epilepsy lesson

Ever since we had our hearing we have been re-playing in our minds things we could have said better. Overall things went well and we feel good about it, which is great.  One of the areas that we wish we could have been more clear on was actually the basics about epilepsy. Our expert witness jumped right in talking about traumatic brain injury and the judge had no idea how this related to epilepsy. However, it is key to understanding Calvin's condition....

So, here's a basic lesson on epilepsy. There is more to epilepsy than just seizures. Of course, seizures are 100% part of the disease and necessary for a diagnosis of epilepsy to be made. However, there is so much more.

Here are the 6 parts of the disease.

1. Seizures - there are many kinds. Grand mal seizures are the kind where people are shaking violently all over their body. There are mini- mal seizures, simple partial seizures, complex partial seizures (Calvin has these - they effect more than one part of the brain, involve body  movements and loss of consciousness and no memory of the seizure when it is over).  Some seizures the person loses consciousness, some the person does not.

2. Pre and post seizure activity.  Before seizures some people experience auras - weird feelings, smells, or sensations. For some people the aura is hours. For others it is seconds. I met a girl who has an aura about 10 seconds before a grand mal seizure. For her it is just enough time (usually) to sit down or put down whatever she is holding so she doesn't get seriously injured during the seizure. I met another person who always gets sick and throws up before a seizure.  Not everyone experiences auras before seizures. For the type of epilepsy Calvin has, sometimes the auras involve extreme mood and behavior problems. We are not sure if Calvin has these auras or not. He certainly has the extreme mood and behavior problems but we are not sure if they are auras.

After the seizure there is a post-ictal period, often involving the intense need for sleep. Seizures are very active and intense activity for the brain and the brain will need rest after a seizure. Calvin used to have a lot of episodes of pallor followed by deep sleep. He would fall asleep on the floor, at school, in the car, at the dinner table. He would just look at me and say, barely audible, "i'm tired" and then instantly go to sleep. We suspect looking back that these were seizures he was having that were not manifest in the usual way.

3. Sub clinical seizures -  Seizures are intense activity in the brain of rapid firing of neurons. This can happen anywhere in the brain. Sometimes it will happen and there will be nothing on the outside that indicates the seizure is going on. If it is in the motor strip (the part of the brain controlling arm and leg movements) then that movement will be seen. But, what happens if it is in the part of the brain that controls smell, or rage, or vision? You could smells strange things, get super angry or see "things" ....  Calvin has most definitely had sub clinical seizures. He may still be having them. It is hard to say.

4. Brain Damage.  Seizures cause brain damage. Imagine that your neurons in your brain are like an electrical wire designed to carry a current. It can function properly for a LONG period of time, however if you over stimulate the wire, giving it too much voltage you can damage the wire or even cause it to burn out permanently.  Translated to the brain cells, that means the repeated seizures along a certain pathway can kill the brain cells.  Calvin's MRI shows evidence of brain damage in the area he had his seizures.  Of note, his brain damage is more than likely what can account for a lot of his behavior and mood problems.  I am sure you have heard of people who have stroke and then turn into a mean grumpy person. That is sort of what Calvin is like.

5. Medication. The medications that treat epilepsy are not without side effects. Since the epilepsy itself is over active neurons, the medication works to slow down the firing of those neurons.  The problem is that slowing down the misfiring neurons with a medicine will also slow down the "normal neurons" so overall brain function is slowed. It is a bummer.   No medication is without side effects. Many also effect mood, are tough on the stomach and have other undesirable effects. We have been lucky that our first medication has worked with Calvin and the side effects have been minimal. of course we can really see or measure how much it slows him down cognitively but it is nice that he isn't having other side effects on top of that.

6.  Epilepsy is a progressive disease. It is not curable. It is treatable with medication in some cases. Often even after treatment is successful for a time there will be breakthrough seizures as the disease progresses.   Part of the reason epilepsy is progressive is that the brain "remembers" the epileptic pathways so once you've had a seizure it is easier for you to have another. Think of learning an instrument like the piano. If you practice scales every day, eventually you will not even have to think. Your fingers (and brain) will just know what to do. Or, in a sport where you condition your muscles to kick, hit or shoot just perfectly. Likewise, the brain creates these pathways of rapid firing and the brain remembers and repeats them, often adding to them so that seizures get worse over time. That is why dr.s do their very best to stop seizures completely with medication. Once you have them, they will progress.

June 6 neurology appt

We had our neurology appt with Dr. Nespeca this week.    Here is the bullet statement summary.

-dr is pleased the trileptal is controlling the seizures and even the inter-ictal spikes seen before.

