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.

one month contact!

Today Calvin finally reached his goal of wearing his contact for one month as he is supposed to do. We started contacts in November and every month he either accidentally lost or took it out somewhere or purposely took it out and ruined it when he was mad.

I am proud of him for doing a better job with it now!

He is trying to be responsible with his contacts so he can earn his Wii back. Dave took it from him a few months ago as a consequence for being so irresponsible and ungrateful for his contacts.

Yay for Calvin!

Also, a month or two ago we met with the opthomologist. We have been seeing the opthomologist 4-6 times/year for the last 6 years. At this appointment he told us that we don't need to see him anymore unless there is a problem. We can follow up with the optician who fits us for his contacts.   It will be nice not to have these appointments any more. (Though I will miss our opthomologist. He was my favorite of all of our Dr's.)  And, the timing couldn't be better. With all this new seizure stuff going on we will probably have plenty of other dr. appointments and things to worry about.

Calvin's vision now is 20/20 in one eye and 20/40 (corrected) in the other. It is probably as good as it will get and I think it is a result we can live with. It is certainly an improvement from where we started which is 20/80.

waiting

This week Calvin had his MRI. Things went very well. He had to be fasted and ready for general anesthesia, which is always kind of a pain for a kid who loves to eat!  He is old enough, however, to understand the importance of the dr's instructions and to go without even if it is uncomfortable. Also, we were lucky enough to get the 8:30am exam time so he only had to skip early morning breakfast.

Calvin did a good job at his appointment.  After the MRI while I was waiting with Calvin in post anesthesia recovery, Dave slipped into the OR to chit chat with the neurosurgeon operating (check the results of the MRI under someone else s log-in since he isn't technically allowed to check Calvin's chart).

The MRI looked fine, but there was a subtle finding in the temporal lobe. Dave said it could be dismissed as nothing by the neurologist or could possibly be the focus and what the neurologist will say is a possible cause for the epilepsy. Dave is not an epilepsy expert so he can't really know with certainty what exactly Calvin will be diagnosed with and though we know the EEG showed epileptic activity, we still don't know in more detail exactly what was seen in that test.

We don't see the epileptic specialist for another month so for now we are just waiting to have all of our questions answered in August. We feel grateful that we saw the seizures that we did and were able to get all of the testing done so quickly. We are hopeful that the medication Calvin is on will help control them for now.

brain MRI scheduled

MRI with and without contrast is next week.  The exam is 45 minutes in length and general anestesia will be needed. We got a nice and early time of 8:30am which is the best since Calvin has to be fasted. We report at 6:30am!!  I think I might just send Dave with him in the early AM and then take off a bit later when I have a chance to get the girls up and out the door. 

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.