This morning I find myself sitting on my hands, biting my tongue and trying not to let the negative thoughts devour and overcome me.
“Normal”, the nurse said. “Your son’s EEG results came back as Normal. Which means there were no signs of seizures at that time.”
“Now all you can do is wait for Cooks Childrens to decide what further testing they would like to do, if any… and they will notify you of their decision.”
Well, Ok…. I was expecting the normal reading. I didn’t tell you all that.. but that was the fear I had going into the EEG this whole time.
The night before his EEG, I had a moment of panic, I was so concerned and worried that I visited the Hope For Hypothalmic Hamartoma page for the millionth time in hope of some reassurance. I was searching, searching, searching … then BAM… There it was!
While electroencephalograms (EEGs) are commonly used to diagnose other types of seizures, attempts to capture or record gelastic seizure activity by EEG have proven unsuccessful. Scalp EEGs, as well as video EEGs (VEEG), are limited in usefulness as a diagnostic tool because in the early stages of the disorder, the EEG report is quite often normal. This is due to the deep location of the HH and the complex connections of the HH. After some years of seizure activity progression, the EEGs in many patients will show increased activity. Video EEGs are limited because, although a parent can often indicate when a gelastic seizure is occurring and the physical indications may be apparent, there may not be corresponding brain activity indicated on the EEG.
My stomach drops, my heart sinks… Oh No! What are we messing around with this EEG for, then?
I tried to talk to my dad and the CG about this… Neither one had any advice. I worried and fretted for hours…
I ultimately went ahead with the EEG, knowing in my heart that it would most likely be normal and that the “normal” reading would probably slow down the Amarillo doctors and make them less worried… or even (ugh) more dismissive. I prayed and prayed that there would be just a little blip, a little wiggle in the line to prove to the doctors here, that Owen really does need help. I felt sure that a tiny little wiggle would get a diagnosis just a wee bit faster.
Nope, not a wiggle.
Now my new focus:
We need an MRI. Owen NEEDS an MRI. An MRI could be the answer to his seizures IF it is read by a professional that has training in the Hypothalmus or even in Dycrasistic or Gelastic seizures.
Individuals with a possible hypothalamic hamartoma should undergo high-resolution Magnetic Resonance Imaging (MRI) of the brain with special attention to the area of the hypothalamus. Many HH patients have lesions that are missed on initial brain imaging, even when studied with high-resolution magnetic resonance imaging (MRI) because of the inexperience of the person viewing the scans. The MRI scans should be thoroughly scrutinized by someone with HH experience, because these lesions occur deep within the brain, can be small, and are sometimes difficult to detect. HH’s may be as small as a few millimeters to as large as a few centimeters in size.
As I sit here… in tiny, town USA… I feel an overwhelming fear. HOW am I supposed to convince Pediatric Neurosurgeons in Dallas to not only perform the MRI at my request, but also listen to my gut feelings on it being his Hypothalmus and make them call in specialists… Oh, my brain hurts just thinking about all of this.
I wish I could write them a letter, demanding they take notice. I wish I had the money to march in the doors of the Barrow Neurological Institute in Phoenix and demand testing… I have , in a moment of panic, even considered moving down there just to be closer to that hospital and closer to an answer. I am struggling for courage, patience and strength. I am extremely distraught over the fact that, not only is my boy still declining daily, but I have to watch him decline while everyone else seems to stroll along at a leisurely pace, wondering if we are just making this up!!
The Hope for HH page has been a source of comfort to me, especially at times like this. However, just as quickly as it can comfort it can also leave me feeling panicked and scared. The last paragraph reads:
Symptoms ranging from mild to severe seizures can be difficult to recognize. Also, there may be other associated endocrine and behavior issues which may be the first symptoms addressed. In some cases, once the diagnosis of epilepsy or a seizure disorder is made, the next critical step of discovering an HH through high resolution MRI is missed. For some families, gelastic seizures are not readily recognized as a seizure and HH is misdiagnosed as colic, Irritable Bowel Syndrome (IBS), acid reflux, and/or behavioral issues. This can prevent a proper diagnosis and lead to the delay of treatment and in some cases, result in unnecessary procedures.
The importance of working with a medical team familiar with the complexities of HH cannot be overstated. Trust your instincts when dealing with the medical community and always ask questions.
Thank you, Hope for HH.
Amarillo seems to be completely handicapped when it comes to certain… no… MOST medical issues that require specialists. Oncology, Female Oncology, Pediatric Neurology.. well Pediatric specialty ANYTHING for that matter…. These are two fields I personally know are limited in what they can and cannot do, and the professionals that are here seem to be very limited as to how far they are willing to research and learn.
With that said, I am again, questioning my bravery and how far I am willing to go to help my child?
Do I, myself, believe strongly enough that it is HH to just keep pushing and pushing? I have been down this road before with his digestive yeast infection and with his Aspergers.. before I was ever believed, I was accused, by one doctor, of being Munchausen By Proxy, thrown out of a different doctors office, and I have had numerous other parents and close friends shun and mock me for my belief that there was something medically wrong with Owen. Am I really ready to go through this again?
Do I believe strongly enough to push past all my fears and all my issues with assertiveness, social phobia, and low self-esteem in order to be heard?
Am I going to champion for my son? Or am I going to passively sit here and wait it out and get messed around for another 2-6 weeks?
I. Am. Scared.
I wish Momma was here to talk to and give me her opinion. I wish CG and Daddy had the perfect answers, or at least the wherewithal to be more supportive, but in their confusion they have both backed off considerably.
Normal… I knew it would come back normal, why am I so surprised?
Now… to regroup, soul search, gather my thoughts, build up my courage, and take the next step….
Whatever step that may be… I am unsure at this very moment.
Just pray for us please.