Gabriel was born by cesarean second, 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 the two of them.” The twins were born 6 week premature.
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 which turned into months. As he grew older, we noticed a pronounced left-sided weakness in that he always had to be propped up with pillows and in pictures we would have to hide behind the table and put our hand underneath the photography table cover and prop his head up and support his back. He could lie on his tummy and raise his head up, but he couldn’t sit up like his twin sister did. She would reach her milestones of rolling over, but he would struggle and get very agitated.
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 flustered 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 came to the same consensus…. It was reflux. I went to college several years before the twins were born and majored in Nursing. I remembered what the face looked like during seizures because I had seen them both in clinic rounds. I kept telling the doctors, “Look at his eyes. That can’t be due to simple reflux.” but they wouldn’t budge on their diagnosis of 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 taking one look at our videotape the gastro doctor looked at it and said “Those are seizures! I haven’t seen that kind since med school, but those are definitely seizures.” He immediately called in the top Pediatric Neurologist in this area who also agreed that they were seizures. The Neurologist said that he felt most likely they were actual epileptic seizures, but they were manifesting as clustered Infantile Spasms.
The doctor’s first course of action was to run an EGD scope down his esophagus into his stomach to check for a hernia, which came back positive for a small Duodenal Hernia. At that point they thought that the hernia could be causing the reflux, but wanted to investigate further. They then ran an EEG of the brain which confirmed the Neurologist’s suspicions of epileptic activity. Upon running an 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 since it’s actually benign. The Neurologist and the Neurosurgeon both described it as “Normal brain tissue growing in abnormal space”. As a side note, they told us that the hernia was probably the RESULT of the turmoil that the seizures were putting his system through, thus causing reflux to happen and NOT the other way around.
They biopsied the tumor to make sure that’s what they were dealing with and sent us home on ACTH (Corticotropin) shots for 3 months. The seizures stopped at that point. They told us that if it was going to reel its nasty head again, it would probably be around the age of 9 or 10 when puberty would be setting in. They also deemed it as “inoperable” at the age he was at, and that “possibly” we might be able to remove it at age 9 or so due to the larger “operating field” they would have then, 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 CA in 2002, Gabriel stated having full-blown seizures. They still don’t know if it was the extreme altitude change (from 5,000 above to 1,000 feet below sea level) or what. Some feel it was “just time” for it to happen. We would battle the seizures for 3 more years. These seizures were very different now at age 9 than when he was younger. 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 left to right, ending way above the top of his head. He would then fall asleep and continue sleeping 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. At Gabe’s school, he would spend most of his days on a cot underneath my work desk due to the increased seizure activity. One day, near Christmas 2004, he had a horrible bloody nose. It was at that point that we decided to pull both of them out right after Christmas break and in January 2005 we started homeschooling. He was doing fairly well at first, but with a month or so he lost all concentration. Our Sheltie collie started exhibiting a behavior during all of his seizures that actually turned out to be a blessing. Whenever Gabriel would have a seizure, Candi would run to one of us and start whining and turn circles, then run to wherever Gabriel was. We would always find Gabriel lying down, and she would be there with him, her front paws on top of him until he came to. She would then gently move and lay next to him. She’d never been trained as a seizure alert dog, we were told that it just came naturally to her.
We finally went back to the Pediatric Neurologist who initially found the tumor and he put him on Keppra. It was at this point he gave us news that would forever change our lives, and Gabriel’s. He said that a surgeon had been trained how to do the surgery Gabriel needed in Phoenix, AZ and he’s had incredible results. Before we knew it, we were booked for Gabriel’s appointments and subsequent surgery.
On Easter Sunday, 2005, we boarded a plane destined for Phoenix and left Rick Husband airport on a flight that would forever change Gabe’s life. During the pre-surgery evaluation and testing, our son’s IQ had dropped dramatically. The doctor finally stopped the testing because he could see that Gabriel was not processing much at all, and that not only was he having overt seizures (that could be seen) but that the doctor picked up on several sub-clinical seizures as well. He told us that at the last point of “cooperative testing” Gabe was at the IQ of a 4-5 year old. It was at that time that we knew that the seizures had done an incredible amount of damage. To think that our son, who had done amazingly well in school until the seizures turned up their force, was deteriorating right before our eyes only solidified in our minds that horrible prognosis of being institutionalized that we had listened to with so much doubt several years before.
On March 30, 2005 that prognosis would start a dramatic change. The Phoenix surgeon was able to detach and completely remove all of the HH tumor that had inhabited the 3rd Ventricle Space, using the Trans-colossal approach. Gabriel suffered a small stroke during surgery, but went through a 1 ½ weeks of rehab while in AZ followed by rehab at home for about 2 months. While in AZ he had to learn how to use his arms again in order to draw and write, something he loved to do before. He also had to learn how to swing again. Watching him struggle with something that before had brought him such pleasure, was heart-breaking. Our local Make-A-Wish Foundation had gifted him a large Backyard Adventure play set when they found out about his condition. We chose to wait on presenting it to him until after the surgery. We felt that it would be something to help drive him to pull through and a goal to aim for.
