Monday, May 4, 2015

May The Fourth Be With You!

It just wouldn't be a blog for our Jedi without mentioning this awesomesauce day!

We started our day off with lots of jumping on the mommy bed, screaming, "MAY THE FOURTH BE WITH YOUUUU!!!!"

Then we followed that up with- getting dressed in ALL of our Star Wars apparel, a short school day, and we're now focused on our Star Wars marathoning. It's serious business in this house!



Jedi Renn is still seizure free! We are nearing 14 months, and we are thanking God every step of the way. On Wednesday, we will be travelling back to UCSF for a follow up and to discuss the probabilities of weaning him off his medication! This momma is freaked out by that a bit, but, we know that keeping him on a medication he doesn't need isn't exactly great for him. So please pray with us as we venture on this new journey. We'll keep you posted!

Happy Star Wars day!!

 Please tell us in the comments: what are YOU doing to celebrate? We hope you're grabbing hold of your inner Jedi, and having a blast with all the possibilities!

As always, May the Fourth Be With You!!

Tuesday, March 17, 2015

ONE. YEAR.

Excuse me... cough, cough... It's so, cough, dusty around here...

Welllllll, hello! Yes, it's been a long time. Trust me, I feel guilty about it. There's been A LOT going on!




In November, Renn decided he wanted to have a birthday party... for his BRAIN. We had one alright, and boy oh boy, was it SPECIAL! We had a grand event that included so many of YOU, it was unbelievable. The love, the hugs, the watching-our-boy-run-around-and-laugh-and-play... Just magical. We even had some special, incredible friends come and join us from a galaxy far, far away...
 


Our special thanks to The Twin Suns (http://www.thetwinsuns.com)  and the 501st Legion,
for coming out and making our Jedi's dreams come true!!


We also got the news in December that Rick's job transfer was granted, so we've been in the throws of trying to move. We're also still homeschooling, and that has turned out to be the BEST decision we could have made for our Jedi and his super smart and oh-so hilarious little brother, E. But, that means that this momma doesn't slow down. EVARRR.


Okay, so now that you're mildly caught up, I'd like to get to the very reason why I am posting. It's hard to do this without sobbing and blubbering all over my keyboard, but I need to give it a shot.

Friends, for those of you who have been going through this journey with us for THREE years (as of 2/26/15) now, I have the best news. Your prayers, your words of love and encouragement, your notes, gifts, pictures, shares, donations, hugs, and your pourings out of pure love, have led us here...






Can you believe it?

Are you sobbing? Blubbering?

Join the club.

I woke up this morning in a rush. The boys and I woke up late, and were running around in a frantic- ARRGGGGG kind of way, trying to get out the door to Community Day (our 2x a week meet-up with teachers and other home schooled students). I will admit, I was feeling too guilty- since I'd forgotten to make St. Patrick's day all special for the kids (I was lucky to have some green shirts clean for the kids!)- to pay attention to much of anything . But Renn, being the amazing Jedi he is, paused, grabbed my hand, and made me look at him. He raised his eyebrows and said, "You know what else today is, right, Mommy?" Instantly, I started to weep.

My boy... Seizure FREE?

I got to make a giant announcement in front of all the other 125 students and their parents, this morning at Community Day. Even though not a single one of them had journeyed with us through his tests, medications, surgeries, they erupted in cheers and celebrated with him. I watched the parents enter in the words "Purple Day" on their phones' calendars when I mentioned March 26th. I saw the support of a boy whom they barely knew, but they loved earnestly.

To sit here and thank each of you who has known and loved our family through all of this... heavens... I'd be here all day. But know that every time we look at our Jedi's face, we see your hearts. When we hug him, we feel your hugs. We are always and forever grateful for your kindness and support.

We are also indebted to the doctors, nurses, and staff at UCSF Benioff Children's Hospital. They became the instant family we needed in those dark days. We are thankful for their guidance, talents, grace, and love.

Now, today our Jedi is ONE YEAR seizure free. Does that mean he is cured? No. No it does not. Could the seizures return? Yes, that monster could awaken at anytime. However, we believe in a mighty God who has far greater plans for Renn than we could ever, EVER envision. So we will hold on to the promises we are given, and those will keep our hearts thankful and jubilant. It might not be a seizure free life that Renn leads, but he got one year, and we'll take it. We'll remember each and every moment that God gave us. Each smile, each soccer game, each laugh, and each milestone that our Jedi reached. We'll remember the encouragement that he gave others, and the joy on his face when he saw his presents on Christmas morning, and the prayers... we'll remember the prayers that his baby brother prayed every. single. night; The ones that begged God to "let Renn's scar heal, and to keep the seizures away..." What a true blessing, indeed.