-dr had received a call from the epilepsy foundation about Calvin's behavior at the meetings. They aren't really sure what to do with him there. (I was fully aware of how Calvin is trouble there but amazed they called asking Dr. Nespeca for help. He was pretty surprised too.  Calvin swears a lot at those meetings and it is difficult since there are so many young impressionable kids at those meetings ranging from 2-teenagers.  The format is that the parents go in one room for a parent meeting and the kids go to another room for expressive arts. There is a very high adult/student ratio and it is fun stuff so there are rarely if ever any problems. Except for Calvin who is pretty tough.  Last meeting when I went to get him to go home he refused to leave and escalated into a full fit, throwing, screaming, hitting, etc. I ended up having to hold him in a restraint for about 45 minutes before I was able to leave. The girls were being supervised by some of the supervising adults there but it was not a pretty sight. The meeting was from 6-8pm. We got home close to 10 on a school night. It was a disaster. They called me asking what we should do or if there is someone that can come and sit with him in the meetings so I can still go to the parent meetings. I have nobody. I will probably skip June and then I think July/Aug there are no meetings and maybe by Sept we can try again).

-Calvin was not at all in a good mood during this visit. Completely uncooperative. dr. couldn't examine Calvin. Calvin even tried to kick the dr. when he came over to talk to him.  This is the first time Calvin has been uncooperative at a neurology visit so this was dr. nespeca's first time seeing what Calvin is really like. Dave had to restrain Calvin in his arms during our wait in the waiting room (45 minutes) plus our visit with the dr. (30 min).

-Dr was wondering how we ever get anything done if Calvin acts like that and wondered how many hours/day we spend holding him.

-Dr. is pleased we are seeing dr. max on Monday.

- There was one unusual wave form on the EEG, not an epileptic spike, but a wave in the temporal lobe that occured each time just as Calvin was falling asleep. It is something that is commonly seen in 3-5 year olds but not in older children. This finding suggests that Calvin is either very slowly developing in part of his brain or that he is no longer developing in that part of his brain. So, while the EEG gave us good information about his seizures it also added information that makes it look like Calvin does have a physical problem in his brain causing his problems (behavior, developmental and even the seizures). dr. Nespeca did not speak a lot about this but he and Dr. Wang both mentioned it.

-3 months ago at our last visit when I told dr we were applying for regional center he thought we probably wouldn't get in and thought we probably weren't good candidate. I think he was surprised to hear we were applying. After seeing the video EEG and Calvin's behavior he had made a complete change of heart and now is completely endorsing our application. While we were in his office  Dr. wrote a letter for us to take to our regional center appeal meeting on Monday with results of the video EEG and stating that he hopes they will accept Calvin and offer our family help in the form of behavioral support and respite care.

-dr. added White matter abnormality to Calvin's diagnosis list. I think it used to say mesial temporal sclerosis but he changed it to white matter abnormality. It think he did this so it is a more general term to explain his developmental disability rather than just a term associate with seizures.

complete diagnosis list from neurology
-localized (focal) (partial) epilepsy and epileptic syndromes with complex partial seizures, without mention of intractable eplipsy
-Oppositional Defiant Disorder (ODD)
-aggression
-sleep disorder
-white matter abnormality of the brain

On the other lists (plastics, neurosurgery, ophthalmology) would be
strabismus
craniosynostosis
amblyopia

hospital stay

This is the view from the door 

 This is the moniter keeping track of Calvin's brain waves and a video of what he's up to so they can match up any events they see with what he's doing (sleeping, resting, falling asleep, waking up, happy, not happy, etc.)

 For most of the time Calvin was hooked up to the monitor and couldn't be more than about 5 feet from  the bed. He was allowed 25 min off line/day.  When he was off line he carried this little bag around that his wires went into. There was a game room on the floor with games, movies, crafts, etc. that we went to on our breaks each day.

Monday night I brought the girls to visit Calvin. He had had such a relaxing day we wanted him to have a little excitement and irritation in his life so as to mirror a more real life picture of what would happen to him day by day.  We wanted him to experience a range of emotion and experience to see what/if anything triggers epileptic activity.  The girls were so excited "mom, I've never visited anyone in the hospital! This is so fun! What room is Calvins? ...." They are so full of energy!

Dave also asked me to bring Calvin some homework to try to irritate him a bit. But it didn't work. He was happy to have a workbook and did a couple of pages happily! :) This is not our usual Calvin. However, an hour of the girls non-stop talking did get him a bit irritated.

The girls had a good time looking at every inch of the room and eating lunchables for dinner.

This is the room.

 4th floor of the new building.

DAY 2:

Day 2 - Calvin had a fit. Probably this is the only time I would actually be happy to have him have a fit, but we wanted to see what was going on in his head when he is really mad. The trigger for this episode was the dr coming in to see them and dave turning down the tv so Calvin couldn't hear well and then talking over his show. Dave had to hold Calvin in a restraint for a couple of hours so he wouldn't tear off his wires. He calmed down and the rest of the day was uneventful.

Dave had to go to work so Clare and I came in to keep him company from 2-7pm. Clare played games and watched TV with him. By 7 she was bouncing off the walls! (It was amazing to see the contrast between the healthy girls and Calvin. Normal kids should not be able to sit in the same spot for 48 hours).

DAY 3: The dr. made rounds at 9:30 and it took another hour or so to get the discharge orders in place for them to leave. They arrived home at noon.   The dr. read all data before she came to see Dave and Calvin and discussed everything she saw (next post). She also re-read his previous EEG from last summer to compare.

