Saturday, October 22, 2016

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!!

Wednesday, July 20, 2016

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!

Thursday, June 23, 2016


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.

Tuesday, June 21, 2016

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


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


Going to be about 2:00pm. 

Monday, June 20, 2016

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

Wednesday, June 15, 2016

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.

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!