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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Spinning Wheels

IMG_6778We have been in AL for almost two years now. Frightening thought, considering that I had anticipated better care for the boys here and ended up with less than they had before. To date, they have seen 4 Pediatric Neurologist, 1 Geneticist and still just spinning our wheels as far as the “why.” Currently, we are traveling longer than we were from MS to New Orleans just to see a Pediatric Neurologist who at least seems to  have the ability to think outside the box. I still would never leave MS given the chance to do that over!
I don’t think anything could have prepared me for this journey with Brett, even Brynn’s journey was so different, looking back seems less stressful and complicated in comparison. IMG_6885
Tonight, Brett had a mild seizure as he walked down the hall towards his room for bed. I stood there talking to him and when he was ready we proceeded to his room. I read their Warrior Devotional, said our prayers, kissed both my warrior boys on the cheek and headed out the room. Brett’s headphones are broken, so he wanted to listen to his music on his iPod dock. Simple, but unacceptable to Brynn who had to take an Ativan minutes before because he was slurring speech, racing thoughts just spouting out and his left arm was jerking in those familiar myoclonic twitches, all signs it was not going to be a good night. So argue they did and Brynn took the iPod from Brett and slung it to the bottom of the bed. Abigail calls out “Brett’s having a seizure.” Indeed, he is, so I get the magnet and swipe.
He IMG_6721seems to come around and I assume that’s all. I explain to Brynn that his headphones are broken and it would be nice if he could listen to K-Love to go to sleep. I find K-Love, wait for the play button and for it to load and ahhh, a lovely song is playing. All this time Brett has been tummy down on his bed with his chin on his arm on top the wood low headboard. I say “Brett, scoot down and lay right.” To which he answers, “Who’s Brett?” I ask him if he is okay and he looks at me, and I know by the look he has no clue who I am. So I find myself standing there thinking, how wrong it is that this is “normal” in my world. Nothing could have prepared me for the heart-shattering pain and fear I felt the first time I heard those words, yet here I am staring at my precious blue-eyed baby boy who just said them and I didn’t feel panic. As with any other part of our IMG_6648Epilepsy journey, and many others like us, I was not informed or prepared to ever hear those words. So many things that have happened have been exactly the same. I can’t tell you how many times I have stayed up and researched all  night something that happened just trying to make sense of it. I never heard about SUDEP until I read about Danny on Dannydid.com.  Ms. Willa who did Brynn’s first EEG told me, “It’s okay Momma, people don’t die from seizures.” The very first Pediatric Neurologist Brynn saw after his first known Tonic Clonic while sleeping said, “People don’t have seizures while sleeping, he won’t have another at night it will be during the day, if he has another, everyone is allowed one.” The second Pediatric Neurologist said, “His Cognitive challenges and seizures are not related.” I never heard nocturnal seizures, even though Brynn had his first Tonic Clonic seizure while sleeping until I researched it. Thankfully, we went for a second opinion and stayed there for a few years, long enough to be educated, eventually get Brett diagnosed as well. I have been known to say that no one gave me a book, a pamphlet or even some printouts that could explain most of what we have had to get blindsided with. I imagine it would be frightening to tell a parent, one day your child may not know their own name, how old they are and they may become afraid of you because they do not know who you are. I still feel as though if I had the proper knowledge it may have been less scary and could have saved me hours researching the medical literature available online! Hopefully, we will make some progress soon. I feel it’s important to get those answers, the why my two boys have this obviously genetic seizure disorder and where do we go from here would be nice too!
So here’s to you dear parent with a newly diagnosed with epilepsy child. 
1. There are at least a thousand things that could happen and very few are positive things. The most important advice I can give is to take it one day at a time and keep a really good seizure journal describing every detail until you figure out what type they are.
2. Epilepsy can damage the brain, but most seizures do not. If you feel that your child is showing signs of regression find a psychologist or neuropsychologist and get testing done. This will not only  give you a reference point should true regression occur, but it will likely also help you understand and strengths and weaknesses your child has.
3. Changes are going to happen. It’s rare to come across a parent who says that their child always has the same exact seizures at the same exact times. For most parents this can be the most frustrating part. You can never know when it will happen and this can cause a lot of stress and anxiety for a parent if the seizures become or remain intractable. This is also known to cause stress on marriage and friendships. It is imperative that you have a support system in place. Know the symptoms of Caregiver burnout, especially if you have other stressors in your family dynamics:
http://www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm
4. Please, I cannot stress enough how important it is to learn the basics of seizure types and their symptoms.  I posted about this not long ago:
https://epilepsywarriorboys.com/2016/04/04/what-does-epilepsy-look-like-anyway/
5. Find other parents! There are several groups on facebook, you can find them by searching on facebook for “Child Epilepsy,” or similar terms and you may even have a local support group. Contact your local or State Epilepsy Foundation.
6. Know when to seek a Level 3/4 Epilepsy Center. The guidelines are here:
http://www.naec-epilepsy.org/spec_care/guidelines.htm
and to locate one use this link:
http://www.naec-epilepsy.org/find.htm

