist felt an MRI would give us a better, clearer picture of her brain to see if we could find a cause to the "mis-fires".  Sometimes during brain development in the womb cells ended up in the wrong part of the brain, the MRI will show if this is the case for Emma.  For now she is classified as being epileptic and is on medication twice a day to prevent any further seizures and goes back to her neurologist in two months to see how she's doing on the medication.  Once she has been seizure free for two years they will gradually take her off the medication.  We are thankful for a diagnosis, even though we don't know the cause, but that it can be controlled with medication.  For more information on Epilepsy, click here.

Neurologist Appointment

Just another quick update...we had Emma's doctor apt this morning with the neurologist.  Her EEG came back normal, but they did classify her as having epilepsy.  She is on medication twice a day to prevent seizures.  Once she is seizure free for two years they will gradually take her off her medication, but until then we just have to wait and see.  The neurologist/hospital here is scheduling an MRI (we don't know the date yet) to see if we can find the source of the "mis-fire" that caused her seizures.  The news today wasn't the best we had hoped for but definitely better than what could have been.  We are so very thankful for God's lovingkindness towards us and for His provision and timing.

More Emma...

Here's Emma at the ER, right before they took her back for the CAT scan last Thursday. The results ended up being normal, so we had to schedule an EEG with a neurologist.  We got in for the EEG Monday afternoon, but unfortunately her appointment with the neurologist for the results isn't until this coming Friday morning.  For the EEG they stuck 24 electrodes to her head with a type of paste then hooked up all the wires to a machine to measure her brain waves.  She was asked to open her eyes, close them, breathe deeply for a set amount of time, breath through her mouth only, fall asleep, and at the end they asked her to close her eyes and turned on a strobe-ish light right above her head at different intervals.  The actual test took about 30 minutes, plus time to hook up everything and un-hook everything, so a total of about an hour.  I took this picture right after the light test, I guess that's why she was closing here eyes, still too bright?!

Prayer Requests:
1. She won't have any more seizures! Especially at school, she seems really embarrassed and nervous about the chance that she may have another at school.  Today was her first day back since the second seizure.
2. Doctors wisdom so we can hopefully figure out what caused these seizures in the first place.
3. Peace of mind for myself (and Jody), yesterday was a very stressful day for me, I don't handle stress all that well, usually get grumpy and snappy.

I was reminded yesterday as we were sitting in the waiting room for Emma's EEG how blessed and thankful we should be.  There was another little girl that was waiting for her appointment that was 7 and had a neurological disorder that prevented her from walking and talking and was in a wheel chair of sorts.  Emma was shocked to find out that she was the same age as this little girl.  We have been very blessed to have 4 children, that they are happy and healthy, may I never forget that or take advantage of what God has given us!  

Update on Emma

Just a quick update on Emma.  She has done well since Thursday, acting normal and no more seizures.  She has an appointment this afternoon at 3pm for an EEG.  Not sure yet if we will be able to meet with the neurologist today for the results or if we will have to wait.  We had to keep her awake last night, due to the test, she was only allowed 5 hours of sleep...very hard for a girl who gets close to 12 hours of sleep each night!  Also she hasn't had any candy, caffeine or any type of sugar since 3pm yesterday and can't until after her test today. She's a bit grumpy this morning, but that's to be expected! Obviously Jody and I are anxious about today, but more so of the unknown aspect.  Hopefully we'll know a cause to the seizures after the tests performed today and go from there.  

We know that she is in God's hands and He is the ultimate healer!!!  

Please pray for the doctor's wisdom, our anxiousness and for our other kiddos that will be at a friends house so that Jody and I are both able to go to the appointment.  Thank you already for all your prayers, comments, messages and encouraging words thus far, we'll keep everyone posted.

Emma

Just a quick note about what happened yesterday with Emma (our oldest, 7 years old). She had a seizure around 6pm which lasted about 3 minutes, we called paramedics (we thought this had never happened to her before). She was awake but could not speak, her right side was twitching/jerking affecting from her chest upward (chest, arm, neck, cheek, and eye). After about 30 minutes her arm and chest were still numb but regaining feeling. Paramedics checked her out and she was fine, so we refused ambulance transport. They sent us to a local childrens urgent care where they in turn sent us to a local childrens hospital. They did a CT scan at the hospital and everything was normal. Around 10pm they sent us home with diastat in case she has another seizure lasting longer this time, stronger or affecting additional parts of her body. We are to call the neurologist this morning to schedule an EEG so we can hopefully figure out the cause of the seizures. We have also discovered she had her first seizure at school last week that (she just told us about). Please continue to pray for her! Thank you for all your prayers, messages and texts of encouragement. We'll keep you updated.