Brynn’s Starting to Question…

 Brynnon is starting to question things and put the pieces together. He asked me yesterday morning what happened when he was eating his cereal and his bowl was about to spill and he could not stop it. It was a seizure, a simple partial seizure because he did not loose consciousness I told him… While doing his Home School yesterday afternoon he completely messed up in his math, adding two digit numbers he carried when dealing with single digit answers adding a tenth and ended up with most of them wrong. He was disappointed as he thought he had done an excellent job and would have had them all correct. We went over them all and I showed him what he had done wrong. He counted by tens to tell the time instead of by fives. We spent all last week going over two digit addition and telling time. He said when I reminded him about counting by fives to read the clock “it is there in my brain but I couldn’t reach it.” Last  night he asked Why he has to take so much medicine. My heart skipped a beat… I told him the truth. You have Epilepsy and we need you to have “No Seizures” to protect your brain so you can learn and not loose what you know. His next question was obviously more difficult to answer. Why isn’t the medicine stopping them, again I told him the truth… Your Epilepsy is a little harder to treat and we need more than one medicine and maybe try different medicines together to stop them. 
 His seizures are very light when he is having them this past week. He is still having some simple and complex partials during the day and he does have the myoclonic and some partial ones at night and a lot of moaning while sleeping too. Definite seizure activity but at least we are not having major tonic clonics/tonics while sleeping. I spent some time last night thinking about things, researching and seeking answers once again. I don’t think the answers will come easily and I don’t like feeling like I cannot help my child. When he had the first EEG done the seizures were coming from the top and moving downward. This time they are coming from deep in the frontal lobe. This explains why his seizure types have changed and also explains some of his other symptoms. 
 Treated or untreated the evidence is obvious to those that know Brynn best, seizures have taken part of him away. Seizures have affected his ability to learn, retain what he learns and his ability to progress forward. Seizures do affect the brain when they are prolonged such as Brynnon’s major ones have been, they actually cause brain cell death. Michael Wong, the physician heading a 2007 study at Washington University School of Medicine, stated that the observed dendrite damage accounts for the occurrence of cognitive impairment seen in those with seizure disorders. Scientific data does suggest that recurring seizures may contribute to nerve cell injury in the brain associated with declines in cognitive function and quality of life. Repeated studies have proven certain groups of brain cells may die after a single extended  or repeated small seizures. Research over the last few decades show that Seizures do affect Learning, Speech, Higher Brian Functions and  Memory. Frequency of Seizures as well as the length of the seizures are the most important clues to what damage is being done to the brain. Obviously to prevent further damage, Brynnon needs to be completely seizure free. There is no way to know how long it has been since he has been seizure free, because we were not watching him as closely before while awake, at all while sleeping and we did not know the symptoms well enough to even recognize the partial seizures. Knowing what I know now I can say certainly he has had seizures since he was at least 5. There is no way to know how many tonic clonic seizures he has had while sleeping or how long they were. I regret not researching more years ago after the first extended tonic clonic. I think most of all I regret listening to people who said seizures do not hurt children, seizures cannot kill you and it’s no big deal. Yes people, seizures can harm the brain… yes people, seizures do kill… It certainly would have helped if the very first Neurologist would have asked more questions of a parent who knew nothing about seizures. It would have helped even more if the second Neurologist would not have dismissed my concerns with learning, regression and cognitive function. That was over 2 years ago, it angers me to think had he listened we could have medicated him then and perhaps already have made the progress that we are looking for… Worse it could have prevented the damage to Brynnon’s brain that is irreversible. Yes, I do realize for most children Epilepsy is not going to damage the brain… This was not the case for Brynnon obviously. Yes, I do realize statistically he has a small risk for death due to a seizure. I also realize that is a risk I am not willing to take without knowing I did everything to prevent it. The audacity of some people to even suggest and say the things they say is beyond me. The research even suggest that he is at a higher risk for SUDEP as well as an early death in general because he has a Lower IQ. If the current Neurologist is correct Brynnon’s IQ range has always been what it is, nothing changed that. If he is correct both the Developmental Disability and the Epilepsy are both caused by a Malformation in the brain. Yes, the research even supports that IQ’s do not change with seizure activity, cognitive function does.
 Trazadone does seem to be helping Brynnon sleep, we should hopefully have him on a more normal schedule in a few days. He is sleeping good this morning, along with Abigail and Brandon… While Brett plays on Animal Jam… Time for everybody to get up and start our day… Taking the rest of the week off from Home School for Hanukkah! Yeah!  🙂



Read more:

Meeting News: Do Seizures Damage the Brain? Jack M. Parent, M.D….


