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

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!

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.

Epilepsy Families: Isabella's Journey

Family number three, in our series... The goal here is to open the eyes of the public to the challenges that each individual person, AS WELL AS each individual family, faces as they adventure through Epilepsy.

This is Rose... She has Epilepsy, but what she wants to share today is her daughter's story. Isabella is a little girl who inspires ME on a daily basis. To say she is strong seems so unfitting and ridiculous. Isabella is far past strong. She is a real-life hero, and one worthy of all the joy in the world. All this, and she's only four.

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Isabella Rose Wood was born on March 28, 2010. Other than swallowed Meconium leading to a short stay in the special care unit, she seemed to be a happy health baby. She met all her milestones, except not sitting up, but nobody thought much of it and neither did we.

Dec 10, 2010 Isabella wasn't feeling well. When we took her temperature we were surprised to see it at 96 degrees. A call to her pediatrician lead to an ER visit. The on call doctor ordered an x-ray to rule out pneumonia, but found no fluid in the lungs. We were sent home with assurances that this can happen in children. Isabella was fine. The next morning, our lives changed forever.  I got a call from the attending doctor at the ER saying to call him back ASAP. The chief radiologist was reviewing the films from the last night when he noticed a shadow behind Isabella's heart. We rushed back to the ER praying it was just an artifact in the film. Isabella was sedated and put into the CAT scan. Once she was finished, we were led to a room to wait for the results. After what seemed to be hours, a team of doctors came into the room. The shadow was a tumor known as Neuroblastoma; a form of childhood cancer. Isabella was immediately admitted to the hospital and we met her oncologist. The rest of the day is a blur of blood tests, scans, and doctor consultations.

Isabella had stage 3 intermediate risk Neuroblastoma. 

The doctor shared the treatment plan. A surgery to remove as much as the tumor as possible followed by at least 4 rounds of chemotherapy. The chemotherapy and possibly radiation were dependent on a genetic test from a biopsy of the tumor. The surgery was scheduled for December 13^th for early in the morning. The doctor sat us down to discuss what would happen for the procedure. The surgery should only last 2 hours. He was confident but made sure we understood the risks. We tried to think of what our questions were but the only thing that we could say was to bring our little girl back to us. The morning of the surgery was a very emotional time. We both wanted to be with her as long as possible but when the time came, we had to hand our baby over to the nurse. The tears were flowing as we said our goodbyes, terrified we may be holding her for the last time. It is impossible to put into words the fear that we felt in our hearts as we paced the halls, waiting. Finally, the doctor walked around the corner to tell us the good news. Isabella made it through the surgery just fine. He was able to remove approximately 70% of the tumor and inserted a central line, a Hickman catheter. We were transferred to the pediatric intensive care unit. The poor baby was in pain and we wanted to stay by her side constantly. 9 days later we were released from the hospital with the first round of chemotherapy the next day as an outpatient in the Oncologist’s office. We did five hours of intense chemotherapy for three days a week. Then on Christmas morning we were admitted back to the hospital for a virus that she couldn't fight off because she had no immune system due to the chemotherapy.

Finally we got back the results of the genetic test that was sent to St Jude hospital. They informed us that she had stage three intermediate risk Neuroblastoma Mync non amplified, which is the best possible outcome and she had to have only four rounds of the intense chemotherapy. Once we did three rounds of chemotherapy, we found out that a move to Orlando, Florida would soon be happening. So on February 28, 2011 we moved down to Florida and did our last round of chemotherapy that ended on March 12, 2011.    After we were done with the chemotherapy, we had two more stays at the hospital that were each two weeks long. One was for another virus and the other was for infection in her lungs. After this we were told we were officially in remission!

On Nov 5, 2012 Isabella had her first seizure while we were in Omaha, NE for a funeral. I didn't realize it was a seizure until the doctor at the hospital told me so. Isabella was having an absence seizure at that time. My first thoughts weren't that she had Epilepsy. I have it, myself, and I didn’t think she had it like I have it, but more of Oh, God, no the cancer is back… since seizures are a sign of brain cancer.

