Seizures and VNS

     When I say that I am growing in many aspects each and every day on this journey called life and "Growing With Kerstin"!  As she grows physically, I am also growing in knowledge in ways of taking care of my child with "complex medical needs", "special healthcare needs", "a disability" yet, the best title of all is simply, Kerstin, my moon and stars, my sunshine!  Yesterday, we added a few more crucial steps on our journey.

     Late February and March were jammed packed months.  Appointments, planning, pre-op and surgery.  April is keeping the same momentum.  But, back to March.  On March 12th, as you know from my last post here, Kerstin had her VNS implanted. The surgery went well, she is recovering nicely, she has now has more "Scars of Strength", and they have healed very quickly when compared to previous surgeries.  I think that is because none of the VNS incision were as large or as deep.  Still, she had some tenderness for a few days afterward but that is all gone now and our journey is moving along.

Pep talk and kisses before she heads off to surgery. 

     April Fools Day 2019 was spent in traffic and then at Children's of Alabama for a full neuro day! Traffic on a Monday into Birmingham, AL...horrific.  We already had a 2 hour drive there but Monday's turned into a 3 hour voyage. Remind this mom, no more Monday morning appointments! Mid-mornings and afternoons, maybe.  Anyway, once there, down to her neurosurgeon.  He was pleased with her healing and we are discharged from him unless/until there are device concerns or at the time for a new battery.

Bandages removed; three days after surgery. 

Two weeks post VNS placement. 

     Back up to her neurology to see the nurse practitioner (first time meeting her and it was good meeting) and neurologist.  This was where the bulk of the day was spent.  No complaints at all because things were required to benefit Kerstin.  Educational for this mom to again, benefit Kerstin.  They are needed.  I truly believe this is one of the things that will prove to be a saving grace on this Seizure/ Epilepsy journey.  On the lowest "milliamp" (new word alert)  or pulse settings, of her VNS, we are already seeing changes in her seizures.  After implantation,  we went ahead and started proactive swipes, to get her acclimated to the pulses from a swipe as well as my getting used to swiping the magnet over the stimulator.

     About nine days after VNS implantation, Kerstin had visible seizure activity, shortly after I had given her a proactive swipe.  So, I did another one to stop this seizure from increasing and approximately one minute later the activity was subsiding.  Last week however, Kerstin's brain decided to test the system.  Again shortly after her mid morning swipe, she started to have a seizure, one swipe, one minute later shes still involved.  Another swipe another minute, still involved.  This one was visibly increasing by the minute with twitches so hard, they could be seen in her neck (never happened before) and felt all the way to her hairline.  Yet, after four swipes and four minutes they start to subside before Diastat was needed. 

     On the day of surgery, Kerstin's device was set at a lower end of pulses; her neurologist has a goal he wants her to get to, depending on how her brain and body reacts to pulses on various levels.  At this appointment, her milliamps were amped up a bit.  Again, my champion did well with things minor increases.  Her next increase will be done remotely!  The wonders of science, technology and medicine!! We will be back in office in a few weeks for additional talks and another increase to her milliamps.

VNS Interrogation

Kerstin's VNS profile.

Alert and attentive! 

     Kerstin's neurologist and nurse practitioner are happy she has the device in place.  I am already happy that we went ahead with this advancement and seizure treatment that does not include more medicine.  Her nurse practitioner told me to look at the VNS as a sitter, keeping an eye on Kerstin even when I cannot.  The device will kick in with pulses when it notices an increase in her heart rate, often signs of strenuous activity and heart rates increase during seizure activity. Also, it will notice those absent/staring seizures I may miss or think of as her just staring.

My very patient, patient.  Entertainment in between appointments. 

     We are now equipped with a little more knowledge than the days and weeks before.  We also have a magnet hooked on her wheelchair (with her wherever she goes) and on the stand near her bed.  She has her i.d. cards, one in her wallet and I have the other.  We are once again, making some very important strides on this journey...Growing With Kerstin.

Always, always happy to go in and come out on the same day!

