Jax’s story

Jax
About 1 week before Jax turned 1 year old, I started noticing some odd
jerks and falling from Jax. They only lasted seconds and sometimes he
cried and sometimes he just seemed a little disoriented. He had had
many ear infections and a little cold. He was on antibiotics for
both. I would ask my husband if he had seen these jerks but he kind
of brushed me off. To me, it looked like a force came behind him and
pushed him. Let me just say, if I had known then what I know now, it
seems so obvious, but at the time, I really only knew about grand mal
seizures. I didn't really know that other types of seizures even
existed. Becoming more and more suspicious, I contacted the doctor
and tried to explain what I was seeing. They didn't want to see
him-only if he had a fever or was vomiting. I think I called 3x times
that week and no one wanted to see me. I even called the pharmacist
and asked about the side effects of the meds but they brushed me off
as well. I'll never forget when the nightmare really began. At the
time I was a full time 5th grade teacher and I had asked my daycare
provider to please watch for these jerks. It was a Wednesday and my
husband was out of time. My daycare provider said to me that she saw
what I was talking about and then he slept for four hours. That is
alarming in itself b/c Jax is not a sleeper. Finally, someone was on
my side. I wasn't crazy! I went home and called the
doctor-nothing-they didn't want to see him. I watched my baby play
with this little ball toy where he was putting in each ball and it was
counting with him and then it happened-this huge jerking motion and
then he was face down flat on the ground. That was it-that was the
moment that I grabbed him and took him to the ER. While checking him
in, he had two more seizures in my arms. I watched as the nurses'
eyes got huge watching his seizures and I knew something was really
wrong. The next few days are a bit of a blur as we were taken by
ambulance to a hospital about an hour down the road and they hooked my
baby up to more wires than I want to recall. I remember him screaming
and I felt so helpless...so helpless and my husband was still out of
town. The doctor diagnosed Jax by the 2nd day with Doose but not
without setting the fear in us that he may turn out MR or death could
even occur. He told us to go home and say our prayers. He started us
on keppra and that is when things went from bad to worse. Keppra
increased his seizures so those jerks and drops that I had seen here
and there that I questioned became constant-sometimes every ten
minutes-sometimes in clusters. I spent the days on my knees holding
him so that when a seizure occurred, I will be able to pull him up
before he hit the ground. Family members argued with me about not
being able to do that and be with him 24-7 and I just told them to
WATCH ME! I was angry. Nobody understood. The doctor made
everything worse. My husband who had just recently, like 2 weeks
before hand, lost his dad to pancreatic cancer, cried every time Jax
had a seizure. I was alone. If Jax slept, I researched and
researched-Found the Doose Syndrome yahoo group-that has been a
blessing and continues to be to this day. The doctor recommended that
our next step was depakote but again instilled the fear in us that it
was extremely dangerous for our baby as they really shouldn't give it
to kids under the age of 2. We prayed, we researched, we didn't know
what to do but we knew the Keppra wasn't the answer so we took a leap
of faith and said, "ok." There weren't many changes right away but
within a few weeks, we were down to about 40 seizures a day-still
having some clusters upon waking, etc. Seizures were triggered often
by unexpected sounds-the dog barking, the phone ringing, something
falling on the floor. I remember liking to have him in his car seat or
his high chair b/c I felt safe with him there like he wouldn't get
hurt. A few weeks went by like this and we started to meet with a
dietician, gathering materials, reading the book, and setting up to
enter the hospital to start the Keto diet. As the doctor increased
his depakote, he weaned the Keppra. I kid you not, this is what
really happened. We were about 3 months into this nightmare and like
the day it started, I'll never forget the day it ended. It was a
Thursday. We were suppose to enter the hospital the following Monday
to begin Keto. That Thursday they just stopped. I walked on my knees
all day in fear with him holding his little arm as he played and
nothing...nothing. We continued all of the doctor appointments, all of the
bloodwork, all of the EEGs and then started the new journey of needing
speech and learning to walk again, etc. At one point on this journey,
we had a scare where Jax got really sick-he only had 9 white blood
cells and they feared damage from the depakote or leukemia...neither
situation good! We spent 6 scary scary days in the hospital and went
through tons of tests but the bone marrow biopsy didn't find
leukemia-thank goodness and there was no evidence to prove that the
depakote had attacked his bone marrow so the doctors allowed him to
continue on it. We spent several months building up his immunity. We
were very much like hermits in our home and if we left for some
reason, Jax always wore a mask. The good news is that we went through
this very serious illness with an extremely high fever and the
seizures still didn't return. Throughout two years, I worked extremely
hard with Jax starting my own daycare at home to give him a "social
life" and an academic schedule where he could also learn from others.
All continued to go well and then we decided to wean the depakote.
Again, my husband wasn't home and I went through this alone. It was
an awful awful experience. He screamed and clung to me from the
moment he woke up until he fell asleep. He couldn't make any
decisions and there was nothing...nothing I could do to make him
happy. I cried right along with him and again just felt absolutely
helpless. It was awful but we did it and although we still have some
behavior issues, Jax has been dismissed from speech and he attends
preschool with 8 other kids. Academically, he is amazing!
Socially...well...we're working on that. He doesn't have a long
attention span and doesn't follow directions as well as the others but
I consider us a success story and I consider us very very lucky. We
only experienced 3 months of the horrific nightmare where I know many
have suffered years. I have to admit that I still fear they will
return but on a day-to-day basis, we live a very "normal" life.