Ones Mountain is anothers Molehill…

 Being Brynns Momma has brought me to many support pages, so many blogs and many places reading about some really special children. Across the Special Needs community, even the Epilepsy support groups there are as many varied parents as there are children. Some parents tend to take it all with stride, on the outside it appears that they have it so together it makes you wonder just how they do everything they do. Others are so fragile, you pray that the next moment will be met with relief as you just feel that they cannot possibly handle another thing. I tend to be somewhere in the middle, at least I would like to think I am.
 

 I remember when Brett was 2 and I found out that his “never-ending sickness and reoccurring respiratory infections” was actually asthma. I remember how traumatic it was for me to watch as they pricked his little back 25 times to do the allergy test. For me as a parent, before that moment even with four older children at that time, that was the most traumatic thing I had ever experienced with my children. The first time he had to be rushed to the ER because he couldn’t breath despite the treatments at home was more than I thought I could bare… Not because I couldn’t handle it, but because to me it was the worst thing ever. My reality, my world and my perception was shaken and changed forever in under 15 minutes…

It was as if the whole world stopped….. In one split second.

In S L O W M O T I O N….
I watched in horror as he laid on the floor jerking, foaming at the mouth…. His Daddy with him talking to him, calling his name… 
Brynnon, Brynnon…. Oh GOD please help him… I think it’s a seizure… 
He’s not breathing… I am screaming to the operator… 
Flagstaff Street…. F L A G S T A F F Street… 

Oh my God, please Abba Father…
Please help him breath… What is happening…. Oh God please make it stop……. Flagstaff is on the left…… Oh God please hurry…… 

He is breathing…… He stopped Jerking……… He won’t wake up…….

Thank God the ambulance is here…

 A
h, now this was different territory than I had ever experienced. To see your child with eyes rolled back, turning blue, shaking and not knowing what is happening… that is by far the scariest thing I had ever experienced. My perception of the event in that moment was a billion times worse than it was. Simply because I had never experienced anything like that in anyone, or my child.


Brynnon….. Brynnon….. Oh GOD Please No…….
Screaming for help, no one can hear me…. 

He’s not breathing….
HELP…. Okay, I can do this… Turn him on his side….
His Daddy comes… Gets on the bed with him… Holding him……
Time always seems to go so S L O W L Y….
911… My Son he is having a Seizure….  
He is not breathing……..
He will be 11 tomorrow…


Over  the years, my perception has changed some… I am still terrified when I see a Tonic Clonic seizure, but as long as it stops before that 5 minute mark I can handle it pretty well. Once it reaches over 5 minutes my adrenalin runs wild and I am scared to death that he will not come back to us. The Complex Partial and other seizures I can handle a bit more, those too scare me after the first minute or so. I guess because I have seen so many, your tolerance grows as with any other thing. So when you come across a Mom, a blog, a support site and you are tempted to think that person is making a mountain out of a molehill… remember that everyone’s mountain is different.


I think Brynn is having a seizure… The words echoed in my mind…. 

Handing Abigail to somebody…  I can do this…
TIME… What Time Is It?????? 1:39 AM…. 

Oh GOD he is not breathing… Call 911, we are supposed to wait…

TIME??? 5 Minutes…. He is still not breathing…

His lips are blue… His chin is BLUE… CALL 911….
He’s not breathing…….  I am Suctioning his mouth… 

He’s still not breathing…. Oh Father please let him Breath…

Okay time he is breathing and lightly jerking…. Time…. 12 minutes….
He is going into another seizure I think… Okay, Brynnon stay with me… 

He is having another seizure I think… and another…
Fire Department is here… Ambulance is here… 
A shirt…
I can’t believe I forgot his shoes….