Do Seizures Harm the Brain? Donna C Bergen, MD…
Epilepsies in which Developmental and Psychiatric Disorders May Be Comorbid…

Epilepsy and Learning

http://www.efwp.org/programs/epilepsy_learning.shtml

Most people with epilepsy do not have intellectual disabilities, but a substantial minority of people with intellectual disabilities have epilepsy


What is a Developmental Disability?

 http://www.cardinalmccloskeyservices.org/what_is_mrdd.shtml

Symptoms of Mental Retardation…



Developmental Disability…

What are Developmental Disabilities?

 
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Finally got Results…

 Got a call from Brynnon’s Neuro today. He said Brynnon’s MRI appears normal, but that just means that there is no obvious malformation. He says he still believes that Brynnon’s Developmental Problems and Epilepsy are the effects of a malformation and a problem with the wiring in his brain. His EEG was a mess, still very abnormal and of the three complete seizures he had while hooked up two had no outward signs that could be seen and one just had signs in his right arm. He said if I can show him regression we will look into other metabolic or genetic causes, but for now his diagnosis is still Malformation and he considers him to be Refractory. He cautioned me when I said that the new medicine is really stopping the complex partial seizures. He said although we hope that he will continue to respond with the new medication, we cannot let our guard down as children like Brynn tend to “Honeymoon when a new drug is introduced and then loose control again.” I asked him about the Klonopin loosing effect and he said with him being on it for almost 3 months it’s normal to loose control. I told him that Brynnon has had trouble going to sleep over the past few weeks and he said it’s not the new medicine interacting, it’s lost effect. He is not ready to remove it because it may be a crucial part to his recent seizure control, we will talk about removing it later. So he called in a new RX for him to take before bed that will help him sleep as sleep is a crucial part of maintaining seizure control. So we will get that filled tomorrow… I am a little apprehensive about adding yet another prescription to Brynnon’s brain, but I do realize that it is necessary and who knows it may be the key to complete control and prayerfully forward progression in his learning and cognitive function. I will be contacting the public school for speech/language therapy after the New Year. 

So… onward we go… this sure is one bumpy ride and frankly I am not liking much about the trip… except the people in the car, I am so greatly blessed to have them! We will let the windows down and enjoy the cool breeze blowing through our hair a while, knowing that Abba is still in control…     

 

Confusing Feelings…

 We are still waiting for the Video EEG/MRI results from 11/28. I would like to think no news is good news, but the only good news they can give me at this point would be they found a switch to stop the Epilepsy and flipping it will also reverse any damage, causing his Cognitive function to be normal. It would be great to not have to explain that my Son has a Cognitive Disorder and testing proves this originated in the Frontal Lobe of his brain. Yeah, people have a hard time comprehending that just because a child can have a conversation with you doesn’t mean they do not have a disability. I guess it will forever be a problem for my Son because you think he looks and talks normal? Oh well… Believe it or not I really do not care what people think, I am just afraid that they will do more hard than good in acting like there is not a problem. After the New Year I will have to go to the Public School and figure out what services Brynn Qualifies for. His IEP is full of Therapy that would help him develop life skills and become the best he can be. I certainly cannot provide all his needs. 

 I got the answer from OCDD today. I initially went thinking they will say he qualifies for Special Education Programs and maybe some Therapy. I didn’t expect them to say that he qualifies for services. I didn’t realize how shocked I would feel to see in black and white the the State has defined my child as Developmentally Disabled. Even when you know something, think you are prepared… it just seems to hit you when you see it on paper, from the people who know what they are talking about. So me being the OCD research read everything in one day type…

http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.html 

“Developmental disabilities are birth defects that cause lifelong problems with how a body part or system works. They include

  • Nervous system disabilities affecting how the brain, spinal cord and nervous system function. They cause mental retardation, including Down syndrome and fragile X syndrome. They also cause learning and behavioral disorders, such as autism
  • Sensory-related disabilities, which can cause vision, hearing and sight problems
  • Metabolic disorders such as phenylketonuria, which affect how your body processes the materials it needs to function
  • Degenerative disorders such as Rett syndrome, which might only become apparent when children are older and can cause physical and mental problems

Most developmental disabilities have no cure, but you can often treat the symptoms. Physical, speech and occupational therapy might help. Special education classes and psychological counseling can also help.”

 So… this is where we are… not sure where we are going but apparently we are going this way… Hopefully it will not be too late in the week before we get the Neurologist results…

Brynn after Pneumonia and too many seizures… 
Abigail to make you smile… Works for me, without fail… 🙂