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

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

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,

A Disability does NOT equal clueless!

On Monday, April 21, Kerstin had a follow up appointment with her neurologist.  His office is at Children's Hospital.  I am the kind of mom that always talk to and explain to her what her appointments are all about and where we're going for the appointment. 

So, needless to say, Kerstin knew all weekend that she was going to Children's Hospital!  Monday morning comes and she had much attitude!  No good morning smile, she barely looked at me.  The whole time, I'm talking to her, telling her that we have to get ready to hit the road for her appointment.  She just looked at me!!!  PLEASE do NOT think that just because a person has a disability  they do not have feelings or understand what is going on around them!!!

I had to slow down and talk to my little lady about her visit to Children's... I promised her that it was only an appointment and that she WOULD be coming back home.  Her mood lightened almost immediately!

So, a few hours later when we arrived at the hospital parking garage...she became startled.  I guess the fact that we were actually there, again.  This was our first return since we left Thanksgiving Day 2013.  Kerstin knew exactly where she was, and her mood changed once again.  

APPOINTMENT:

Kerstin has been having seizures, more than her usual.  These "breakthrough seizures" were happening without fevers or sickness.  They are called so because they can happen at anytime, for any reason even when on an anti-epileptic drug.  Missy is getting bigger, she's in a growth sprut and the lower dose had become ineffective for her.  We have an increase in seizure.  


Also, Kerstin's mommy, is about to be in contact with some people about a "Seizure study". (More info later)

Leaving the hospital...Kerstin was a very happy little girl!!!  She got to go to Target and come back HOME!!!

Kerstin with some of her cousins!  Easter 2014

Her cousin's hat..she said Kerstin would look "cute" with it on!

The day was long but, FUN!  Easter 2014

ALWAYS remember!!!

More info: Kid's Health