I have had people express that they don’t know how I do all I do, when I feel like it will never be enough.
I too have had a family member look me straight in the eye and say “There is not a GD thing wrong with that boy.” and another say “He’s not retarded, if you keep treating him like something is wrong your gonna make him retarded.”  Ignorance abounds in every area of the world. In our families, in the grocery store, in schools, even in the very Special Needs Communities that are supposed to help and support hurting parents. Some people think that all children affected with Cerebral Palsy are severely intellectually disabled. Some people think that all children that are Autistic are completely non-verbal. Some people think that all persons with Epilepsy will be intellectually disabled. Some people, even physicians, think you cannot have seizures while sleeping.  Some people think there is only one degree of intellectual disability. Some people just do not think. They assume that they know what they are talking about, refuse to take the time to learn anything… because to them your mountain is just a molehill. Nothing you could ever say to them will change that… 

 So let the tears of that hurt roll off that mountain and eventually, it will create the most beautiful garden for you and your child to sit in and explore all the beautiful flowers that the Father has created in His awesome wonder and perfection

Each and every one of those special children whether disabled or seen by the world as perfect are indeed perfect. God does not make mistakes… and even if you feel like you cannot handle the mountain in your life. I can tell you with all certainty, that God knows your mountain and He would never give you more than you are able to bare. Every parent has their own mountain to deal with on a daily basis. Some more scary, some more life threatening, some more stressful, some more life altering than others… but never forget… all are traumatic to that parent. Yes, your mountain may be a Molehill to someone else and even more shocking your Molehill may be a Mountain to someone too… Just remember…
“I can do all things through Christ (Messiah) who strengthens me.” Philippians 4:13
 


 

It’s been a while!

It has been a while since I have taken the time to update here. We have been busy with home school and a few other things. Brynn has finally tested at a 1st Grade level in all areas of Reading. We have worked really hard on Inferring, Context Clues and Reading Comprehension.

This has made a bigger impact than he has experienced to date in his learning. It is a beautiful thing to see he figure out a word based on context and his confidence has grown so much that he does not hesitate to guess a new word or one he can not decode. He seems to have lost some decoding ability along the way, so we will have to figure out how to get that balanced.  Brynn received a Hernando Bear, sponsored through Angels 4 Epilepsy and TG Bears. He loves his Hernando and sleeps with him. He is a good companion and as Brynn says he is his Epilepsy Fighting Bear. He was promised a bear through another organization months before his VNS surgery. He never got it, so I bought him another bear. He said he didn’t want to take it to surgery because it was not an Epilepsy Fighting Bear. Hernando is so special to him… Monica, the beautiful woman who hand makes the bears, said she put extra fight in his Hernandos stuffing! He cut out the sticker from the box he came in and proudly displayed it on his memory shelf. That shelf is full of beautiful memories… 


  Seizure wise Brynn has experienced an awakening cognitively since the introduction of Onfi stopping a lot of the little seizures that you can not see. The bigger seizures are still there, just not as often, which has made a difference in our lives! He is spending a lot more time talking and has had spontaneous laughter more and more. Silly boy, we have really enjoyed having more of the real Brynn back these past few weeks. Just before his Children’s visit last week, we saw a decline cognitively and an increase

in seizures. He had a runny nose, headache and was declining so quickly cognitively, I took him to the ER. It was decided there that it was an increase in seizures and allergies due to the high pollen count. We went to Children’s Monday. His neuro increased the Onfi from 10 mg to 15mg 2X Daily. This has already made a difference, and we will not start the daytime dose until Monday! We also agreed it was time to l et go of the Klonopin, since he does not need to be on 2 Benzo type drugs regularly. He was only on .5 before bed and it has been two years since he started it. I haven’t noticed a difference, except perhaps a little clustering, which seems to have been helped by the Onfi increase. I expect once we increase the daytime dose we will level out again. We also were able to attain the Zonegran Brand Name Medically Necessary again. I do wonder if he may have done better with the brand name when he started the Onfi. It was such a dramatic difference… I guess time will tell. This time when his VNS was adjusted he had no change in is voice, no hoarseness and no coughing at all. I kind of missed the robot voice all the way home… but I us am happy that he seems to have gotten use to the device. His VNS is set to 1.25 cycle and 1.5 magnet. Speaking of the VNS,

we bought this custom made band for his VNS Magnet from Kimberly’s Crafts on Facebook. It’s just what he needed as it fits his ankle instead of his wrist. The magnet will destrtoy any electronic devices, credit cards and so on that it comes in contact with. So we needed one for his ankle, when I could not find one I contacted her to make it! It came out great! His neuro once again said that we will likely not see seizure freedom with Brynnon, and that our goal is to keep seizures at a minimum for him while not affecting his cognitive ability negatively. I am anxiously awaiting seizure freedom, I will not loose hope that he will one day be seizure free. We are still only 6 months out with the VNS, perhaps before this honeymoon phase ends we will notice a difference. We will likely discuss trying to wean Vimpat next, as we are not sure what impact this medication has on his seizures either. No matter what we will not touch the Zonegran, having the month of August as a permanent reminder of just how much he needs that medication.
 