By the way, this isn't just a celebratory week because of this monumental day, but also, Renn turns 8 on Thursday... EIGHT.

And to think, there was a moment when I didn't know if I'd see him turn seven.

Praise you, Father.

One year down, friends. Let's keep 'em coming!!!





"For the mountains may depart
and the hills be removed,
but my steadfast love shall not depart from you,
and my covenant of peace shall not be removed,"
says the LORD, who has compassion on you.
Isaiah 54:10



Saturday, November 1, 2014

Epilepsy Awareness Month 2014: The New Normal

It's hard to imagine that one year ago today, the grid was on... and this Jedi was offering his Halloween candy (that was so awesomely smuggled in by Daddy and E) to the technicians who were watching over him.

We started off November, aka Epilepsy Awareness Month, knee-deep in the destructive path that Epilepsy carves. I remember so distinctly that we were recovering from the absolute terror that was Renn's near-death experience. His adverse reaction to Cefazolin almost took him from us. But, like the true Jedi that he is, he pulled through, and lived to fight another day.

Today, we started off Epilepsy Awareness month exhausted... from an epic night of Trick-or-Treating. Then, we jetted off to soccer in the rain, and we're now following that up with movies and cuddles on the couch. It's unreal. God has transformed the world we knew into this vast land of wonder, joy, and excitement. Granted, not everyday is easy. There is still an immense amount of fear (especially with me) that the evil seizures will return. But for now, they are at bay. And we never hesitate to thank our Heavenly Father for each moment that is seizure free.

In September, just four days shy of Renn being 6mos seizure free, our Jedi did something... odd. At soccer practice, he began to slowwwww dowwwwwnnn. It was like watching a real-life person pretend to talk/walk in slow motion. It was bizarre. I was quick to panic and lable the event as a seizure. Both Renn and myself left soccer practice that night just weighed down with disappointment. I couldn't even encourage him, because I felt that somehow I had failed him. Luckily, the hubs came in like the lionhearted man that he is, and helped us through it. When I called his Neuro team the next day, one of his doctors said she was incredibly confused by the description of the event and said we shouldn't be so quick to assume it was a seizure. She said he may have been overheated and dehydrated, and that his brain may have wanted to seize, but couldn't. Sure enough, it was 105 degrees outside that day, and I don't think he'd had enough water.

Needless to say, he's not had anything since. So, it's with great pride and thankfulness to God that we can say that Renn is now...

 7.5 months seizure FREE!!


Between soccer 5x a week, Cub Scouts once a week, homeschooling, and church... the new normal in this house is simply trying to keep UP with these two active boys. Thank you, God, that we still have the opportunity to do such a thing. We just came back from his post-surgical Neuro phych evaluation at UCSF, where we finally got to reunite with the Mighty C. It was a tearful reunion for me, as I watched the Jedi jump into the arms of the nurse he still refers to and talks about every single day. We've been back to UCSF about six times since surgery, and the Mighty C hasn't been there! So, this was an incredible gift for Renn... and hopefully the Mighty C as well.

As we embark on Epilepsy Awareness Month on this blog, prepare to hear from a couple more families who are journeying through it all, and prepare to learn a bit more about what it's like to live with Epilepsy.

Here we go! If you have a special way you spread Epilepsy Awareness, let us know! Or, if you have specific questions that can be addressed, contact us and we'll get to answering you right away.

God bless you all... Here's to being seizure FREE yet another day!


Monday, September 1, 2014

Epilepsy Families: Mason's Journey

Happy Labor Day, friends!!

We took a last-week-of-Summer-vacation break from the blog, last week. But, here we are again!

We are continuing our look into what Epilepsy is like for other families and kids.

This all started for us 2.5 years ago (officially). It's been a crazy ride, as many of you know. Tomorrow, our Jedi starts SECOND GRADE. Hard to imagine, right? This little man who was told he would have to repeat First grade, will be starting another big year. Per his request, we are homeschooling again. He has been so eager! Plus, his younger brother will also be homeschooled, per his request as well (E's, not Renn's). I'm going to be a busy Momma! But, we can't wait. And we are thankful for the opportunity.

