Recalculating….

bbb36063997_1838393646206648_5468404218702331904_nBrett and I went on a grand adventure to Service Dog Training Camp for 10 days. Instead of graduating as a Service Dog Team Brett Graduated with his amazing Dog Taylor as a Skilled Companion Team. The reason is that Brett was not able to learn everything he needs to pass the Public Access Test with Taylor independently is he has a disability. I found it painful to watch as those around us struggled to understand how to reach him and  understand exactly what Brett’s disability is. As traumatic and life threatening as Epilepsy is for Brett, his intellectual disability that his Epilepsy Syndrome caused has the greatest impact on his life and his abilities. Last time it was tested, his IQ was 46. He carries a Moderate Intellectual Disability diagnosis, that is just a number and in no way defines Brett, but does explain why he could not perfect complete control and care for Taylor in 10 days. He is after all unable to care for himself completely without assistance. As I drove the 7 hours home I had a lot of time to think and reflect on everything. When we drove there we were mostly on highways, surrounded by farmland. It was beautiful, but pretty desolate. It was boring and seemed like the same scenery the whole way. This is probably what a lecture without visual aids is like for a person with Intellectual Disability. It did not take me long to realize that we were going to be going a different way… when I heard the nice voice say “RECALCULATING….”
  I inadvertently had missed a turn and somehow by the gift of technology managed to end up on the interstate. This route would take me a little longer (more time needed to reach the same destination), had two tolls along the way (would need more investment to get to the same destination) and there were more exits along the way (more visual cues). What a perfect analogy for intellectual disability. When Brett is taught the right way, consistently for a longer period of time he will be able to perfect the commands. This brings me to my point. Intellectual Disability. Most people do not understand how difficult things are for a person with moderate intellectual disability. A Cognitive or Intellectual Disability is when a person has deficits in thinking and reasoning skills. They usually have difficulty especially with abstract reasoning, being able to apply what they learn in multiple situations and grasping cause and effect. Attention spans are shorter, they experience difficulty with staying on task and have a terrible time organizing information. In order for an intellectually disabled child to learn information it must be broken into small concrete steps and presented in a way that they can understand. Each step must be mastered before another step can be introduced, they learn best with  sequential information. Most intellectually disabled people learn best with kinesthetic methods, meaning they need to learn in a hands on way if possible. They almost always need visual aids to get information to stick in the memory bank to retrieve it later too! Brett like his brother Brynn, looks perfectly normal and most would not realize they even have a disability. This is a blessing in some ways, but other ways more damaging. People tend to “look” at the person and expect them to be able to perform according to “age” and not ability. In many ways a person with intellectual disability will get less help and accommodations than a person who looks disabled. A person with Down Syndrome or Cerebral Palsy may “look” disabled but some are actually not intellectually disabled. The DSM-5 list Intellectual Disability as a disorder with onset during the developmental period (before age 18) that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains. To receive a diagnosis of Intellectual Disability they person must meet the criteria deficits in intellectual functions, such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience, and practical understanding confirmed by both clinical assessment and individualized, standardized intelligence testing. The levels of Intellectual Disability are:

*Mild = IQ 55-70

*Moderate = IQ 40-55

*Severe IQ 25-40

*Profound IQ < 25

For more information about the abilities expected with different IQ ranges see:

https://www.merckmanuals.com/home/children-s-health-issues/learning-and-developmental-disorders/intellectual-disability

 

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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…     

 

OY VEY!

