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

Harsh Reminder!

      Reminder(s) is defined as "a person or thing that serves to remind", according to dictionary.com.  Then what is remind?  The same site tells us that remind is to "cause a person to remember".  Life does not give us options on how we will be reminded of something, nor do we know when it will happen or whether the reminder is subtle and nice or just harsh!  Well, on Wednesday morning we got a not so subtle reminder that Epilepsy/seizure disorder is still a very prevalent part of Kerstin's journey!

     The thing about seizures is that they have no time frame, they can suck the joy out of any moment.  They can happen in the middle of the day, during a ride from a doctor's appointment, in the middle of the night or even early in the morning, marking the end of a good night's rest.  Which is what happened yesterday.  Kerstin was suddenly awake at 5:40 a.m. and thrust into seizure activity.  With two episodes of cluster seizure, I am so thankful that she did not require medicinal intervention to stop the seizures. 

     So, what are these cluster seizures/seizure clusters?  Clusters are when seizures start and stop.  The Epilepsy Foundation states that, "Seizure clusters are also known as repetitive or serial seizures, with return to baseline between events".  How can one truly prepare for that?  There really is no comparison for a parent or caregiver tending to a child with special health care needs that cannot tell you that they may be sensing that one is coming (an aura) nor can you truly know what it is like when you have not had a seizure yourself.  As recommended, it is good to make notes of the seizure activity:  how long it lasts, how many clusters, how long it took to return to usual activity, etc...

     To those clusters, in the dark coldness on January 3, 2018; thanks for the harsh reminder.  I am reminded to always know what to look for and to continue learning and growing on this journey of Growing With Kerstin. 

More to come...


Reference
Epilepsy Foundation:  Seizure Clusters 
Dictionary.comhttp://www.dictionary.com/

The Summer of New Things --Things Anew!

     As we have eased into Fall, at least the calendar says we are.  I reflect back over the summer that was.  Uneventful it was not.  It started out with the usual lazy days of summer.  Those days suddenly changed in July and seem to have been almost unending since.  Kerstin had some stomach/ GI issues at the beginning of July which lead to some vomiting which lead to her aspirating which lead to pulmonary issues.  This one episode of vomiting lead her to on and off pulmonary and bronchial problems.  Before she had the actual vomiting, I had started to take note of Kerstin constantly chewing and smacking shortly after her boluses.  We talked with nutrition and her doctors and she was put on a medicine for reflux with the hope that it would help.  Not so much!

     So, back to the episode with the vomiting and pulmonary problems.  Kerstin was sick, having these bad coughing spells that would seem to take her breath away.  No amount of CPT and breathing treatments seemed to be working so, we would head to the pediatrician.

Kerstin was listened to, labs taken, sent for xrays to make sure that the crackle in her lungs (right specifically) was not pneumonia.  Her doctor placed her on a round of antibodies for a week to help clear her up.  Along with the antibiotic she was receiving around the clock CPT and breathing treatments.  

A week later Kerstin still was not feeling better!  This congestion just wasn't breaking, the antibiotic had not cleared anything.  We were back at the pediatrician again only to find out that not only was there crackling in her right lung, it was present in her left.  Her doctor looked just as defeated as I did.  He told me that he was going to call up to Children's and talk with her pulmonologist.  As we sat in the exam room, reading stories and listening to her Kirk Franklin.  I remember Kerstin looking at me and smiling.  I checked my phone to see what song she was listening to and it was "My Life Is In Your Hands".  I posted the screenshot to Instagram because my first thought was how appropriate the song was in that we never know what a day will hold for us. 

     After some time, the doctor came back to inform that he had sent xrays and labs to Children's and that Kerstin's pulmonary team was prepping a room for her!  I remember just staring at him!  He said they agreed that it would be best if she was admitted there in order to get the care she really needed. 

Prepping a room...they had done that indeed.  We got there, she was quickly admitted and taken up to her room where we would spend the next four days.  Kerstin would get CPT and breathing every three hours the entire stay, she was having trouble with her oxygen levels and required oxygen for 2 of the 4 days.  

She manages to smile through so much. 

It has been a long day. 

     After being discharged and home for a few day, Kerstin ended up back at Children's, this time with big GI issues, literally.  Kerstin's stomach was so distended, I was so afraid that pancreatitis had made an unwanted return!  Before knowing we would have to go back, we watched Kerstin's stomach balloon in the matter of hours.  I researched and found Youtube videos on what to do in the even of...venting was the common thing mentioned. Venting the gtube was not helping! I emailed pictures to her nutritionist and nurses.

 Kerstin was so uncomfortable and did not want to be moved in any position.  The nurse called back and said she had received the pictures and wanted me to pack a few things since we lived so far from Children's!  I hadn't even fully unpacked from the week before.  She gave directions on what to do when we arrived back at the hospital; if Kerstin go sick(er) on the ride to take her directly to the ER at the hospital, if not further directions were given.  Thankfully, the luggage was NOT needed.  An in office procedure determined intestinal gas, that could not and would not be corrected with gtube venting.  Also, nutrition and meal plans were changed while there.  Fast forward to about a month later, just before Kerstin's pulmonary appointment, we have respiratory issues again.  Pulmonologist hears more crackling in her lungs.  Days before she had more vomiting and apparent aspiration.  So, more antibiotics!       
     Fast forward again, about a week this time.  We are meeting with a new GI doctor.  He was in no rush to be in and out of the room, he listened to all questions and concerns and sincerely answered each.  He even wanted to watch as Kerstin was given a bolus to see firsthand the chewing and smacking that eventually makes her gag and retch and sometimes vomit which leads to the aspiration and congestion.  The smacking...rumination!  What? I had never heard of that.  That is a topic for another post on another day.  More to come...

