Friday, August 19, 2016

VNS Update

It's been almost 3 months since Soren had his VNS implanted.  The surgery went really smoothly and Soren recovered well.  They started the device at a low setting.  Then we went in every 3 weeks to have the data downloaded and the device turned up a bit more, working on getting it to a therapeutic level.  We've been told to be patient.  That it can take up to a year to get the setting just right.  Now we don't go in for another 3 months for an adjustment.  

Overall, we've seen a definite decrease in seizures.  The VNS seems to catch Soren's small myoclonic seizures just as they are revving up, stopping them in their tracks.  And we've been able to use the magnet and wave it over the device to stop some of the bigger tonic-clonic seizures.

It's the early morning seizures that he has upon waking or right after waking up that are still breaking through.  They are really big and the magnet just doesn't stop them, no matter how many times we wave it over the device.  It's frustrating because those are some of Soren's worst seizures and it just starts his day off terribly.  But, again, we have to be patient.

The VNS goes on and off in cycles.  So on 30 seconds, off 5 minutes.  And we've noticed a funny side effect when it turns on during these 30 seconds.  See, the Vagus nerve is near your vocal cords.  And Soren's Vagus nerve now has a lead coiled around it.  So when the device is cycles on and he's talking, it makes his voice vibrate.  Soren happens to find this very amusing.  In fact, it's led him to making funny vocalizations and cracking himself up.  I wish I'd caught it on video.  

So, we still have a ways to go for better control, but we are happy that we took the plunge and got Soren the VNS.


Sunday, April 24, 2016

EEG Telemetry Update

Thank you all for the well-wishes on Soren's EEG.  Things went very well at Children's Hospital.  First of all, Children's has a SWEET set-up for their EEG telemetries.  At previous hospitals, the whole machine was in the room.  There was a camera and a tv monitor and the EEG monitor, all of which took up a huge amount of space.  But at Children's, they have a camera and speaker in the ceiling, so you're not negotiating around all this equipment.  And then they have an area outside the room on the hospital floor where technicians are monitoring a bunch of kids getting tested.  It was really impressive.  

But Soren is a funny kid.  As soon the technicians started putting the EEG leads onto his head, he check out, starting with a light doze.  Then, for the next 20 hours, he only woke up about 5 times to see what was going on.  He saw he was in the hospital and was unimpressed, so he checked out again.

During the testing, he had 6 seizures.  3 tonic-clonic seizures, which will now describe:

What is a tonic-clonic seizure?

This type is what most people think of when they hear the word "seizure." An older term for them is "grand mal." As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. 
  • The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face.
  • After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.
  • These seizures generally last 1 to 3 minutes.
  • A tonic-clonic seizure that lasts longer than 5 minutes needs medical help. A seizure that lasts more than 10 minutes, or three seizures without a normal period in between, indicates a dangerous condition called convulsive status epilepticus. This requires emergency treatment.
Soren's tonic-clonics generally only last about 30 seconds to 1 minute.

He also had 3 myoclonic-seizures, which will describe here:

What is a myoclonic seizure?

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle. Usually they don't last more than a second or two. There can be just one, but sometimes many will occur within a short time.
Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you're just falling asleep. These things are normal.
In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics:
  • Juvenile myoclonic epilepsy: The seizures usually involve the neck, shoulders, and upper arms. In many patients the seizures most often occur soon after waking up. They usually begin around puberty or sometimes in early adulthood in people with a normal range of intelligence. In most cases, these seizures can be well controlled with medication but it must be continued throughout life.
  • Lennox-Gastaut syndrome: This is an uncommon syndrome that usually includes other types of seizures as well. It begins in early childhood. The myoclonic seizures usually involve the neck, shoulders, upper arms, and often the face. They may be quite strong and are difficult to control.
  • Progressive myoclonic epilepsy: The rare syndromes in this category feature a combination of myoclonic seizures and tonic-clonic seizures. Treatment is usually not successful for very long, as the patient deteriorates over time.
When his neurologist came to speak to me about the test results, she noted that Soren's heart rate begins to go up BEFORE his myoclonic seizures begin.  In regards to the VNS, this is really great information.  The VNS will be programmed to turn on when Soren's heart rate goes up.  And HOPEFULLY, this will stop the myoclonic seizures begin, which would be really exciting.  Although they are really fast seizures, they are stop strong, they can really wipe Soren out.