Luckily, no tumors were found in her brain. When we got back home we saw a pediatric neurologist who said it could be a fluke thing or it could be Epilepsy. A couple months later she had another seizure which confirmed she had Epilepsy. Yet another challenge for her to face. Then a few more months after that we found out she was deathly allergic to Lamictal, one of many AEDs prescribed for Epilepsy patients.

Isabella has had many EEGs to monitor her brain waves for seizure activity. Her seizures have changed some and her medications have also changed. Each time she has a seizure, it is heart wrenching to watch her face another challenge. Isabella is now at a good place with her Epilepsy and her life seems to be turning for the better.

           

For the rest of her life she will see many specialists for her health problems and possibly face many side effects from the chemotherapy drugs. She will be at higher risk for tooth decay and other forms of cancers. She may never be able to have children. I never imagined in my life that I would be a mother to a little girl who has faced cancer along with Epilepsy. Her ability to find happiness in the worst times amazes me every day. 

Isabella is my hero and the bravest little girl I know.

           

Epilepsy Families: Liam's Journey

Continuing our look at what Epilepsy is for other families, we have Holly. She is the grandmother to Liam, who is the cutest little 4 year-old ever. We had the pleasure of meeting them in person at a Purple Day event we went to, earlier this year.

Three happy Epilepsy boys! Renn, Christopher, and Liam

Liam's journey is also one of frustration and confusion... But you'd never know it, because his smile is so darn infectious!

Take it away, Holly!

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February 4, 2013

I was awakened by my daughter about 7:00am telling me that my grandson, Liam, had just had a seizure.

What?

She took him to the pediatrician that afternoon and she suggested an EEG. That was done about a month later. We never heard any results so we figured we’d just wait and see if he ever had another one. Well, 3 months later he DID have another one. I heard a strange yelp and ran looking for him around the house and there he was, seizing on the living room floor. So now we suspected Epilepsy. We started checking around to see what had happened with the EEG results. After finally tracking them down, we had to go meet the Dr. if we wanted to know the results. 

She told us... Liam has Epilepsy. 

She referred us to a neurologist at Children’s Hospital Central California (CHCC).  It took about a month to see him. In the meantime, we had a seizure at Disneyland in his stroller, and then several more… culminating to 2 seizures in one day, which, at that point, we called paramedics. They took him to the hospital and he was put on 1.5 ml of Keppra 2x per day and we were given a few Ativan pills only for emergency.  This was 10 days before his first neuro appt.  He had a couple more seizures and then the day of the appt. he had a seizure just before getting on the elevator to see the doctor. The Dr. increased his Keppra to 1.6 ml and ordered an MRI. The MRI showed nothing unusual. He told us the EEG showed frontal discharge, meaning he had complex partial seizures. (My guess was secondary generalization due to his convulsions).

Finally, after a few more seizures here and there we finally got him stabilized at 3.5 ml Keppra.  At around the 1^st of October (two months later) we started noticing his head was dropping (atonic seizure).  He didn’t seem to notice, it was so quick. So Dr. upped Keppra to 4.5, made no difference. Dr. decideed to switch to Depakote and wean off of Keppra. Big mistake! A few weeks into the wean he started having convulsive seizures. 3 in one day on Thanksgiving. So we immediately, upped the Keppra again, he had two more seizures a few days later, we upped it again and then he stabilized at 3.5ml Keppra and the 2.5 Depakote he had recently been put on. We were still not noticing significant improvement in the head drops, but no more big seizures!

We finally met with our new neurologist. The first one had moved on. He upped Depakote to 3.5, and a ordered blood test. Said he may have a variant of Doose Syndrome (from what I’ve read this does not sound correct to me) and that he may need to go on the Ketogenic diet soon. Everything seemed to be going well for a full month (except he was still having head drops), then he had a bizarre seizure on January 2, 2014 that we had not seen before. He let out a big scream and stood up and seemed to be hallucinating for 30 secs to 1 min. Then he snapped out of it and promptly fell asleep. That ended up being a fluke and didn’t happen again.

