Regrouping, Recovering and Other Odd Shenannigans

I’m not going to lie, folks, I have kind of closed us into a bubble, of sorts, upon returning to Panhandle.  I was not only desperately disappointed and frustrated at how we were treated in Fort Worth, but I was also dealing with some relationship issues with my Cable Guy, feelings of complete loss and grief over my mom, and just all over depression.

I have struggled, since last week, with the feelings that Mom got me to Cooks and then left me.  I know, I know.. she is right here with me, but I was so SURE that Cooks was where she was pointing me..  But once we got there I never once felt her presence, I never felt that tingle of a eureka moment, like I did in Dr. Hashams office.. she was not there… And it made me feel even more alone.

As the days have gone on though, I realize how much support I really do have… in all of you.  I realize I am not alone, that I have created this island of loneliness and desolation in my own mind.. that all I have to do is reach out and there is always going to be someone there to listen, support, encourage and love me.  Thank you all for that!

So, we are back to square one, so to say.  I need to start with how I am processing all the info I did get while at Cooks, and what I have decided to take away from that whole experience.

YES, I am VERY HAPPY that Owen does NOT have a visible brain tumor, cancer, lesion or anything else going on in his brain.  That could have been a devastating and deadly discovery!  I am so thankful that he is not suffering from something deadly and terminal! I never thought he was, but it’s always a relief when you hear the words “We see nothing”.  No matter how devastated I was by them not seeing a lesion on his Hypothalamus… I was, at the same time, so happy my son does NOT have a brain tumor.

I do not doubt that Owen is having some types of seizures.  I have seen them several times upon our return.  I do not doubt that there is really something wrong with my son.  Do I still think it is a Hypothalamic Hamartoma?  I am not sure.   All I can do now is keep gathering my info, gather his records, rigorously film Owen’s daily activities , document, research and eventually this will lead to finding the right doctor with the answers.

I have made a small discovery that might lead to some relief in a few of his symptoms, but before discussing it here I need to take him back to Dr. Hasham and inform her of our trip to Cook’s and see if she is open to testing him for a few other things.  I am considering getting a referral to the Pediatric Neurologist in Lubbock, he is the Doctor responsible for finding the Hypothalamic Hamartoma in the boy in Amarillo.  I am also in the process of reaching out to this boy’s mother, maybe she has some advice.  Here is the link to his story if any of you would like to see:  http://www.connectamarillo.com/news/story.aspx?id=755706#.UwDmMmbna71

Owen and I did a LOT of talking on our trip, especially on our way home.  I will be restricting his computer and Xbox time even more, we will have an activity jar of things for us to do together each day, I will spend even more time with him one on one, and he will start going walking with me.  We have a goal of starting hiking together next fall.  We want to be able to get to the mountains and backpack, together.  So before we can hike in New Mexico… we need to be able to walk in Texas without getting tired on the first mile.  I think the fresh air and goals will do us both some good as we keep trying to figure out what really is wrong with him.

He is pretty encouraged by what we have discussed and decided, he is willing to cooperate and participate…. so if anything came out of our trip that I can count as positive… it’s that, in a way,  I seem to have gotten my son back, he is back to wanting to participate in life, he is not as depressed.  He just seems happy that I cared enough to take him to Fort Worth and fight for him.  I think that counts for something 🙂

 

 

 

 

Headed Home With Our Tails Between Our Legs…

I am sure you guessed, just by the title of this post, I am NOT a happy Momma.

Dr. Ryals’s nurse called me around 9:00 this morning.

She had a list of Psychiatrists that Doctor Ryals would like us to choose from for a Psychiatric evaluation.

Before she gave me a phone number for the first one, though, she took it upon herself to question me as to why I didn’t want a child psychologist in our own area.

“I am sure there are capable doctors in Amarillo that can help Owen with these emotional outbursts?” she stated.

I explained, once again, about why we are here in Fort Worth, why we needed to get too Cooks and about the rages being only one of a grocery list of symptoms that are plaguing my child.  After all of this, I quickly realized she only heard one word, of what I said…. Suicidal.

We volleyed back and forth about in-patient treatment centers, the need for meds, why I haven’t had him admitted to a mental health facility.. etc…

I explained to her about the rages and all the other symptoms going hand in hand with the Hypothalamic Hamartoma… how he has other symptoms that Dr. Ryals didn’t even care to hear about.  About how the Hamartoma can be as small as a thread and not able to been seen every time with the naked eye and I am not convinced that Owen does not have this.  She didn’t even know what a Hamartoma is.. she was very condescending and dismissive at this possibility.

Then she stated, very abruptly: “Well, his EEG cam back completely normal, so you can rest assured there are no seizures.”

Shocked, I gasped “Normal? I thought it was supposed to take 2-3 weeks for results to come back because they had to view the EEG very, very critically and watch the video?”  (This is what the LVN that called yesterday had told me).