Once the testing was done, a guy came to take all the leads and stuff off Soren's head.  As soon as this was done, Soren opened his big brown eyes and looked around as if to say, "Oh, good.  Is that all over?  Let's go!"  Like I said, funny kid.


Wednesday, April 20, 2016

Our Latest Adventure with Soren

Today we begin the process of Soren's latest adventure--getting a Vagus Nerve Stimulator implanted into his body.  Now, for those of you that don't know what a VNS is or what it does, here's an explanation from

Vagus nerve stimulation (VNS Therapy®) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.
  • The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.
  • The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.

How is VNS used?

  • The neurologist (or licensed professional) programs the strength and timing of the impulses according to each patient's needs. The settings can be programmed and changed by placing a wand over the generator on the left side of the chest. The wand is connected to a handheld computer. 
  • For all patients, the device is programmed to go on (give stimulation) for a certain period (for example, 7 seconds or 30 seconds) and then to go off (stop stimulation) for another period (for example, 14 seconds or 5 minutes). The device is set to give stimulation at regular intervals during the day, usually with 30 seconds of stimulation alternating with 5 minutes of no stimulation. The patient is usually not aware that it's operating.
  • Holding a special magnet near the implanted device (generator) triggers the device to deliver another burst of stimulation, outside of the programmed intervals. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. 
  • Settings (also called stimulation parameters) set by the neurologist typically include a stimulation amplitude of 1.0 to 3.0 mA (milliamperes), a stimulation frequency of 20 - 30 Hz (hertz), and a pulse width of 130 - 500 microseconds. By adjusting these settings, the doctor not only may be able to control more of the patient's seizures, but often can also relieve side effects. One study, for instance, found that changing the pulse width eliminated pain that some patients were experiencing.
  • The battery for the stimulator lasts approximately 5-10 years, depending on the settings used.
However, Soren is not getting the VNS implanted today.  That will hopefully happen some time in May.  Today I'm taking him for a 24 EEG telemetry at Children's Hospital.  Once again, I shall let the good folks at explain this...

What is a Video EEG test?

A Video EEG test records your brainwaves on an EEG and a video of what is going on at the same time. The purpose is to be able to see what is happening when you have a seizure or event and compare the picture to what the EEG records at the same time. Sounds that occur during the testing are also recorded - this can pick up if a person talks or makes sounds during an event. By doing this, doctors reading the EEG can tell if the seizure or event was related to the electrical activity in the brain. If so, we'd call this an epilepsy seizure.  
  • Video-EEG is most helpful to determine if seizures with unusual features are actually epilepsy, to identify the type of seizures, and to pinpoint the region of the brain where seizures begin. Locating the region precisely is essential if epilepsy surgery is being considered.
  • Other names for Video EEG tests include: EEG telemetry, EEG monitoring, or Video EEG monitoring. Usually these terms mean the same thing.
Then next week Soren will have an MRI of his brain done.  Now, Soren has had EEG telemetries and MRIs done before, but it's been a number of years.  The neurologist in monitoring Soren's VNS has never seen Soren's seizure activity.  And getting a more up-to-date look at his brain development is good.  Plus, it's much harder to do an MRI once the VNS put in due to the magnetism.  

So, as I stated above, today is the start of the adventure.  I'm preparing for our 24 hour hospital stay--bringing Soren's laser lights so he has something to look at, my computer for some writing and to catch up on "The Blacklist," old People magazines for some light reading, and my ukulele to entertain myself and Soren.  On Wednesdays, the Farmer's Market comes to Children's Hospital, so I'm going to get some hummus and pita chips for snacking.  

Then I'll wait for my son to have seizures over the next 24 hours, which in this instance is exactly what we want.

Wish us luck!


Thursday, March 10, 2016

Why Are You Late?

This is the question I was asked when Soren and I arrived to pick up Soren's new leg braces at Shriners Hospital for Children this morning at 9:08.  8 minutes late to our appointment.

