Many of the meds that she was on were in combinations of 2, 3 and even 4 at the same
time...since one medication was suppose to help the Tonic Clonic, one for absence, one
for Atonic, etc. Unfortunately, many of the meds...especially in combination....caused
HORRIBLE side-effects. So bad, in fact, that as a result, Haily was diagnosed with ADHD
at the age of 4. We later found an awesome psychologist who took away that diagnosis
and the meds that went with it, saying that Haily was simply acting her developmental
age (which was 2 at that time). It all made sense to us at that time! She was quite a
handful at that time....but nothing different than a 2 year old child would be. It was quite
a DUH moment for us!
Haily also had the VNS implanted in 1998 right after her diagnosis. After a 6 hour
surgery, the device was defective, about 5 months later they had to remove it and then
put a new one in. The VNS did nothing for her and we had the device explanted when
she was 10. We never attempted the ketogenic diet just because Haily is a very picky
eater and we didn't want to make her quality of life any worse...as that diet would have
made her miserable. I often regret that decision, but I think in the end, it would have
been more of a struggle than anything else and she has already had to endure so
much!!
In 2002, we met the Neurologist that would change our lives. I was extremely skeptical,
as no one has been able to help before. However, she would prove to be different.
When she entered the room and introduced herself she said something to me that I had
never heard in Haily’s short, at this point, 6 years of life…She said “what would YOU like
to do?” Taken aback, I told the Dr. that I was tired of all the medications, and piling one
on top of the next and then taking more medications to combat the side effects that the
first medications caused. I was concerned as I didn’t know what medication was doing
what, what was causing what and what was hurting what. I wanted to start fresh, to strip
all the medications off and start with one and see what would happen. Then, much to my
amazement, she agreed and Haily was put into the hospital for 2 weeks while a camera
and neurology staff were close by monitoring her seizures.
That was 5 years ago this past August and I am proud to report that Haily, though not
seizure free, is only experiencing A-Tonic and (occasionally) myoclonic seizures, and
has advanced developmentally to the 4 year old level, though in some areas like social,
she is at the 6 year old level. Last year, Haily began to read. She has target words that
they focus on (in, out, girl, boy, the, and basic target words like that).
Bringing LGS families together we can learn from one another and more importantly...
support each other!
Haily was diagnosed with LGS at the age of 2 ½. Over the last 10
years since the diagnosis we have been to the hospital more times
than I care to think about! Every time we went, I let them know that
Haily has LGS. The response every time was "what is Lennox
Gastaut syndrome?" Now onto medications....boy that's a fun topic
hey? It would be easier to say what Haily has NOT been on. She
has taken every medication except Carbamazepine, Carbatrol,
Frisium, Gabitril, Lyrica and Trileptal.
years since the diagnosis we have been to the hospital more times
than I care to think about! Every time we went, I let them know that
Haily has LGS. The response every time was "what is Lennox
Gastaut syndrome?" Now onto medications....boy that's a fun topic
hey? It would be easier to say what Haily has NOT been on. She
has taken every medication except Carbamazepine, Carbatrol,
Frisium, Gabitril, Lyrica and Trileptal.
