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.

depressing and hopeful

Depressing
Today I finally sat down and organized all of our paperwork - IEPs and evaluations - that I've had in various files and floating around the house for the last couple of years.  I put everything in a 3 inch 3 ring binder with categories such as: evaluations/2011/2012/manifestation determination/report cards. It was heartbreaking to sit down and see it all in one place. We went from Kindergarten report card of delightful little person with almost all 4's (working above standard) to daily report cards with tallies for each swear word, hit, kick, burp, etc and academics that are falling off grade level.  It was so sad I was not even hungry for lunch when I was done. It took almost two hours and completely filled the notebook.  One thing I realized I am so thankful for with Calvin's new school is that they do NOT send home daily behavior reports. There is really no benefit in giving me a daily update on every little bad thing that happens. They do have to keep track so they can report if things are improving or not, but I don't see it every day. I get  a call if there is a restraint or something else I NEED to know, otherwise we just discuss things at our meetings to see where things need improvement.

Hopeful
A few weeks ago I was out walking the dog and stopped to talk to a girl (about my age) who was standing in her driveway with her little one year old baby. I stopped to say hi since she was living in a house I knew had recently sold and wanted to say hi and see where they came from and if they had other kids, etc. After about one minute of talking she mentioned that she is a therapist/coach for autistic families. I told her I had a special needs child with similar needs to autistic kids and asked if she would mind if I stopped by another time to ask her a few questions so that she could direct me to groups or individuals who could help me in my situation. At the time I saw her I had two kids and the dog and was in a hurry to get back to school to pick up Clare. Anyway, we met this week and she did give me some good ideas of some services she sees her clients use.  It was helpful talking to her to obtain this information. I was completely flabbergasted when she next offered to work with our family at the cost of our copay ($15/visit) until we are accepted with one of the other groups I am applying for. The wait list is months-year since most families use services long term. I am still shocked by this offer. Most of these types of professionals charge $60-$100/hour and that is why I have never found one I could use. I simply can't afford to pay someone what would be close to $10K/year.  The reason she is offering to work for so little is that when she had her baby she pulled her self out of the full time professional world only maintaining a couple of her long term clients. However, she loves her work and would love to help our family. Since we live down the street from her it is pretty convenient and ideal for her to drop in and help us out once a week. I am hopeful she will be able to help us, even if it is in some small way. She is the reason I was getting the binder together so that she can see our history and get to know us on paper before she starts coming over. I should have gotten a little more organized long ago but I didn't know how. It was her suggestion to get the binder and file by date and category.

Also, I am trying once again to get Calvin occupational therapy. Over a year ago when he was evaluated by the autism department and the behavioral and developmental pediatrician they both recommended we get him in OT. I took him to an evaluation but he was not cooperative and the insurance denied our claim so I gave up.  I am trying again with a new group (one used to autistic kids instead of one that works with injured kids -- huge difference) and also thanks to a few phone calls, I know better how to approach the insurance company so they'll pay for it.

Also, I found several sport teams that work with special needs kids, at least one for each major sport - baseball, basketball, soccer.  It is good to know these options are out there and I am sure over the years we will give them a try.