The nurse kinda stammered a minute and said “weeellll, they do…. but there were no big episodes seen during the initial first review, and we don’t usually have specialists come in for minor to miniscule episodes if the child is on Medicaide”.

That’s when the door in my brain slammed shut.

“This is a good thing, Mom!” she said soothingly “Nobody wants their child to have seizures or a brain tumor!”

I kind of lost it at this point, I was crying and frustrated.  “I just want someone to listen to me! There is something wrong with my child! This is NOT THE SAME CHILD that I had 6 months ago!!!”

I continued to… rant, repeat and cry…  until she finally said to tell her the other symptoms… she was willing to list these and present these to Dr. Ryals and see if there was anything else he could do.  We discussed them all…

  • The cognative decline
  • extreme thirst
  • loss of appetite
  • extreme sensitivity to heat or cold
  • night sweats
  • constant urge to urinate
  • early signs of puberty
  • chronic constipation
  • fatigue
  • loss of muscle tone
  • insomnia (since birth)
  • vomiting 2-3x a month, especially after a rage
  • irregular heartbeat
  • anxiety and panic attacks
  • constant dull headache
  • sensitivity to smells, lights, sounds
  • stuttering and unable to say a sentence without stammering and getting distracted… this used to never happen!
  • absence seizures
  • distracted and distant
  • poor social skills
  • problems concentrating and memory problems
  • rages, unprovoked and sometimes not able to remember them.

She asked me to elaborate most of these.  it was a very in-depth process.  I felt like someone was finally hearing me.. I felt better as we talked.  She wrote them all down, and then told me she would go talk to the doctor and call me right back.

30 minutes later… she called.

I am not sure what exactly happened, but she came back on the phone a completely different person.  Closed off and cold, very detached and stated simply..

“For the thirst, loss in appetite fatigue, and night sweats you need to have your pediatrician refer you to an endocrinologist.

For the irregular heartbeat, you need to go see a cardiologist.  (I told her about the EKG done in Amarillo, guess she forgot 😦  )

For all the other stuff you really need to get him to a child psychologist.

Make sure he is getting plenty of rest and water, this will help out with constipation.  Give him a multivitamin and make sure you feed him a healthy diet.

Dr. Ryals can not stress enough that this child needs to be admitted to an in-patient psychiatric facility for observation and meds to manage Owens attention problems and emotional outbursts.

And Mom? You need to be very careful, you may need a psych evaluation yourself, your anxiety might be rubbing off on your child, you may be the reason he is exhibiting all these emotional outbursts.”

My mouth was hanging open the entire time she was reading the “101 Ways to be a Terrific Mom” list…

But when she said this last sentence, I was furious!!!

I curtly said, “I’ll try to” and hung up.

My mind is still reeling from the conversation and the feelings of shock and frustration.. and it’s been over 8 hours now.  I feel completely defeated and like this entire trip was a waste of time, money and emotional strength.

Where do I turn now? What do I do?

I can’t go down without a fight!  I am NOT going to take these results as the final word and just slink away in shame.  I can’t! I have to fight! For Owen!

I am going to figure out what is wrong with my son! I am going to figure out why my son is perfectly fine sometimes, and completely out of his mind, in pain, exhausted or ill most other times.

I have a plan… I think.

It may change when I have an entire night to lay in bed and think about the days events, but for now… this is my plan.

I am going to go back home.  I am going to make an appointment with Dr. Hasham and tell her about this awful experience.  I am going to request Owens records from Cooks, and I am going to start video taping his every move.  I will take him to see a psychiatrist, I will take him to an endocrinologist, I will even take him to a different pediatric neurologist.  I will not, however… GIVE UP.  I will save all these videos, test results, doctors notes and I will send them all to Barrow Neurological Institute.  If and WHEN THEY tell me that he does not have this HH… then I will belive it!

Something is wrong with my son!  If I don’t do something soon, I could lose parts of him that make him able to function as an adult.  Able to live a full life.

On the way home from the store, Owen said:

“Mom, I have decided something … I think if they don’t know whats wrong with me, if I never get fixed, I think it’s best if I stay single… that I don’t ever have a girlfriend or a wife.  I think I should move into a small house out back and live completely alone… that way, when I have a rage as an adult, I can’t hurt you, LaLa, my wife or kids… I can’t hurt anyone I love…  if I am never around them.

Kinda puts it all in perspective doesn’t it?

Kinda makes you understand why I’ve gotta fight.

 

😦

 

 

 

Step Five: Part 2

I have been in my “hidey hole” for about 24 hours now, just trying to process and rethink the events, information and emotions of the past 2-3 days.