Brett is doing great with the Alpha Omega Life Pacs. It was a good decision to place him in that curriculum to allow more one on one time with Brynn, since Brett has the ability to work independently.
 

Abigail has begun to want to home school. We are working slowly on the Starfall books and preschool workbooks. Hard to believe she will be 3 in just two weeks. 


We had a wonderful day on Epilepsy Awareness day! Everyone wore PURPLE and it made Brynn feel so special that it was his day! So here are a few pictures of our lovely purple day!

New Year off to a good start!



I am really liking this year so far!
Brynn’s 8 week Depakene wean in COMPLETE! Only noticed an increase in small seizures and some increased daytime tiredness, which seems to be leveling off now. We are enjoying his stability seizure wise, with only 1-3 larger seizures a week. Not sure if it is the VNS or the Zonegran increase that is making it possible, I guess time will tell! Even the larger seizures he seems to bounce back from easier and have less effects afterwards. We will go back to Children‘s hospital next week for his VNS increase. I do
feel so much more relaxed with the last several weeks feeling so positive for Brynn. I worry when he sleeps 12-14 hours a day, but if he is not having a seizure increase I can see, I remind myself that he may just need that extra sleep. Will still discuss it with the Neurologist as we know he has seizures we cannot see also. Excited to get our tax refund in a few weeks to help fund fresh new materials for home school. I purchased McGuffy’s Readers for Brynn and he seems to like them so far. A change from the Merrill Readers he has used for so long. I hope that we can bring him to at least the 1.5 level in Reading with them. We have pulled Sequential Spelling from our curriculum as well. It started with his Neuro stating in the office that if he needs assistance in any way to answer the questions (additional statements or questions) it is not counted as right. He couldn‘t answer where he was (Children’s Hospital), What city he was in (New Orleans), What day it was or even what Month we were in. We had talked about going to the appointment on Tuesday, in New Orleans at Children‘s for weeks. He writes the month and day everyday in his home school. I was kind of upset at first thinking, but it’s not his fault that he needs reminders or hints. It’s just the way his brain works, he has to have something to tie things together. He knows New Orleans is where the Super Dome is and he knows Children’s is the Hospital he goes to. After the initial shock that he couldn’t answer, I was upset. I was upset because it got me thinking, well if he can only spell “should” if you give clues (Should, would, could-U should know this) then does he really know how to spell should? If you have to say anything to get the right answer, is it right? My gut ached as I realized, no it’s not. It feels better to think it is, but in the real world it’s wrong. If after 2+ years of giving those reminders in the AVKO Sequential Spelling he still cannot spell those words without me sounding them out for him and giving hints, I must conclude that he has not been successful with it. So we started an old Jones Spelling book. He will be given three words every Monday to dictate sentences for. I will write the sentences and he will copy and read them a few times a day. On Friday he will be given the sentences and be asked to  write them. It’s his sentences, that he made up, so he will be connected to them. Hopefully, this will give better results than spelling 25 words a day has. Brett (8) is Reading at a 3rd grade level, so he will begin to use Alpha Omega LifePacs this year. He is confident and able to work independently, which will allow more time for me to work one on one with Brynn. Abigail will be working in Pre-K to keep her busy! 🙂 I will be buying Brynn lots of work books focused heavily on inferencing, Context Clues, Writing, Punctuation and Thinking Skills. After discussing things with a teacher friend of mine, she helped me realize the reality that he is 13, and he just may never read above a first grade level. I knew this before, but I thought if we worked hard enough he would advance forward over time. He has stayed at this same exact level for almost two years now. So at this point we need to focus on fine tuning the skills that he has attained as we add more, hoping that he will retain them. Deep down inside I am a bit excited to see if this lower seizure baseline will stay as it certainly will help his cognitive function. I will be asking about Neuropsychological testing again at this visit. As it is important to know what if any impact the past seizures have had on his overall ability. 
 A real beautiful person, the swing lady I talked about before, is sending the boys and Abigail $100 gift cards to spend on clothing. What a blessing! She is also giving a $200 gift card for household stuff. I think I see a new set of pots in my future! 🙂

