So not to put you to sleep within the first paragraph, I am going to refrain from delving too awfully deep into the history of my son’s battle with (what I have always thought was) Aspergers High Spectrum Disorder.
I have always had behavioral, health, mental and cognitive problems with my poor sweet boy. However, if just anyone off the street would look at him, listen to him speak and see him as perfectly healthy and normal with maybe a few “quirks”.
I have struggled for years to find the answer to his sudden, unexplained rages. His debilitating headaches. His learning and memory problems that have become increasingly worse in the past few years. He has had trouble walking and speaking. He has never been able to ride a bicycle or tie his shoes, but yet he can complete a video game made for adults in a matter of a few days. He used to be considered a “little genious”, but now he struggles to read a chapter in an easy reader book.
I quite my job to stay home with both children, due to their level of “mental instability”. My new mission quickly became to have Owen diagnosed with Aspergers (the only thing at that time that seemed to “Fit” his vast array of problems), so we could start receiving some sort of disability money so I could continue staying home. The very same week my mother was put into the hospital, Owen was (grudgingly) diagnosed, by a psychologist, with Autism Spectrum Disorder, depression, OCD and possible bipolar. We got our first check for SSI on moms two month (death) anniversary.
I’m trying to get to the point.. sorry…
Last Sunday, while trying to coax my son away from his computer long enough to play a round of Pugopoly, he burst into tears and started telling me how depressed he is. He stated his head hurts all the time, he feels exhausted, he can’t wake up… (I knew all these things, because it has been a daily conversation for over a year now.) I had taken him for blood work several times this past year, thinking he may be suffering from vitamin deficiency or Chronic Fatigue Syndrome. The doctors never found much to be concerned about. He has an irregular heartbeat, night sweats, decline in congnative ability… nothing major. Hum?
What WAS new to me this day, was the feelings that he just wanted to “die” because he is so tired of hurting all the time. He felt like an old man, and he just wanted to die.
Crushed me! Froze me to the core!
He is only 9!
I quickly Googled “child psychologists” in my area and found one, emailed him and received a reply back within an hour. I took him for his first visit on Thursday, my son’s 10th birthday.
He interviewed me about all the normal things: Owens past history, School, his birth, health history… etc. He asked Owen a few questions, watched him carefully for approximately 15 minutes all together…. and then sat back in his chair and simply stated that I may hate him for what he was about to tell me, I may call him a “quack” and wish to leave, but to please hear him out.
“I don’t think for one second, that this child has Aspergers!”
He then proceeded to guide me down a path of new ways of thinking, different ideas and completely new possible explanations for my sons strange ways.
Auditory Sensory Disorder
Temporal Lobe Epilepsy
He gave me these explanations, told me to go “look them up” read about them and give him a call back with my thoughts.
Totally aghast, lost and a little excited… i did just that.
The Auditory Sensory Disorder sounded a little like Owen. The Temporal Lobe Epilepsy sounded a little more like him.. but neither one matched up with his rages, mood swings, memory loss and decline in school function and fatigue.
Then, I swear to GOD, my mother guided my eyes to this one sentence:
Some children with HH have significant difficulties controlling angry outbursts, aggressive tendencies and are diagnosed with “hypothalamic rages.” These rages often can be mistaken for “temper tantrums;” however, they usually happen quickly and without an identifiable cause or provocation.
There it was!!! Something I could identify with… I kept reading. It sounded like my son… it sounds exactly like him!
Word For Word! It IS MY SON!! What is this?!?! What does he have?! This is IT!!!! I FOUND IT!
A hypothalamic hamartoma (HH) is a rare benign brain tumor or lesion of the hypothalamus. The hypothalamus is located at the base of the brain, and is responsible for many of the “automatic” functions of the brain including hunger, thirst, temperature, passion, and hormone regulation. A hypothalamic hamartoma can cause many types of seizures, precocious (premature) puberty, cognitive deterioration and severe behavioral difficulties known as rage behaviors.
Here is the link if you wish to read more on this: http://www.epilepsyfoundation.org/aboutepilepsy/syndromes/hypothalamichamartoma/index.cfm
Oh God! What do I do with this new information?! How do I process this and keep this calm and quiet over the holidays?
I know it sounds exactly like him… but what if I put him through more testing just to find out I am once again WRONG. Did my mother show me this because she knows how much it means for us to figure this out?!
So, while I process this new information, prepare for the Christmas my family expects and start a New Year without my mom… I will pray, research and welcome ANY feedback any of you have for me!
I am at a loss!