The admitting physician was not our usual neurologist   Our neurologist this week was Dr. Wang.  She was very kind and did a good job with us. Normally we see Dr. Nespeca.  We will go to Nespeca in two weeks to discuss the official results.


Overall, the study went very well. We got a lot of data. Cavin was super well behaved for the most  part which was good. He got lots of rewards (one per 12 hours) for being cooperative and sometime soon we will all go to Iron Man 3 to celebrate him keeping his wires on for 3 days.

how happy is Calvin on day one of his inpatient video EEG?

Happier than a witch in a broom factory!

unlimited TV, and wii

no sisters

no mom

room service.

one happy boy!

this week's news and more temporal lobe epilepsy information

Well, the official MRI results are in and there was no finding on the MRI which is good news.  We had our visit with the neurologist today to discuss our current problem which is Calvin's behavior. Even though he is seizure free, he is still completely out of control emotionally. Since he has epilepsy in his temporal and frontal lobes his behavior/mood are directly related to his epilepsy. We went to the dr. to discuss our current situation and what course of treatment he'd recommend. At this point it is not possible for us to blindly walk into a psyciatrist's office looking for medicines and as epilepsy is our first disease we thought we should start there first.

Our dr says though some  will deny the relationship between emotional/behavior/mood problems being directly associated with epilepsy with temporal and frontal lobe epilepsy it is impossible to deny.  Before seeking psyciatric medications we want to be sure that the epilepsy is controlled.  To that end, we are increasing the dose of his current epileptic medication over a few weeks. Then, we will go in for a 48 hour EEG to see what kinds of epileptic activity we are still getting. Calvin's first EEG last summer had a lot of epileptic activity.  A seizure is an over active neuron pathway and seizures can happen without being seen from the outside. We only see a seizure if it involves movement of a body part we can see. With Calvin we suspect he is having sub- clinical seizures contributing to his wild behavior and mood swings.

Some reading on Temporal lobe epilepsy:

1. Partial Seizures (SPS) involve small areas of the temporal lobe such as the amygdala or the hippocampus. The term "simple" means that consciousness is not altered. In temporal lobe epilepsy SPS usually only cause sensations. These sensations may be mnestic such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity), a specific single or set of memories, or amnesia. The sensations may be auditory such as a sound or tune, gustatory such as a taste, or olfactory such as a smell that is not physically present. Sensations can also be visual, involve feelings on the skin or in the internal organs. The latter feelings may seem to move over the body. Dysphoric or euphoric feelings, fear, anger, and other sensations can also occur during SPS. Often, it is hard for persons with SPS of TLE to describe the feeling. SPS are often called "auras" by lay persons who mistake them for a warning sign of a subsequent seizure. In fact, they are actual seizures in and of themselves. Persons experiencing only SPS may not recognize what they are or seek medical advice about them. SPS may or may not progress to the seizure types listed below.
2. Simple Partial Seziures
3. Complex Generalized Clonic Tonic Seizures

(calvin has had #'s 1 and 2. I underlined the part that he seems to have problems with. Possible sub clinical seizures or auras causing major rage.)

Personality

The effect of temporal lobe epilepsy on personality is a historical observation dating back to the 1800’s. Historical psychologists such as Sigmund Freud stated, “We know that epilepsy produces these remarkable changes in the personality."[1] Personality change in temporal lobe epilepsy is seen as a chronic syndrome. It is classified as a chronic syndrome when symptoms from a particular disorder persist for a minimum of 3 months. Personality and behavioral changes can be a result of the seizures from temporal lobe epilepsy. Norman Geschwind [2] suggested that a reason for this personality change could be the location in the brain where the syndrome takes place. Geschwind article stated, “It’s the location of the lesions producing temporal lobe epilepsy. These lesions are characteristically on the surface of the temporal lobe.[3]” Furthermore, “These lesions lie directly in structures with pathways into the parts of the brain that are involved in emotional behavior."[4]”Emotional behavior in this regards can be seen as actions that contributes to an individual’s personality who has temporal lobe epilepsy.

These quotes are from wikipedia but Dave and I have both done a lot of searching in the literature to read these papers and they are summarized well here.

The temporal lobe is home to the amygdala - the part of the brain considered to process emotions and espeically anger and agression. Also, present is the hippocampus which is also part of the lymbic system and involved with creating memories.    I recently finished a college course on the biology of human behavior and spent a lot of hours learning about the different parts of the brain. As I listened to the lectures I could see very clearly how Calivn's problems are very attributable to the part of the brain where his epilepsy and damage are located. It was very informative but sort of sad to hear.

Anyway, if the EEG shows a lot of active epilepsy still going on I assume the dr. will add a second medicine or increase his current medicine to help control the epilepsy. If not, we will assume the epilepsy is mostly controlled and look to another medication for help and probably consult with a neuropsychiatrist.  Apparently the is one really good on town but I believe we'll have to pay out of pocket to see him.