Now, this is Brandi. She is mom to Mason, and absolutely scrumptious little man!! She wasn't sure how to write everything down, so we did this in a question/answer format. Please welcome Brandi!

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Hi! And welcome to The Brain of a Jedi!!

 
Please introduce yourself, and tell us your child’s name and age:

My name is Brandi and my son's name is Mason.  He will be 4 years old in two weeks and starting preschool next week.

How old was your child when he/she was diagnosed?

He was diagnosed with absence seizures when he was 2 years old.  When he was about 16 months, I noticed that sometimes his eyes would roll back and to the side randomly. And despite other friends and family members telling me that it was nothing- that I was just being paranoid, I knew that something was wrong.  One day he fell down the steps when his eyes rolled back and I knew it was time to call the doctor. They saw us the next day and ordered an EEG so we took him to UVA Hospital.  The first EEG was complete torture for him as I am sure they are for all little ones.  The doctor called me within a couple days and confirmed my fear that it was indeed abnormal brain activity which they would diagnose as Epilepsy. Since then, he has had another outpatient EEG, inpatient 3-day EEG, MRI, so many blood and urine tests that I can't count, and genetic testing. 

 Have you been lucky enough to find a medication that has kept seizure activity at bay? 
If so, which one(s)? Which ones have you tried in all? 

We have tried Levocarnitine, Keppra, Lamictal, Zonisimide.  Currently he is taking Levocarnitine and Llamical and he still experiences daily seizures.  It is questionable if they are as frequent as they were in February when he had his inpatient EEG, as he was having at least 20+ day then.  

Are there any other methods you guys are willing to/are having to try to get rid of seizures? (ie VNS, CBD oil, Lobectomy/Resection, or Ketogenic diet)

At this point we are unsure about trying other methods to control his seizures besides medication.  The most challenging part is getting him to take his medication twice a day.  There is a lot of begging and making deals to get it done.
  
Caring for someone with Epilepsy can be difficult and daunting at times. Do you have a lot of support in your area? What do you do to stay positive? 

I don't have a big support group of people that understand Epilepsy so if I have any questions I turn to this Moms of Epilepsy FB page because really my friends and family members just don't get it and feel that my husband and I just spoil my son entirely too much. 

What is the most challenging part about being a mother to a child who has Epilepsy? 

It is extremely difficult to watch him suffer and know that it isn't fair that he has to take his medication and have Epilepsy.  Also, I worry about him having a Grand-Mal seizure when I'm not there. 


If you could teach this world ONE thing about Epilepsy, what would you teach it?

If I could teach one thing about Epilepsy to people it would be to change the stereotype and get rid of the stigma.  People automatically assume that if [someone has] Epilepsy they also have an intellectual disability and this just isn't the case most of the time.  





Thank you so much for joining us, today! We love educating about this wretched condition, and are thrilled you have shared your journey with us!

Wednesday, August 20, 2014

Epilepsy Families: Noah's Journey (pt. 2)

Welcome back!! Here is part TWO of Noah's journey, as told by his incredible mother, Mallory. If you missed it, you can read part one HERE.

Back to you, Mallory!
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September 2013 Noah had a neurologist follow-up and it was at this time his neurologist wanted to get down to the nitty gritty and figure out why Noah was having seizures.  Noah’s neurologist was going to schedule him for an up-to 7 day VEEG (Video EEG) as an inpatient.  While in the hospital they were ordering a high-resolution MRI, and a SPECT Test (with and without dye).

November 2013 Noah was admitted in the hospital for his VEEG, MRI, and SPECT Test.  We only had to stay for 2.5 days because Noah had enough seizures while at the hospital that they were able to get all the testing done as well as obtain enough information that they were comfortable in sending us home. 

This was the results of his testing:

Study recorded 13 electrical clinical seizures (5 night one, 1 at nap, 7 night two) that all began with a tonic seizure followed by a cluster epileptic spasms.


"The EEG onset appeared to have arised from over the right posterior hemisphere near an area that appears abnormal on the MRI scan representing a possible focal cortical dysplasia.  These results and potential for surgical intervention will be reviewed at an upcoming epilepsy conference after which time the parents will be called with a recommendation."


