Wednesday, September 30, 2015

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!  

Thursday, September 3, 2015

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!

Friday, June 26, 2015


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.

Tuesday, June 2, 2015

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.

Sunday, April 5, 2015


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

Sunday, March 15, 2015

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.

Monday, February 23, 2015


Life returns to semi-normal.  Right now I won't let him out of my sight. Medicine at the ready I am watchful. I'm sure that will ebb with time. He's awfully cute!

Sunday, February 22, 2015



The only people in the world who bring hospital food home. But we saw the chicken nuggets come in as we were leaving and couldn't resist.  More later but for now rest. 


We are being discharged now.  What we heard from the neurologist was not great news but not unexpected.  From the EEG  there were some spikes on the right side so now there is a 50% chance that Byron  will have more seizures. But there is also a 50% chance he will not!  

We will not be medicating him right now which is great news.  We will have medicine in case he has another seizure longer than three minutes. 

This neurologist is wonderful. He said he was late this morning because he really wanted to go to church. I told him I thought that was a good thing and not to worry. 

Bob is sick now so we go home with a bit more than we came with but all in all not a bad outcome. 

Last Day - Fingers Crossed!

Byron is in better spirits today, a good night sleep and your own clothes can make a BIG difference.  

Byron's flu is very contagious so they have him in isolation.  Everyone who comes in wears a mask so we have only seen eyes on all of the staff.  But you can still see their warm smiles through their eyes and feel their care.

I am really hoping neither Bob nor I get the flu but its very hard not to exchange those pesky germs with this cute little guy,  Bob is starting to feel a bit wonky.

They just took Byron's lunch and dinner order which I'm hoping is not a bad sign.  Last night they only took breakfast.   We would love to go home but will accept what comes.

We have spent a bit of time in hospitals in the last few years and I have so much empathy for the long haulers.  I see them here in their really comfortable clothes and their grim smiles.  I have NO idea how they manage.  I know that the Ronald McDonald houses are life savers for these families. They have one right here on campus.  And it is in these times that  I really bless the iPad and tablet companies.  All the kids being wheeled around here on gurneys are watching movies or playing games.  I'm guessing it makes those long hauls much easier.

The neurologist will be in soon to read the EEG.  Then we will see...

Saturday, February 21, 2015


Byron had his EEG around 1 pm today.  He did a great job.

He made the technician laugh with his antics.  But now his hair has this Fab look from the glue.

Anyway - Byron is really tired, I can see it in his eyes.  It's not that easy to sleep here and as we moved our room at 1 am last night which was the second time they woke him from a sounds sleep (the first was for an 11 pm full Nuero eval with med students) I am hoping he will sleep well and long tonight.

EEG results tomorrow we are told and hopefully HOME!

Brief Update - Neuro

We met with the Neurologist at long last.  What a wonderful man.  He was kind and thorough.

He told us that in the last year they have discovered that there is only a 15% chance that kids with stroke will have seizures.  It's only 50% if they had seizures at birth, which Byron did not.

So given that the overall risk is small, the seizure could have been caused by the fever and flu.  He said that there is not a compelling need to put Byron on seizure medicines just now.   If he has another seizure without fever then we would begin a seizure medicine protocol. And if he were to have it it would be in the next year or two.

So now we wait and see and add another doctor to Byron's team.

Byron now needs an EEG here as a precaution and if his fever stays down we can leave tomorrow.

Waiting Waiting Waiting

We are in the area of Neurology called the "Theatre Neighborhood" .   This is Byron's room tag.

The pediatric floors are divided into neighborhoods.  I'm glad we got this one given my prediclictions!

All we are doing now is waiting for the neurologist to set us on our next round of tests, updates, results, consults etc.  Absolutely nothing has happened this morning except monitoring.  Byron's appetite is good, he is on Tamilflu, his fever is down and GOD BLESS the iPad!

I have been told the Neurologist is on the floor so fingers crossed!

Friday, February 20, 2015


50-60% percent of children with Hemiplegia develop seizures.  The seizures usually occur in the side of the Brain that had the stroke.

We always knew Byron was at risk for seizures.  When he was about 8 months old he was tested.  He participated in a three day video EEG in Syracuse . He was hooked up to monitors and had to stay in a crib for three days.  If I thought he was having a seizure I was asked to  push a big red button marked "Seizure " (aka panic) and they would mark that time on the video and the EEG.  In the three days we were there I pushed it once but it turned out it wasn't a seizure.  Just some excessive baby eye blinking.

Fast forward to today.  Byron will be eight years old on March 28.  Today at 1:00 his school called to tell me that Byron had a fever and a stomach ache and that I should come get him as soon as possible.
I brought him home and he immediately fell asleep on the couch. 

After a while he woke up and started staring.  I thought he was just resting so I ignored it.  After about twenty minutes I came back in and he was still staring.  I couldn't see his face because his blanket was covering his mouth.  Still I thought nothing of it. Another ten minutes and I checked on him again.  His eyes were open still.  I called his name, no response.  Now I was worried.  I ran over pulled the blanket off of him and saw that his eyes were locked to the left, his left arm was twitching and he was unresponsive.  He looked like he was having a full blown seizure.  And it must have been going on for over 30 minutes.

I called 911.  With Byron's history the local hospital suggested he be transferred via helicopter to Westchester Medical.  Bob and I were invited to drive there while Byron would be taken via the helicopter.  When we left Byron  was still unresponsive. This was almost 60 minutes now.

I know if someone is having a stroke, time is of the essence.  Was Byron having a stroke or a seizure or both?  No idea nor did they.  His locked eyes were concerning.

Bob and I drove to Westchester mostly in silence, except for my occasional sobs. I was experiencing a feeling I have never had in my life.  I have never really grieved per se, even in the face of the death of a parent or friend.  I think of death as a meaningful transition and God's will.  I have cried but not what I would call grieving; that heaving, aching wailing.  This was different. My feelings  were deep and visceral and a pain perhaps only a mother can feel.  I was a mess.  Whenever I spoke to anyone on the phone the intense pain and tears and grief would come again.

When we arrived at the hospital we saw our son's helicopter on the helipad.  Such a strange feeling, seeing the pilot, a stranger to us,  closing up the craft after carrying our precious personal cargo.

We knew Byron must be inside the hospital so we kept walking.  I readied myself for whatever we might find.  

What we found was an incredible joyous relief.  On the way to the hospital I asked everyone I talked to to pray, send good wishes, love, blessings.  My friends and family are really good at this.  THANK YOU! And all of their good wishes bore great fruit. As always, Grace abounds. 

Byron was awake!  Conscious, breathing, grouchy and really happy to see us.

Almost immediately after we arrived he fell asleep.

Now it was on to tests to see what caused all this - CAT scan

Lots of blood tests, doctors visits and on and on.  But boy was I happy to have Byron back.  It turns out Byron tested positive for Flu so that may be a factor as well.

Our friend Elizabeth came and brought some comfort food.  We found a hotel for Bob and I am doing the first night shift.  Tomorrow an EEG, more tests and a consult with an expert Pediatric Neurologist.  

By Midnight they said they would have a room for us.  I'm writing this while sitting on a spare gurney.  

Before Byron fell asleep he had this face.  

Back to his charming self.  What a day!!


Sweet Byron, who has lately been a very healthy guy, will be having a heart procedure called an ablation on Tuesday August 24. In February ...