The EEG will be a Mon-Wed. Calvin will get to miss school and sit in the hospital for 3 days watching TV, playing video games and eating hospital food. He is actually super excited!  Of course the girls are way jealous!  Luckily Dave has some flexibility in his schedule so he can go with Calvin on this little adventure in May.

longest day ever

Today we went to the opthomologist to have Calvin's eyes exam for the year done. We could have gone to he optician who gives Calvin his contacts but our neurologist wanted us to see O'Halloran to check some concern he had with eye muscle movement.

The appointment did not go as I thought it would. It ended up being on of the most stressful days of my life and I was only expecting a typical eye exam.

First of all, Calvin's vision was checked and was found to be 20/50 in his right eye with the contact on and 20/20 in his left. He has lost one line of vision since his appointment a  year ago. The best his corrected vision has ever been is 20/40.  It is such a bummer after all those years of patching, drops and suffering to make backwards progress. Dr. O'Halloran wants us to start using eye drops again, once every 3 days to strengthen the rt eye. After the appointment when I told Calvin about the eye drops, when he heard it was the left eye he said, "but that is the eye I can see with." Poor sweetie has obviously forgotten what it is like to do drops. It is such torture to make his left eye blurry when it is his dominant eye. We will definitely not start those for a couple of weeks after a few other appts and spring break.

Anyway, then I asked O'Halloran to check the eye muscles. He noticed that there was a little weakness in the rt. eye movement on the periphery. Also, he noticed that Calvin has a droopy lower eye lid. All of these are consistent with a third nerve palsy and even though he has only dropped one line, a decrease in vision along with these other symptoms added to the concern.  Dr. O'Halloran asked to call Dave to explain what he saw (never a good sign) and told him that Calvin has pupil-sparing third nerve palsy and wanted to order a MRI to rule out any cause (such as tumor or bleed) within a day or two (also not a good sign).  He sent us home without doing the eye exam saying he would want to wait for the MRI before doing the exam (also not a good sign). 

Being married to a neurosurgeon has advantages and disadvantages. I know a little more than the average person about the types of patients the neurosurgeon sees and why he sees them. It is quite common for patients to present with a cranial nerve problem and find a tumor. I was sure we'd find a tumor. I cried all the way home from dropping of Calvin at school and had visions of surgery, chemo, and a funeral.  It was terrible.

We called to schedule the MRI and got a time for 8pm. It was an awake appt, meaning no sedative or general anaesthesia would be used. Calvin is either the most sweet or most difficult patient they see so it is never safe to assume a 30 minute brain MRI will be possible, but we decided to give it a shot since it was the same day and we could easily try again if it didn't work without wasting much time. We rented Wreck-it-Ralph for him to watch in the machine and moved ahead.  Dave told him about the appointment and how he would get to watch the movie with special goggles in the machine and he was super excited about it. The girls were super jealous which added to Calvin's excitement! :)

The MRI went well. Calvin was an angel. He even had to get in IV for the contrast and was totally fine with it. He got to watch the movie. Fortunately I had picked up a  new bey wheel toy for a dr. appt we have next week but was able to send it with him tonight to help him be motivated to be perfect. After the procedure he also got a happy meal from McDonalds.

The tech let Dave look at the images when the scan was done. There is no tumor.  The images look very similar, if not perfectly the same as the images from last summer.  Dave said there might be a blood vessel that is pressing against the 3rd nerve but it is hard to tell on the MRI. We will wait for the radiologist read. I am not perfectly unconcerned about it as I still worry about a problem with the vasculature.

Dave and Calvin got home at 10pm. Of course darling Clare was awake to greet them and ask about Calvin's new toy, treats and battle wounds! Calvin was in a great mood and I am proud of him for doing so well today.

As often happens, we have  a cluster of dr. appts this month. Two today, one tomorrow and one next week as well.  Now we also need to add another optho appt to get the eye exam done.  Dr's are funny when they tell you to schedule things in a week or two b/c they never have openings. I am guessing it will be in 2 months that we are finally able to see him. Though I'd bet $ that he'll call Dave with the MRI results as soon as he sees the radiologist. Darn HIPPA laws prevent Dave from looking up the records himself.

Inspiring

For a long while I have wanted to be connected with a support group of parents with kids who have special needs. I have been reluctant to join a group becuase previously I hadn't known exactly where we could fit in. ADHD wasn't exactly right, autism wasn't a good fit either even though that is probably what we're most similiar to.    And, I am also always trying to find things to help Calvin - lessons, therapy, friends, activities, etc. that will help him feel positivie and a part of things in a good way.

I was recently given the idea from a friend to contact the Epilepsy Foundation of San Diego. When I contacted them a wonderful woman called to talk to me about Calvin. I was very impressed with her kindness, knowledge and helpfulness. She knew exactly what kind of epilepsy Calvin had and where in the brain it was located based on my discription of his seizures and behavior.  It was such  a relief to have someone completely understand my life.  She gave me a few tips about how to change our medication to try and come to a level of more stability and let us to the appropriate group in the epilepsy foundation that could provide additional support.