We are definitely more at peace here in MS, the air is cleaner and our minds are too! I am learning to trust in our Abba Father and lean on Him for understanding instead of fighting through all the details myself, trying to figure it all out. Learning too, that we don’t have to understand every single thing, we just have to trust Him and His will in all things and know that it will all work out for His Glory. I have done all I can do, now I will stand and trust Him! He who began a good work in me, will be faithful to complete it!  ~Denise
 
   

Dealing with the Present and the Past… 21 Years is too long…


We made the trip to New Orleans to have the settings set higher on Brynnons VNS Implant. I really wanted to visit with my Dad, who is now 78. I didn’t get to meet him until 1995 in person, while expecting Brandon just before we moved to MS. As a youngster, I passed notes and to him through a cousin I went to school with. I even mailed letters and pictures through an Aunt I found by looking in the phone book and calling everyone with my “old” last name. I wanted to see him, he is not getting any younger and every time we talk he says it’s been 5 years since he saw the children. So we went the night before Brynn’s appointment on Monday night November 12th. We got a bite to eat, checked in to the Hotel, brought our bags up to the room and left to go to Dad’s. I had a hard time getting around trying to remember how to get there… My mind was frazzled and forgetful. Too much to think about I suppose. Everything reminded me about Momma and riding around with her to and from the office. There we were, passing the very building she was murdered in, on the exact day she was murdered 21 years later. I thought it appropriate to take a photo of the moment, I do not think I have ever been at that building on the very day in all the 21 years. So hard to believe that she has been gone that long… Even harder to believe that all of us who loved her have not done anything to make the truth known about her murder. That is exactly what I intend on doing. If any of those that she loved would have been brutally murdered like she was, she would not have let 21 years pass without making sure everyone knew exactly Who did it and Why. So many unanswered questions, and those responsible never had to answer for their part in her murder.  It’s just been swept under the rug… in hopes that no one would ever pick it up and start sorting through the details. As I stood there at that building I wondered what keys it still holds to this day. Is there DNA evidence still there? Do the guilty still live in the area? How much of what the Police told us is actually true? Why did they not do anything, why did they fight so hard to let the guilty walk? Who really knows the truth and why after all these years have they not talked? There were a million memories and a million questions fighting for my time in the moments that I stood at the very door.. I remembered being there with Momma when we highlighted my hair… and I remembered going to pick her up and going to the thrift shop for something to do. I thought about the talks we had, the laughs and the serious talks about God and life. I also thought about all those unanswered questions and I thought about what she would look like now, what she would sound like and even what she would smell like now. When I think of her laughing, I can hear her… When I think of our talks, I can hear her voice as if she is right here. She had this way about her of telling you exactly like it was. She didn’t bite her tongue, but she wasn’t rude or cruel either. I laugh sometimes when I wonder what she would say about something… knowing full well she wouldn’t approve and would tell me so. I wish I could remember every talk we ever had and I wish I could remember every detail about her case. I wish too that it never happened and I could share my life with her. I wish I could walk in the door of that old house and see her standing ironing clothes while MASH or Perry Mason plays on the TV. I hate that I have to remember that she was taken like she was. That a human being was so full of hate and rage that they were able to stab a beautiful, loving, unselfish, dedicated Woman and Mother like her 21 times. I hate that we had that uneasy time of separation and rebellion in my older teenage years as I became a woman and stretched my wings and left the nest. I am so thankful that we were able to repair our relationship and build many happy memories before her murder. We will never have the ability to undo what was done, but it is our responsibility as those she loved and cherished to at the very least, let her memory remain alive and a blessing always. Her memory is a blessing in my life, I just wish I had more of them. I guess I will always feel like we had so many more moments to share…
    The next morning we got up, got ready… ate I Hop for breakfast and went to Children’s Hospital.
Brynnons VNS settings were upped, but his Neuro decided we will have to take his adjustments a bit slower than usual. He seems to be extra sensitive to it. He coughed when the magnet was used before the settings were raised and said he felt like he would throw up. Now that he has gotten use to it, he doesn’t feel sick anymore. When the VNS comes on he says Ahhhhhh, as it makes his voice sound like a robot. He did this the first day every 5 minutes when it came on. Now it’s getting further and further apart as he adjust to having it happen. Sometimes he talks through it now and doesn;t pause and say Ahhhh… I have talked with a few people who say that it feels like a tickle or a choking sensation when it comes on. He is doing much better with it now! We will return in December to have it adjusted higher again, unless his seizures surpass his baseline again and we can go in sooner if that happens. Yes, he is back at his baseline again! The Zonegran increase does seem to be holding on and doing it’s job… So thankful! We talked about Brynn needing to learn to swallow a pill. His Neuro decided that instead of weaning Depakene he would like to try him on Depakote ER (Depakene is the liquid form). He says that the Extended Release may work better and his dose could possibly be lower. It could explain why he has breakthroughs because the liquids of these drugs tend to work in waves, whereas the ER would stay constant. Seems to make sense to me and I am all for it. Told Brynnon I will give him $5 if he can swallow an M&M and $1 for a Skittle. Cognitively he has made some progress with the Zonegran as well. His processing speed has gained enough to make a noticeable difference when he is talking sometimes. The Neuro feels this is due to the decrease in the little seizures that we cannot see. I will be anxious to see another EEG report with the VNS to see what the difference is once the settings are where they need to be. I wish we could just get a 24 hour Video EEG once a month! That would make it so much easier to know where we are and where we are going! The Neurosurgeon says his incisions look great! They are healing very nicely and are just about completely closed now. The nurse told him the VNS is part of your body now. You need to know where it is and get familiar with it. It’s okay to touch it and feel it, it is part of you! Brynn seemed to like this idea and has been very interested in it since she told him that. He asked me what if the battery needs changed and I explained that they will have to do surgery again, but this time they will only replace the part in your chest. He asked if they will connect the wires to the new one, and I said yeah… cool huh? Then he asked what if we change our mind, what if I don’t want it anymore. I told him that they can turn it off but they usually will leave it in. He seemed disturbed by this. He asked why, so I told him they can take out the part in your chest, but the wires will always be there. We hope that this is the answer for Brynn and that some day SOON he will be sEiZuRe FrEe!!! 