 Took Brynnon to the ER Wednesday, after he started clustering, running high fever and could not recite his ABC’s because he couldn’t remember them. I asked him to recite them to confirm that he had been seizing with little outward signs. They did a chest X-Ray to confirm suspicion of pneumonia, blood test was positive for Mycoplasma. Hmmm, so after Bri got sick a few weeks ago, I got it… then Brynnon, poor little guy… his turned into Pneumonia… Now Janice, Brandon, Brett and Abigail all have “THE COUGH.” I still have it… and from what I have read, it’s gonna be around for a while. Praying that none of us will develop pneumonia, I have just enough for gas money and Brian to eat next week. Brynnon goes Monday morning with Brian to Children’s Hospital in New Orleans for his 3 day Video EEG and MRI. I am nervous about it and am so anxious about what the results will mean. I know he has regressed more with the recent increase in seizures. Thankfully, he can say his ABC’s again… but he is very slowed in speech and has that “lost look” much of the day. I just want all the answers… I want to know what we are dealing with, how to treat it and how to stop regression. Seems like if you can stop seizures then there would be no regression. Once Brynn is done with his testing I will be making Brett’s appointment to set up his EEG. I don’t want his complex partials to turn into generalized tonic clonics. Perhaps if he is medicated earlier we can prevent it from happening. So, onward we go… Praying (and coughing) all the way… OY VEY!!!!! ~Denise

Friendly visit with Community Counselor

 Thankful for direction from the Community Counselor at OCDD today. She was very friendly and very helpful. She asked why he was not on Medicaid and I explained that the Social Worker I spoke to said that he qualified by income, but we would have to cancel our private insurance for a year before I could apply for him. When our meeting was over she let me speak to another really nice lady who use to work in the Medicaid Department. Apparently Brynn should qualify for Medicaid under the Family Opportunity Act because he is medically/cognitively disabled. So I will get the application they printed and highlighted for me out tomorrow. We will pay a small fee each month and it will cover all our out of pocket expenses while keeping our private insurance. 🙂 They suggested I contact Families Helping Families for help asking the public school for special education, occupational/Language/Speech Therapy services. Although the Home School Legal Defense Association recommends to use the public school for services as a last resort, I think I am at my last resort. We are just in such a financially strapped condition, especially with the medical testing that he has had to have and will continue to need. The Doctors visit Co-Pays are enough to make my head spin some months! It will be a great help if we can get Medicaid to back up his medical care… I am not sure how long it will take to get word back from OCDD. I hope I have taken the right steps in the right direction at least to help Brynnon become the best he can possibly be… He has had several seizures today. He almost fell out at the Dollar store when we went in for his coloring books, crayons and play dough for his 72 hour VEEG/MRI hospital stay next week. He had some kind of seizure cluster and just when I was thinking he needed to go to the ER I felt his head and realized he had a fever. It has calmed down since I gave him Ibuprofen. Hope he does well tonight, going to give him a Klonopin after he eats his Dinner and again after midnight. Hope this will help stop all seizure activity…. I hate seizures… and now I hate all sickness even more than I did before! Had no idea he would get seizure clusters because he was sick. So thankful for those with Epilepsy in the facebook groups, otherwise I would be a crazy basket case by now and have 911 on speed dial… Just 6 more days and hopefully the VEEG and MRI will give more answers and better treatment to STOP ALL SEIZURES…. ~Denise 



Where Are We Going?


  After Wednesday’s new seizure type I have been doing a lot of thinking about where Brynn has been and where he is going. I pulled out some of his work from last year today. The work he did after his IQ was tested the first time. It breaks my heart to look at what he wrote Thursday and compare it to what he wrote last year. 

This is Brynn’s Story he did in Home School on Thursday. I typed “I Like My Scooter” for him… It is supposed to say “It goes fast. It is red. Miss Jackie and Mister Sam bought it for me. I love Miss Jackie and Sam. 
This is the first thing Brynn did Thursday with his free time, realizing he could not ride the 2-wheeled scooter again… The Neighbor had given him a 3-wheeler a while back and he is determined to fix it up and ride it now… 

This is an example of what Brynn was capable of doing at 5 points lower on the IQ scale. This is his AVKO Spelling work completed on 3/25/2010.
This is Brynnon’s work from 9/15/2010.

