Day Two Part Two - Five Day Video EEG

If it is possible for someone to have fun in the hospital then it is happening.

We had a visit from Byron's uncle Jeff today, a therapy dog came by for a scratch and a treat, Byron's brother Ryan and Regina are coming tonight AND Byron had a Skype call with the real Santa in the North Pole!

The room is quite large and comfortable. I sleep on a pull out couch that is surprisingly ok.  Tomorrow Byron has an all day Neuro Psych Evaluation.  Fingers crossed that he complies with all the tasks.  

Day Two - Five Day Video EEG

Laughter really lights up the brain!

Typical Daytime EEG

The EEG on Byron's Laughter

5 Day Video EEG - Day One

Byron and I find ourselves back at Morgan Stanley Children's Hospital sooner than we expected.  Byron has had two surgeries at this hospital.  I sometimes call it Columbia Presbyterian but it really is Morgan Stanley Children's Hospital.

Byron's last EEG in October was not good news.  He is having subclinical spikes nearly every ten minutes while he is awake and almost continually at night.   While these are not seizures per se, they do not bode well for his development over time.  These spikes can interfere with learning and his overall good health.

The purpose of this visit is to see what this spiking really is i.e. whether indeed he is having small seizures that we are not noticing.  So he will be hooked up to the EEG machine and watched by video for five days.

So far today they have hooked him up, flashed a strobe light in his eyes for five full minutes (to try to induce a seizure in his Occipital Lobe (?)) and taken blood to test his seizure medicine levels.

AND still the guy is cheerful.  AND there ALOT of snacks which makes him very happy.

AND we have a single room with a million dollar view of the skyline and the Hudson river.

A Good Climb!

With all the brouhaha around the seizure developments, it's easy to lose sight of little challenges successfully overcome.  Yesterday, on an unseasonably warm November day, Byron tried again to climb this rock wall in our backyard that has been vexing him since he was three years old.  Over the years I would let him give up before he got to the top  - but not today.  Today we worked on it until he got it.  Go Byron!

No Seizures but Lots of Spiking

The results of Byron's recent overnight EEG came back and it showed that he had spiking almost continuously while sleeping.  According to his neurologist these nighttime spikes need to be controlled otherwise they can affect his brain long term and his ability to learn.  So  - in addition to Tripletal she put him on Keppra.  Keppra is well know to have behavioral side effects - rages, irritability, tantrums and on and on.  And we had it ALL!

Byron was not himself on Keppra.  Homework was a nightmare.  I would read one sentence to him and he would have no idea what I read.  And that boy had attitude!  It was basically a nightmare.

So now we are weening off Keppra and I am seeking a second opinion from the Level four Epilepsy center at Columbia.  We are going to see Dr. Akman who is the chair of the Epilepsy department on December 20th.  Please wish us luck.  We need to find something to control the spiking without causing a melt down in behavior.

In the middle of it all we had a huge project for Byron due at school on the Iroquois Indians.  In my opinion this project was too huge for a special ed student in 4th grade but there you have it - what to do?  In the midst of all this Keppra-tude we got it done.  Here is Byron reading his very first essay with a custom made Longhouse  - made by Byron and his dad.  Pretty Awesome!

Another At Home EEG

In June of 2015 Byron had his first seizure.  Since then he has only had one additional major seizure and two small ones.  He had a small seizure last week.

In the middle of the night, I heard Byron's voice calling my name in one of my dreams.  It was about 4:30 am.   I was quite certain that it had been just in a dream so I didn't check on him.  When I woke up later in the morning I said to Bob, "I wonder if Byron had a seizure, I heard him calling me."

About five minutes later, Byron ran out of his room and said "Mom I had a seizure last night!"  Apparently he was conscious but couldn't get up or speak.  I asked if he was calling out to me and he said "I was, but in my head."  I had heard him but only in my subconscious mind!   The only after effect of this seizure for Byron was a strong headache.

When Byron's neurologist learned of this recent episode she requested that he be checked again via EEG. Middletown, a town near us, has a great service that allows the patient to take the EEG and the video camera home with them.  It's quite portable.

