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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Non-Epileptic Seizures?

So what are Non-Epileptic Seizures? You cannot be among the Epilepsy community too long without hearing or seeing the terms Pseudo Seizures, PNES, Conversion Disorder… So what is it? It is actually a subject that has more stigma attached to it than Epilepsy itself. When you research the subject you find that in the simplest terms it is a diagnosis given when someone has what appears to be an epileptic seizure, but there is no evidence of an epileptic seizure happening on the EEG. Many people with Epilepsy, also develop these attacks and it is actually more common in those who also have a learning disability or intellectual disability. Brett was actually diagnosed with this in addition to his epilepsy, when he had a seizure that did not show evidence of a seizure on the EEG. It’s of course debatable if in fact ALL seizures are picked up on the EEG, whether a seizure can happen so deep in the brain that the scalp EEG cannot detect it is factual but also very rare.
To complicate matters, at least where Brett is concerned…
Brett has had seizures detected, recorded on EEG that he babbled, turned to a voice in, Moved his head side to side, cried… but every one of those are rare in an epileptic seizure and common in non epileptic attacks. His Complex Partials as a rule are almost always over 2 minutes, and this is rare as well.
It is estimated that non Epileptic Attacks account for 2-3 per 100,000 people in the United States. Often it is discovered in the Epilepsy Monitoring Unit after multiple medications fail to control the seizures. They are not caused by Epileptic electrical discharges in the brain, and are thought to be caused primarily by a mental health problem, not physical.
Trauma, Negative Life Events, Stress, and ironically even having to deal with a chronic case of refractory Epilepsy can even trigger non epileptic seizures. The treatment is to seek counseling with a trained psychologist who can help identify triggers for the attacks and help the person develop coping strategies to stop them from happening.

Here are some additional websites and resources to help anyone who has been given this diagnosis:
NEAD
http://www.nonepilepticattackdisorder.org.uk/non-epileptic-attack-disorder/
EPILEPSY Foundation
https://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures
Non-Epileptic Attacks
http://www.nonepilepticattacks.info/index.html

It’s been so long…

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I don’t even know where to begin! We are in a happy place, with less seizures, more smiles and lots of laughter! The Aptiom has been amazing for Brett, in addition to drastically changing his VNS settings. He has gone down to minimal seizures, with having only a few a week. Recently, he went the longest ever without a seizure for 11 days! He has done a year of PT and OT, worked really hard in both and made exceptional progress. He hasn’t used his wheelchair except for a handful of times, in almost 2 years. Initially Brett had fine motor control of a 2-4 year old. He is in range with his IQ now at 6-8 age level. He will start up OT and PT again soon and we look forward to seeing more progress. We also hope to get him into vision therapy, as he has a visual disorder that they haven’t figured out just yet. We will finally get Brett’s Service Dog in a few weeks. It has been a LONG and painful journey to get here… but it’s time. He has been through a lot and healed so much since then. I am forever grateful for the anonymous donor that donated through the Chelsea Hutchison Foundation as well as DomestiPups for this amazing miracle for Brett! 

I still can’t believe my Epilepsy Warrior Boys are 18 and 13 already!! 

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Brynnon is a handsome man now, at 18 he is still funny as ever. He still has a few seizures a week, which causes some aggression and irritability, but other than that he does relatively well. He has done well adapting to the world with his moderate intellectual disability and still loves to fix things, especially taking apart things to see how they work! 

With the time available and money needed I figured out that for me, sewing is therapy! I started the adventure wanting a quilt for Brett. When I saw the prices, I decided to make one for him. Well, that led to me making ones for all my children. I started making VNS Magnet Bracelets along the way too. Oh how I do so greatly enjoy making special needs items that will help a child feel special. I started doing vinyl decals for EMS alert, since we use them I knew other parents had a need for them as well. I got busy enough that I opened my own Shop on Etsy! Check it out! 
http://etsy.com/shop/EWB
Here are some of the items I have made for our family and other special needs families! 