Now, before I answer that question, let me express that the Shriners Hospital for Children provides great services for kids.  I know I've mocked the mystery smell and posted pictures of creepy clown art that are both at Shriners.  But what I've seen most is their commitment to kids who need prosthetic limbs.  Since first going to Shriners at the end of last year, I've seen more kiddos with missing arms or legs than I've seen in my whole life.  And at Shriners they are cared for and given new limbs.  It's a terrific place.

Now, back to my story.  "Why are you late?" the woman in registration asked me in a rather rude, snippy tone.  I was so thrown by the question, I simply told her that I hit horrible traffic.  Which was true.  But it wasn't the real reason why I was late.

I was late because, before getting Soren out of bed, he had a MASSIVE seizure.  A real whomper, as we say.  After seizing, he peed all over.  And while trying to clean him all up, he pooped.  But this wasn't an easy poop.  Soren was working it.  It was struggling to get this out.  And when that's happening, all you can do is wait.  So we did.

Aaron and I then got him wiped and washed.  Aaron headed off to work and I fed Soren in bed via his G-tube (one of the best things we ever got Soren).  I then prepared things while waiting to see if there was any more "action."  There wasn't and the clock was ticking, so I got Soren dressed, loaded in his wheelchair, and we headed off.

We got into the car at 8:20.  20 minutes later than I wanted.  And then we hit some awful rush-hour traffic.  I usually go to Shriners later in the day, so I stupidly was not expecting this.  At least not AS MUCH as this.  The only thing that made it so that we were only 8 minutes late was using the Waze App.  But it was my first time using it and I was suspect.  Should I just take the route I always take?  Waze kept trying to get me off my usual course.  Finally (a bit too late), I starting following their directions.  And while some of the directions were a little harrowing (going down a steep hill and trying to cut across traffic on Beverly), we made it there.  

Now, there are only 4 handicap parking spaces at Shriners.  And, as I noted, there are many kids there with physical disabilities.   So I had to find an "odd" space to park my van so I could launch the ramp.  I did this, we went up the strange-smelling elevator, and we went to registration.  On their digital clock it said 9:08.  I felt this was a HUGE accomplishment considering what we'd been through that morning.

But clearly I was the only one.  "Why are you late?" she asked as I wheeled up my child who was flopped over in his chair because he was still recovering from his seizure.  I would hope that someone working at her job, a job where all the children have some sort of disability and where the parents are doing their best, would offer some compassion or concern.  "You're late.  Is your son okay?"  

Instead I felt like a kid being reprimanded at school.  I felt small.  I felt like I'd failed.  But I shouldn't have.  I was late because I was caring for my son.  I was late because I needed to make sure he was clean and fed.  I was late because we needed to arrive safely.  

"Why are you late?"  I was late because I was being a parent.



Thursday, December 31, 2015

End of the Year Wrap-Up

It's been quite a bit since I blogged.  I always want to give folks good news.  And it's not the Soren has been doing poorly.  He's just been maintaining the status quo for a while.  But then as I thought of  his year, I realized he has had some stuff happening that I haven't noted.