Byron will sleep with all this on and then we will go back tomorrow morning to have it removed.  Modern technology is amazing!  The bond between mother and child is amazing!!

Cast Off!

Today we went to Dr. Hyman's office at Columbia to have the cast removed.  Byron was very excited.

This is a video of the cast removal - I guess it was pretty ticklish.

This is Byron's foot after the cast was removed with the surgical scars.  A bit more gory then I imagined.  Byron didn't mind though.  He thought it was cool.

This is a video of Byron walking immediately after the cast removal.  He looks pretty good!

 

Byron now has to wear a removable boot for two weeks until his foot brace, known as an AFO, is ready.  The boot looks like this:

So now a boy's summer can properly begin!  Swimming lessons on Saturdays and lots more pool time.

Also, Byron will start physical therapy three times per week at the Center for Discovery to regain strength and to ensure that his newly released heel stays down and his toe stays forward.  The journey continues!

Walking

Remarkably, Byron has had almost no pain.  We left the hospital with codeine and valium but did not use either which is great.  Just a couple of doses if Ibuprofen when needed but that was it.

Today was the day I got him up and walking.  He was VERY resistant.  The fear of pain was actually the hardest part.  But he is getting now he is doing a great job.

Everything Went Smoothly!

Thank you everyone for all your kind words and blessings!  The surgery went amazingly well, without a hitch.  The doctor was very happy.

Byron threw up twice on the way home (in the cab) but we were well prepared with buckets and cloths.

Byron is eating now and said "all this is so relaxing!"

We go back in one month to get the cast off.  At that time he will be measured for a brace and a new cast will be put on for two weeks until the brace comes in and is fitted.  I hope that one will allow swimming!

Byron is well and home

All went well. The surgeon said the surgery went beautifully. Byron is very tired but ok.  More in a while.  

Byron is out but still asleep

Napping!

And he's out. Good to sleep while we wait. 

Waiting

Going to be about 2:00pm. 

Surgery Time

Byron's surgery is scheduled for some time around 1:00 pm tomorrow Tuesday.   He needs to check in at 11:00 am.  This means no food after midnight and no water or drinks after 9:00 am.   He is going to be an unhappy, hungry camper.  They explained to us that they have to take the babies first.  Must be a lot of babies

But today he is happy!  He doesn't seem nervous at all and informed us that after the surgery he is going to want Mountain Dew and Chips. These are two special treat only items.  And he said he will want to rest for awhile ;)  "Before"  foot photos at end.

Left Foot Before

Left foot on right  - notice minimal weight on it and heel up

Surgery on Tuesday

It's been a while since I have posted a medical update about sweet Byron so this one will have two!

Byron is one year seizure free - YES!!!!    We shall see how the coming year unfolds but we are so happy with this news.   It is rare to control the seizures on the first try with the first med  - we attribute it to Blessings and Grace and LOVE.

Byron pushing a cart with TWO Hands at Home Depot last week

The next news is that Byron is having surgery on his foot on Tuesday, June 21.  The head of Pediatric Orthopedic Surgery at Columbia, Dr. Joseph Hyman, will perform the surgery.  It is a Tendon Transfer and Heel Cord Lengthening.

Basically, from what I understand, the tendon on the inside of Byron's left foot is pulling his foot inward and it is very strong.  The outside foot tendon is weak.  So they will move the interior tendon to the outside of the foot.  This will pull his foot forward and straight.  Then they will lengthen his heel tendon so that he can easily get his heal down when he walks.

This surgery is quite common after SDR surgery  (link to SDR post)  which Byron had a couple of years ago.  SDR reduces the spasticity, but if the tendons are already short at the time of the SDR then they often don't lengthen on their own.  Byron's Physiatrist determined that no amount of physical therapy or bracing would correct the problem as it is now - so surgery it is.


Dr. Hyman thinks this is the perfect age for the surgery and the prognosis is good.  Byron will be under anesthesia for a couple of hours and end up in a cast.  He will be in this walking cast for one month so no swimming (bummer!).  And he should be up and around the next day.  It's amazing how fast children can heal.

