Logan
Andrew was born October 1st, 2004. He delivered on his due date and
there were no complications with the pregnancy or delivery. As far as
everyone was concerned he was a healthy baby boy.
For
the first 6 months of Logan's life things seemed to be "normal." He was
progressing at what pediatricians regarded to as being on track for his
age. He was gaining weight and inches and again, as far as everyone was
concerned he was doing fine.
On
March 28th 2005 my wife
noticed a funny movement our son was making. She described it as ever
so subtle, where his arms went to his sides, his knees came up to his
chest, and he made a "funny face". After discussing this we both agreed
she should call the pediatrician. The nurse on the phone stated that it
sounded like constipation, that he just needed to pass a bowel movement
and everything would be fine. This made sense to us as he hadn't had a
bowel movement in several days. Logan was nursing and my wife had eaten
a few
things over Easter that were not normally in her diet. In our opinion
based on what we knew she ate, and the fact that Logan hadn't had a bm
in a few days this made perfect sense. We gave him a little prune juice
and everything came out fine. The next day she called me at work and he
was still doing these funny movements and they were becoming more
frequent, and more pronounced. She called the pediatrician again and
they explained that maybe he needed to pass more and was "pushing" to
make it all come out.
After several days of these funny
movements the intensity stepped up. Logan would have 5-10 of these in a
row that were 3-5 seconds apart. He began having multiple episodes
throughout the day (clusters) and the arm, leg, and eye movement become
more pronounced. At this point we realized something was wrong. We
video taped the movements and I took them to my medical director at
work. I asked him if he thought this was constipation. He stated that
he didn't think it was, and suggested we get Logan to a Pediatric
Neurologist.
We were able to get an appointment that very day at
Phoenix Childrens Hospital. As luck would have it Logan started in with
his movements while we were in with the Neurologist. She stated that
she thought she knew what it was and wanted to run a test (EEG). Logan
was hooked up to the machine and 35 minutes later we were told
that he had irregular brain wave patterns (hypsarrhythmia) and it was her
opinion that he had Infantile Spasms. The neurologist stated that
it's a form of epilepsy and can sometimes be cured with medication. She
wrote a prescription for Topamax and said come back in two weeks.
It
wasn't until we got home and searched the internet for IS (infantile
spasms) that we learned how serious this was. We spent the next 4 days
researching and getting Logan in front of a variety of people for other
opinions. After coming to the realization that he was very sick
and needed to begin treatment he started on Topamax 4/7/05.
The day
before Logan started Topamax he had 4 clusters with a total of 103
movements. (1 movement = arms going out to his side, knees coming up to
his chest, and his eyes rolling back into his head.) He started on a
small dose of Topamax and had a significant change in a short period of time. On
the 6th day of Topamax he was SF (seizure free) for a total of 4
days. The next day he had 1 cluster with 17 movements, the
day after that he was SF, and the day after that he had 1 cluster with
3 movements. From that point the seizures increased to 110-140
per day.
The Neurologist at Phoenix Childrens Hospital
was very nice but we did not feel she had the experience we were
looking for with IS. After a lot of research and phone calls we were
able to find a Dr @ Barrows Neurological Hospital who specializes in
IS. He agreed to see Logan and agreed that the treatment he was
receiving was not aggressive enough. This was a turning point in our
situation.
Dr Jong Rho is an expert with regards to IS. He spent countless hours going over
statistics, listening to our concerns, and discussing what options we
had. He stated that the Gold Standard Treatment for children with IS
similar to Logan's situation (developing fine up until seizures started
) was a drug called ACTH. It is a steroid that is injected into the
child's leg. He went over all the possible side effects (see Treatments/Medications) and discussed what we might expect over the next several months.We
were familiar with ACTH as we had read about it when he was originally
diagnosed. We both stated at the time that we would never give him that
drug.
After watching him go through 100 plus seizures a day
our thoughts changed. His first injection of ACTH was on 5/5/05. He was
admitted into the hospital for the first 3 days of injections (they
want to make sure there are no immediate reactions, and they also want
to make sure the parents are comfortable giving the injections.) On May
10th 2005 Logan was SF and has been since. He continued with the ACTH
until 7/1//05.
Logan was supposed to have stopped the
injections on 6/20/05 but due to contracting the rotavirus while @ UCLA
Medical Center for testing, he became very ill and ended up in the PICU
(pediatric intensive care unit) @ Phoenix Childrens because he went
into acidosis. After he was discharged from the hospital our Dr
recommended switching from Topamax to Zonegran (another seizure
medication) as one of the possible side effects of Topamax is acidosis.
Logan was weaned off Topamax, started on Zonegran and ACTH was extended
for another 11 days.
Once the injections were stopped we had him
assessed for developmental progress. He was put 4 to 5 months behind
developmentally.(at the time was 9 months old) Before all of this started Logan was able to sit
up (when we placed him sitting), roll over, smile, and babble. 4 days
after the first group of seizures he stopped smiling and doing most of
these things. (this was before he was started on any medication). On
July 1st 2005 he couldn't do any of it. He was very big from the
steroids and had a difficult time keeping his head up when we laid him
on his stomach. (see Treatments/Medications page).
He started
physical therapy, occupational therapy, and speech therapy the end of
July 2005. Each session is one hour and is done in our home. It
was several months before we saw any major developments. He started
smiling at us again, babbling a little and trying to roll over. In
October he started to army crawl (just using his hands to crawl) and
then learned to push himself into a sitting position. In November
he started to crawl on his hands and knees and was pulling himself up
to things.
As
of December 2005 he can crawl pretty good, pull
up to everything, is attempting to stand without holding on to
anything, he says mama, dada, hi, claps, and will walk if
you hold his hands. For the first 6 months of Logan's life he didn't
sleep more than 4 hours at a time. After IS it was more like 2-3 hours
at a time. In November he slept for 8 hours (first time in his life)
and has been doing much better.
In
hindsight there were things that we
noticed, or comments people made that now make sense with regard to the
diagnosis of Infantile Spasms. For example after he was a few months
old people always commented on how "mellow" he was, and how he was such
a good baby. That most kids his age won't just sit still and not be
concerned about their surroundings. He startled easily and we noticed
he didn't make eye
contact with us often, that even when he did he would look away shortly
after. His focus on things just wasn't that good.
We are hopeful that Logan will be one of the "lucky ones" and beat this
diagnosis. There is not a day that goes by where if he so much as makes
a funny movement or looks at us differently, our hearts skip a
beat. We are thankful for each day and try not to worry about tomorrow.
December 24th 2005. Logan looking for his presents.
(Page 3 Treatments/Medications)
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