This is the story written by a friend about her son. I wanted to share in case anyone else deals with something similar.
Aiden
was born February 17, 2009. He weighed only 2 lbs and 10 oz. He is a twin and
they were born 10 weeks prematurely. After spending 10 weeks in a NICU he and
his twin sister finally came home. We had been warned that preemies would
develop much slower than full term babies. Everything seemed to be going just
fine with both babies and around seven months old Aiden began waking up all
throughout the night. He was easily consoled and put back to sleep, but he
would only sleep for about an hour at a time before awakening again. One night
after getting him from his crib, I walked into the kitchen to get his bottle
and noticed when I turned the light on that Aiden rolled his eyes upward. It
was SO brief and he only did it one time. I just thought that it was because
the light was too bright. The next day, we went to my parents house where my
sister noticed that Aiden rolled his eyes once while trying to wake up from a
nap. I thought that it was just because he was sleepy. But, that same afternoon
he was sitting in his bouncy seat and he rolled his eyes again. This time he
did it more than once. Maybe three times, but it was enough for me to call and
speak to a nurse at his pediatricians office. I told her that I thought he may
be having some sort of seizure. She had the pediatrician return my call that
evening and she wanted me to bring him in the next day.
We
took him to the pediatrician the next day and she assessed him and told me that
she wanted to have an EEG done to see if it is some type of seizure. He was
scheduled to go to Arkansas Children's Hospital the next week to have an EEG.
After leaving the pediatricians office, we left to go run a few errands and
while we were out I looked at Aiden who was now constantly rolling his eyes
upward over and over again. I rushed him to the ER at Arkansas Children's
Hospital. We were evaluated by what felt like ten different residents before
they informed us that they were going to admit us to neurology and have him
hooked up to the video EEG. We spent that night and the next morning waiting
for someone to come speak with us and tell us what was going on with our sweet
baby boy. As we waited the eye rolling had become more frequent and now with
every eye roll his shoulders would pull in toward the center of his body. That
morning we met our neurologist for the first time. He walked in and told us
that he had been reviewing Aiden's EEG and he believes he has what is known as
Infantile Spasms. He had an abnormal EEG rhythm known as hypsarrhythmia. My
husband and I immediately began questioning what this was and what was going to
happen. We were told that this is a devastating seizure disorder that causes
severe brain damage. With each
seizure/spasm, brain damage occurs. He
would more than likely never walk, talk, hold his head up, or feed himself. The
prognosis was guarded at best. The neurologist informed us that there were only
two drugs that were used in the treatment of IS. Vigabatrin, a drug that had
been used for over twenty years in Europe, but had only recently become
approved in the United States due to its risk of peripheral vision loss or
ACTH, which had multiple side effects and was way more expensive. So, after
taking this all in, my husband and I decided that we would try the Vigabatrin.
They had the medication ordered and shipped to ACH overnight. He started the
medictine the next night. While waiting for the medication to arrive, they had
an MRI done to rule out any brain abnormalities and checked him for tuberous
sclerosis. They ran multiple lab tests and all came back normal. Over the four
days since his seizures were first noticed he had increased to about ten
clusters a day with each cluster having approximately 15-20 seizures. After
starting the medication, we were discharged from the hospital two days later
and told to return to our neurologists office in ten days for another EEG. Over
those ten days his seizures became less and less frequent. He started becoming
more alert again. (once he started having the seizures he was very lethargic).
We returned to his appointment in ten days to find out that the vigabatrin had
almost completely stopped the seizures. His medication was increased and we
were told to return in two weeks. He did not have any seizures that we were
able to notice after that. We went for his next EEG and were told that his EEG
was now NORMAL!!!
He
remained seizure free from November of 2009 until June 2010. In June his
neurologist decided that he would wean him from his medication. Within three
days he began having seizures again. We placed him back on the medication and
the seizures stopped. After that he did fine until December 26, 2010 when he
relapsed. His dose of medication had not been adjusted for his weight since he
had started on the medication. His weight had more than doubled since then.
Once we increased the medication, we were able to get the seizures under
control again.
The
seizures remained under control for the next two years. We saw his neurologist multiple times, and at
each visit he tried to convince us to wean Aiden off of the medicine. At each visit, we refused. In October 2012, Aiden was scheduled for
another EEG and to see his neurologist.
Dustin and I knew the neurologist would ask us to stop the medication
again. We talked about it and we both
had a "peace" about taking him off of the medication. Aiden was weaned slowly off the Vigabatrin
from October 13- December 10th, 2012. On
December 10th, 2012 he took his last dose of medication. I thought that I would be very nervous about
stopping the medication, but I wasn't. I
knew that God was in control. Aiden has
been medication free for one year and seizure free for almost three years!!!!!
Aiden
is now almost five years old and he WALKS, TALKS, RIDES BIKES, and many other
things we were told he would never do.
Aiden still has struggles, but he is an amazingly funny and sweet little
boy.
My
husband and I were devastated when we were told his diagnosis and prognosis. We
prayed that God's will be done and that no matter what happened to him that he
please not take his smile and laughter away. We are so thankful and so blessed
to have him doing as well as he is. We thank God everyday for allowing us to
watch our sweet baby boy grow and learn.
Thank
you to Everyone who was said a prayer for this sweet boy over the past four and
a half years!!!! We see the power of
prayer everyday!!
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