Depakote was taken out of the equation and we are only on Keppra, now. We were told to go on the Ketogenic diet for his head drops, after a 48 hr VEEG. But….about 2 wks after his testing his head drops seemed to have disappeared! So, at that point, we would not have to do the Ketogenic diet.  Yay!

Well, one night in March (after going 8 mos seizure free, except the Thanksgiving incident), Liam’s Mom forgot to give him his Keppra and at 5:00am we had a myoclonic, tonic-clonic type seizure. No big deal, right? It had to be the meds. However, a few days later they started up again. Only now they are just while he is sleeping. Dr. has decided to put him on Onfi also. This was a very gradual process as he was still having seizures until we finally reached the right dosage. 

It has been 2 months now, but we know we are not out of the woods. Liam has been diagnosed as moderately autistic and is going to a special educational preschool. The Dr. was not surprised with this diagnosis. Apparently, it’s not uncommon for this to go hand in hand with epilepsy.  If this newest drug fails at some point we will definitely be put on the Ketogenic diet.  I still do not think he has Doose Syndrome, as the hallmark symptom for that ailment is drop seizures. We do not have that! Another thing when I asked the new neuro about the complex partial seizures, he told me “no” he has Generalized Epilepsy. Why would the first neuro say he had pinpointed the seizures coming from the frontal lobe? Don’t these two Dr’s know how to read an EEG?

Hopefully, our road will be short with this awful ailment but you just never know. Anxiety and worry have now filled our lives and it’s not a good feeling. Yay, for Epilepsy awareness programs and our Moms of Epilepsy group! It really helps to talk to people in the same boat as you. Love those ladies!

Epilepsy Families: Kayla's Journey

I blog our story continuously because it's cathartic for me, as well as informational for others. But, I realized that Renn's circumstances are NOT the only ones that can be labeled as Epilepsy. There are so many out there battling this condition, and I since I am in the business of spreading awareness, why not feature others and their journeys? Last year, I shared Kate's story. Michelle, Kate's mom, gave us all great insight as to what to expect for Renn's surgery.

So, I got an idea...

I am part of a group called "Moms of Epilepsy", on Facebook. We are a support group of endless love and information, as we deal with the ins and outs of our daily lives caring for someone who has (and in some circumstances having) Epilepsy. We are from all over the USA, and even Canada. I'd seriously hopeless without these ladies. I am sharing their lives. Their battles, struggles, triumphs, and joys. Now you can understand that NO TWO PEOPLE have the same Epilepsy. NO TWO PEOPLE face Epilepsy the same way.

This is Kelly Irvin... mother of three, wife, and one tough cookie. Here is her daughter, Kayla, and their story:

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No Guarantee

I remember it like it was yesterday, the doctor said it was Epilepsy.

My heart was shattered but for her I remained strong.

How do you tell her she isn't like the other kids, what can you say when she asks why me.

How do you explain what happens to her when she has no memory.

Why scare her when she doesn't know it is happening.

Do I let her go or do I make her stay

How do I know she will be o.k.

I put my trust in others to know what to do even though it is killing me inside

I want her to be her own person, I just wish there was a known guarantee.

I want to protect her forever but I know it just isn't fair

She has been through so much in four years, much more than most kids her age

We live our lives from day to day because tomorrow is no guarantee

Do I let her go or do I make her stay

How do I know that she will be o.k.

I put my trust in others to know what to do even though it is killing me inside

On the outside I am strong for her but inside my heart is shattered

The only thing that keeps me going is seeing her beautiful smile

For now they are controlled, almost one year now but I know

Tomorrow is no guarantee.

April 19, 2010

It started off like any other normal day for our family. Eric was working and I was at home with Kayla our nine year old, Alexa our five year old, and Chandler our seven month old. We were getting ready to meet my sister-in-law and our nieces to get all the grandkids' picture take for a present for Eric’s parents. We were almost ready to go and I told Kayla and Alexa to go get their shoes on so we could get going.

This is the point in our journey where our lives were forever changed.

It was still chilly out so I expected the girls to come downstairs with their tennis shoes on which Alexa did but Kayla came down with Flip Flops on. I proceeded to say, “Kayla, don’t you think it would be better to have tennis shoes on?” Kayla’s response was, “Mom these ARE my tennis shoes!” So I say, “Kayla don’t act crazy, go get your tennis shoes on. We have to go or we are going to be late.”