After receiving these test results our neurologist from Texas Children’s Hospital informed us he was leaving to go to a hospital closer to his home.  We, thankfully, got added to the head neurologist at Texas Children’s Hospital.  We hadn't actually met him, but we had an upcoming appointment that we were looking forward to.

By December 2013, Noah was having a terrible time sleeping because he was having so many seizures at night.  Noah’s neurologist then added a second medication Clonazepam for him to take with his other medication, Trilepital.  The Clonazepam helped Noah sleep better, but he was still restless.

In April 2014 we met with the head neurologist, Noah’s new neurologist, at Texas Children’s Hospital.  This is what we found out:  We finally found out WHAT is causing the seizures?  Noah's seizures are happening due to Focal Cortical Dysplasia in the right posterior (back) part of his brain.  Basically meaning he has one spot (focal) where the tissue (cortical) of the brain is abnormal/not developed correctly (dysplasia).  The doctor told me this was nothing I did during pregnancy or anything Noah did since being born; his brain just didn't completely developed properly in womb.  The exact type of seizures Noah is having is called "complex partial seizures."

Another answer to a question we have was, will he grow out of the seizures/epilepsy? Here's the answer we got.  Most kids who grow out of their seizure disorder will have normal MRI's and have their seizures easily controlled by medication.  Clearly this is not the case for Noah.  His neurologist told us that unfortunately, Noah will not grow out of the seizures.  He will live with them.
We were then informed of the four ways to control epilepsy.

There are four ways to control epilepsy; with specifics on my son’s particular case:
1) Medicine

2) Surgically remove the area where the seizures occur (as long as they are in one location; if the seizures are in multiple locations, surgery really isn't the best option)

3) Special diet called Ketogenic Diet (not recommend by our doctor because it's a hard diet to follow and he tends to only do this for those with NG-feeding tubes; plus once you hit teenage age/adulthood it’s not recommended)

4) VNS (Vagus Nerve Stimulation) which is a pace maker that sends electrical shocks to the area of the brain where the seizures are occurring.

Our doctor flat out told us that Noah could have surgery now, but he likes to have two failed attempts where medication does not control the seizures.  Although Noah has been on four different medications since 3 months old, our doctor is only counting the main one he is on now, Trilepital, because the first two weren't for exactly what Noah has, they were more for the spasms; and the Clonazepam medication is not used as a primary medication to control seizures, it’s typically a secondary medicine.  So only with this information, Noah has only had one failed attempt to control the seizures.  With that said, Noah is getting another medicine to start this week, Onfi.  If the Onfi fails, meaning Noah cannot be seizure free (not even one) for 3 consecutive months than that will count as another failed medication attempt.  At that time we will then take on the surgery journey to remove the portion of Noah's brain causing seizures.

I asked his neurologist that if Noah proves the medication route doesn't work, then how long it would take to get him in for surgery.  The neurologist said 3-6 months.
 
We left that appointment with Noah’s third medication, Onfi (added to his Trilepital and Clonazepam).

By mid-April Noah had already significantly failed the new medication and the process of a surgery date had been started.  We met with a neurosurgeon where we all agreed that a Subdural Grid placement followed by a resection was our best option for Noah’s surgery.  With this route they gird is like an EEG, but on the surface of the brain.  This gives them a more precise location of where the seizures are coming from; the other option was to just go in and remove the focal cortical dysplasia part.  We didn’t feel that was completely necessary, so we went with the grids.

July 8, 2014 Noah went in for part 1, subdural grid placement, for his brain surgery.  Surgery for placing the subdural grids took 8 hours from the time he left our side until we got to see Noah in recovery.  He had an 8x6 grid placed, 48 little EEG monitors, and 4 internal probes that help determine the depth of the seizure.  I will not lie, seeing Noah in recovery was the worst feeling ever.  I have never heard such a painful, hoarse cry.  

I remember just looking at him and my husband and thinking, “what have we done?”  He had a drain from his head, a catheter, two IV’s (in the end he had 7 IV’s placed), an aterial line, blood pressure cuff, and the no-no’s (which are Velcro arm braces to keep him from bending his arms at the elbow).  The first 24-hours he didn’t sleep at all and was quite uncomfortable, yet in good spirits.  He was placed in ICU for 24-hours, and then we were moved into the Epilepsy Monitoring Unit.  Noah had multiple seizures the second night at the hospital including one that lasted 4 minutes long, which is the longest that he’s ever had to my knowledge. 


