So... My Happy Appointment turned confusing... I am VERY happy that I found a Doctor who I know care about my Brynnon! He was very Good in his exam. He asked a ton of questions, let me explain all the types of seizures I have seen in Brynnon.
He whipped out some word cards and asked Brynnon to read... no surprise there, he cannot read anything beyond an early 1st grade level...
Then... I can still hear it echo... Do you know the days of the week? Oh I am beaming inside, of course Brynnon knows the days of the week... We do after all go over them at least once a month so he will not forget them! As Brynnon says them I can hear him ever so slightly singing them... Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday... "Very good! Can you tell me the days of the week backwards?" Nothing... "If Sunday is the first day and Saturday the last day, can you tell me the days of the week starting with the last day and continue until Sunday? Saturday is the last day, what day is next going backwards?" Nothing, Brynnon finally says "I can't."
"I am going to say a set of numbers 7, 3, 9, 4 you repeat them" 7,3,4... several sets of three and four numbers later he says "Okay now I am going to say a set of numbers, but this time I need you to tell me the numbers backwards 4,6,9 would be 9,6,4 let's see how about 5,7,2" 2...4.......7......... several tries later It is realized that Brynnon is not capable of doing it backwards, not once correctly given 3 or 4 sets of numbers at a time. He asked Brynnon several more questions and chatted with him... and turned to me and said
"He is not functioning above an entry level Kindergarten level. I have read all his case history, it is not Rolandic Epilepsy, it is probably Frontal Lobe Epilepsy given the nocturnal seizure activity... Given all his History I believe... (Everything in my mind goes numb at that point)... malformations of the cerebral cortex..." I even asked him a second time what the wording was that he used... "Simply put, something in his brain did not form correctly while he was in the womb."
So... One visit and this guy who looks kind of like Andy Dick, dressed so not like a Doctor... Seriously, if I had seen him in the elevator I would have NEVER guessed he was the doctor... Rather blunt with a rather dry seeming personality and obviously the most intelligent person I have ever had the pleasure of speaking with who seemed to have an eccentric Einstein like quality about him did what it took a Neuropsychologist 4 days to do and a three Neurologist and a speech Pathologist over 6 years couldn't do in less than an hour. He also mentioned that it is common in children with Brynnon's cognitive difficulties to be harder to treat and how sometimes these cases become retractable rather quickly. He also briefly discussed that there are many medication choices for Brynnon and that the Trileptol was a very poor first choice and was not surprised at all that I reported negative behavioral side effects. Depoakene being, by my judgment, about 50% effective either needs to be upped, which in children like Brynn can be pushed into the 120-130 range, not the 100 limit or another medicine needs to be added. We are after all looking for complete 100% seizure control. By the way behavior problems are very common in children like Brynnon.. I asked about Fragile X or the possibility of a genetic disorder, he said we will get there, lets get these seizures diagnosed and under control... and see what the MRI shows...
Can I just say that Doctor who practically laughed me out his office... I feel like he stole my sanity and frankly he stole valuable time and some of my Brynn... he took something from me, by not listening and not addressing my concerns. I wonder where we would be had he listened then....I will be writing that man and a few others a letter when all this is said and done!
So... a 72 hour Video EEG and a MRI starting on Nov. 28th. Looks like this is it... Ready or not, I think we will get answers... Had no idea that I wasn't as ready as I thought I was for the answers... I know the Father has a plan in all things... So excuse me just a few moments... it's just gonna take me a little time to catch up spiritually, mentally and emotionally!
~Denise
He whipped out some word cards and asked Brynnon to read... no surprise there, he cannot read anything beyond an early 1st grade level...
Then... I can still hear it echo... Do you know the days of the week? Oh I am beaming inside, of course Brynnon knows the days of the week... We do after all go over them at least once a month so he will not forget them! As Brynnon says them I can hear him ever so slightly singing them... Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday... "Very good! Can you tell me the days of the week backwards?" Nothing... "If Sunday is the first day and Saturday the last day, can you tell me the days of the week starting with the last day and continue until Sunday? Saturday is the last day, what day is next going backwards?" Nothing, Brynnon finally says "I can't."
"I am going to say a set of numbers 7, 3, 9, 4 you repeat them" 7,3,4... several sets of three and four numbers later he says "Okay now I am going to say a set of numbers, but this time I need you to tell me the numbers backwards 4,6,9 would be 9,6,4 let's see how about 5,7,2" 2...4.......7......... several tries later It is realized that Brynnon is not capable of doing it backwards, not once correctly given 3 or 4 sets of numbers at a time. He asked Brynnon several more questions and chatted with him... and turned to me and said
"He is not functioning above an entry level Kindergarten level. I have read all his case history, it is not Rolandic Epilepsy, it is probably Frontal Lobe Epilepsy given the nocturnal seizure activity... Given all his History I believe... (Everything in my mind goes numb at that point)... malformations of the cerebral cortex..." I even asked him a second time what the wording was that he used... "Simply put, something in his brain did not form correctly while he was in the womb."
So... One visit and this guy who looks kind of like Andy Dick, dressed so not like a Doctor... Seriously, if I had seen him in the elevator I would have NEVER guessed he was the doctor... Rather blunt with a rather dry seeming personality and obviously the most intelligent person I have ever had the pleasure of speaking with who seemed to have an eccentric Einstein like quality about him did what it took a Neuropsychologist 4 days to do and a three Neurologist and a speech Pathologist over 6 years couldn't do in less than an hour. He also mentioned that it is common in children with Brynnon's cognitive difficulties to be harder to treat and how sometimes these cases become retractable rather quickly. He also briefly discussed that there are many medication choices for Brynnon and that the Trileptol was a very poor first choice and was not surprised at all that I reported negative behavioral side effects. Depoakene being, by my judgment, about 50% effective either needs to be upped, which in children like Brynn can be pushed into the 120-130 range, not the 100 limit or another medicine needs to be added. We are after all looking for complete 100% seizure control. By the way behavior problems are very common in children like Brynnon.. I asked about Fragile X or the possibility of a genetic disorder, he said we will get there, lets get these seizures diagnosed and under control... and see what the MRI shows...
Can I just say that Doctor who practically laughed me out his office... I feel like he stole my sanity and frankly he stole valuable time and some of my Brynn... he took something from me, by not listening and not addressing my concerns. I wonder where we would be had he listened then....I will be writing that man and a few others a letter when all this is said and done!
So... a 72 hour Video EEG and a MRI starting on Nov. 28th. Looks like this is it... Ready or not, I think we will get answers... Had no idea that I wasn't as ready as I thought I was for the answers... I know the Father has a plan in all things... So excuse me just a few moments... it's just gonna take me a little time to catch up spiritually, mentally and emotionally!
~Denise
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