The Epilepsy Foundation has an amazing program for families who have children with epilepsy.   The one that fits us best is a once a month meeting for children with epilepsy and siblings and parents in part of the Expressive Arts Program. The meeting includes dinner followed by Expressive Arts Thearapy for the children (epilepsy kids and siblings of all ages) in one room while the adults meet in another room to discuss issues pertaining to life with epilepsy.  It is such a great set-up since everyone in the family is involved and the kids are super thrilled with the art program. 

The adult discussion is largely un-structured. Thre is a moderator for the disussion (a parent of a child who is now 14 years old) and it sounds like sometimes there are guest speakers as well, but it is a chance for paretns to ask questions and talk about medicaion, school, behavior, seizures, doctors, etc. with other families who are in the same boat.   What is the boat? The boat is so much more than epilepsy. It is feeling panic, desperation, helpless and hopeless at times. It is not knowing where to go and what to do next to help your child. It is wondering what the future will bring. It is wondering how to pay for all the help you need and first wondering where to find that help.  Even though every case is different and every family has a unique situation, we are all working hard to find the best path for our child and hoping for a good outcome.

Last night I went to a beautiful concert at Symphony Hall. The guest singer was Brian Stokes Mitchell, acclaimed baritone.  My favorite part of the concert was his closer, The Impossible Dream.  Here is a recording of him singing as a guest singer with the Mormon Tabernacle Choir.  The lyrics are below.


As I listened to this song, I thought of this journey as a parent of a special needs child. In many ways it is living the impossible dream. All parents dream of having happy, healthy children, even parents who have sick or handicapped kids. As a parent I don't think we can help dreaming of the best even when it isn't possible. We fight, we love, we try, we reach for the stars and we are "willing to march into Hell for Heavenly cause." What cause is greater than parenting?  I love the ending ... "And I know if I'll only be true to this glorious quest that my heart will lie peaceful and calm when I'm laid to my rest."


Lyrics to The Impossible Dream

To dream ... the impossible dream ...
To fight ... the unbeatable foe ...
To bear ... with unbearable sorrow ...
To run ... where the brave dare not go ...
To right ... the unrightable wrong ...
To love ... pure and chaste from afar ...
To try ... when your arms are too weary ...
To reach ... the unreachable star ...

This is my quest, to follow that star ...
No matter how hopeless, no matter how far ...
To fight for the right, without question or pause ...
To be willing to march into Hell, for a Heavenly cause ...

And I know if I'll only be true, to this glorious quest,
That my heart will lie peaceful and calm,
when I'm laid to my rest ...
And the world will be better for this:
That one man, scorned and covered with scars,
Still strove, with his last ounce of courage,
To reach ... the unreachable star ...

meeting with epilepsy neruologist

We had our first appointment with Dr. Nespeca this week.  Dave has known him for a few years  and has always spoken very highly of him. Dr. nespeca is a pediatric neurologist and an epilepsy specialist.  We feel very fortunate to get to have him as our dr. for Calvin at this time.

At our appointment he took a very long and detailed medical history of Calvin.  Of course,  he wanted to know every particular about the two seizures we saw and about the pallid episodes Calvin used to have frequently.  He was also concerned about all other medical issues Calvin has had.  He conducted a thorough neuro exam and Calvin was completely cooperative for this which is sort of amazing.  One interesting thing that we saw in the neuro exam is that Calvin has double vision in his right peripheral field.  Sad. The poor boy can never get a break!  We have been seeing a opthomologist for life and we have always known he had some issues with the right eye tracking (strabismus) but I had never known he had double vision. I knew he couldn't see 3D. Anyway, he suggested we go back to the ophthalmologist and get his thoughts on the issue.  No wonder this boy can't play sports! He doesn't have depth perception or peripheral vision! 

Dr. Nespeca showed us the MRI. Dave had seen it in the OR with Dr. Levy (neurosurgeon at Children's)  but I had never seen it.  He showed me the flare they had seen and it really is a SUBTLE finding, but it is there. With a little help, even I can see it.

Calvin had started on the anti epileptic medication in June but was on a very low dose. Dr. Nespeca raised the dose to a more appropriate dosage for Calvin's weight. It will take a few weeks to work up to the therapeutic dose. We will see at that time if it makes any difference in the behavior.

Dr. said that all of the kids who have epilepsy have problems with learning and behavior but the severity varies. Given Calvin's difficulties and placement in school it is clear that he is on the pretty extreme side of the spectrum. Most kids are able to be mainstream or in the district special ed placements whereas calvin has moved to private special ed placement which is more severe.

One interesting thing was in the reading of the EEG. When we went to the EEG Calvin was initially not cooperative. He sat with the electrodes all over his head for a long while but would not go to sleep as he was supposed to. He was agitated and upset and eventually pulled all of the electrodes off of his head.  He went to the bathroom and cooled off and then came back to the exam and was perfectly cooperative.  He was calm and relaxed, eventually fell asleep and then woke up and let the tech complete the exam (shine lights on him, blow a pinwheel, etc).  Anyway, on the initial reading that the neurologist did (not Dr. Nespeca) she reported several spikes in the temporal lobe and some spikes in the frontal lobe.  Dr. Nespeca said that he had looked over the test himself and didn't see any spikes in the frontal lobe, but had seen some activity in the temporal lobe. At our appointment he was going off of his memory of having seen the test a month earlier so he promised that he'd go back and look at the test once more to be sure that he wasn't missing anything.

