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

Side lying.

     Once again, it has been some time since I've made a post with updates on Miss Kerstin.  Well, she has been doing well.  Since the last post she has had another round of Botox for her wrists.  Just in the past two weeks or so, her occupational therapist has mentioned talking with Kerstin's doctor about possibly doing tendon lengthening surgery to help with relaxing her wrists.  That part of this journey will be closely monitored.  For now, we will talk about dear old side lying.  As I am writing the boss, is wanting to be a bit fussy about side lying and she's only been down for about 5 minutes so far.  She has a few more to go. 

     Last month at her PT visit, therapist suggested "side lying" to help with another cumbersome place...the tightness of the right side of her neck. Hence, the neck support and her always tilting her head down and to the right.  Sometimes Kerstin is okay with it and others. like right now, she grumbles about it.  However, she stops long enough to watch tv for a bit and starts right back.  It is suggested to keep her in this position as long as she tolerates it.  One day toleration was well over an hour.  We will see about today.  

     A little about side lying.  Most probably equate this position with pregnancy however, side lying can be very beneficial in some forms of sleep apnea, it can help with some clients/ patients with dysphagia and numerous other conditions.  Case and point, miss Kerstin, diagnosed with Cerebral Palsy and now needs side lying to hopefully help strengthen and lengthen muscles in her neck, further helping with her head control.  More information on side lying can be found here and here.  

     Kerstin is to be positioned onto her left side, with her head and spine aligned, eventually lowering her head in order to stretch and lengthen the muscles in the right side of her neck. Check her out in these pictures.  

Side lying.  She's ready sometimes and others not so much.

     

Manic Monday

     Today was Kerstin's first day going back to school after being home for a week with respiratory issues.  Last week was really rough.  There were many nights that sleep was almost nonexistent.  Kerstin was given breathing treatments and CPT around the clock.  The girl is a tough cookie!  She is my trooper!

     "Manic Monday" was exactly how our morning started off!  First thing, I had in my mind that today was the day that her Baclofen increased again.  That was NOT the case, the day is tomorrow!  She will once again increase, this time going to 1 and one half tablet, crushed and softened for g-tube administering.   I am so glad that I looked at the calendar on my cell and saw that the actual increase is tomorrow.  

     Second, after her bath this morning, I went ahead and switched her Scopolamine patch.  She wears one behind one ear for three days and then it is switched to the next ear and on and on.  We get to school and she's having therapy, therapist is working on some neck stretches and there is NO patch behind her right ear!  I can only assume that I attached while her skin was still too damp.  

   My issue with both of these instances is that insurance paying for the meds too soon is always tricky.  She will run out before time.  That's another issue for another day.  I am just glad that she was able to go back to school today!  Even if she did doze off in class!  

  



More to come...

Wordless Wednesday- May 28, 2014

:))

Pulling mommy's leg!!!

Tomorrow should be another interesting day of therapy!  Last week my little princess had therapy, but my sister went along with us to do some back to school shopping!  What would you know...the princess got to therapy and decided she was NOT having it and 'pretended' to be so sleepy and totally not in the mood for her session! Therapist came back out with her and told me that she seemed so groggy and not up to therapy that particular day...she was looking the part!!!

About an hour later, after lunch, we arrived at Target...ALL SMILES!!!  She was literally in her "happy place"!!  We were in there longer than usual because of back to school shopping for her and not once did she have to be re-positioned in her chair or anything...cool, calm, and collected!  :-)

Gotta love MY PRINCESS!!!

More to come...

Weight is coming back up!!

So happy, that on yesterday my precious little one had gained a pound of her weight back!  Still not what I expected, but it is a step in the right direction.  She also had occupational therapy yesterday and did really well!  So happy for her, for us!!  We are going to relax again today and enjoy the blessing of a air conditioned home!!

More to come...

Today was a good day at therapy...

My little princess had the opportunity to pet and get acquainted with therapy dogs today! She was so relaxed and alert during her session today. She had great head control and was actually looking from side to side at the dogs, she opened her hands on Que and the tone she usually has in her arms was not present today! I think she was telling mom "Its time to get me a therapy/service dog".

I have to do some research on them, and see what kind of dog would be a better companion for her! Mommy's gonna work on that too!!

More to come...