 I know I am getting ahead of myself… Surely the 3 day Video EEG and MRI will give answers. At this point after this emotional roller coaster with an awake drop seizure, I am afraid of what they will say. I am afraid of the answers… I am afraid that he will continue to regress… I am afraid of loosing my little boy, my Brynnon. I am afraid that he will keep going backwards, and I am afraid that no one will ever understand him the way I do. If his own family that lives with him cannot understand him and get it, why should I expect the rest of the world to understand him? I am afraid that it will happen to Brett too… What if his complex partial seizures progress to a generalized? Obviously they are different, Brett has been normal, no speech problems, no cognitive problems or developmental  delays… So, again I sit in the living room with Abigail on the recliner… sick with some kind of chest congestion and cough… watching Brynnon and Brett fall asleep on the sofa bed, while typing away on my laptop… With Hope that these words will reach another who really understands… or even better maybe these words will help a Momma one day who has a Brynn who no one understands either…. Feel like I am trying to plan a journey, I have no idea where we’re going, don’t have money for gas, no one has a map and worse yet no one wants to go along to help… Yipppeeeee, at least I get to leave the house besides going grocery shopping! Speaking of leaving the house, Monday is the appointment with OCDD… hopefully they have a map and prayerfully at least provide a tour guide. ~Denise

Brynn    (12)   Brandon  (16)


Abigail  (1)  Brett  (7)
Brian II (19)  Tera (21)  Janice  (19)

Waiting, Hoping, Praying….

Waiting for the appointment with the Office for Citizens for Developmental Disabilities next Monday… Hopefully they can point us in the right direction for assistance with the Therapy Brynn needs to help him. Would be a great bonus if they could help us get medical assistance for all these test that we cannot afford also… Then the Monday after Thanksgiving is Brynnon’s 3 day Video EEG starting at 9 AM. Brian will have to take that trip and stay with him the whole time. There are  too many of us to be able to stay somewhere, even with family. Cannot afford to stay in a motel… and they will not let anyone under 18 stay overnight. So me going with Abigail and Brynnon is a no go… His Mom has kindly offered to go to the Hospital as well to stay if needed or come and go if Brian needs. That’s one thing I can say for her, bless her heart. She was the only person who went to Children’s Hospital when Brian II was 8 months old and was admitted for a few weeks when he could not hold down any food. That was so sweet of her to offer and I am sure that Brian will appreciate it too… They will do the MRI before he is discharged the night of the 3rd day or the 4th morning. Hopefully they will capture all of Brynn’s Seizure types so they can see what goes on in his brain while he is seizing. I assume like the 24 hour Video EEG he will remain medicated… Prayerfully within a week of him getting all these test completed we will have most if not all of the answers. What part of his brain the seizure activity starts in and can it be fixed with surgery… Can they see Cerebral Cortex Malformation… What can they do about it… and what does his future look like? Brynnon is doing so good seizure wise at the moment. I don’t know what is going on inside his brain, but that Klonopin sure has helped to stop most of the twitching and seizing… So on we go… Hoping that the seizure monster is going to stay away from our Brynnon. Praying that Brynnon can now move forward and learn how to read… that those connections in his memory will improve… progress, we want to see forward motion progress… I guess that is what we all want, all us humans… I found that people have a hard time figuring out what it means when I say Cognitive Disorder, so I did more research… Cognitive disorders affect mental processes such as the ability to learn, remember, perceive and solve problems. At it’s basic level the cognitive function is information processing and can be split into three categories; Delirium, Dementia and Amnesia. Cognitive functions originate in the part of the brain called the cerebrum. The cerebrum–also known as the cerebral cortex–takes up the majority of the brain’s mass. It’s made up of four different areas, or lobes: the frontal lobe, the temporal lobe, the parietal lobe and the occipital lobe. Each area carries out specific tasks, most of which serve a cognitive function. Cognitive functions include problem-solving, speaking, learning, emotions, memory, perception and movement. Some tasks such as reading, speaking, and learning require coordinated processing from multiple areas of the cerebrum.

Well… I am off to make pancakes for lunch 🙂 
~Denise


Didn’t See That Coming….

 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