Say Bye Bye to those black  plain medical bracelets that come with your VNS magnets and HELLO to having your favorite colors and your name embroidered on yours. Wear them
confidently because they are stylish, adjustable and comfortable. What are your favorite colors?
Let me make yours today!

Countdown to Diagnosis?

trip1 Five months ago our family made a 600 mile move in hopes of better medical care, knowing the potential and hoping for the best. It took sacrifice & a lot of work, but we did it for the boys. Here we are, 700 miles from any blood relative or anyone we have known more than a few moths! To say it’s been hard would be an understatement. To say it’s been fruitful is so easy. After being here a few weeks we trip5made the appointments for the pediatrician and neurologist. We left the pediatrician with referrals for the cardiologist, eye specialist, OT, PT, ST, orthopedics, geneticist, and neurologist. We will see orthopedics soon but have already made more progress and have more answers than we have had in the years combined in three states down South. We only had one visit with the new neuro and she contacted a geneticist and got the ball rolling for our answers. Some of the answers have been really hard, some we already knew but trip8didn’t fully understand. I was not aware of the complexity of their disability and certainly seeing it in black and white has been a shock of reality for me. Brynn is 17 years old with the mentality of an 8-year-old. Brett 12, with the mentality of a 6-year-old. Both of them have the fine motor control of 4-6-year-olds, which explains their handwriting and drawing being much poorer than Abigail’s who is six now. The disability is permanent and it’s definitely genetic. We have completed whole-exome genetic testing for Brian, Brynn, Brett and I and hope to trip6get further answers in a few months. Brett has low GAA and low Creatine in his urine and Brynn and Brett will have more testing to try to lock down the cause for this. There are some signs in Brett physically that he has more going on than Brynn does and his epilepsy/intellectual disability has been more severe than Brynn.  The geneticist feels that they have at least two syndromes/diseases and upon examining them feels that it’s very likely at least in part a metabolic disease. 
  Seizure wise, Brynn is still, for the most part staying on trip9his great baseline average of just one seizure a week. He does still have the myoclonic hand/arm “twitches” but he doesn’t notice them and he doesn’t seem to be bothered by them at all. Some weeks he has no Complex Partials and some as many as four, but he has definitely leveled out cognitively and he appears to be at his max level in Homeschool. I feel it’s best to work with him for at least another year or two to make sure that he retains what he knows now. Brynn did spend some time in the hospital here to have an unknown growth on his colon removed. He may have trip4some kind of vascular disease, it’s unknown at this point, but he was bleeding from the rectum. He had his last  Tonic Clonic seizure when the third bout of bleeding happened. Not sure if it was fear or loss of blood. 
 Brett has some big seizure free days now, the newest drug Aptiom has had a great impact on reducing his seizure load, he commonly now averages 6 Complex Partial seizures a week. The VNS magnet is working for him most of the time and will stop a seizure as long as he is swiped pretty quick after seizure onset. This has reduced his need trip3for rescue drugs dramatically. He still spends a good amount of time sleeping and has pain/weakness in his body. I believe that being further North has also helped him have less seizures and helped his asthma as well. 
  Both boys have adapted really well to the move and living here. Brynn has had some social communication therapy that has been a great help to him. Brett is on a wait list for Physical and Occupational Therapy. Brynn being older, they do not feel that he will benefit from Occupational therapy. His lack of fine motor control has been an issue so 14699812_10210470724461651_1968853104_nlong, that he has formed the habit of writing that way. Instead, it is recommended that he use a program that will change his speech to text for written communication instead of occupational therapy and a recumbent bike for his lower body weakness will benefit him more than any physical therapy will. We have wanted to get the recumbent bikes for the boys for a few years now, but finances have not allowed it. Hopefully, we will be able to do that once things settle down a bit. 
  Brett and I will be going to a 2-week training program to receive his service dog in June. He is looking forward to finally having a real service dog after the heartbreak of the failed service dog Blue. The new program is a bit different and we will not know the dog breed or name until the second day of training camp, Brett is really excited to see his buddy!