After the traumatic and unsedated MRI, and after the VERY stinky, very aggravating EEG  hook-up, Owen was able to go back to our room and rest, and rest he did! He slept for 3 hours.  He slept the deepest sleep of his life! I know you mommys out there know what I mean by saying, “He was the Gerber baby” for the next 14 hours!

NOT really what we needed from him.

I did everything within my power, over the course of the night, to provoke a rage, an absence seizure… anything I could.  I woke him up abruptly and noisily.  I beat him at Dr. Who Monopoly, I put him on the computer for hours with the brightest, loudest, most obnoxious You Tube videos he watches.  I forced him to recite multiplication facts, I gave him hot chocolate and cookies….  I did it all!

The closest we came to a rage was when the girl’s voice came over the room speaker to tell him to leave his leads alone, they itched terribly and Owen was constantly picking and pulling at them.   He got pretty mad at her by the 4th time, but still no rage.  I finally gave up and let him sleep from 4am untill around 7am.

I maybe slept 45 min.

By the time Dr. McLoughlin (the neurologist on call) came in about 12:30, I was exhausted and completely in a state of aggravation at what all had happened with Dr. Ryals the day before.  I was prepared to voice my frustration to this sweet little older man and receive some… empathy? understanding?  Well, what I got was a quick answer and a sense he had no time to talk.

Our conversation went like this:

We wont have the results of Owen’s EEG back for a few days, but I did get a chance to look at his MRI this morning.  Owen has a beautiful brain with no abnormalities that I could see. I saw that he has had a history of hypothalamic Hamartomas in the past?”

“NO”, I said, “We are here because we are afraid he may have one.”

“OH, well, then if that is the case…  No I am pretty much the specialist, in this area, on the hypothalamus… and I looked very closely at his Hypothalmus, I saw no indication of any lesions or any tumors”

I was quiet for a moment, processing this.  He then said, “This is good news, Momma! No mom should WANT their child to have a tumor!”

I was shocked!! Is THAT what they thought?!!?

“I don’t WANT my son to have a tumor! I don’t want my son to even be here! To be sick! What I do want, is to know WHY he has all these strange symptoms and nobody is listening to me or answering us!” We thought we might finally be on to something, have a cause… Now we don’t, so I have to wrap my brain around this news and focus of a new direction of thinking.”

“well”, he said “maybe they will see something on the EEG, but for now that’s all I can tell you”.

and he left the room.

I sat down at the table and numbly stared out the window for a while.  Then I went next door to the lounge and called my dad.

I returned about 10 minutes later, ordered Owen some lunch and sat down on the couch to look at Facebook.  That’s when I noticed Owen pulling at his leads again.  I told him to stop and when he looked up at me.. I saw the “look”, that look he gets right before a rage.  So I egged him on, “stop it Owen, leave those alone, honey!” That is all it took…  He was off and running! Trying to leave the room, screaming, crying, trying to lock himself in the bathroom….. RAGING!!  We finally got a rage on the video and on an EEG monitor.  I pushed the button and they were marking it in the EEG room.  It took 4 nurses and me to hold him down and about 25 minutes of screaming, kicking and hitting, but he finally came down enough to want to cling to me and hide from everyone else.  It was BEAUTIFUL!

I was so glad he did that! Proof!!

The nurse was speechless, he had been so well-behaved for 2 days! She said, “It’s like he is a whole different kid for those few minutes!”

She saw it!

Now, if it is a seizure, then it should show up on the EEG.  if it is not… then we are back to square one completely.

Dr. Ryals had stated in his office that there are Doctors called Neuropsycologist, that might can help Owen if we can’t figure out anything from these tests.  Which means, Owen could live a life of psychotropic drugs and being in the mental health system.

I tried looking up other “Neurological disorders that cause anger outbursts and cognitive decline”, and you get answers on Google, like:  Hydrocephalus, Anger Overload, Temporal Lobe Epilepsy, Parkinson’s Disease and schizophrenia.  😦

So I am going to stop Googling for the time being, and hope we get some results soon.

Am I convinced it’s not a Hypothalmic Harmatoma?  Not particularly, I am still trying to decide if I forward these records on to the Barrow Neurological Institute in Phoenix.  Am I relived it’s not a Hypothalamic Harmatoma? Yes!

I am confused, exhausted, deflated, depressed, elated… and most of all…. very worried about where to go from here.

I hope the doctor calls today, or we have to head back home tomorrow.

That’s all I have for now.

R

 

Step Five: Get to Cook Children’s Hospital in Fort Worth (part 1)

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In the Doctors Office

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His new room in the Epilepsy wing

As I write this, I am sitting in a brightly decorated room on the 4th floor of Cook Children’s Hospital… We made it.Yesterday was a whirlwind of meeting the doctor, more on that in a bit; blood draws, an MRI (that lasted entirely too long for a small, claustrophobic boy to not be sedated), and finally the hook ups for the 24 hour video EEG.