 By this time Kayla was crying and just kept saying mommy these are my tennis shoes. At first I thought Kayla was just trying to be defiant until I remembered this is not Kayla and how she acts ever. So I started asking simple questions like what day it was and where we were going, and to my surprise she couldn't answer any of the questions and just kept crying and crying by this time I knew something was wrong but had no idea what so I called her pediatrician and explained what happened and how she was acting. Her pediatrician said, “How soon can you get her here?” Totally alarmed by this, I said we can be there in ten to fifteen minutes. By the time we got there Kayla was acting normal again and was acting like it never happened and couldn't explain it and acted like she didn't even remember it. We went through the process of what happened and what Kayla was doing and what the pediatrician said next made my world completely stop. She said she thought Kayla had a seizure and the confusion afterwards is what I was seeing. The last half hour of that appointment was a total blur I couldn’t tell you what she told me or explained to me I just know we left there with an appointment scheduled at Children’s Hospital with a Neurologist named Dr. Slaughter the following day.

Over the next couple of days my life was a blur and Kayla had no idea what was going on or why she was having all these tests done. She had an EEG and MRI and by the end of that week it was official my daughter who until four days prior had nothing wrong with her now has a diagnosis of Generalized Non-Convulsive Epilepsy. To this day I still remember how I felt at that specific moment that the Dr. told me and my husband what Kayla had. My heart sank and I started crying not knowing if I was crying for my daughter or crying for myself. I knew at that moment our lives were going to be different. Dr. Slaughter classified her as having Absence seizures (starting spells) and put her immediately on Lamictal. Over the course of a year we got Kayla on the baseline of Lamictal and she did not show any more signs of seizures. We fell into the routine of taking medicine twice a day, making sure Kayla had enough sleep every night 9-10 hours, keeping her away from known triggers and back and forth to Children’s Hospital for checkups every couple of months. At this point I thought o.k. this isn’t so bad we have a handle on it and she can have a normal life. Then in the summer of 2011 things changed again. Kayla started having what they call breakthrough seizures, but these were different not the normal staring spells like before there was more movement involved with them. After increasing the Lamictal many times and only to see an increase in these seizures the Dr. told us that she was having Myoclonic seizures and that the Lamictal was just aggravating them and we needed to changes medicine. I had never heard of a Myoclonic seizure and it was nothing like I expected (stigma of what I knew about seizures prior to this journey) Myoclonic seizures at least for Kayla included Eye Fluttering, Arm Jerks, head bobbling and she would completely stop what she was going at the time. They lasted 10-30 seconds and then she would start up right where she left off at. So we started to reduce her Lamictal and put her on Keppra, when she was completely off the Lamictal and only on the Keppra she was still having seizures almost daily. At this point she said she wanted to add another medicine to see if the combination would help calm her seizures. We started her on Zonegran with high hopes that it would work with the Keppra. We kept working with the doses of both meds through 2012 with no success always still having seizures although not has many as just with Keppra but she was still having them daily up to 12 or more a day.

By this point I was getting impatient and I wanted what was best for Kayla, I had met Dr. Patel at the Epilepsy Symposium that our local Epilepsy Foundation put on in November 2012 and I liked him from the start, he just happened to be an Epileptologist at Children’s Hospital where Kayla was already going so at our next appointment with Dr. Slaughter I asked about Dr. Patel and what the chances where of us being able to see him as a second opinion on what to do with Kayla. Dr. Slaughter got us a referral and an appointment for December 27, 2012. At this appointment Dr. Slaughter said to us that Kayla is showing symptoms of Juvenile Myoclonic Epilepsy and that Dr. Patel would be able to help her. Little did I know that my world would again be turned upside down just days before this appointment.

