Charlotte had seizure #7 on Aug. 19th.
Anna (age 12) and Andie (age 5) were at my house playing
with Charlotte when it happened and alerted Memaw (my mother, Sherry). I am so
thankful for the little guardian angels watching over my Charlotte. I remember
myself around that age, and some of my friends; none of us would have been nurturing
enough to even humor the idea of spending time with a 1 year old baby! I can’t
say enough nice things about the little girls that come over to play with
Charlotte. They are so sweet, always giving way to Charlotte; playtime is
ALWAYS about her, not them. They are so good for her and to her! This duo helped get C from toddling around on
her walker, to walking on her own in a matter of hours. They have taught her
the difference between colors and C can point out her primary colors if
asked. C went from not really knowing what to do at play time, to making up
some of her own games with me, once the girls have gone home. They delight in
teaching her new things and words. Anna knows as well as I do when Charlotte is
hungry, tired, or wants something. Anna can understand more of Charlotte’s vocabulary
than I can and even helps to clue me in on what C is trying to say to me. Anna
has a natural tendency toward nurturing and patience. She will make an
excellent mother herself one day, or nurse or teacher. She “gets” kids, far
different than me at the same age. Heck I still have a hard time “getting”
kids. I am too analytical sometimes, it’s the Chemist in me. hahahhahaha While my mom and
grandmother are great at watching C while I am away at work, they just can’t
play with her like the kids can. About the time C began going mobile, I started
praying that “something” would happen to help C build on her mobility and learn
new things. I wanted something to foster her natural curiosity and intelligence. I wasn’t sure exactly how I wanted that to happen; just that C would be in an environment
to foster her quick cognitive development. These little girls are the answer to
some of my prayers. Memaw and Momma June are always here with the kids, but C
just doesn’t learn from Momma June and Memaw like she does Anna and Andie.
Anna is 12 and will be approaching her teenage years here
soon. I know it is a matter of time before the fun of teaching someone else new
things is going to wear off, and the lure of “teenage” things are going to
become more enticing. I was 13 once too. I have strategically been popping Anna a $5
bill as often as I can to keep her interest.
I have digressed on my story…..so Anna and Andie were playing with
Charlotte and they were behind my couch were Memaw couldn’t see them. I didn’t
see this seizure, so I am going on what I was told. From what I know, Charlotte
was walking behind the couch, using her walker when she went down. It was hard
for Anna, or my mom, to tell if the seizure was caused by the fall, or the fall
by the seizure. Charlotte goes down and Anna immediately recognizes that she is
having a seizure and tells Memaw. Memaw might be getting a little older and
slow, but when her grand-baby is hurt she jumps into action. From what I know,
this seizure progressed similar to the last one. By the time Memaw had been
informed of the seizure, got up, picked up C, took her to her room , laid her
on her changing pad, prepped the emergency meds; Charlotte had come out of her
seizure. Total 1 min tops. Momma said, “it was really odd, she came out of it laughing”. Memaw
also reported that during this one, C seemed like she was trying to focus on
her and maintain concentration. During most of her other seizures her eyes are open,
but it is pretty obvious no one is home. Memaw said that C was doing her best
to follow Memaws movement and remain conscious through her jerks. No emergency meds were given
and after about 10 mins of some wobbly weak legs, she was back to playing with
her friends like nothing ever happened.
The little girls stayed at my house several more hours
playing with Charlotte. I am so thankful that those little girls can see C for
the fun little girl that she is, and not her seizures. They were not scared or
freaked out, they patiently waited for C to regain her composure and just went
right back to playing. It makes this little worried Momma's heart smile.
The next day I put in a call to Dr. Fulton to let him know
that C had another seizure. We had got back her blood work from her last
seizure and found that her Keppra levels were only at 31. Not really that high
when compared to the dose she is taking. After the last seizure, Dr. Fulton
told me that we had a long way to go before she reached her theoretical limit
on Keppra. Even though C is taking 50%
more than an adult dose of Keppra, she is an infant, and infants are
notoriously bad about absorbing med (or really anything for that matter).
Keppra dosage increases linearly so if
she is at 30 now, and she will top out at 50, we have some play with her
dosage. Before even informing the Dr, and knowing this information, I went
ahead and increased C’s Keppra dosage. Being a Chemist, I do linear
calculations and regressions ALL DAY, so I knew what I was doing and had my Dr’s
consent before I just randomly went and started giving my baby a higher dose. I still haven’t spoken with Dr. Fulton directly
since this last seizure (I keep missing his call), but per our last
conversation, the plan was to keep increasing her meds until she reached the blood
saturation limit of Keppra. Preemptively,
I asked him what happens once we have reached her limit on Keppra. He told he
that once we have reached that point, and she is still having seizures, we are
going to try another medication. The next med is not approved for use in the US
so we have to order it from the UK through the Charlie Foundation. It is the
ONLY MEDICATION to be double blind tested to work for infants and kids with
SCN1A seizure disorders. So, being a planner, we have a plan and I am happy. Doesn't sound very easy, but that is fine, I will wade though some rough current for my baby girl!
I truly believe that while C’s seizures haven’t decreased in
frequency, they have decreased in severity because of her new diet. Since
starting C on her MAD (Modified Atkins Diet) diet, she has been able to come
out of her seizures on her own. To an Epilepsy mom, this is BIG NEWS! Our Dr.’s are less
impressed because they want C totally seizure free, and we do too, but for Mom
and Dad, this is an improvement! Until now, Case and I have been worried sick
that C would have a seizure at night (proven by seizure #5), and would seize all
night long and lead to SUDEP (Sudden Unexpected Death in Epilepsy). C is at
high risk for this and has led us to all kinds of weird measures that most
parents to 1 year olds aren’t employing. Ask me about my 3 fail safes. LOL. Lord help. :) Neither Case nor myself have slept well in MONTHS because of C’s status (lasting more than 20
min) seizures. All of those seizures ended in medical intervention. Every hard
breath over the baby monitor and one of us wakes to go check her. One of us has
been up every hour of the night, for nearly a year. Knowing that we have had 2
seizures that stopped without medical intervention, he and I sleep so much
better. Of course we don’t want our daughter to have seizures, but being able
to come out of a seizure on her own is such a big improvement from the previous
months. We are just happy that she is now managing and we take it one day at a
time.
C has taken well to her diet and loves her meat, veggies,
cheese and occasional fruits. Mom has benefited as well and lost 5lbs in the past month. I don’t
want to subject my baby to something I wouldn’t do myself, so MAD diet, here I come. :) C and I often share plates so I have to be
good for her! C has 3 of her 4 molars coming in right now. So far, she is happy and healthy. Lots of play time and learning time. :) We delayed her MMR vaccine because her 1 year appt. was only a week from her previous seizure. She is growing fast and while she may not ever "out grow" this, she will at least be able to communicate with us when she doesn't feel well. Thank you Lord for the strength you have given Case and I and guiding C's diagnosis. I know we wouldn't be where we are today without you. Thank you to my special guardian angles, Anna and Andie! :)