By July 10, 2010 (this happens to be my husband and my wedding anniversary, 2010) they were taking
Noah back in for his resection at 1:30pm.  This surgery, the right occipital lobe resection, took 12 hours.  When we finally got to see him in recovery he was in much better spirits then the first time.  The neurosurgeon told us that everything went well and that when they tested for seizure activity before closing him up that the EEG went from active before surgery to completely inactive after surgery.  We were thrilled.  Noah was placed, again, in ICU for 24-hours and then moved back to the Epilepsy Monitoring Unit.  






We were able to leave the hospital by July 13, 2014.  











Noah has been seizure free since July 10, 2014!!




This is the longest he has been seizure free in at least a year. 


Noah is a completely different kid.  He is learning so much in the past few weeks.  He can sing almost all the words to “Twinkle Twinkle”, before he only knew “twinkle”; he’s copying saying his ABC’s; he’s counting; and overall he’s more interactive with everyone.  Noah is also not nearly as, shall I say, naughty, as he was prior to surgery.  He listens more and understands what’s being asked of him, so that results in less time outs and more fun times.  My heart is filled with overjoy.  I will not lie; I fear that one day this will all end and the seizures will come back.  My husband and I have talked about this; we both agree that if he starts having seizures today that these past four weeks have been absolutely worth the surgery.

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Thank you, Mallory!! What a week it has been, sharing your story!

Now, for any new Epilepsy families out there, Mallory has also added a list of meds that Noah has been on, as well as their side effects. This information can be very helpful, as you are learning more and more about the condition that is a part of your lives, now. 

Remember, 1 in 26 people have Epilepsy.


Medicines & the Effects on Noah PRIOR to Surgery:
·         Predisone
o   Made him go from small/petite to very chunky
o   Made him very sleepy (slept easily 18-20 hours a day)
·         Phenobarbital
o   Made him tired
o   Made him irritable
o   Caused excessive learning delays
o   Eventually hated the taste and refused to take it
·         Trileptial
o   Made him tired
o   If increased too much too fast it would make him extremely nauseous and make him walk like a drunken sailor
o   Made him irritable, but not as bad as the Phenobarbital
·         Clonazepam
o   No bad side effects
o   Helped him get some sleep at night and control his bedtime seizures
·         Onfi
o   Made him tired
o   Made him irritable

Monday, August 18, 2014

Epilepsy Families: Noah's Journey (pt. 1)

The family we are talking about this week is near and dear to our hearts. They just endured watching their son have a lobectomy as well. The difference? Noah is THREE.

Mallory, Noah's mom, had a difficult time condensing his super long story down to one post. I assured her that that makes TOTAL sense, and that it's 100% okay. In his short lifetime, Noah has been through so much. But I can promise you, this journey has a happy ending... or is it happy new beginning?

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My son, Noah, was born May 19, 2011.  Noah started having infantile spams at 10 weeks old.  However, we didn't know that’s what they were.  I just remember holding him or watching him play on the floor and then all of a sudden start twitching uncontrollably for what seemed like forever, but in reality it was more like a minute or two. 

 Just to give a little background, I had the absolute perfect pregnancy with no complications.  He was born 38w6d via emergency c-section only because I was in the beginning stages of labor, he had been complete breech the entire pregnancy, and the OB/GYN thought my amniotic fluid was infected because I wasn't feeling well that day at all.  My fluid was infected, but Noah was perfectly healthy and had no complications.

Fast-Forward: When I explained these “twitches” over the phone to my pediatrician at the time, at Ochsner Medical Center in New Orleans, she thought it sounded like when someone is just about to fall asleep and they bob their head and jerk it back.  At the time that seemed feasible to me, so I went with it.  The longer this continued the more I knew that this wasn’t right.  He was having these “jerks” anywhere from 10-20+ more a day, and each “jerking” session had at least 30-100+ “jerks.”  

