A nice peaceful sleep without worry that my little boys may have a severe seizure while sleeping and not wake up… while your at it, how about some assurance that this is not some rare genetic thing that my Brett has too? Yeah, I know big request… How about a device that will sound off before any kind of seizure? Unlikely, I know… Worse part about it all is there are so many parents enduring the same trials. Some so much worse… I just don’t know how to do this one yet. I have overcame so many trials… but this one seems to be taking everything out of me. Maybe it’s the fibro, but I feel like I could sleep all day… I just cannot seem to sleep at night… I have done tons of research… all of which has really not helped much but sure does raise more questions! I will be ordering the pulse oximeter, perhaps this will help and give more peace of mind with Brynn while I figure out what’s going on with Brett… Oct. 8th can’t get here fast enough for Brynnon’s neuropsychologist report… Oct. 18th can’t get here fast enough for Brynn’s Neurologist to explain his 24 hour EEG findings. If all else fails New Orleans on Nov. 1st may have answers… otherwise we will go out of state for answers! I have a feeling we will have to redo the neuropsych testing again, as he has certainly regressed further since his Aug. 25th major seizure…
I realize after looking at hundreds of EEG images that only a doctor can tell me what Brynnon’s EEG means. Brett has had a few more questionable episodes in the last two nights. No use bringing him to the Doctor as it’s not tonic clonic, but absence or some kind of simple partial seizures if it is anything with him… Keeping my cell phone and camera handy to record so the Dr. can actually see, instead of just me telling what I am seeing in him. Brynn seems to be doing okay, nothing more than myoclonic activity and groaning while sleeping. Hope to get a pulse oximeter soon to check his oxygen levels at night. Looking to get one that has the option to strap to the wrist at night, an alarm for levels that fall under normal levels and software that would enable me to download a nights activity would be great too. Believe it or not, they actually have these! So, I will be on the look out for the best deal, I have a few in mind so far… Had a relatively good home school week… Of course it was a “easy” week as Brynn and Brett fondly call it! Back to serious business next week, Abba Father willing!
You know the point where my uncontrollable urge to research and figure this out kicks in… OCD? Perhaps… I cannot stand the fact that I don’t know what is wrong with Brynnon and I don’t think I will be able to wait to find out if Brett has the same thing or if it is something different. Is it coincidence that both my blond haired blue eyes boys have behavior issues? Is Brett really just acting like Brynnon or is it the same thing just in early stages? Paranoid? Perhaps… Maybe Brett’s few little things were just night terrors… Maybe it’s nothing at all in Brett. This thinking of course just leads back to needing to know what “it” is in Brynnon. I have found so many EEG images taken while sleeping and I cannot find a single one that looks like Brynn’s. I did find a few syndromes that children experience seizures and also have intellectual disabilities and or regression. Why is this so important, to know what “it” is? I need to know what the prognosis will be for Brynnon. I would like to know if he will just grow out of this and catch up with others his own age, or will he stay behind? Is his cognitive function going to get better? Can it get worse? I pray that he will outgrow it and catch up, but if this is not the case, I want and need to know now… I want to know why my almost 12 year old has regressed to rubbing my hair between his fingers like he did when he was very little… Why has his Reading and Learning regressed so much? Why is he acting like a child much younger than he is? It breaks my heart… I need answers and I want them NOW. How am I supposed to peacefully sleep at night, knowing that he could have a seizure… What if the alarm does not pick it up? What if I cannot hear him on the monitor? Will my life ever seem normal? I probably wouldn’t know normal if it happened anyway!
Well… Monday is the big day. Brynnon will go in at 2 PM and stay for his 24 hour EEG test. I am so glad they are doing this test, to see a good picture of what is going on in his brain while medicated. Janice & Brandon witnessed what we all believe was a short seizure in Brett last night. This is not the first time it has happened, but the first time that someone besides myself actually saw what he does while sleeping. I was thinking about it last night, and getting upset thinking again about all those times I talk to so called doctors about Brynnon doing the same thing. I was told they were night terrors. I will ask Dr. Flatt about Brett when we consult with him. I know it would take some time to get an appointment with him. It may be the same thing as Brynn and may be early seizures… Perhaps it is even a clue in Brynnon’s diagnosis? So… Monday & Tuesday at Womans and Children’s for the EEG. Neuropsychologist results on the 6th… Back to Dr. Flatt on the 18th… the Children’s Hospital in N.O. on November 1st for consult at the Epilepsy Center. I am hoping that we will have a diagnosis and better understanding of Brynnon’s brain and what his outcome will look like by the years end… Brett will more than likely have an EEG also, as I am going to request it. Hopefully, if it is the same as Brynnon has, we can possibly at least prevent some loss of cognitive function by early diagnosis and medication? I just wish I had pushed harder years ago….. ~Denise
Brynnon seems to be regressing further in his learning and behavior since that last seizure. Even the neighbor has noticed a decline in his cognitive function. I wish I could just walk into an office and get an accurate diagnosis today, it’s just not that simple. Is it really a decline or do we notice more? Is it due to the seizure or is whatever “it” is the cause of the seizures? So many questions perplex my mind and keep me going from website to website. So many things seem to fit, like Fragile X syndrome… Is it really possible that something has been missed by so many people? How can so many doctors miss something like this? How can a speech pathologist miss whatever “it” is? It really breaks my heart watching helplessly as he seems to have trouble fitting in, the world just seems to be a confusing place for Brynnon sometimes. He would be happy fixing things, tinkering with motors all day long. He could get lost in a lawn mower… yet he can only read on a 1.6 level with help and guidance. I worry about the other children too, what if it is a genetic? Maybe I am making a mountain out of a molehill, I really hope this is the case. I want answers and I want them now!