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The Travels of Brainstorm the First, the epilepsy awareness bear!
1. The Achenbach Family, Lansing, Michigan
September 2, 2002
Mom FINALLY let MacKenzie play with Brainstorm today! By MacKenzie: We took our medicine
together before breakfast, took a nap in the afternoon, and then Brainstorm watched me take a bubble bath before bed! He really
wanted to get in too. I almost forgot to give Brainstorm his medicine tonight, but Mom reminded me. Brainstorm slept on the
foot of my bed so that I wouldn't squish him if I rolled over or had a seizure in the middle of the night.
September 3, 2002
Mom brought Brainstorm with her to pick me up from school today. So many of the other kids asked me why
I brought my teddy to school. I explained that this was not just a teddy, he was "BRAINSTORM" and only people that have seizures
can have him come visit their houses! Brainstorm is going to spend a whole day at school with me one day this week. Brainstorm
went to the YMCA with us tonight. He had a LOT of fun playing in the Kids Gym with me! Mom took pictures of us playing together
in the tunnels. I didn't forget to give Brainstorm his AED's tonight!
September 4, 2002
Brainstorm went to the dentist with me today! Neither one of us had cavities. We both had fun riding in the chair!
September 9, 2002
MacKenzie really enjoyed her visit with Brainstorm. He was here to help her through some rough times at school
and at night when she had her seizures. We are sad to see him go today, but excited that he will be visiting so many other
families! Safe travels Brainstorm!
2. The Roberts Family, Oxford, Indiana
September 11, 2002
Hi Brainstorm arrived during the day and is visiting with Derrick's grandma. Derrick returns from school and spends the evening watching
tv with Brainstorm. Derrick got a haircut from Dad and Brainstorm watched. They took their meds together. They head off to bed.
Sept 12, 2002
Derrick and Brainstorm get up have breakfast and medicines. They get ready
for school. Derrick takes Brainstorm for a ride on his bus. Bet the other kids really enjoyed that. At school
they go to library. Brainstorm isn't allowed to go upstairs to art class. So he
takes a nap while Derrick goes to art. TV 18 comes to the school to
interview Derrick and I about the traveling bear Brainstorm. Derrick introduces Brainstorm to the class. The class
loves to listen. They ask great questions. They are a hit. Derrick
has two small seizures in the morning, and Brainstorm and he go to lunch and recess. They
do schoolwork in the afternoon, and then come home on bus, and have a snack. They watch TV.
Derrick starts his homework. They watch themselves on TV. Its a good program.
Finish homework and hug and have supper, medicine is given by mom. At 9:00 they go to bed hugging. Mom listens
to the new again at 11:00, Brainstorm and Derrick are on it again. Its a better program this time. They also tell
about the bear returning to area but not sure when. And that Brainstorm is so popular 4 of his brothers/sisters are
joining him in about one month. Derrick smiling very big, tells the TV world, " I love Brainstorm"
hugging the bear to his chest very tight. They end the show with the weather and the
phrase is " Mike Prangley is dealing with brainstorms of his own in the weather."
September 13,
Brainstorm slept in while Derrick went to school. But Derrick gave him his
meds before he went. Derrick and Brainstorm watched pokemon and other cartoons after
school.
September 14
Brainstorm and Derrick got ready for the soccer game. Brainstorm
had a great time watching Derrick play. It was a cool day, so the heat didn't get to
either one of them.
Then we went to Taco Bell for lunch and shopping. Derrick and
Brainstorm watched some movies and stuff. Then they went to bed.
September 15
Derrick and Brainstorm took their meds. Then they had a hugging contest, to see who could hug the longest. Hmmm, don't have any idea who
won. We got ready to go for Derrick's VEEG tomorrow. Brainstorm is going too.
September 16th and 17th
We are at IU Med center 7:00AM on the dot. Have to wait 1 1/2 hours till they are ready
for us. 9:00 all the wires are in. Brainstorm watches. Buzzer's going off all day. In the evening itching gets bad. Itching, itching, and itching. They give
Derrick Benadryl everyone claps. Bedtime.
