I believe my last blog post was all about how much “FUN”
Charlotte’s birthday was…..time to catch you guys up.
Charlotte was a PILL on Sunday July 21st. We are
still trying to learn how her seizure affect her, but I *think* that about 15 hours
following her Valium dose, she gets something like a hangover. Since we didn’t
give her a dose of Valium until about 5pm on Saturday, she was so difficult
about 10am the next day. Clingy to the point that I couldn’t change my own
clothing, if I sat her down, she cried. I couldn’t distract her with anything,
I couldn’t comfort her with my words, she HAD to be touching me; ALL DAY LONG. This
is out of character for her on a normal day. Case couldn’t pacifier her and
hold her, it HAD TO BE ME. Usually, Charlotte actually prefers Case. My mommy
side LOVES being the one she wants to hold her; but at some point I have to
change out of my PJ’s or use the bathroom. A shower would have been nice. I
knew we had a long drive to Memphis the next day, so I was very worried how
much of a pill Charlotte was going to act.
Saturday (Birthday) seizures, Valium at 5pm. Sunday, MAD BABY.
Monday Charlotte wakes up, HAPPY BABY talking away at her purple bear in her
crib. We load up and had an uneventful car ride to and from Memphis (in 1 day.
That is a pretty big deal with a little guy).
On the Monday following her birthday, July 22nd,
we were due for another follow-up with Dr. Fulton at Le Bonheur. I can’t say
enough amazing things about Dr. Fulton and his staff! He worked with us and
allowed us to show up to his office on a day and time that he normally doesn’t
see patients’. Try that with any other doctor. Even more amazing, Dr. Fulton
did just ask us how Charlotte was doing and walk out of the room, spending only
30 seconds at best with you and your baby. NO. Dr. Fulton spent the next 4
HOURS with Charlotte. Let me say that again, 4 HOURS. He talked with us about
Charlotte’s development. He wanted to know all the new words she had learned.
He wanted to see her mad walking skills and let her walk around the room. He
checked her reflexes and talked to Case and I about our genetic study. He also
gave us a plan on what to expect next, if our current plan of action doesn’t
seem to be working. We talked about Charlotte’s diet, and her failed Birthday
party. The entire time he is just monitoring her. I noticed about 2 hours into
our visit that Charlotte was having some myoclonic jerks in Dr. Fulton’s
office. Having your kid actually exhibit symptoms while they are at the doctor’s
office is like winning $200 off of a lottery scratch off card. It isn’t unheard
of, but rarely happens. I saw one and said, “Oh my goodness, did you see that
Dr. Fulton?”, he said “yes, I have seen a few so far”. Case and Greg couldn’t
even see them or tell they were happening; that is how in tune Dr. Fulton is
with Charlotte. Utterly amazing! Once Charlotte settled down some and her meds
kicked in, she didn’t have any more myoclonic jerks that day. The rest of the time in the doctor's office we
spent getting mine and Case’s blood work done for our genetic study. We are
still hoping (although not super likely) that one of us has the same genetic mutation
that Charlotte has. We won’t get the results back for nearly 2 months. We also
discussed Charlotte’s diet and we now have a nutritionist who monitors
Charlotte. Charlotte is on a “Glycemic Index/Modified Atkins” diet for
seizures. All of Charlotte’s food has to be measured (for serving sizes) and
the carbs calculated. Meat, cheese, butter, heavy cream, and eggs are free
game. Most fruits and veggies have to be given with caveats. Watermelon,
bananas, pineapple, fruit juices, bread, rice, pasta, cereal, and Milk (the
toddler staples) are all cut from her diet. Right now, this diet is easy to
follow. Charlotte LOVES ham and cheese, and she isn’t old enough to have peer
pressure and outside influences. Now is a great time to try “diet therapy” to
see if it works, while we can strictly control what she eats. I now have a food
diary for Charlotte and I add up her carb intake every day. The Modified Atkins diet is WAY easier to follow
than the kids who are on straight Ketogenic diets. The Ketogenic diets for seizures are SO strict that you
even have to monitor what kinds of soap, lotions, cosmetics, ect that you use
since your skin can absorb carbohydrates. I hope we never have to get that
strict with Charlotte! Up to this point,
it has been over 2mo since Charlotte’s last generalized seizure and all I had
done was cut out her bread, pasta and rice! I was so hopeful that this diet
would be our ticket to a seizure free life!
Dr. Fulton increased Charlotte’s meds, and we scheduled a
follow up appointment.