  • Soren's Legs:  Have gotten REALLY tight since last year.  Soren injured the pinkie toe on his left foot around this time last year.  After that, he started guarding his left leg because the toe took so long to heal.  We massaged his legs, but they just wouldn't relax significantly.  So we went to an orthopedic surgeon, who informed us that Soren's left hip is dislocated.  
    • A dislocated hip!  Oh no!  Now, for you or me, that would really suck and be horribly uncomfortable.  But since Soren doesn't walk, it's less of an issue.  In fact, it's BECAUSE Soren doesn't walk (and has never really walked) that his hip dislocated in the first place.  Without walking, the joint does not develop properly, so his leg easily dislocated.  And it would be far more trouble to do surgery (pain, recovery, etc.) then to just leave it as is.
    • However, the doctor recommended Botox injections into the muscles on Soren's thighs in order to relax them.  We saw her colleague, who did the injections.  Unfortunately, Soren's muscles only relaxed for about 2 weeks at the most.  
    • So now we've been massaging his legs with Tiger Balm, which seems to help his legs a bit--and really opens up the sinuses!   
    • And we are trying Rolfing for the first time to also try and help him.  I've been getting Rolfed (which sounds disgusting) over the past couple months to help my ever-aging body.  And while it's not pleasant during the session, I always feel better afterwards and am noticing positive differences.  I trust my instructor Eric and asked if he thought he could help Soren.  So Soren had his first session on Tuesday the 29th.  Eric was much more gentle with Soren.  And while Soren seemed a bit suspicious at first, he eventually relaxed and let Eric do his thing.  But when Eric got to Soren's legs (which are really for the 2nd session), Soren immediately tensed up again.  It was fascinating to watch as Eric touched Soren's left leg, his right shoulder would rise up in response.  Soren was sitting up MUCH taller afterwards, which was great to see.  So I think we're going to try a 2nd session, where we really get into the legs.
  • Soren's Seizures: Haven't really changed notably.  He's on a new Ketogenic formula called Keto Vie.  We were hoping that this would help cut down his seizures, but things have remained the same.  We do think he's more alert on this formula though.  
  • Soren's School:  Was rebuilt and his GORGEOUS!  Soren has responded really well to the new environment, which has lovely lighting and lots of vibrant colors.  He's been much more alert and attentive at school.
  • Soren's Wheelchair:  Has worn out its brakes.  Plus Soren has had the chair for years and, as a growing boy, he's simply bursting out of it.  Now that we know about his dislocated hip, we can get a seat accommodating that, making it more comfortable for him while sitting.  So getting a new chair will be our 1st adventure for the new year.
  • Soren's Height and Weight:  Soren is a big boy, weighing in at 68 lbs. and measuring 58 1/2 inches.  The most challenging thing about this is that Soren loves to snuggle, but with his legs being both long and in pain, this has gotten really challenging.  We try our best to make sure we hold him because the boy loves the love.
  • Soren's Smiles:  We haven't seen a lot of smiles lately.  I've begun marking them down in my calendar so I remember.  He smiled on November 20th and on the 21st I even heard him giggle.  He had a good Christmas (no seizures!) and was really interested in the present opening.  Hopefully this next year we'll get better seizure control which always leads to more smiles.
I think that sums it up!  I'll do my best to post more often, giving updates on Soren's progress.


Sunday, July 19, 2015

A Good Week

Hello again.  Shockingly, I'm blogging in a more timely fashion.  After my last post, which was somewhat of a bummer, I wanted to note that Soren had a really good week.

On Monday, Soren's new daytime caregiver showed up.  He'd had a rough morning of seizures (3 before 8:00), so he was a bit pokey.  But then he began peeking at his caregiver, sizing her up.  Aaron had provided "Hitchhiker's Guide to the Galaxy" for her to read to him.  And so she started reading, and Soren kept his eye on her while she did.  When I came home to feed him lunch, he had perked up.  They were watching "Spirited Away" and Soren actually seemed interested in the movie.  That night, Soren was talking and talking.  He was so excited, he didn't even want to go to sleep when the rest of us were heading to bed.  

The next morning, Soren was rarin' to go.  He was awake for almost the entire time his caregiver was here.  She read to him and they watched "Star Trek: Into Darkness."  The gal has great taste in movies!  When Soren's afternoon caregiver arrived, he talked to her continuously, and was a helper in the shower.  He was just chockfull of energy.

Wednesday was rougher.  Maybe adjusting to all that excitement?  He had a bunch of seizures and he slept most of the day.  But Thursday and Friday he was back to his energetic self.  By this time, his caregiver had finished "Hitchhikers" and moved onto "The Kneebone Boy" (one of his sister's recommendations).

Oh, and Friday morning we heard Soren cry out at 5:15.  Aaron and I ran in and Soren had scooted and turned so much in his bed, he trapped himself between the mattress and the gate.  Horrifying?  Sure.  But exciting that he had THAT much energy?  Absolutely!  Now we just need to put the pillow back between him and his gate.  It had been so long since he'd moved around, we'd stopped doing that.