When we left my sister’s house, yesterday morning, we had NO idea that we would be here the next morning… but here we are.

The doctor, himself, did not impress me.  He was not warm or open. He was just a man with very little patience and already set in his decisions and attitudes towards this case.  he asked questions with a curt indifference and seemed exhausted when I started to elaborate in any manner.  He dismissed the seizures as “psychotic episodes” and completely blew off any mention of the Hypothalmus.When he did ask questions, they were usually started with the sentence, “So, let me ask you another dumb question?”  Then usually asked something like, “what makes YOU think he needs to be here?” Or, “Why did he not ever crawl? Did you just never put him down?”

He did note that Owen seems “distracted”, and there is visibly something wrong with his processing and his attention.  He felt like it is not seizures though, rather an underlying neurological disorder that most likely can be “tweaked” by a child psychologist with the right meds….

((crickets chirping))

I finally got up the courage to butt in and ask if I may “please show you the other list of physical symptoms that Owen has exhibited that made the other doctor feel he needs his Hypothalmus checked?” To which he responded by LOUDLY sighing, crossed his arms, fell against the wall dramatically and huffed, “Fine, what are they?”

I reacted like anyone that feels dismissed would, I brain farted.  I completely went blank and kinda mumbled something about his sweating and early onset puberty and his not sleeping his whole life… not very convincingly I see now..   “Well,” he  said, “we can check his Thyroid too, but do you realize.. the chances of this boy having some tumor on his Hypothalmus that can be surgically removed by Mr. SuperSurgeon at some Ritzy Specialty hospital… is like… One in… A million? I doubt this is anything of that sort.  I’ll look at his MRI when I get it, but that is NOT what I will see!”

Then he asked me if anyone else in our family has a history of seizures.  I mentioned my mom ultimately passing due to what we initially thought was strokes that turned out to be brain seizures.  Well, he dismissed this also! With no emotion or candor he said “Well, you know once those Lymphoma people get it in their brain or heart.. they are just GONNERS!!”  Well obviously! But he dismissed my moms seizures as well as my sons!!

By the time I realized what he actually said, that my moms Lymphoma had most likely spread to her brain and that is what had started the seizures and heart attack and everything that would eventually take her from us… he had already mumbled something about, “gotta go get this all started”….  and left the room.  No “be right back”, “see ya”, Nothing.

We sat there another 15 minutes waiting before the nurse found us, surprised we were still there, she scurried back down the hall to find out what was going on.  Then a little transporter came around the corner to take us to admitting!  No one knew what tests he was ordering, I had none of our stuff with us, my car is still sitting in valet parking.  Crazy!

Through the course of the afternoon I discovered they are testing his thyroid, doing blood work, an MRI, a 24 hour video EEG, checking for diabetes, kidneys, heart rhythm, and some other things.

Not a mention on anything about his Hypothalmus.

I have spoken in depth with both the first nurse we had yesterday and the nice, male, nurse last night.  They both feel I should tell the whole story to the neurologist on call today.  The night nurse told me not to leave here without answers and feeling like I am being heard. That was my right as the mother.  So thats what I will be working on today.  I am anxious to hear any results.  I just have to keep in mind that I don’t have to “settle” for just these results and go home with our tails between our legs.

Please keep praying that we get some answers.  Pray that the next doctor or Nurse Practitioner hears my concerns and something is done for my poor, sweet, boy!

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Patience is not just wearing thin… it is GONE! LOL Poor baby!

Part 2 to follow shortly.

Appointment Has Been Made!! (Rantings of a nervous, crazy, scared Momma Bear)

Just as I suspected!!! His case had been “closed out” at the Amarillo office due to the normal reading on his EEG. :/

I TOLD the doctor that I was afraid that it wouldn’t show up and explained the absence/ gelastic/ dycrasystic seizure thing to her and asked if we could please get an MRI also… but instead of doing that, they closed him out!

So calling Cooks Children’s in Fort Worth, myself, this morning turned out to be very, very beneficial!

Owen is scheduled for Friday, THIS FRIDAY, at 11am.  The problem is… we are supposed to be getting another few inches of snow and ice between now and then.  I am unsure if my little Honda will make it just fine, but we are going to give it a go! 🙂

I know I never discuss it, but money will be an issue, gas, food, etc… I am pretty concerned, but seeing as Mom has gotten us this far, I am trying to trust something will work out in this area as well.

Next up, for all you wonderful praying people that are following this adventure of ours.. is please, please, PLEASE, be praying for Dr. RYALS  Pray he will see, hear, and help us.  Please pray for his wisdom, kindness and guidance.  Pray that he has an open dialoged with us and hears the things he needs to hear to help diagnose my boy.

Pray that he has a good day Friday, is feeling good, and is ready for this dynamic case we will be presenting!

Thank you!

God Bless!

I will update when we are ready to depart! 🙂