At around 4 months old my husband and I took our son in to the pediatrician because he was having bad gas problems.  Coincidentally, Noah had one of his “twitches” in front of her and she immediately looked at us and said, “Is this what he’s been doing?”  We replied, “Yes.”  She then left the room, came back, and said, “I believe your son may be having seizures.  I’d like for him to go upstairs to get an EEG done right now, as well as blood work, and a urine collection.”  My husband and I were in complete shock.  Never in our minds did we think our son was having seizures; that seemed impossible.  Nonetheless, we went upstairs and Noah had his first EEG.  The EEG came back with abnormal results, blood & urine work came back normal.  We were then referred to a neurologist & genetic doctor.  Noah was sent home on a prescription for a steroid, Prednisone. Noah took Prednisone from September 2011 until December 2011.  Once Noah was weaned off Prednisone he started Phenobarbital; they actually started weaning him off the Prednisone while slowly adding the Phenobarbital in December 2011.  He had also undergone an MRI to check for any abnormalities in the brain; results came back “normal.”  

By January 2012, Noah was only on Phenobarbital and we thought it was the miracle drug.  Noah stopped
having his infantile spasms and was seizure free from January 2012-May 2012.  Just after Noah’s first birthday, the seizures started to come back; and these seizures were stronger than ever.  By this time, Noah had been in the Early Childhood Intervention (ECI) program for his learning delays.  He started ECI at 5 months old.  Noah did absolutely nothing, but sleep.  He had stopped rolling over, he didn't smile, he didn't laugh, and he didn't engage with anyone.  Noah was seeing a speech pathologist (who worked on feeding as well), a physical therapist, and occupational therapist, and a specialty instructor who helped with pretend play.  

We saw the genetic doctor to rule out any other abnormality.  The genetic doctor did all of his tests; they all came back normal.  However, the genetic doctor felt he had “secondary mitochondrial disease.”  Oddly enough, we found out that this was his “go-to” diagnosis when he couldn’t give the parents an exact diagnosis.  This genetic doctor couldn’t even tell us what it was secondary too.    Of course we wanted a second opinion and we were just in luck.  My husband had accepted a job in Houston where we were then able to take our son to the #4 ranked hospital nationally, Texas Children’s Hospital.


Finally, we moved to Houston.  Noah went to his first neurologist appointment in Houston in the Epilepsy Clinic at Texas Children’s Hospital in November 2012.  First of all, this hospital is absolutely amazing and everyone is super friendly; I highly recommend them if you’re able to go there.  This is when we were actually told for the first time that Noah had a “seizure disorder” called Epilepsy.  Before now, the doctors in New Orleans just referred to it as infantile spasms; wow was that a bit of a shock to the system, especially when the Houston neurologist said that it was already in Noah’s charts as Epilepsy. We then started discussing everything that had been going on.  As soon as our Houston neurologist heard Noah was taking Phenobarbital the first thing he said is, “We are going to wean him off that ASAP.”  Of course my husband and I were thrown off by this and we asked them why.  Noah’s neurologist explained that Phenobarbital is one of the first medications on record to treat Epilepsy and it’s proven that Phenobarbital causes learning delays on top of other complications. So our neurologist added Trilepital with Noah’s Phenobarbital.  Noah also had two additional EEG’s at this time, an MRI, and blood work.  Both of Noah’s EEG’s came back abnormal, and then his MRI and blood work came back normal.  Noah started his wean off of Phenobarbital in December 2012 and was completely off of it by January 2013. 

Between January 2013 and May 2013 we basically monitored Noah and his seizures.  I have kept a chart since he was about 5 months old where I tallied each seizure, AM or PM, what it looked like, what he was doing, how long it lasted, etc.  I take these charts, which I still use today, to each appointment to be analyzed with Noah’s neurologist.  Almost immediately after Noah was completely weaned off the Phenobarbital he started learning and doing things he had never done before; it was like night and day.  We were happy that he was picking up on things and we loved the new change in Noah.

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Thank you, Mallory for part one of this story!! 

Please join us, as we look forward to part two, on Wednesday!

Wednesday, August 13, 2014

Epilepsy Families: Aiden's Journey

Family number FOUR in our lovely series! I hope you are learning something. Every person who deals with Epilepsy does so, differently. Why, you ask? Because seizures affect everyone differently.

This is Bridget... Her son Aiden has been through a lot of what Renn has gone through, but with much worse situations. Intractable Epilepsy means that most (if any at all) AEDs will not work to control seizure activity. Generalized Epilepsy means that the seizure activity is stemming from both hemispheres of the brain, making surgery impossible.

Aiden, has both.

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Christmas 2012 was such an awesome time for us. Our twins where healthy happy 4 year olds enjoying all their gifts from Santa. Aiden had difficulty with speech and was placed in speech therapy when he was 3. Otherwise, he was a happy, go lucky kid. Then January 2013, our lives changed.