   



More to come,

VNS Placement

Yes, another procedure or surgery.  Like her GJ tube placement and replacement, this is not considered a major and typically an outpatient procedure.  However, with increased pulmonary concerns, we have been told to "be prepared to stay overnight".  We are steadfast and trusting the bags will not be needed.  It is the night before surgery and Kerstin has had her Dial bath, and the chlorhexidine gluconate (CHG) (preoperative skin prep wipes) have been used.  They are indeed sticky!

CHG wipes

So, what is VNS?  Vagus Nerve Stimulation is called a "pacemaker for the brain", it will send mild electrical pulses or energy to the brain by way of the vagus nerve.  The pulses will act as stimulants to cut down the intensity of seizures or preventing them altogether.  The VNS is an add on to her epilepsy care regimen and will eventually help her be able to come down on the high dosages of medicines she is currently on yet, still having seizures with some of them being very intense, like she had just a few weeks ago.  

Kerstin currently has prescriptions for 4 different seizure medications.  In addition to other medicines she takes; she takes 1 med twice a day, another at bedtime only, then one she takes 3 times a day and one in case of a seizure lasting longer than 5 minutes.  Sounds confusing?  Sounds busy? Hectic? It takes some scheduling and work to keep up with the schedule.  Overtime, these widely available and approved medicines can cause other health concerns, they take a tole on muscles (which is already a part of her life with her Cerebral Palsy diagnosis), they also affect alertness/awareness.  

Outside of cannabis/cannabinoid oils/ marijuana, VNS is a none medicine treatment to help with seizures.  No, I have not ruled out cannabis treatments for Kerstin if they seem to be needed.  But, for now, we prepare for VNS placement.  Look for updates from Children's of Alabama on Facebook and Instagram - Growing With Kerstin!  

I think I could find it with my eyes closed. 

More to come...




Seizure Control Options
Seizure Control Options Take 2
Vagus Nerve Stimulation (VNS)
VNS Therapy 

Seizure Control Options Take 2

     Last month, I wrote "Seizure Control Options" for Kerstin and the fact that she is back to seeing her neurologist every few months instead of the annual follow up appointments we has gotten to a few years back.  Over time, with the intensity of her seizure activity ramping up again, we went to every 6 months now, her last few visits had been like every 4 months with lots of calls and updates in between.  Now, it has been a mere two months and within the next few days, we will be having our first/ consultation appointment with a neurosurgeon at Children's of Alabama.  I am sure that 2018 will close out with lots of follow up appointments. 

     To talk more about Vagus Nerve Stimulation Therapy or VNS Therapy.  What is the vagus nerve? What is VNS/ VNS therapy? How does it work? Will it stop seizures?  So many questions.  
The vagus nerve according to Britannica, is also called X cranial nerve or 10th cranial nerve, which is the longest and most complex of the cranial nerves.  "The vagus nerve runs from the brain through the face and thorax to the abdomen." (Britannica.com)  
Vagus Nerve Stimulation (VNS) is used to prevent seizures.  Gillette Children's Specialty Healthcare describes VNS as, "Vagus nerve stimulation (VNS) prevents seizures by sending regular, mild pulses of electrical energy to the brain along the vagus nerve in the neck."
The therapy or stimulation works when a  stimulation device that is similar to a pacemaker sends electrical pulses. "The VNS therapy system is surgically placed under the skin on the chest wall. A wire runs from the stimulator to the vagus nerve, which is part of the autonomic nervous system. The autonomic nervous system controls involuntary body functions, such as heart rate" (Gillette Children's).

     As stated, there has been an uptick in Kerstin's seizure activity for some time now.  Her latest was yesterday morning just after she woke for the day.  Kerstin is now prescribed three daily seizure meds and one in the case of a seizure lasting longer than five minutes.  As with most medicines, they all have side effects as well as long term effects on one's body.  A few years back she had to be taken off one because it contributed to an illness that kept her in the hospital for weeks. 

     Next week, Kerstin has been scheduled to see a neurosurgeon.  We look forward to talking further about VNS therapy as an option for seizure control and hopefully getting Kerstin on lower doses of anti-epileptic/ seizure medications or off of them altogether.  An update is coming after the appointment next week.  We are on the road to Children's again and two months sooner than anticipated. 

More to come...


resources
VNS Therapy,  What is Vagus Nerve Stimulation?, Vagus Nerve Stimulation, Vagus Nerve Anatomy

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