Later in the evening Dr. Nespeca called Dave on his cell phone to discuss what he had found on his second pass over the EEG. Apparently Dr. Nespeca had only previously looked at the second part of the EEG (where CAlvin was cooperative/sleeping) whereas the other dr. who officially read the EEG had only looked at the first part of the EEG (where Calvin was uncooperative and agitated).   A careful look at both parts of the EEG accounted for the discrepancy between the Dr.'s interpretation of the EEG.  Dr. Nespeca said that in the first portion of the EEG there were a lot of temporal lobe spikes and some frontal lobe spikes as well. The frontal lobe spikes were always preceded by a temporal lobe spike.  During the second portion of the test there were some temporal lobe spikes.

There are some things that are really interesting about this result. #1. Usually the most epileptic activity is seen when falling asleep and  just waking up. That is why the test is sleep deprived. It is unusual to see so much activity while fully awake. #2. It is interesting/unusual that Calvin was having so much activity while agitated.  Does this mean that he has a lot of epileptic activity when he is angry? Does he have "rage seizures?"

The temporal lobe is very near some important structures regulating mood, aggression, self control and of course the frontal lobe contributes to personality as well.  A "temporal lobe epilepsy personality" is well documented as a person with mood problems. 

In epileptic cases, it is actually rare to find definitive answers on the EEG and MRI (less than 1% of epileptic patients). I feel lucky that we do have findings since it helps us to know we are for sure starting to understand what makes Calvin the way he is.  The brain is a mystery. There are few black and white answers. However, with the compelling evidence on the EEG and MRI, we are safe to assume that Calvin has an epileptic brain, his learning and behavior problems are directly related to his epilepsy.

We go back to Dr. Nespeca in 3 months.  We call if we see any other seizures in the meantime.  CAlvin is not suppsed to climb trees or swim without close supervision and he should always wear a helmet on a bike.

Radiologist MRI report and epilepsy

First, the radiologist report:

The paranasal sinuses and mastoid air cells are clear.

Impression:  Subtle T2/FLAIR prolongation of the right hippocampus with questionable decrease in size of the mid  posterior body relative to the left. Findings are concerning for recent seizure or early mesial temporal sclerosis.

Asymmetry of the left cranial vault and postsurgical change status post known repair of the craniosynostosis.

This is exactly what dave told me he saw a week ago but it wasn't real to me until I actually saw it in writing.
What does this mean? It means Calvin has temporal lobe epilepsy (TLE).  It means Calvin has been having seizures for a long time. It means the repeated seizures have caused scaring in his brain.  I'm sure it means so much more that I have yet to learn.  I have been reading quite a bit about epilepsy this week.

I have experienced a wide range of emotions since learning this. First, I thought, ta da, we found the missing piece to the puzzle and FINALLY know what is going on with our boy. It is not just that he is hyperactive, defiant, difficult. It's not just that I'm a bad parent and can't teach the child right and wrong. It is not just that he isn't sleeping well. There is a real physical cause for all of his problems.  It is sort of nice to know that all of my persistence and begging dr's to run tests on him to try and find a physical cause for his problems was not  just a crazy mother looking for an excuse. I have always known there was an underlying physical cause that at least contributed to his struggles.  That was my first reaction.  My second was of sadness. Now that we know the cause of his problems, it is sad to know that he has been experiencing seizures for years and they have been causing serious damage to his brain.  I have to grieve the loss of my child yet again. What would Calvin be like if he did not have these seizures going on in his head preventing him from learning as he should and causing such out of control emotions?  Who is the real Calvin?   And lastly, most of all I feel so blessed. We are lucky to know what Calvin has. We're lucky he's in a great school. We are so lucky we have healthy children. Our problems are so small compared to others. 

Some quotes from one of Dave's Neurosurgery book.

Seizures are defined as an alteration of behavior, movement, or sensation that results from an abnormal and excessive discharge from a group of neurones.

Epilepsy is defined as two or more unprovoked seizures.

Incidence of epilepsy during childhood is 1%.

The impact of repetitive seizures and anti epileptic medications can present noxious stimuli at critical developmental windows....although the vast majority of children with epilepsy eventually enter into remission, they remain at a substantially increased risk of not meeting their educational, vocational, and social goals.

Mesial temporal sclerosis (MTS) is the most common pathology in adults undergoing epilepsy surgery. It is rarely seen in a child less than 10 years of age.

Children with TLE spend a significant portion of their "awake" time with an altered percetion of surrounding stimuli. The effect of this intrusion into the child's normal developmental schema blurs and therefore affects the normal processing of information necessary for the normal functional development for cognition and other neuropsychological abilities. Numerous studies using full-range IQ scoring have shown that intellectual function is depressed in these children and many have debilitating behavioral problems that include temper tantrums, aggression, attention deficit disorders, and hyperactive states... 

Children with imaging abnormalities rarely "outgrow" their seizures.