Up next morning Meds & Breakfast. Derrick & Brainstorm slept off seizure. Then we
have company, Grandma Dyer, Aunt Diana, Aunt Dee and 20 month old cousin Lance. Aunt Diana helps mom take a couple of pictures and they leave. Just before
they leave we hear were heading home. Itching was bad more benadryl. Mom thinks this is why we
are leaving. Enough activity too.
Septemer 19th
Brainstorm is leaving today. I'm happy he is headed to a little girl who can hug him and enjoy
him as much as I have. I enjoyed having Brainstorm # 1. Derrick
Mom note: Derrick was very honored to have been the second child or person to have the very 1st Brainstorm. Everyone who
met Brainstorm heard about him, and why he is around. And that he visited Derrick second. Thanks
for a great idea and letting this happen when we needed him. No one knew when this started it could
happen at such an appropriate time.
The Searcy Family, home of Ashley......
September 23, 2002
He’s here, he’s here, he’ s
here!!! Brainstorm arrived safe and sound around 11:00 am. Too bad Ashley was at school when he arrived, but he sure got lots
of hugs and kisses when she saw him! They ate lunch, took a nap, Ashley took her afternoon med, and played with her sisters.
After dinner, it was bath time, med time, story time, and bed time.
September 24, 2002
Brainstorm quickly adapts to our routine. Ash
and Brainstorm slept in a little while this morning. Ashley had a lot of seizures in her sleep again – the normal for
her. They ate breakfast, then took their meds. I kept Brainstorm entertained while Ashley took her morning nap. We saw Ashley’s
ENT this afternoon. They took xrays of her throat but she didn’t want to cooperate so they only got one good picture.
Her tonsils and adenoids are red & swollen. The doctor thinks they’ll need to be removed because they’re causing
sleep apnea, which may in turn be causing more seizures. He said she has a sinus infection but gave us the all clear for the
MRI and PET. We’ll be seeing him again in 3 weeks for further assessment. Then home, dinner, bath, meds, & bedtime.
September 25, 2002
Ashley kept Brainstorm awake most of the night
with seizures – probably because of the sinus infection which is more prevalent today. Brainstorm is keeping his distance
so he doesn’t get sick too! Brainstorm and Ashley ate chocolate donuts for breakfast this morning – YUM! Med time,
and school time for Ashley for a few hours. Brainstorm watched me wash dishes and helped fold the laundry. After lunch we
played Ring Around the Rosie, and they took a nap, ate dinner, read a few stories, took a bath, and bed time again.
September 26, 2002
Brainstorm and Ashley played outside on the swings
in the yard today.
September 27, 2002
Brainstorm went to visit with Ashley’s pediatrician
today. Finally got the last all clear from everyone for the VEEG, PET, & MRI starting next week.
September 28, 2002
Brainstorm comforted Ashley after a two minute
complex partial seizure late this morning. At least I think it was a complex partial – she was only partially aware
– her consciousness was definitely altered, but she wasn’t convulsing. Very strange. She slept most of the day
& Brainstorm watched over her.
September 29, 2002
Today was a better day. Brainstorm and Ashley
played games like Peek-a-Boo, Hide and Seek, and Ring Around the Rosie.
September 30, 2002
Brainstorm and Ashley are such sleepy heads this
morning! Another really bad seizure night. Ashley has speech therapy this morning – Brainstorm helps her practice what
she learned later in the day.
October 1, 2002
Up early for our drive to the Cleveland Clinic.
It takes a little over 4 hours to get there. Fortunately Ashley and Brainstorm enjoy the drive. We meet for the intake interview
at 2:30 pm after a slight mix-up with the scheduler – the woman won’t confirm the MRI appointment without a surgery
date – which we don’t have because Ashley is an unlikely surgical candidate. We got done around 3pm and headed
to Lake Erie, which was absolutely beautiful. Brainstorm and Ashley had fun playing in the playground of Headlands Beach State
Park. Later, we unloaded everything in the hotel room & went to Ponderosa for dinner. Then bath time, med time, and bed
time.