My parents are our caregivers while we work, and when I picked him up they had told me that they thought he had a small seizure. I thought maybe he had a febrile seizure because he had a few in the past, but nothing for 2 years. But he didn't have a fever this time. I took him home and that evening he had one on me. He slumped over, had facial twitching, and drooling. My husband and I decided to take him to the ER. His blood work was negative, and head CT negative. They told us to take him home and just watch him, and we would need a Neurology referral. He had a few more the next day, so we took him to a larger hospital 45 minutes away. Basically, the same thing, but we got a Neurology appointment for that Monday.


The Neurologist did an EEG and it definitely showed seizure activity. He was diagnosed with Intractable Generalized Epilepsy. He was started on Keppra, but needed to be increased several times without success, so she placed him on Lamictal, then Onfi. Nothing seemed to work. 

We kept dealing with med changes for months, but the seizures kept getting worse. He started having Drop Seizures (sudden fall to the ground). He was having 10-15 a day in addition to the other ones. It was so bad, we got a protective helmet because he would fall from a standing position without any warning. 

Aiden was placed in the hospital in June. We spent 2 very long weeks there. Trying Dilantin and Vimpat, but it wasn't helping to much. They started Zarontin. They finally got him to a level they felt comfortable for discharge. When we were discharged, I just sat in cried, because this was not the same little boy. He walked around like a zombie. His speech was worse. I didn't know how we were going to get through this. 

Months went by with some improvement (only 3-5 seizures a day) but then the seizures started increasing again in September. He was placed in the hospital again. By this time he was in Preschool and his teacher was so awesome! She came to cheer him up in the hospital. The ended up started him on the dreaded Depakote. I can remember him having a seizure in the wheelchair when he was getting discharged. They told us it would take time to get the Depakote built up.

The next couple of months, meds were increased and increased to try to keep his seizures under control. He was doing the best he could in school. My husband and I decided we needed a second opinion. This was our little boy and we need to make sure there is nothing else that can be done. Plus, Aiden's poor twin sister was spending a lot of time with Grammy & Poppy between appointments and hospitalizations. I'm so fortunate to have such wonderful parents. 

Cleveland Cavilers visit Aiden!
We received an appointment with Cleveland Clinic. They scheduled us for a 5 day EEG monitored admission. First thing they said is, "He is on too many meds. It may take time but we need to find the right ones and wean off some of the others." 

They decided to try to wean the Keppra. They started by cutting it in half, and he had the worst seizure I've seen, and they said it was probably the quick change. The doctors were awesome though. He was having a lot of activity in sleep so they put him on Valium at bedtime. We felt good upon discharge because we had a great plan, and he was referred to genetics as well. 

By our follow up, he was completely off the Keppra, and seizure activity was decreased. After genetic testing, they discovered he had "XYY syndrome" which could be some if the reasoning for his developmental delays. Plus he had a missing piece of DNA. So, my husband and I recently had genetic testing to see if either of us had the same missing piece. If so, they said it probably doesn't have a link to Epilepsy because my husband and I are fine. Turns out my husband did. So, we have an appointment to discuss where we go from there. They are trying to figure out why he had Epilepsy. 

Things were going pretty well, but he was still having some seizures. Our local neurologist had a 24 hr EEG scheduled for February 2014. It turned into 5 days. He was having 20-30 seizures in his sleep without any external symptoms, so we couldn't even tell. He was started on Banzel. I thought, Great, here we go again. I immediately called Cleveland and they said it was okay.  

I couldn't believe the difference the Depakote increases and Banzel increases have made in Aiden. He has not had any daytime seizure and only occasionally does he have ones in that bring him out of sleep. He is talking more, speaking sentences, more words are understandable, and his coordination is better.   

We just had a follow up this past Monday, in Cleveland, and we are going to try and wean off 2 of his meds since he has been on them for a while. Because they have seen the most improvement with Depakote and Banzel, we are leaving those along with the Valium at bedtime. And, since he has been on Zarontin and Droskote for so long, she wonders if they are really having much impact. She said the only way we will know is if we try. We are starting with Onfi. It will take 8 weeks to wean him off, and if it goes well, we will try Zarontin. Their goal is a couple meds at a time, and eventually to get him off all these meds. I'm nervous but willing to try. Say a prayer that it works.