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,

Fireworks!

    So, Independence Day weekend 2015 has come and gone.  Barbecues, cookouts and fireworks!  Kerstin has always enjoyed all of the colors lighting up the night skies.  There were heavy storms and lots of rain on July 4th so fireworks were put on hold until the next night.  I checked with little miss bossy to see if she wanted to go out.  She smiled and looked up, to signal "Yes".  She was excited!

     As soon as they start...her eyes were closed, very tightly too!  The entire time we were talking to her, asking if she would open her eyes, telling her that she was missing the fireworks.  All to no avail, she didn't open them until she was back inside.  This interesting night seems to have not ended!  Kerstin has barely slept over 8 hours in the past 48 plus hours!  

     This called for another call to her neurologist.  His nurse had two questions for me:  Has she been sick?  No.  Was it that time of the month?  No.  Has she been around fireworks? YES!  My family and I had come to the conclusion that the flashing lights and the sounds had triggered something in her, since she never opened her eyes.  The nurse said that they have had a number of children that have been disturbed by fireworks.

     Speaking of that "time; we are already in a "monitoring" phase because the past two months we've had obvious hormonal changes.  The neurologist wants us to keep an eye for activity and possible catamenial epilepsy/seizures.  Oh the joys of growing and changing! 

     I really hate that they had a negative affect on her this time.  Like I said before she has always, always loved fireworks and they have never worked on her nerves.  Melatonin is the only thing the neurologist recommends for a sleep aid for his patients.  She was put on melatonin years ago and started to sleep better with the occasional events of lack of sleep. 

     Now, we've gone with her waking up at 2;30 a.m. on Monday morning and staying awake the entire day, until 6:30 p.m.  Only to wake again at 9:30 p.m. and stay awake until 1 a.m. and back up at 4:45 this morning.  She did take a nap, if we can call it that, around 5:30 this afternoon.  Guess what time she was awake again?  6:15 p.m.!!  As I type, it is 10:35 p.m. and she is wide awake.  I can't deny it, we've gotta go ahead and restart our friend, Melatonin!


More to come, 

Not a seizure free weekend!

     This Memorial Day weekend was very different from those of the past.  It didn't start out that way!  It seemed like it would be uneventful.  Saturday was spent mostly indoors watching movies, Sunday was the opposite.  Kerstin wanted to show me that she is the boss in these parts and I jokingly said that she was fussing at me about something throughout the day.  I was in and out of the house because I was working in the yard, trying to be a gardener!  

     Sunday night took a sudden turn!  I was sitting in one room finishing up an assignment for class when I heard Kerstin making a light moaning sound.  I ran in to check on her, only to find that she was not alert and had that look as if she was looking pass or through me.  The left side of face was twitching, then nothing!  She seemed okay and alert, only to turn her head and everything started again.  This happened over and over. 

     I always keep my cell handy to time her seizures and now to access my new favorite app; SeizAlarm.  I found the app last month after Kerstin had a seizure.  I couldn't fall asleep after it was over so, I just started reading about seizures and stumbled across a jewel.  I wrote about it here.  If you or a family member or friend has a seizure disorder, Epilepsy, you should have this as a resource.  It works and makes the emergency contacts for you, with a map of where you are!

     After, I opened the app, it immediately made the contacts for me, within minutes my sisters were with us.  Kerstin had to be given her Diastat because the clusters had gone on over five minutes.  So, we wait to see what's next!  What happened was scary and not something you get used to.  Kerstin went into a full grand mal clonic-tonic seizure with loss of alertness, vomiting, full body jerks!   That brand new suction machine we just picked up Friday had to be put to work!  

     This seizure was relentless!  It completely took over my baby's body, her eyes were so red, her body so stiff and uncontrollably jerking.  It was only adrenaline that kept me from screaming and crying.  More Diastat had to be given.  We called Children's Neurology and the on call doctor advised to take her to the ER since they had not stopped after 2 rounds of Diastat.  

     There, they performed urinalysis, blood work, CT scan and chest X-ray, to all come back normal!  There was no fever!  What caused this?  That is a mystery!  We will have to follow up with her regular neurologist "ASAP" per the ER doctor.  He seemed just as puzzled as I.  He said, he just didn't see anything out of the ordinary with the tests they performed.  He did order a level to check her Keppra levels.  That could be done in the ER and had to be sent to another lab. 

     Memorial Day, we left the ER at 7 a.m. so, needless to say, they remainder of the day would be spent sleeping.  That is what we did.  For the first time in my 30+ years, I didn't spend this holiday with the family and I did not see my own mom!  This seizure activity took a lot out of Kerstin too.  She was probably awake for an hour or two at most on Monday.  Now, we wait!  Wait to see what her neurologist has to say...

Definitely more to come...