December 23^rd, just two days before Christmas, Kayla had her first Grand Mal Seizure! Kayla and her sister were out feeding our dog like they do every day and I just happened to be standing at the door watching them, there was snow on the ground and they tend to mess around so I was watching them. Next thing I know Kayla drops to the ground. An alarm sounded in my head and said get to her now this is it. I took off running outside in my pajama pants and t-shirt when I got to her my worst fears were realized. She was convulsing and she was turning blue! Instead of my motherly instincts kicking in and me doing what I knew I had to do I froze and started freaking out. I shouted at Alexa to go get my husband, her step-dad. I was totally worthless at this point. My husband get there and immediately turns Kayla on her side and her color immediately returns. By this time the convulsions had stopped and Eric had scooped her up and was walking back into the house. And there I sat crying hysterically being no help what-so-ever. It took me a good five minutes to get myself together enough to call the Neurologist on call at Children’s. Kayla was Oblivious to anything going on around her she was laying on the couch with this blank stare on her face, she was so tired. When she finally did come around she asked me why her pants were wet, she didn't remember going out to feed the dog she had no recollection of the seizure or what happened after until at least fifteen minutes after she was back inside. I told the Neurologist on call exactly what happened and he said as long as she is responding to us now she would be o.k. and that it was up to us if we wanted to take her to the hospital for observation. Between the Neurologist and my husband we decided not to take her. The Dr. increased the Zonegran that day with the hopes that it would curb any more seizures at least until our appointment on the 27th. Christmas 2012 was an absolute cluster blur. I remember not letting myself enjoy it because I was so worried about Kayla and what would happen if she had another one, would I be able to handle it or would I be a blubbering mess again. I felt like I had let her down, I knew exactly what I needed to do but I couldn't get my body and mind to work together. Waiting until the 27th seemed like an eternity.

Finally December 27th was here and I don’t think I had ever wanted to go to an appointment so much ever. Dr. Patel was so nice both to me and my husband but especially to Kayla. He explained everything to us including things Dr. Slaughter had never explained to us. He told us that yes she has Juvenile Myoclonic Epilepsy and that it was genetic she had been having seizures since she was born most likely we just didn't know what they were. Dr. Patel talked to us for three hours that day and we left with a game plan something we had never had before. By the time we left there that day we knew we were taking her off the Keppra and Zonegran because they were obviously not working and we were putting her on Depakote. As of the first week of January a mere four days after starting Depakote we saw Kayla Seizure free for the first time in three years. It was a great feeling finally we found a medicine that would work! Great thing right? Not so fast. Then we started to see major changes with Kayla, her cognitive skills were slow to begin with but were even slower now, her speech was slowed, she didn't want to eat and she was acting and looking like a zombie. Was this our trade off surely they wouldn't want to keep her on something that would not give her the quality of life that she deserves right? This is where our journey continues the Dr. doesn't want to take her off it because it is working so we continue to take her off the Zonegran which as of 6/20/13 she is completely off the Zonegran and solely on the Depakote. We have to give her body time to make sure all the Zonegran is out of her system and see what her body does only on the Depakote. As of now she still doesn't want to eat; now when I say this I mean she is eating the same portion size as my three year old son and she will be 13 this year. She is still slow both in speech and cognitive skills the only good thing so far is she is not walking around like a zombie anymore. A couple more weeks and if we don’t see any changes then the Dr. wants to reduce the Depakote by one pill to see if it helps, if it doesn't then the only other option is to change meds again and we only have one med option left at this point and it is Onfi a newer medicine in the U.S. market but it is supposed to be good like Depakote. So as of basically the end of June our Journey continues.

FAST FORWARD

Today, July 29, 2014 Kayla is still on the Depakote, we have gone down to 1250mgs and most of the side effects are gone now. We are still not completely back to where she was yet, slowness is still there just not as bad. She has been seizure free now for 19 months! She is now in puberty and has started her cycle which has caused many other problems. She currently is on Lexapro for her Anxiety and Depression and we are waiting to see the Adolescent department at Children's Hospital to start her on the Depo Shot to hopefully curb some if the issue her period is causing her. Last appointment her doctor mentioned that we are fast approaching her 2 year seizure free mark and in December he wants to do another EEG if it comes back Abnormal we do nothing and everything stays as is. If it comes back Normal then we need to further discuss weaning her off her meds.