Seizure Control Options

Kerstin is back to seeing her neurologist every few months.  We had gotten up to annual appointments but with an increase in activity some time back, we had to see him more often.  The most recent follow up was last month, May.  As with all of her appointments and more specifically the neuro ones, we are equipped with notes as to what kind of seizures she has endured in between appointments.  The doctor and staff already knew about some of these episodes because they had been contacted to make them aware of the seriousness of her seizures. 

The May appointment lasted a bit longer than most.  There is no complaining about that fact because I would really be a little upset if he rushed in and out of the exam room.  We talked over things as they relate to Kerstin, seizure activity, weight gain, possible increase in medicines and even a possible new treatment or new med to add to regimen.  The treatment would be to maybe consider Vagus Nerve Stimulation therapy (VNS therapy).   What is VNS therapy?  "Vagus Nerve Stimulation (VNS) Therapy is a medical device proven to treat difficult-to-control seizures, also known as drug-resistant epilepsy. The device sends mild pulses through the vagus nerve to areas of the brain known to be associated with seizures" (VNS Therapy Overview)."

Until this appointment, I had never heard of VNS therapy an was unaware of the process of placement or the potential benefits. In the meantime, her neurologist wanted to add a new medicine to hopefully help with Kerstin's nocturnal and catamenial seizure activity. The new med, phenobarbital, to be given once daily at night/bedtime. The first thing noticed was that Kerstin was immediately sleeping better and through the night. She even started to sleep later into the next morning but one day when I was not home with her Kerstin slept well into the day, 11:30 a.m. and went to sleep again around 2:30 p.m. This scared me and my sister, who was keeping her for me that day. I called the neurologist and told the intake what was going on and the nurse immediately called back to calm my nerves some. There is an adjustment period to this medicine and it can cause a lot of drowsiness. I was told to watch her over that weekend but if she slept like that again to call immediately.

Over that weekend, I reached out to a friend to see whether her daughter was on this new med, if she knew someone who was and if she new any families who has VNS therapy. Her daughter is on a different med, one that Kerstin had been taken off of, she knew friends on phenobarbital and said at first they were completely drowsy and she knew friends on VNS and loved it. Now, back to the phenobarbital, Kerstin has continued taking it at night, the drowsiness comes and goes, for the most part she has been sleeping really well at night with very few exceptions.

Last month, I was able to get in on a caregiver chat with families that are using VNS therapy and those that have been given this option as an epilepsy treatment. There is another coming up soon, that I may attend. I have also been added to a Facebook caregivers, users and professionals group. VNS is a being highly praised as a way to treat seizures/epilepsy without the use of so many meds or high dosages of anti-epileptic medications and their long term side-effects.

So, where will this journey take us? I'm not even sure. I do know that there is a follow up with her neurologist in a few months and a possibility of a consultation with a neurosurgeon around the same time.

More to come...

VNS Therapy

Where the Journey has taken us...

     It has been a few months since I've posted last but, needless to say, we are still on a journey, new things to explore each day.  Since Kerstin's hospital stay for the video seizure study, she has continued to have at least one episode per month, which is better than the point she had gotten to.  Her neurologists have advised in the past that as long each of these seizures were not like a video of one of her seizures shared with them, they would not be too alarmed by her activity.  It seems as though seizures will be a part of our journey.  They don't want her too medicated that she is not very alert or aware; I don't want that for her either.  I will have you know that those days that she was in the EMU, there was no seizure activity of any kind, as soon as the two hour trip home was complete and she was all relaxed...seizure!  

     So, after that seizure study, came the end of the school year and Kerstin's time in middle school.  Off to high school!  After many years of ups and downs and hard fights of advocacy for inclusion, accessibility and much more with the local school system, I decided to start a private home-school for Kerstin!  Yes, we are on the journey of homeschooling.  The lessons are modified and truly catered to her, we are on her schedule.  After talking with a friend about homeschooling this past Spring, she made me realize that Kerstin's education didn't have to take place all day long in a classroom, especially not a "self-contained" setting.  We are about a month in and it has been fun for me to find great resources on Youtube and various other forms.  Kerstin has been enjoying the lessons except that one day, I decided to take Science outside...not a good idea in late August.  It was still way too hot!

     Kerstin has been getting much needed PT and OT, and on a regular basis, unlike services in the school setting.  We have been working on some neck exercises with physical therapy and wrist tightness with occupational therapy.  The wrist tightness and contracture lead us to Kerstin's neuro-motor/ physical development doctor to discuss Botox as an option.  Well, she got her first round and weeks later her OT is happy with some of the flexibility she is gaining and specially made some hand splints to further help with the wrists.   We are still working on neck support and strengthening.  PT suggested we look into a product that helps with those things, Dynamic Cervical Orthosis.  Information is being requested on the product as it is something new for us all. 