Soren hasn't had any seizures since Wednesday and this weekend his energy has continued.  He's been chatty and he's been moving all over the place.  Lots of stomach crunches.  We can tell he desperately wants to sit up on his own, but he just doesn't quite know how.  If these seizures would stay away, who knows what he could do?

This week Soren does a morning camp (something I need to blog about another day).  His caregiver will be with him so I can work.  Hopefully he'll enjoy it as much as being read to and watching movies!


Sunday, July 12, 2015

Big Changes

I just went to Soren's blog page and realized that I haven't written anything since February!  Good gravy, that's a LONG TIME!!!

Why haven't I written for so long?  Well, usually when I blog, it's about something really cool or important that's happening with Soren.  I guess I haven't felt inspired for many months!

Why?  Well, as far as his seizures, he's not doing great.  That is never fun to write about.  July has been especially rough for him.  I have no idea why.  He's having 1-2 BIG tonic-clonics each day.  They really knock him out.  I've even had to give him the emergency medicine Clonipin a couple times, which stops the seizure activity but completely zonks him out.

Because of all these seizures, we haven't seen Soren smile or laugh for a LONG time.  That's really hard as a parent.  To have a child that smiles and laughs--even sporadically--and then it all gets wiped out by seizures?  Super sucky.

But things have been happening in our lives that I can update you on.  In April we got a new couch.  There were many reasons for this.  1.) Our couch was 18 years old and had seen better days.  2.)  Moira didn't like sitting on the separate armchair far away from everything.  3.)  It was getting too hard to get Soren off the Living Room floor.  And 4.)  Our house was hit by a car and glass got all over our old couch.

That last thing happened AFTER we ordered our new couch.  But it's a good thing we did, because our couch was then ruined!  We now have custom built sectional with a chaise for Soren to stretch out on.  And he LOVES it.  While we may not get smiles from the boy, we get excited snorts.  He waves his arms and kicks his legs.  It's a good couch.

The other big thing that's happened since February is that I got a full-time job.  This has really thrown me for a loop.  I'd been freelancing for almost 11 years!  I was used to being able to pick up my kids, feed and shower Soren in the afternoon, and make up my own schedule.

The great thing about my new job is that it's REGULAR PAY!!!  Woohoo!  No more wondering what I'll be writing next or when I'll get paid for it.  When I was first offered the job, I was told I could work from home.  And while I can if needed, I've also been given a lovely office.  And I feel like a bit of a jerk if I don't go in and use it!  Plus, when I'm actually in the office, I'm constantly pulled into meetings.  So they kind of need me there!

I got the job at the end of April, when the kids were still in school.  So I would go in, work in the office until 2:30, zip home just in time for the bus to drop Soren off, give Soren his snack, and then drive across town to pick Moira up from school by 4:00.  Then Moira's finals came, and I had to pick her up at 12:30!  So I was barely in the office.  It was bananas!

Now it's summer, and I don't have to pick up Mo.  And I was feeling bad for leaving early when I knew there were meetings.  So we decided we should look for a caregiver for Soren.  Now, we haven't had someone helping us out regularly for YEARS.  Probably since Soren was 3 years old and started school.  And now we needed someone that could lift an 11 year old boy, diaper him, shower him (preferably), and feed him via a G-tube.  That's a lot to ask of someone!

But then we were watching TV and a commercial came on.  I said to Moira and Aaron that there ought to be something like that for people with special needs.  Aaron said I should check out their site and see if that was an option.  Lo and behold, it was!!!  Even the option for someone that knew how to feed someone with a G-tube.  So I placed an ad for a worker that could care for Soren and within a day, I had numbers of people applying for the job.

After doing interviews, we hired a very nice woman who has worked with kids with special needs and the elderly.  She's totally comfortable with the G-tube AND she can give Soren his showers!  It's AMAZING!!!  Soren put her through a bit of "trial by fire" that she survived quite well (I will spare you the graphic details on that).  Was this intentional?  Was it him being irked that someone other than his parents was caring for him?  Who knows.  But the caregiver rolled with it and now Soren seems to trust her.

Now I don't have to stress about having a meeting at 4:00.  I know that Soren is covered and safe.  And even though it's an adjustment, I think it's a good growing experience for us all.