REMEMBER…
~ November is Epilepsy Awareness Month!! ~

Children’s trip update


Brynn’s appointment went well. Dr. Einstein was there today after he sent the Intern in… I gave a good lecture to the Intern who will become a Pediatrician soon. Explained to her that Brynn should have been diagnosed at two years of age or even earlier. Explained that his symptoms were overlooked and explained with “Night Terrors, Infant Gas, Articulation Disorder ect.) Told her that I made a promise to myself that I would tell this to every Intern and Pediatrician I come in contact with. If someone would have listened to me many years ago we could have helped him a lot sooner. We are going to schedule a trip down to chat with Surgeon about VNS and set the VNS implant surgery date. He thinks it will be a valuable tool for Brynn, but cautioned me on thinking it is a cure for him. He said we can Hope for a 50% reduction, but he doesn’t expect it to be that for Brynn. I appreciated his honesty. I expressed my fear of the future and said I want it because I want to have any tool that could potentially stop status, he understood and agreed that it is important to have any available tool to help Brynn.

Brynn 12 Brett7

He said because he is Refractory and failed so many meds he doesn’t see him being seizure free, but it is important to only do one change at a time. By the way, if he has failed so many, why is still on all the failed ones except Trileptal? We are going up to 400 mg on Zonegran. We’ll keep the Depakene at 1,250 mg twice daily, Vimpat 200 mg twice daily and Klonopin .5. Once Brynn gets back and stays at his baseline average of four seizures a week for a while we will try to wean Depakene and introduce Onfi, since Brynn’s brain seems to like Benzo’s. While doing the Neurological exam he noticed the small seizures I have been asking about for two years now, asked me if I noticed him spacing out… Told him he has always done it, he said he didn’t notice it before. Told him I call it checking out, that sometimes he goes back to what he was doing, sometimes he doesn’t remember what he was doing.

Tera 22, Abigail 2 and Brynn 12

Of course this is probably seizure activity that we cannot see and he said once we get the big ones under control we need to work on those as surely they effect his daily function. So thankful he noticed them… His Neuropsychological report from a year ago questions is this is happening because he noticed it while spending time with Brynn. His 3 day EEG even mentions seizure spikes with no clinical signs. So, productive visit for Brynn… many more questions for Mom… Still feeling insecure about all this, as I don’t feel like my Brynn is safe. I still daily fight fear of what if, when and why. On the why, we talked about that too. He said he just doesn’t feel like we will get anything back from genetic

