Gabriel was born by c-section the second of
twins. His sister, Isabella, arrived a minute earlier than him.
During the pregnancy, it was noticed that she moved a lot more than
he did but everyone chalked it up to the fact that "it must just be
kind of crowded in there with two of them". The twins were born 6
weeks prematurely. Gabriel exhibited very pronounced "fits of rage"
from the minute he arrived, whereas his twin sister was very calm
and laid back. They both had apnea episodes so they had to wear
apnea monitors for 2-3 months. Gabriel was, for the most part, very
agitated. He would seem like he was starving, only to throw food
up. The doctors said he was suffering from reflux. We went through
the expensive formula and reflux medicine for several weeks and
months. At 8 months of age, we noticed his episodes were changing.
He kept throwing his arms back, similar to when you startle an
infant (thus comes the name "startle reflex"). But these were
different in that they came in clusters of about 7 or more in a 2
minute time span. We would notice his eyes roll up and he would get
very agitated and start crying after them. We videotaped the
episodes and showed them to his Pediatrician as well as the head of
the School of Medicine here, and they all agreed.... it was
reflux.
Finally we said "Fine... if it's reflux we'll go back to our
gastroenterologist in Lubbock and see what can be done". Upon
looking at our videotape, the gastroenterologist said "Those are
seizures!" and called in the top Pedi Neuro in this area. He also
agreed that they were seizures. After running a scope, they did in
fact find that Gabriel had a small hernia which was causing the
reflux episodes. Then they ran an EEG which showed Epileptic
Activity which was manifesting as Infantile Spasms. Upon running
the MRI, they found the tumor which they called a "Hypothalamic
Hamartoma". We have heard from several professionals in the field
that unless you know what you're looking for on the MRI, that a lot
of MRIs are read as normal, even though the tumor is present. As a
side note, they told us that the hernia was probably a result of
the turmoil that the seizures were putting his system through, thus
causing reflux.
They biopsied the tumor to make sure that's what they were dealing with and sent us home on ACTH shots for 3 months. The seizures stopped. They told us that if it was going to real its nasty head again, it would probably be around age 9 or 10. They also told us that it was in-operable at the age he was at, and that "possibly" we might be able to remove it at age 9 but that it was very doubtful. Upon researching the life of someone with HH, we found that it wasn't a very promising future and that he could possibly even be institutionalized when older if continued brain damage happened.
Following a trip to California in 2002, Gabriel started full-blown seizures. They still don't know if it was the extreme altitude change (from 5,000 above sea level to 1,000 feet below) or what. Some feel it was "just time" for it to happen. These seizures were very different since he was now older (age 9). He would seem to get very nervous and start giggling (gelastic seizures), start fidgeting with his hands and then scream "Where are you? I can't see you!" which absolutely scared us senseless. Then he would lean way back and his eyes would track from the left to the right, ending way above the top of his head. He would then sleep anywhere from 1-3 hours. He never soiled his clothes, but his stomach could be heard churning violently. The doctors here tried to control his seizures to no avail. They used Tegretol, Topomax Sprinkles, Depakote and Zonegran and they all proved horrible. We finally went back to the Pedi Neuro who initially found the tumor and he put him on Keppra. Then he gave us news that would forever change our lives, and Gabriel's. He said that there was a new surgery that had been perfected in Australia that could remove the tumor and give Gabriel a chance at a normal life. We were thinking "Australia?? Do we dare??". But then he said that this same doctor had trained Harold Rekate in Phoenix, AZ to do the same surgery and that he's had incredible results. Before we knew it, we were booked for our appointments and subsequent surgery at Barrow's.
Gabriel went under the care of Dr. Rekate during surgery on March 30, 2005. Dr. Rekate was able to detach and remove all of the HH that had inhabited the 3rd ventricle space, by the trans-colossal approach. Upon arriving home, Gabriel was seizure-free! Going from 7 plus heavy seizures and numerous sub-clinical seizures daily to zero a day was a God-send. His short term memory was terrible before the surgery and was still slow right after surgery, but it only took a few months for him to fully recover from that. His brain was so tired of all the seizure activity prior to the surgery that he would emotionally break down several times a day. When tested, his IQ had deteriorated to that of a 5-year old. Today, 6 months post op, he is completing his 3rd Grade work with ease and spelling at a 5th grade level. He is totally med- free and seizure free.
We've been truly blessed, and highly recommend Dr. Rekate and Barrow's to anyone who is facing any type of seizure or neuro disorder... they are truly a gifted team.
--Rochelle, Gabriel's mother