Upon arriving home, Gabriel was totally seizure-free! Going from 7+ heavy seizures and numerous sub-clinical seizures a day to zero 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. Within 2 months, we weaned him off all medications since they actually seemed to be irritating him due to the fact that there were no seizures to control anymore.
6 months post-op he was completing his 3rd grade work with ease and spelling at a 5th grade level!
Today, at age 16, he just finished his second year at a semi-private school here after having homeschooled since his surgery. Last year (7th grade) he made the A honor-roll, had perfect attendance, and was awarded the school-wide award for Outstanding Character. This year (8th grade) he again made the A honor-roll, but missed perfect attendance due to the flu. In August he has decided to return to homeschooling, only because he enjoys the Christian curriculum. He will be taking Bible courses in order to prepare him to enter the field of Ministry! He has been studying diligently in order to get his learner’s permit which is another goal he wants to achieve. The change between where he was and where he is now is incredible. The only lingering after-effect that he has is being dubbed our “In House Barometer”. He can usually predict a weather front when it is 12 hours out. He gets sleepy and his thinking gets foggy, but after it gets here he feels good as new. It actually makes planning picnics and outdoor activities very easy with him around! Hmmm… wonder if they offer Meteorology courses at our local college?
Life lessons learned.
1. Trust your instincts as a mom, dad, or caregiver. I had one medical professional tell me that if I had not been a stay-at-home mom, it might have been much farther down the road before the seizure activity was picked up on. Like many of the doctors around here did, chances are it would have been misread as simple infant startle reflexes or a real colicky baby. I remember when I told our Pediatrician about how fussy and agitated Gabe was, he asked me “Do you have a dryer in your home?” I thought “Good heavens! He’s going to tell me to toss Gabriel in and run the air-fluff cycle!” He saw my surprise and said “I’m not recommending throwing him in the dryer, but when the dryer is running and warm lay him on top on his side and put a rolled up towel behind his back to prop him on his side.” Turns out the warmth is supposed to calm them down if they are truly colicky. Well, it didn’t work. Go figure. Maybe it was because he WAS NOT COLICKY. I had held him since he came into this world, wires and tubes and all. I KNEW his breathing and his expressions and his cries, just like you know your child’s.
2. Trust your instincts with doctors. If what they’re telling you just doesn’t make sense, or even if it does, research it. I’ve experienced doctors, after homeschooling and facing layoffs with my husband’s work, that have told me I was clinically depressed and wanted to medicate me with mood stabilizers. I felt so inadequate and like I was a failure after that statement. I went home and prayed and felt directed to look up “exhaustion”. Turns out that I was depressed because I wasn’t sleeping well at all, not the other way around. According to them I was depressed so I couldn’t sleep. Sure enough, when they gave me meds to sleep and I had a week or so of restful sleep the depression disappeared. When the cause was treated and NOT the SYMPTOM only, things turned around. It’s the same way with our special kiddos.
Don’t blame yourself. We adopted our twins and it was an open adoption, so it would have been very easy to point fingers but we didn’t. Things happen that make us stronger in the long run. When our children hurt, we hurt and we want to stop their pain. Sometimes we need to just simply Be Still and Trust.
4. Know that the chewable Tegretol can cause a child’s gums to be really tight and hold on to baby teeth like super glue. We were so excited when Gabe finally started losing his baby teeth, and so was he. That old saying “Getting someone to do this or that is like pulling teeth” knew what they were saying and MUST HAVE had a child on Tegretol at some point in time LOL.
5. Remember that YOU ARE NOT ALONE IN THIS JOURNEY. There are others of us that are still learning, even after all we’ve been through. Case in point… Gabriel’s twin sister. She suffers from learning disabilities and due to struggling with school became suicidal this past March. She went through an EEG when she was around 5 or so and they saw “questionable” activity but not anything that alarmed them. She was very slow to develop her speech and organization skills and is clumsy at times. Trying to comprehend oral instructions is very hard for her, but her visual memory is incredible. Now we’re wondering more about what actually happens in the womb with the other twin. Is there a chemical present that may be higher in one sack or the other, or is one twin just naturally at higher risk than the other so the tumor forms in them but only results in a chemical imbalance in the other? Research is ongoing and time will tell. Until then, I take comfort knowing I’m Not Alone.
6. Turn to your source of spiritual comfort. Ours was and is God the Father. We couldn’t have made it through it without Him.