Important disclaimer for the following quotes -these came from a NeuroSURGICAL book so of course the point of view is slanted toward surgery. We haven't been to the neurologist yet to find out if he would even consider surgery for Calvin.  From my reading it seems that surgery is recommended for people who have seizures which can't be controlled by medication 

Early surgery in children with MTS leads to an overall improved chance of seizure-free state an dimporved outcome with regard to cognitive and neuropsychological measures.

If a patient has had seizures for less than a year and is found to have a lesion, he or she can be treated for the lesion alone with excision with a high likelihood of curing the seizures. If the seizures have been occurring for more than a year, in children with lesions, then they are less likely to be cured with lesional resection alone

Surgery remains superior to continued medical therapy with regard to outcome, morbidity and mortality in children with intractable temporal lobe epilepsy (INTRACTABLE means very difficult to control with medication).


Temporal lobe epilepsy articles:
http://www.hindawi.com/journals/ert/2012/849540/#B8
http://www.epires-journal.com/article/S0920-1211(04)00120-2/abstract


We still haven't been to the neurologist.  Our appt is 3 weeks away. We have so many questions.

Results

Today we got a call from the neurologist with the EEG results. It looks like Calvin does not have the Benign Rolandic Epilepsy as we had previously thought and hoped.  He does have some kind of epilepsy however.  The EEG showed epileptic activity awake and asleep but the pattern and point of origin was different than what would be expected in Benign rolandic epilepsy.  With this news, the neurologist recommended we start Calvin on an anti-epileptic medication today and that we schedule an MRI to look for a possible physical cause for the seizures such as a tumor or other anatomical abnormality.   At this point I am still not too worried, as long as it doesn't develp into something more serious we are fine with this result. The medication recommended (oxcarbazepine) will not have too many side effects and it is possible it might even help us with other aspects of Calvin's life since it also known to be a mood stabilizer (yes please!).

MRI will most likely be in a week or two and then we will meet with the epileptic specialist on Aug 6th to hopefully find out exactly what type of epilepsy Calvin has and what to expect now and in the future.

Brain Lab Experience

The sleep deprived brain lab went well.

In preparation for the test, Dave and Clare and Calvin went out to run a couple of errands around 9pm (we decided to let Clare stay up late too to help keep Calvin company). The kids were so slap happy that when we put them to bed at 10:45, the still bounced off the walls for an hour.

Dave set his alarm and woke up Calvin at 3:45. They ate breakfast and then watched a movie. At around 6 I got up and Dave went back to bed for a nap. By the time I got up Calvin was so tired I couldn't let him sit down. He was quite pleasant and thought it was funny to say, "oh, I'm just going to go lay down and have a quick nap....."  

We dropped off the girls with babysitters and headed for the hospital. It was a full time job for me to keep Calvin awake in the car!  

AFter checking in and waiting, Calvin was brought to a quiet corner of the hospital. He laid down on a bed while the tech connected about 20 electrodes to his head. He was very patient.  He was starting to fall asleep while he was holding still so I had to work to keep him awake. I think this irritated him.  Once he was all hooked up the tech left  the room and turned out the lights and asked Calvin to close his eyes.  The hope is that he would fall asleep so that the Dr. could see him go into sleep and then come out of sleep.  Calvin was not super cooperative and didn't want to close his eyes. Dave sat and talked with him to help him stay calm but he wouldn't rest his eyes!  He said he needed to go to the bathroom.  When we asked the tech to help us get him to the bathroom she came to help him get up with all of his wires attached but Calvin ripped them all off.

After going to the bathroom a new (more experienced) girl named Jen took over.  The first tec, Venus, had told me it was only her 2nd day on the job. She had previously worked almost 20 years for the navy so though she knew what she was doing she didn't know how to work with kids.  It was very kind of Jen to tell us she would re-set up all the electrodes. She was able to do so in about 5-10 minutes. (It had taken the first girl a good 20-30.  She spoke to Calvin in a sweet and enthusiastic voice and he responded well to her. She told him that after she got him hooked up he would need to close his eyes for a few minutes so the Dr. could look at his brain waves.  We also increased our bribe from in-n-out to a new lego set.  Calvin was obedient to her and afters a few minutes of keeping his eyes closed he fell asleep!  

The tech let Calvin sleep for about 10 minutes and then came in the room to wake him up. He was in a pretty good mood when he woke up and was cooperative for the rest of the test. He was asked to blow on a pinwheel for 3 minutes to hyperventilate him. Then she put a strobe light directly over his face and he looked into the light while it fired. Sometimes he was supposed to have his eyes closed when the light fired.

The rest of our day was the same as always -- we swam with some friends and then Calvin had scouts in the evening.

The results of the EEG will be read by a neurologist within a couple of days and a report will be sent to our Primary Care DR. I am assuming he will call us when he gets those.  If we are lucky, the EEG will be a classic case of benign rolandic epilepsy which has a distinct pattern on the EEG.  However, finding epilepsy on an EEG is a tricky thing. Dave has had patients with very serious seizure disorders come into the hospital and stay for days being monitored round the clock and nothing helpful shows up on the EEG. Dave says he has even taken off the top of the skull to place electrodes directly on the brain to try and find seizures for some desperate patients.  That is why I say, if we are lucky, we will see something on this first test which will tell us more information.