Brandon 17, Abigail 2

testing. Even if we did it would not change anything. I said well at least I would know WHAT it is. He said we cannot go in and rewire his brain, it’s just not wired correctly. There is not easy fix here and having a name for it is not going to change it. I disagree, but respect and understand his opinion as a physician. I am in hopes that increasing the Zonegran will bring positive changes… and I am looking forward to ANY change for the better that the VNS will give Brynn. He suggested I wait on the Neuropsychological re-testing, as he needs to be in better Neurological shape for it to be accurate, to see where he is in comparison to his baseline cognitive function before that horrible seizure that took away two years. He looked at the 2006, 2009, 2010, 2011 & 2012 writing samples from Brynn’s home school. He wouldn’t talk about regression, says it’s Cognitive Disability. Not looking forward to that trip again, but perhaps we can get a room next time and actually visit family. There is always Ronald McDonald house for the Surgery day. Here’s to HOPE… and lots of it! It’s all in YHVH’s hands anyway, what do they know… I got a message while at the Dr. and my phone was off. The buyers for our property were approved for the loan, so looks like we will be moving really soon… No idea where, LOL It’s all in the Father’s hands… Don’t want to make any more poor decisions like we did coming here. We will walk away with considerably less than our down payment… and loose all other funds we spent getting Bri’s room built and so on… Oh well, live and learn… boy did we! Kind of excited about what the future could bring… ~Denise  


Brynn had a wonderful time at Camp Alabama provided by Med Camps of Louisiana! For 5 days at Camp Shining Stars for children with Seizure Disorders. He was able to ride a horse, swim, shoot arrows, enjoy nature and he even danced! What a blessing it is to have him have so much fun with children just like him. Priceless, you just cannot put a price on his tremendously happy smile and knowing he feels like he belongs somewhere. Please visit http://www.medcamps.com/ to learn more about MedCamps. They provide Camp experience in a medically supervised environment at no cost for children who other wise would never know a Camp experience. 


They have a wish list for musical instruments, archery arrows, soccer nets, bedding for twin size beds, pillows, art supplies, golf carts, puzzles, costumes, board games, Gift Cards, beds, (Wal-Mart, Target, Lowes), Paint balls and CO2 cartridges. They also have an “Adopt-A-Camper” Program. The program covers 9 wonderful Camping programs for children with Spina Bifida and Orthopedic Conditions, Cerebral Palsy, Developmental Disabilities, Asthma, Autism, Sickle Cell, Hearing/Speech/Vision Impairments, Epilepsy/Seizure Disorder and Asthma.  
                                                

  We got the 21 hour Video EEG results back while Brynn was away at Camp. No seizures were captured on the 21 hour recording! He of course does still have the same areas of dysfunction as well as the Epileptic Spikes. At this time, he does not appear to be in a state of Encephalopathy. We will keep the three medications exactly as they are and will only change anything if he starts a downward spiral again. I will be getting him in to the Neuropsychologist soon to see where he is cognitively. I would guess he is about where he was last August, perhaps making strides in a few areas, but perhaps falling back in a few also. I am looking forward to moving soon… More about that another time! 🙂 Brynn did get approved for SSI last week too. I expected to have to fight for it and he would be closer to 18 before he got approved, but they approved him the first time. Such a relief knowing that if anything happens to either my Husband or I or us both, he will be taken care of. Here in LA there is a 5-6 year waiting list for Waiver services for MR children/adults. I have already picked one of his siblings and discussed with them all that someone will have to take care of him, he is blessed to have 3 older and 2 younger siblings. So it’s only natural to look forward… with praise and thanksgiving that the Father got us this far… and knowing that He and He alone holds the future… With that I look forward with great anticipation, praying for His will to be done, now and always… ~Denise
 
    

Okay, I put this off long enough….  Went back to Children’s for our June appointment. Brynn is currently stable at an average of 4 Complex Partials and 1 or 2 tonics a week. Just ONE Tonic Clonic in the whole month of June and one so far in July. May be the best we will get… Could get better…. could get much worse and fast. Wouldn’t it be nice to know…


 Cognitive functioning has slowed again, and we have weaned Zonegran.   Keeping Klonopin, Depakene and Vimpat for now. We went for a Video EEG on Thursday and Friday last week. He had a good night, so I am unsure if they caught any seizures. Talked to the Eleptologist about Brynn also. She said that he has Congenital Intractable Multifocal Epilepsy.
I asked if it caused his Cognitive Disorder and MR,
she said no… He was born that way. She also told me that with his left Occipital Lobe, Frontal Lobe and Right Centrotemporal .     He actually could be blind, could have not talked or walked. She said he does very well in spite of what is going on in his brain and that Children’s brains are amazing that they can go around these issues and one area takes over the others lack. She told Brynn he was brave and she was proud of him for doing so good through the testing… and she told him he is AMAZING! We talked a little about Genetic testing, said I will have to ask his Neuro about that. I mentioned Fragile X, she said most Fragile X  children are moderate/severe MR, he is mild MR with Cognitive Disorder, could be Fragile X but could be Prader Willi or others too…

