Christmas Meltdowns

After discovering the HH page.  I quickly became convinced this was what was wrong with my son.  I could not think of anything else.  Christmas preparations were a blur.  I over cleaned, over cooked, over spent…. I was all about the extravagance.

Christmas was fine, everyone seemed happy with the “Mexican Fiesta” theme.  The food turned out delicious, the gifts were received excitedly.  However, the looming cloud of “wish Mom was here” was forever present.

I have always tried to hide Owen’s rages from the family.  I have always kept them hid from the Cable Guy.  I was told repeatedly by my mother, that if the CG saw how my kids really acted… he would run away or never want to marry me.  So, I just always kept them hidden from him.  As for my dad, I always kept them hid away in the back room or quickly left their house if I sensed one starting, due to the repeated dialog from both my parents regarding how “spoiled he was” and how he just “needed more discipline”.   With that said, when Owen started to have a complete and total rage fit, unprovoked and out of nowhere, on Christmas Day…  Well, I let him go.  CG saw it, Dad saw it, my sister saw it….. it was a mighty one to!

Afterwards, Dad stated:  “I never realized he was not…. present… in his head, until now.  We will get that boy fixed! We have to!”

CG recorded some of the meltdown with my phone, we got video of Owens dilated pupils, slobbering, violent attacks on me, and head banging.

Just as suddenly as he left me, Owen was back in his head…  quietly sobbing and apologizing for ruining Christmas.

I laid in the floor with him for a long time, cuddling and cooing to him.  He explained the rage coming on, likening it to a werewolf.  Stating:  “You know, Momma… It’s like I can feel it coming, like I can see the hair growing and the fingernails getting like claws… I know I am turning, I just can’t stop it.  I can see what’s going on, some, but I can’t do anything to control it.  I really feel like I am turning into a monster and I can’t stop it”

He was exhausted and headachy the remainder of the night.

I have to get my boy fixed! 😦

 

 

Hold Up There, Aspergers… There’s a NEW Sheriff in Town!

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 digress.

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!

Hypothalamic Hamartoma

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

A tumor?!!

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!

Merry Christmas!