I scheduled an appointment with the neurologist at the end of July so that we can discuss what to do. 

Poor Dave who was pretty sleep deprived himself got paged last night as we were going to bed and had to go in!  He didn't get home 'til around 3:30.  

And, Mr. Calvin after having 2 days at home didn't want to go to school today. I got him on the bus by buying him a new app for the kindle fire, figuring $1 for a new app is cheaper than the 10 or whatever it would cost in gas if I have to drive him down to school. Calvin got on the bus at 7:20 but the bus brought him back home at 7:40 because he was being too difficult to control on the bus.  So, it's time to pack up and take Calvin to school and then stop at dog beach! It is a beautiful summer day! 

Sleep Deprived Brain Lab

Tomorrow morning Calvin has a brain lab (EEG). He is supposed to be sleep deprived so our instructions are to keep him up 'til 11pm and then wake him at 3am for the day. We are going to let him sleep 'til 4 since he will still be plenty tired for his appointment at 10:15. Once he gets to the appointment they will hook him up to the electrodes and then put him in a dark room to sleep.  They want to watch him go to sleep and wake up out of sleep.

Dave and I are taking shifts. Dave will get up at 4am with him and then I will wake up at 6 so Dave can take a nap from 6-9am before we leave. I am interested to see how the day goes and will hopefully post again tomorrow night after it is over.

something new

Calvin had a seizure this morning at around 6:30am. It was not a grand mal seizure of the type that you see on TV. It was a small seizure about 30 seconds. He lost facial control and his left arm was twitching.  He was ashen white and though conscious, totally unresponsive and unaware of what was going on around him. It was kind of crazy to watch. Even though it was not dramatic, it was kind of scary to know that his brain was going haywire.


After the seizure Calvin came to we asked him if he was okay and he said yes and then went right back to sleep. Dave says people often sleep after seizures since it is such tiring brain activity.


We had thought we should take him to the ER, like any parent would after witnessing their kid have a seizure but Dave thought that before we went in, he should give the neurology resident on call a quick call to ask for advice (I knew being married to a DR. would help us at some point in life!) to ask him what to do. The neurology resident said that  he would call andl schedule an EEG and an appointment with one of the epilipsy specialists in clinic. Since it wasn't a large or dangerous seizure there is no need to go to the ER as there is nothing they would do for him there besides tell us to follow up in the outpatient neurology clinic. Based on the description of the seizure, the time of day (6:15 am as calvin was waking up), and Calvin's age we are told it is most likely Benign Rolandic Epilepsy. 

  http://www.webmd.com/epilepsy/what-is-benign-rolandic-epilepsy

Further testing will confirm or refute this idea and then we will see where to go from there.

One of the tender mercies about this morning is that Dave was with me when Calvin had the seizure. Most mornings I get up and help Calvin get ready for school. Dave either sleeps in, or gets up and goes to basketball, or gets up and goes right to work downstairs.  This morning he got up right around 6:30. Calvin was sleeping on the couch upstairs (he very often gets up in the night and then falls back asleep on the couch upstairs so that was not unusual). I had gotten up at 6:20 and sat next to Calvin reading for a few minutes waiting to see if he'd wake up on his own or if I'd need to wake him up. Then around 6:30 dave came walking into the room and sat down next to us and we were both literally staring at Calvin when he began to stir a bit, sat up part way and then began seizing within just a minute of dave coming into the room and sitting down. It was good to have Dave's medical eyes on him observing him as a Dr. so that he could report what had happened.

This is not Calvin's first seizure, though it is the first one that we recognized as a seizure. About two weeks ago I had a similar experience with Calvin. I went in to wake up Calvin and he started waking up. I asked him something and then he tried to respond but couldn't talk or move for a few seconds. That time it was probably 10 seconds or less and there was no twitching that I observed. I mentioned it to dave and he said it could have been a seizure but at that time he wasn't too concerned. Looking back now I know with 100% certainty that it was a seizure.

There are some other situations that we've had over the last year or so, maybe even two years where Calvin has had something weird going on. I am still not sure if these episodes were seizures or not. I will be interested to see what the Dr. says.  Sometimes Calvin will turn really white, and have trouble talking. He will look really weird and then he'll say, "I'm tired" and lay down and go to sleep. This has happened at home, it has happened when we are out and about. I have learned to recognize it and it is the same every time.  When Calvin does go to sleep, sometimes it is 10 minutes and other times it is an hour. I wonder if these have been little mini seizures he has been having. They have occurred infrequently and irregularly at the most twice in a month but sometimes being spaced out over a few months. I have asked our regular family doc, the behavioral/developmental pediatrician, autism doc, psychologist and psychiatrist about this and everyone of them said nothing (but I'm assuming thought I was crazy) when I described this to them in various appointments over the last year. It has been a medical mystery to me. Like I said, I still don't know if seizures are the answer but we will see if the neurologist thinks so.