Showing posts from 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 – Ly…

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.


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.

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 …

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.


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 - h…

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 …


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!


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…


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!


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 jus…