We are on track to be seizure free for 3 whole months if
we can just make it to Aug. 9th! This would be the longest time EVER
she has went without a generalized seizure since she was 5 months old.
All was well until Tuesday July 30th. I was out
with lunch with Case. His phone rings, he looks at the number and then answers.
He is very serious and concerned. He doesn’t say ANYTHING at all for about 2
minutes. My anxiety starts to creep up, but I try to write it off as “work
stuff” since the call was on his work phone. Just to be sure all was well, I
grab my phone to make sure no one was trying to get a hold of me. I had no
missed calls. Case is still really quite for a phone call. I forget what he
said when he finally started talking to the person on the other end of the
line, but from the few words I caught, something had happened to Charlotte. My
heart sank, I was so hopeful it was his work calling him. Knowing the nature of
her seizures, I knew that by the time someone was in a position to call either
me or Case, the situation was either under control, or she was already loaded
up in an ambulance. My intuition was right. Charlotte had another seizure.
Case
was completely heartbroken. You could literally see the life come out of his
face and you could watch his heart sink before your eyes. He hung up the phone
and I was expecting to dash to the Pediatric ER, but that wasn’t the case.
Charlotte had a seizure, but it only lasted 30 seconds at the most, and the
seizure quit on its own. I could tell that it was all Case could do to hold his
emotional composure during lunch. He was taking this really hard. He wanted to
go home and check on her. I couldn’t, I have no PTO from work anymore. Case has
plenty of sick leave and he volunteered to go home and check on Charlotte. My
mom did a great job handling the situation. Charlotte was outside pushing her
little walker when she fell over and started having a seizure. My mom was right
there when it happened and scooped her up an wisked her into her nursery and
placed her on her changing pad. She grabbed her emergency meds and by the time
she turned back around, Charlotte was out of her seizure and looking at her
Memaw. Sherry wasn’t exactly sure what to do, so she gave Charlotte the emergency
Valium anyways. If Charlotte gets her emergency Valium and doesn’t need it, it
doesn’t hurt her, only makes her loopy. While she was loopy following the
Valium, she had fun the rest of the day playing with the neighbor kids and
walking around the house.
It sounds bad, and the seizures are horrible, but it could
be worse. I tried to remember what the Doctors were telling us, that should her
seizures get worse (more frequent, she doesn’t come out of them on her own, she
doesn’t respond to emergency meds, or they begin to interfere with her
learning) then we are going to have some serious problems. While Charlotte had
a seizure today, it lasted only 30 seconds. Her previous seizures all lasted 30
minutes plus! Charlotte was able to come out of todays seizure on her own, in
the past she had to have multiple shots of Valium AND Ativan to stop her
seizures. We were only 10 days shy of being seizure free for 3mo. When she had
her last seizure, they were coming every 2 weeks (and at $250 per ER visit, +
ambulance rides they were also becoming very expensive). Despite todays event,
I honestly feel that we are starting to find our right path for getting
Charlotte as seizure free as possible. I think that the low carb diet is working.
She only had enough “sugar stores” to fuel this seizure for only 30 seconds.
Your brain uses sugar as its fuel. If you have no sugar, your brain doesn’t
have any easily accessible fuels to use. Your body will then begin to burn fat
as a fuel source, but fat is much harder to access than quick easy carbohydrates. Without quick
easily accessible sugar to burn, your brain then becomes too lazy to try to
pull from your fat to feed the seizure. Seizure stops.They require a lot of energy and Charlotte ate like a pig following this seizure.
Once the seizure was stopped, Charlotte insisted on seeing “Day
day” (Dale), then resumed her happy normal (but loopy) self.
I called Dr. Fulton’s office and told them about the
seizure. Her Keppra level is increased to 15mL per day (a normal adult dose
maxes out at 10mL a day) and we are having blood work taken in a week to check
her levels. Infants are notoriously bad at absorbing liquid medications, so Dr.
Fulton suspects that we could throw as much of this stuff at her that we want,
but she would still only absorb a certain amount. If Keppra isn’t going to work
to control her seizures, we are going to have to try another medication. I am
not excited about trying a different medication. Nearly every other anti-seizure
med has some pretty rough side effects that I am not looking forward to. Prayers
all goes well.
Our Tally
1.
Dec. 29th (5mo old)
2.
Feb. 24th (7mo old –Said “Mama” in
the hospital for the 1st time during a blood draw)
3.
March 24th (8mo old – stood up for
the 1st time in her hospital crib)
4.
April 23rd (9mo old)
5.
May 9th (9mo old)
6.
July 30th (1 year old)
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