Hmmm, Prader Willi… that syndrome that I was laughed at for suggesting to that Neuro before his second known Tonic Clonic? Yeah, oddly enough I haven’t even thought about that syndrome in the two years since Brynn’s Epilepsy got out of control. Looking back on the conversation I should have asked tons of questions… but I froze mentally after she said he could be blind… could have never learned to talk and walk… I was so taken back by the miracle of it all. He can ride a bike, a four wheeler… He may only read on a 1st Grade entry level, but you should see him change a tire and work on a bike…. You should see him play on his iPad… You should see him laugh and play… 

          
Of course now I think what if it moves, starts somewhere else? What then? No negativity Denise, you didn’t come this far to become a faithless fearer of the future! No, take it all one day at a time and be ever so grateful that my precious Brynn can indeed walk, talk and see. Appreciate everything he can do and make the best out of what he has, whew. So… onward we will go. Going to ask again for genetic testing. I went back over his previous Video EEG report and I understand it better now after talking to her. I understand th faulty wiring comments better and I actually comprehend what dysfunction in the brain means. I still have a lot to learn about this Epilepsy monster, but I have come full circle to reality…
The reality is that he was just born this way. Our Abba Father makes no mistakes. He is a beautiful miracle, as all children are. He just sparkles differently and his light just so happens to flicker too much at times. What an amazing boy he is indeed! Hard to believe in just a few months he will be a… TEENAGER!
 Brynn
is so excited to go to Med Camp on the 15th for a whole week!! I am excited for him to have such a wonderful opportunity to have a fun filled week in a medically supervised environment to ride horses, canoe, swim, hike, archery and most importantly meet other children like him! 🙂 

 
 

Lots of beautiful sparkly children will be there… just like him!      🙂






       

Not going to be Seizure Free??

This video is Brynn in Hyper Mode…
 Brynnon has been on Vimpat for 45 days… out of the 45 days he has had 22 seizure free days. It has cut down almost all of the twitching at night in between seizures. When he started Vimpat it was like an awakening, amazing how awake and hyper he was. This effect lasted for the first two weeks, then we saw a decline… and daytime sleepiness in the third week. The fourth week he was not as hyper, but definitely more awake cognitively. This effect seems to have gone away again this past week… he’s not as slowed as he was so I can only assume it is seizure activity related. Trying to be positive, and stay focused. Last week the I called his Neurologist to update him on Brynnon’s progress. He said he is not going to be seizure free, but because he has shown improvement at this time, we will keep all medications the same as we do  not want to raise the Vimpat dose or change anything until this honeymoon is over. We don’t want to introduce more drugs at this time because we may need those drugs in the future in an emergency situation. I have said it myself, but it stung my heart when he said “He is not going to be seizure free.” Well, I went into Children’s thinking they could get him seizure free. I assumed he wasn’t going to be seizure free and we need to take full advantage of any seizure free nights/days once the 4th seizure med was introduced. We are trying to let him ride his 4-wheeler and just be a child as much as possible. The fact that he has cognitively improved surely helps his quality of life, but it also let’s us see where he really is cognitively. It will be a year since the extended seizure, that took so much of him away, in a few months. He is not the same child, he is not anywhere close to where he was in learning. It looks like he is so slow to go forward the seizures just knock him right back. I still do not know where he is going max out with his IQ and Cognitive Disorder. I will take him back next fall to the Neuropsychologist to see where he is and where he is capable of going. The Neurologist at Children’s mentioned doing testing as well. Perhaps they would do a better job of understanding exactly what is going on and what his full potential will be.      

 Yesterday we scaled back, back, back, way back with Brynn’s Spelling… He has not retained much at all over the last 8 months… Brett (7) is doing very well… he’s actually about a year ahead Brynn (12) in Spelling and Reading,  although they are not too far apart in Math and Handwriting. It was great at the beginning of the year to teach them both the same lessons. Depressing to see Brynn get left behind. 

Tera 22 Brett 7
Tera and I

Brett tells Brynn that he is pretty smart to do everything he does because he has seizures. What a blessing…

Abigail is TWO!!
Brandon (16), Janice (20), Brynn (12), Tera (22), Brett (7) & Bri (20)
Tera (22)
Abigail’s 1st skinned knee 😦

Abigail had her second birthday on the same day as Tera got her Medical Assistant Diploma. It is great to see Tera doing so well. I am so proud of her. She has a great job at a Doctor’s office and is still working at another job nights and weekends.