We don't know yet whether it will be in-patient or out-patient.  Because Byron has seizures, it all depends how he comes out from the anesthesia,  whether he will be released or not.

I'll post updates as we go.

Lyme Disease

There has been an interesting development on Byron's health front.  Last week Byron was complaining about stomach pain and headache.  It was so severe that he was sent home from school. He has had stomach pain like this on and off for the past 6 - 12 months.

After it continued for two more days, I decided to take him to the doctor.   His regular pediatrician wasn't in so we saw the pediatrician that is also an infectious diseases specialist.  I encouraged him to give Byron a full blood work up which Byron hasn't had for several years.

They took at least 10 vials of blood (Byron was a trooper!) They tested for a large spectrum of possible issues including Chrons, irritable bowl, liver and kidney function and several tests for Lyme.  So far all have come back negative except for Lyme.  It turns out Byron has full blown Lyme disease - and has for at least 6 months.  For those who know this is the result:

IgG and IgM antibodies by Western blot 

• Positive IgG and negative IgM – Lyme disease confirmed

Now Byron will be on oral Amoxicillin for one month.  I hope this is really the right med for this.  We'll see.  

But the thing that makes me go hmmmm..... is that neurological symptoms, including seizures, can be a bi-product of Lyme.  Of course Byron is already predisposed to seizures due to the hemiplegia -  but wouldn't it be interesting if when we get the Lyme under control, the seizures go away.  

I'm not even sure how we would find that out, another EEG test with him off his seizure meds I guess?  Anyway - poor poor Byron.  The sweet guy can't get a break.  But maybe, just maybe, there is a hidden blessing in this new development.  I'm guessing I may be the only person on the planet who sees Lyme as a possible blessing!  

Center for Discovery and a Great Therapy Day - Yay!

We are so fortunate and grateful to have a world class health facility for medically challenged adults and children right here in Hurleyville.  It's called the Center for Discovery.

Byron has been receiving excellent Physical Therapy, Occupational Therapy, Physiatry and Dentistry at the health center since 2012.

Today he had an excellent session with his therapist Lindsay on bike riding. Notice the two hands!

The center has an amazing campus with biodynamic farming practices to feed the folks who are in residence there. All of their buildings are Leeds certified which is the highest green building certification you can receive. 

They bought our friend Ajit Bond's house and turned it into another great farm

They have a very progressive philosophy about food - They have a Department of Nourishment Arts.  This is one of their trucks:

They are also renovating the hamlet of Hurleyville adding many exciting shops and encouraging others to join.

This is the Makers Lab which they hope one day will be the largest manufacturer of 3D printed prosthetic limbs.  Many of their residents will work here.

The old Sullivan Dairy - they like to use nifty colors.

A great bakery and market

Future sight of a large movie theater and dance studio.

These two buildings will house an art gallery and store

Cool church building

And a nice GastroPub! - The Pickled Owl

Byron insisted on being in ALL the photos!

Summer

Many people have written asking how Byron is doing after his second seizure and I’m happy to report he is doing very very well.

Twice a day he takes an increased dose of seizure medicine, which seems to be working.  At first I thought there were no side effects but with the increase I have noticed a few minor ones.

-He’s a bit more sensitive to lots of stimulation; noise, many things moving around at once (e.g. groups of kids), light.

-His patience is shorter; he seems to get frustrated more easily

-He’s a bit surly and grouchy at times.  This could be a factor of his age or the medicine, or both.

Summer will be busy and wonderful with 6 weeks of summer school, Saturday afternoon camp and daily morning activities at the beautiful Ashram where Bob and I both offer Seva.

Byron has an amazing life, surrounded by people who love him.  He has lots to do, plenty of food, clothes, toys and he is safe.  With all of the challenges children are facing around the world right now – we are so grateful for the life we lead, minor challenges and all.

I was much calmer than last time...

Byron had another large seizure this morning.  I went into his room at 7:30 am surprised he wasn't up.  Earlier, at 4:30 am, he woke me up to say he really had to go the bathroom  - TMI but you can imagine what that meant.   

