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 

“What’s wrong with her?” “She’s sick.”

Raising a child with special health care needs comes with many challenges.  There are some really high highs and also some really low lows.  As parents we love our children and we see them go through so many changes as they grow and deal with the things that come with their varying diagnoses.  We want our children to enjoy life, be involved in their communities.  We want them to be able to do things with and like their peers.  You know, things like, going to the movies, shopping, out to eat, etc…  We don’t want them to be seen as wrong or sick!

I cannot count the times we have been having a good day, on outings, Target included and a child sees Kerstin in her wheelchair and they stare and will ask their parent(s), “What’s wrong with her?” “Why is she in that chair?”  Too many times I hear the parent whisper, “She’s sick.” NO!  And that is exactly what I have started to say without explanation.  When I overhear that answer, I just politely say “No.”  When a parent tells their child that there’s nothing wrong, and to speak, we usually spark a conversation.  They are receptive and seem to want their child to be as well.  It warms my heart, and I am sure the hearts of other parents of children with special needs as well, when parents of children without those needs are open and want to make sure their child speaks and understands diversity. 

Having a disability or special health care needs does not equate to sickness.  Cerebral Palsy is not a sickness, it is not contagious.  Epilepsy is not contagious.  Yes, our children get sick, so does everyone.   When a child/adult has a disability, it usually takes them longer to overcome general illnesses.  Using a wheelchair, wearing glasses, AFOs, neck supports and other assistance in NO WAY means the person is sick.  When Kerstin is sick, she definitely will not be in a restaurant, a movie theater or her beloved Target.  That is something we just do not do.  The only time she is outside of our home while sick is to go to the doctor or unfortunately when she is hospitalized.

So, when you see a family out enjoying their day just as you are and your child asks, “What’s wrong with her (him)?”  “Why is s(he) in that wheelchair?” Be sure to tell them, that nothing is wrong, she needs the chair to get around and go places, say “hi”! 

I Get it!

     This past Saturday, I was fortunate and blessed to be able to work at the local special needs expo.  I was able to leave Kerstin in the comforts of home with her aunt Regina watching her for the day.  So, not only was I working, I was able to get a little respite, much needed.  As always, when Kerstin is with her aunts, I check in to see how things are going with my little boss.

     Regina kept me abreast on what was going on throughout the day.  When the day was done, I called to chat with them and see if anything was needed.  During our conversation, Regina told me that being there all day with Kerstin showed her how busy a single day can be. This was not the first time she's spent the day with Kerstin somehow, she really felt the love of being Kerstin's full time caregiver.  She said it felt almost nonstop at times, by the time she prepped food, got the Kangaroo bag filled and pump ready then the medicines, it was time do something else.  Keep in mind, Kerstin's medicines are staggered throughout the day with her having to take some every four hours.  She said keeping Kerstin on schedule while doing laundry and other things, it felt like she would sit for a few minutes and have to go do something else.  

     "I get it, Mattisa!", to hear those words seemed exhilarating, because, someone took the load off me for a while and knew I needed it off!  I cannot explain to you how overwhelming it was to hear those words.  As parents of a child with extra care and needs, we often hear how special we are, how special our children are, and how it must be so hard.  Or, can you recall the looks of pity, "Aww, bless her/your heart!"? It is welcome relief when it is gotten.  It is understood.  

     We are in no way looking for pity, Kerstin is as bossy as they come! In fact, she was paid for having to be cared for and not the other way around.  How bossy is that?  I had never heard of the "babysitter" having to pay to provide a service! Kerstin, setting another trend.  

     Let a family member or friend know that you really get it.  "How can I help?" May not be answered because I rarely answer when it is asked of me, just know that understanding the flow of a single day and jumping in without disrupting that goes an extremely long way!  I'm thankful for the supportive circle around us, when things seem heavy, they load is quickly lightened. 


More to come...

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

Weight, what?!?

     The latter part of 2017 proved to be very busy for us.  In October, Kerstin had her g-tube changed to a gj-tube.  That was followed by a very unexpected stay in Children's Hospital.  However, since October and the continuous feedings she has been on a constant climb in pounds.  For the longest after getting the feeding tube Kerstin's weight had been fluctuating between 75 and 80 pounds.  She was healthy and her nutritionist was pleased with her progress.   

     Things were going well until they were not so good.  Kerstin started to have these smacking instances along with vomiting which would lead to gastro issues and her aspirating leading to aspiration pneumonia.  All of that lead to a few illnesses and hospital stays last year.  For the most part, and thankfully so, Kerstin has been pretty healthy with no major issues, just allergies lately.  

     The past few months, at various follow up appointments, whenever she has been weighed, Kerstin is no longer in a fluctuating phase on this feeding tube journey, she has been on a steady incline.  well over 90+ pounds.  Normally this may not be thought of as an issue but when you are immobile and assistance is needed for everything, that kind of sudden weight gain can be a bit much.  So, simple changes have been to her continuous volumes made with the hopes of keeping Kerstin in her range of 80-85 pounds. 

     We will see where these changes take us...

More water intake!  Drink up.

More to come...


It's happening so quickly!

Epidermal Nevus

     This year, has been going fairly well however, I have been really bad about updating things here.  I have been updating Kerstin's Instagram a lot more.  Be sure to following Growing With Kerstin there.  
     Now, I will take us back to August 2016, when I noticed this little spot behind Kerstin's left ear.  At first I was thinking maybe her earring had scratched her or the post had stuck her and I immediately started applying an antibiotic ointment to it.  It seemed to smooth out some but, later it came back and appeared bigger and no matter what I applied it seemed to keep growing.  All while growing, it become more irritating to Kerstin,  she did not want it touched in any way, not to have the area cleaned while bathing, not to mistakenly touch it while dressing or anything. 

continuing to grow

     In October of that year, Kerstin had an appointment with a dermatologist that I walked away from still unsettled and wanting more answers.  The appointment just did not seem thorough or complete.  There had been cultures (cultivation of microorganisms) done on this area only to come back negative for any types of fungi.  So, back in December of 2017 a new medical doctor was added to Kerstin's team and the center of her medical home, a female!  Yes, we were enthusiastic about it and she went right to work with us.  On a thorough exam of missy, she determined that she would refer her out to another dermatologist. 

     February 2018, Kerstin had a new appointment with dermatology and it was determined that a biopsy needed to be performed in ordered to know how to properly treat this spot, whatever it may be.  Scary thought of this in office procedure where a small plug of her skin would be cut so that it could be properly tested. We have to do things that are oftentimes scary in order to take care of our children.  The process included a numbing applicant, that would be in place for 30 to 45 minutes before the cut.  Then, post cut, we had to wait another 30 minutes to ensure that the bleeding had stopped before she could leave.  

The wait!  It is so hard to be patient and wait on the results of a skin growth on your child.  Then the call comes and the nurse says she is calling from dermatology with biopsy results.  Take a deep breath and listen, "epidermal nevus".  What?  A very irritating and itchy skin mole.  It may come back but she has been prescribed a skin topical and now she needs to bath with have her hair washed with products that contain ketoconazole as an ingredient.  Since February, that nevus has inflamed twice, the cream is applied and it goes away again.  Another step on this journey. 

More to come...

References:
Epidermal nevus.  NIH U.S. National Library of Medicine https://ghr.nlm.nih.gov/condition/epidermal-nevus