Epileptologist

Dr. O'Connor is the name of our new Epileptologist and she taught us more in our first meeting than our previous doctor taught us in an entire year!

1) The EEG demonstrated that Sophie's seizures have transitioned from Absence to Focal (stemming from one or two spots on the brain rather than all over and a different level of electrical spike from my understanding).  These are only happening when she sleeps, but it is unclear if she might be having them steadily throughout the night or just randomly here or there.

2) Having Absence Seizures puts her at a much higher risk for having a Tonic Clonic (Grand Mal or Big, Scary Seizure).  We should have an emergency medicine on hand for if this should happen, which has now been prescribed.  Probably something we should have known.  We were warned again not to let her swim alone or bathe alone just in case.

3) The Neuro Psych evaluation is way overdue.  She was surprised that there is not already an IEP in place, and does not believe that a 504 plan will provide sufficient adaptation.  She is hopeful that then Neuro Psych assessment will come with IEP suggestions that can be sent directly to the school.  I have to admit I was overwhelmed when she asked if Sophie was "still in a standard classroom".

4)  Sophie was overdue for having her Depakote levels checked and should also be having blood counts done.  This led to a trip to the lab last Saturday for four vials of blood to be drawn (the phlebotomist actually verified that she could take all the blood required based on Sophie's weight).  Sophie cried some, but it was worth it for the McD's hash-browns she earned as a reward!

5) We cannot even begin to consider weaning her off the Depakote until she is seizure free for two years.  This news did burst our bubble because we've been having her see a Chiropractor with hope that it would help with the Epilepsy and that perhaps at some point we could lower her medication dose.  However, no regrets on the Chiro because her immune system has been SO much better this year than last.  She has yet to be sent home from school and her asthma is much better controlled--both of these have been huge steps forward.

Since the appointment, the results of the blood work have come back.  Her Depakote levels were therapeutic which was good to hear, but her platelets are low.  Apparently this is a common side effect of Depakote (which perhaps had not been monitored by Sophie's previous neurologist), so although she's still having seizure activity while sleeping, we are lowering her Depakote dose in the evening.  She is now getting 250 in the morning and 250 in the evening, 125 mg less than before. We have two weeks on this new dose to monitor her for seizure activity and then redo the labs to look for improvement.

In the mean time her Neuro Psych eval is scheduled for early November and the school observations should be taking place in the next week.  I'll challenge myself to update as things develop.  Our next major step will be an overnight EEG at Lurie's in Chicago but that might not be until December or January as we work at taking things one step at a time.  Thanks for your support and care.

October

On October 2nd, we awoke bright and early at 3:00 am to begin our EEG day.  Sophie was such a trouper, we started with cartoons and cereal, then on to Walmart at 4:00, Denny's at 5:00, and back home at 6:00 to meet Joe and Wendi for the morning.  After taking Wendi to school, we went to the hospital for the test.  The test went well, and she went right to sleep when she was supposed to.  At the end of it, the tech (who also did her last EEG) noted that it appeared the Depakote was doing what it was supposed to and that although she did see some activity, it was nothing like last time--hope at last.

A few days later the nurse from the neurologist's office called to let us know, "There was ongoing electrical activity in her brain, but it was not absence seizures so her medication would not be changed."  Huh?  Unfortunately Sophie's neurologist was on vacation and his partner could not answer any of our questions.  The response to my many phone calls and questions was that he hadn't reviewed her previous EEG and therefore could not judge how/what changed.  (Could he not look it up?)  After a great deal of phone tag, the partner agreed to order a Neuro Psych consult based on the information from Sophie's school regarding her regression academically.

It is important to note that there are a number of "co-morbid disorders" associated with epilepsy.  This means illnesses that are commonly present when a person has epilepsy.  Some are ADHD, anxiety, and mood disorders; the idea was that perhaps these were what was causing the issues at school since they believed it was not the seizures.

At the same time as the Neuro Psych evaluation was finally ordered, I began my search for a new Neurologist who would be more attentive to Sophie's full life experience rather than just caring if we "see" seizures.  I quickly discovered that Lurie Children's Hospital has an Epilepsy Center with Epileptologists who only work with this illness, school liaisons to help with 504 plans and IEPs, and a holistic approach.  We were able to get an appointment rather quickly at a satellite clinic in Gurnee Mills, and things have truly taken off from there.

September

Over the past couple months, it has felt as if we've started over on this journey.  Here is an overdue recap of September.

A couple of weeks after school began, I was contacted by Sophie's teacher to talk about new concerns at school.  In essence, she has made huge strides emotionally and socially but academically it has been a different story.  Her teacher was concerned that Sophie has begun falling quite behind in school, in fact, information that she knew before (and that we believe she still knows) had begun to challenge her.  It is as if she has become unable at times to access letters, words, numbers that we know are there.  Her teacher noted that it is clear she is trying, but for some reason can no longer find the answers.  This concern led us back to Sophie's neurologist who ordered an EEG after a great deal of phone tag.

Our worry was that although we are not observing seizures regularly during the day, perhaps she was having them at night and we just weren't able to see them. When she had her original EEG, they had reported that her sleep cycle was when her seizures were most active, but that we only worry about seizures when they can be dangerous or disruptive (walking down stairs, swimming, swinging from monkey bars, or trying to learn in school), and since her seizures haven't been disruptive or apparent while awake, her doctor hasn't worried.

However, although her seizures aren't disrupting her activity, we did think they were disrupting her sleep.  She has continued to have enormous mood swings (to which her neurologist always replied, "Well, Depakote is a mood stabilizer", offering no other suggestions, compassion, or understanding), and she continues to really need daily naps and to be exhausted after school.

Her neurologist's resistance to really care about her full life and whole person is what motivated us to begin considering a new doctor.  First, though there was an EEG to attend.