October 2, 2002
Brainstorm thinks waking up at 5 am is yucky and
I have to agree. We check out of the hotel shortly after 6 am. We’re to be at the hospital at 6:30 am for check in –
but we got lost and arrive at 7:15 am. Fortunately this isn’t a problem and we’re taken to meet the anesthesiologists
and Dr. Kotagal’s “fellow” Dr. Marcus. He asks us what is more important – seizure control or behaviors.
I’d say both are equally important, but behavior has to be at the top of the list for now. Brainstorm keeps us company
during Ashley’s PET & MRI. By 6 pm we’re taken to our room & hooked up to the VEEG by 9 pm. Ashley’s
Depakene dose is cut down to 3 ml. Brainstorm takes his med as usual and gets into a tickle fight with Ashley to cheer her
up.
October 3, 2002
Still no seizures during the day. Ashley’s
nocturnal seizures weren’t quite as bad. Brainstorm and Ashley watched tv for a little while then played with some puzzles
and read. Green Eggs and Ham, Ashley’s favorite book. We’re continuing the Depakene at 3 ml until morning. They
tried to do a sleep study, connecting everything at 9 pm. Unfortunately Brainstorm & Ashley wanted to have a pajama party
and didn’t go to sleep until well at 1 am. They were awakened at 5 am to remove the sleep study devices.
October 4, 2002
Ashley is completely off meds today – Brainstorm
is so jealous!
October 5, 2002
Still off meds. No seizures yet.
October 6, 2002
Finally starting to see seizures! This morning
I saw (and the nurse) 2 complex partial seizures, but the tech only caught one on the EEG. These were slightly different from
what she normally does. She had a GTC involving only her right side at 10:47 am lasting 140 seconds. She only stopped breathing
for a few seconds at the end – very mild compared to her usual seizures. Unfortunately the nurse on duty panicked at
such a “hard seizure” and administered Ativan ten minutes after the seizure ended saying she “wanted to
take the edge off”. Brainstorm and I were a little disappointed – not that we like seeing seizures – but
because they’re necessary right now. I fought against resuming the 3 ml of Depakene today as I don’t feel they
have sufficient data – data we need to rule our surgical candidacy.
October 7, 2002
Brainstorm wished my husband and me a Happy Anniversary.
9 years, hard to believe. All seizure activity stopped until 3:20 pm today with another complex partial seizure. I spoke to
Melinda, Dr. Kotagal’s nurse, about the Ativan situation & we’ve agreed to just let her go unless she clusters
or goes status, which she frequently does. So, hopefully she’ll have a few more & we can go home. Dr. Kotagal wanted
1 more seizure before resuming meds.
October 8, 2002
We’re going home today! This was definitely
a learning experience and Brainstorm and Ashley are definitely ready to go home. She had another c-p this morning –
which has been so weird because these are so unusual for her. I have noticed her seizures aren’t as bad & haven’t
lasted as long between seizures, & she’s recovering faster. She’s also been sleeping better, which is fortunate
for Brainstorm because he’s tired of falling out of bed! She’s also been more alert during the day, not taking
as many naps. She’s been so happy too! It’s amazing how “normal” she is under all that medication,
sad to say. She hasn’t been as moody or as violent with her behavior. I met with one of Dr. Kotagal’s partners,
Dr. Holland, who agreed Depakene is not a good med for her, so we’ll be starting Keppra today. We’ve found out
Ashley has a focal point in her right front temporal lobe and in the left hemisphere in the back – the exact location
to be determined – so surgery is not an option. We’re hoping for VNS if the Keppra doesn’t control her seizures.
October 9, 2002
Brainstorm thinks Ashley is funny today. She’s
had her first full 24 hours of Keppra and keeps falling down, a side effect. Hopefully she’ll adjust soon. She’s
also really tired so Brainstorm cuddles with her while she naps.
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