When I entered his room at 7:30 his eyes were locked to the left, his left hand was shaking and he was mostly unconscious.  We gave him the emergency Diastat as we were instructed to do but it didn't work.  So I called 911 and we ended up at Catskill Regional Medical Center.

This Sullivan county hospital has had a bad rap over the years for being disorganized and not particularly sanitary.   Today everything was gleaming, bright and renovated.  The Emergency Room lobby was pleasant and spacious.  Everyone was very nice and check in was WAYYY faster and more organized then in Westchester.  Once again I am very impressed with the medical options up here in our little county.

The Emergency Room doctor was young and very nice.  By now, about 8:15 am,  Byron was semi-conscious.  All told he must have been in the seizure state for at least 60 minutes. 

We reached Byron's neurologist in Westchester right away (who by the way we just traveled to see yesterday with my glowing announcement of no new seizures and everything was going fine!)  

Byron's neuro increased the dosage of his medication and we all agreed that abdominal symptoms seem to accompany his seizures.  Any more middle of the night bathroom trips and I'll be sleeping in his room!  It is really good to catch these things right when they start.  I want to be on top of that because it would be better if the Diastat had worked and we had managed it at home.

The hospital released us pretty quickly, about an hour after we arrived, and we are home now.

Byron is sleeping like a log, much more groggy than after his first seizure.  

This is life now, another "new normal".  Byron's ophthalmologist once said to me when I was complaining about all the medical visits - "You must play the hand you're dealt"  And I am,  and we are getting better.  I was much calmer than last time.

Byron will be his old self soon - right as rain

Video of Seizure

I was asked by Byrons' neurologist to capture a video of the seizure.  Here is a small sample.  I publish this for those parents who may have children at risk for seizures, or teachers, so that they can see what one looks like.

Epilepsy

On Wednesday I received a call from Byron's Neurologist.    Byron has epilepsy.  Of all the diagnosis(plural?)  this one hit me especially hard.  When she said seizure activity, frontal and temporal lobe, medications twice a day I felt like I was sinking.  I actually had to mentally will myself to rise up again from this sinking, sinking.  And I did.  I rose up and listened attentively, asked all the necessary questions, and here we go - again.

I was actually at my mother-in-law's house in Florida when I got the news.  I lost my own mother several years ago.  Of all the times one needs a mom, it's when bad news comes by phone.  I was  very glad I was with my husband's Mom, a great Mom.  I was very pleased with her empathy and her listening.

And what of Bryon?  It's strange to speak of my own grief about this when it's his diagnosis.  Byron let me know that as long as he doesn't have to go back to "that hospital" he's fine. And off he goes - happy once again.  These catastrophic (to me)  things are of little import to a happy 8 year old.

Just as a side note - the bill came for the last hospital visit.

Helicopter - $54,000
Hospital - $35,670
Ambulance  - $8,700
Doctors - $9,000 +

We are so blessed to have excellent insurance with no co-pays due to Byron's supplemental medicaid.  I send blessings to all the families of sick children who are not as fortunate as our family.  To add catastrophic bills on to everything else a family with a sick child has to handle -  would be just too much to bear.

Byron and the Easter Eve full moon rise

Ambulatory EEG

Byron met with his neurologist last week and she ordered an ambulatory EEG.  This means that Byron can be monitored at home during all normal activities (and sleep) for 24 hours.  This is so much better than doing it in a hospital for days!!

Today we went to Middletown to get hooked up.  It was easy but Byron did not enjoy it much.

Now that we are home, Byron needs to do all his activities in front of a video camera that travels in a suitcase.  So not only does he have his little power purse with him at all times, he is constantly on video.  We are also to keep a written log with times of all activities.  If he does have a seizure while he is being monitored, there is a button to push on the little purse.  This is exactly like the hospital protocol but again, so much easier to do at home.  

Tomorrow afternoon we return to have it all removed.  Then in a week we get the results.  If the neurologist sees a lot of activity she may choose to put him on medication.   

He's a brave and tolerant boy.