     It may not be well known but, I am grateful to be in a position as a Family Resource Specialist with Family Voices of Alabama.  The mission of Family Voices is to ensure that there is family-centered care for children and youth with special health care needs.  The information center that I am a part of is staffed by parents of children/youth with special health care needs.  I have been with Family Voices a little over two years now and it has been a wonderful step in this journey of education and advocacy.  We have this booklet titled "Transition to Adult Health Care Guide".  I have had them in my supplies and have handed them out at conferences and workshops and have said to myself countless times that, "I have a while before I need to go through one for Kerstin".  No...it came sooner that I thought.  I got a letter from insurance and social security with information on how to prepare as "the minor child approaches adulthood"!  WHOA!  This is happening too fast.  Kerstin was just starting school, now she's in high school and I have to think about "adulthood".  I pulled out a copy of the transition guide and started combing through it realizing that  my baby is no longer a baby. 

     We are always on a journey and a lot of times they lead us to Target and Starbucks...Growing With Kerstin.  

More to come,

Epilepsy Monitoring Unit (EMU): Day 1

     I am going to try and make a post at the end of day each day of our stay here at the Children's Hospital EMU.  As I prepare to post about the busy day, I can't help but think about my mom.  I listened to a recording of a conversation I had with her on May 17, 2015 at around 9:50 am.  Yes, one year ago, Kerstin had had a seizure and was restless the night before (May 16, 2015), my mom was concerned as always and as we talked, she told me that she hoped Kerstin's doctors could find out what was going on with her.  Well mom, it's been a journey and many appointments later, we are here to go through another series of tests and studies to see what's going on.  

People watching at admitting office

Welcome screen on the telly!

     Today, we checked in at noon.  Then it was on to the 10th floor of the Russell building; a very familiar floor.  We've even seen familiar faces.  All too surreal.  I am very thankful that Kerstin is not here because of unexpected surgeries or illnesses.  However, we are here because of the increase in seizure activity Kerstin has been experiencing.  Tonight is the first night of monitoring, she's been placed in her "mummy head-wrap", leads and wiring everywhere.  She is content, comfortable and seems to be relaxed.  Though, for whatever reason, her temp tried to spike a bit, no worries, it has already gone down.  

Lead placement. 

     Not sure what the night will include but an update is on the way tomorrow.  

All wrapped...monitoring in progress. 

More to come...

Seizures Suck!

 

   "Seizures Suck!"  If you have a family member or if you know someone who has a seizure disorder or is diagnosed, you have probably heard them say those words or have seen them around.  They are so true.  Seizures suck the life out of a party so to speak.  The day or night may be going along smoothly, then out of nowhere...SEIZURES happen and literally suck the joy from the moment. 

     Kerstin's first seizure (first visible one anyway) was April 15, 2004.  That is a night I won't forget for some time.  Since then I can't even begin to count the number of seizures she has had.  However, it is a fact that the older my daughter has gotten, the more frequent her seizures have been happening.  At first, they were spaced by days, weeks even months, not anymore.  I can tell you that we are blessed enough to say that she is not having them on a daily basis like so many with the diagnosis.  

     On Monday, February 15 we were once again at Children's Hospital for another neurological appointment.  My oldest sister went along with us to this seemingly routine appointment and I jokingly told her that I hadn't been on the other wing of the hospital since Kerstin had been discharged after that month long stay.  Right off the elevator we even bumped into a former nurse practitioner that worked with Kerstin's orthopedic specialist, chatted with her for a minute and rushed off to the appointment.  

     Once in the back, Kerstin and I snapped a few pics, she's always camera ready :))  Nurse comes in first and we share seizure activity since the last appointment, talked about sleep pattern and routine question and answer.  Later, the doctor comes in and routine checks are done, we go into detail about seizure activities and how long they last.   Kerstin is a growing young lady, Dr.  talked all about hormonal changes, progesterone, Depo-Provera, ovulation, cycles and the numerous common female changes that can in fact increase seizure activity.  

     Also, noted was the need to have an updated MRI study done as well as the need for a sleep and seizure study.  Okay.  "I need to have all of these done before we consider the Depo shots and to rule out the need for any epilepsy surgery." says the doctor.  The stunned mommy in me, couldn't even ask details on "epilepsy surgery".  There will be no need for that.  Yet, in my mind I am still thinking that the sleep study, seizure study and MRI would be an overnight process...NO!  We are now mentally preparing for a week long stay in our former apartment building called- Children's Hospital of Alabama-Birmingham!  

The journey continues...grow with us!

More to come... and yeah,