Like most mother's Aubrey's mother knew deep down inside that something was not right in the winter of 2007. The only
problem she had was getting someone to listen to her and understand what she was seeing the devestating behavior her child
was demonstrating.
At first Nicole thought to herself "maybe this is just a strength issue." Aubrey was only four months old at the time
and not as strong as the other kids her age. Thinking to herself about how Aubrey rolled over for the first time at two months
and then after awhile she never did it again. Finally, January of 2008 Nicole decided something was more than wrong and it
was time to bring it up to her pediatitian.
Like always for precations they scheduled an EEG test to see what was happening if they really were seizures or if it
was just a typical "spasm." The EEG test was done and it ended up coming back "normal," or so they say. Of course Nicole was
more than happy to hear the great news that everything was "normal," but it still didn't feel right to her. Aubrey was now
walking around in her walker and growing with every stride everyday. At five months old Aubrey still did not roll over, never
reached for toys, didn't hold her own bottle, and worst of it all when she looked at you it was as if she really didn't know
who you were.
When Aubrey would be in her walker and these "spasms" would happen she would litlerally slam her head into the walker
tray in front of her. This more than worried Nicole and at that point she demanded a second opinion.
Once again she called up her pediatritian and explained to her the abnormal behavior her child was demonstrating and
continued to tell her something was wrong. To be gentle about this situation the doctor basically brushed Nicole off as if
it were no big deal and told her it was something that Aubrey would outgrow. Those words made her even more determined to
get to the bottom of it all and figure out what was going on with her little girl.
After awhile of fighting for what Nicole knew was not right she got referred to another doctor. Another pediatritian
but had some background in Neurology at least. Now this doctor had an idea of "Infantile Spasms," but never had a patient
with that diagnosis. He at least got Aubrey into University of Shands of Florida a lot faster than what her first doctor had.
It was April 21st 2008 when Aubrey had her EEG test at University of Shands of Florida. Nicole did not know what to expect
with the test being done there only because she had never been there before but had heard nothing but great things about Shands.
The day of Aubrey's EEG test at Shands Nicole had gotten a call from the doctor with some devastating but relieving news
that she had ever heard. Her daughter indeed did have Infantile Spasms and she was being admitted immediately for treatment
the next morning.
To make a very long story short Aubrey is now two years old and in the search for a cause for these seizures Nicole has
learned so much more about what is going on with her child. Aubrey has now been through four rounds of ACTH and each time
the seizures do go away but come back some short time after.
The new journey that Aubrey and her family are about embark on is Ketogenic Therapy. Aubrey will start this as of October
26th, 2009. For many of you that may not know about this "diet," it is very intense. They do not understand why it helps kids
with seizures but it just does as some doctors would say. It is very high in fat and very minimum carbs. are aloud. If you
research on this therapy you will come accross a lot of success stories as well as disappointing stories. Remember, not every
kid responds the same to treatment. What may work for one kid may not work for another.
Nicole feels
that awareness should be made about Infantile Spasms so it does not go undiagnosed.