 

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From There to Here,

20160623_174714000_iOSWhen you come face to face with difficult decisions, it’s best to weigh them all out. We have been through so many of these situations, that we are getting better at doing it.  Let’s back up a little.
Back in 2008, we owned a little slice of Pearl River County MS. We were happy, settled and enjoyed the quiet life, we actually had to drive over 30 minutes in any direction to get to a WalMart!  We had chickens, a mobile home we added on to and a very large amazing “Home School Room!” Life changed, my husband was laid off from his long-time established job and we panicked. We decided that the job was the most important factor. 1b6a1-childrens43641_nWe left MS, went to LA where the only job was open at the time and in the middle of the economic collapse we sold our little piece of paradise for at least half it’s worth and put a down payment on some property in LA. I knew it was a mistake then but didn’t feel we had any other choice and I have kicked myself many times since. It’s like we started a new journey inside a whirlwind, nothing has really been the same or even close since. Brynn was diagnosed, we had to file bankruptcy, we were expecting completely unexpectedly our 6th child, we learned that Brynn is intellectually disabled and we found few answers to his complex brain. Somehow we made it through and just when we started to settle again, we faced the reality that we just were not comfortable there in Cajunland. There was once person there, a neighbor, whom we loved and would have wanted to stay for but it just wasn’t a place we felt we could call home. fd8bf-oct9_nSo, we sold that property and got enough back to relocate again to MS. Brynn had his VNS implant surgery and Brett was diagnosed not too long after we crossed the state line. Brett also had the VNS implanted about a year later. I wish I could say that we lived happily ever after, but no we were faced with the reality that the much lower income wouldn’t be enough to pay rent and buy groceries!  My Husband was contacted by a newspaper site in Montgomery in 2013 and we jumped at the chance. We were financially stable for the first time since Jan., 2009. We got settled, fixed out credit and got approved for a home loan! We received our Service Dog, Service Dog Failed and Brett seemed to be having more problems than ever before. No matter what we did, his seizures were severely out of control. He was heartbroken over having to surrender his service dog.  We learned in AL as well, that Brett too is intellectually disabled. In the last year there, I kept getting the referrals the boys needed for their conditions, but no matter who referred them we couldn’t seem to get any appointments. *Record scratching noise inserted here*

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As if a greater sign that we were in the wrong place needed to be seen, the newspaper laid off 13 people and cut everyone’s hours. We talked it over and decided that because of the past layoff, it didn’t seem worth staying. We knew that if the newspaper laid off more people, or shut down we would be faced with the same problem in MS… No work! We updated his resume, applied for a few positions and waited for the big decision-making process to begin. It was simple for me, feeling as though the boys were being neglected in AL medically.  It was a very difficult decision because we owe the same as the house is worth, so selling it is out of the question. So, we took the job in the best state for the boys medically, with options close, further away and even out of state. The insurance offered by the company is better than any plan we have ever had. The price takes close to 1/4 the months income, but it will open doors that we couldn’t open before due to a poor coverage, high deductible 80/20 plan that was about $250 cheaper. So, here we are… We packed up the house, and went for it! It took 12 brutal hours driven overnight for the best seizure outcome for Brett and have spent the past two weeks unpacking. I will say that when you transplant people over and over again, you do learn to better make the decisions necessary with a focus on the entire picture instead of the immediate needs. We carefully considered each place that gave offers and made the best available decision over a few weeks. We did make it back to the country, except this time you can get to Walmart, hospitals, physicians, and anything else within 15 minutes. Now, if we can only recover from the expense of it all and get the AL home rented…. Yeah, that would be great! The last appointment before we moved Brett saw a physician in Mobile, and he increased his Topamax and added Aptiom. I will say that he has been more stable since this change. Less status and clustering, the main problems that have greatly limited his mobility over the past year. Perhaps all along he needed that Topamax increased. That Dr. went by the blood level and increased it accordingly. Most physicians would gasp at the dosage, but his blood levels show it to be just right. Soon, I will be able to take them to a new physician, and not fret if I don’t like them! We should be able to have a much wider variety of choices here and beyond. I hope to get them into the Genetics clinic as well. Wouldn’t it be amazing if this is where we were meant to be all along? I suppose if we hadn’t been through so much over the last several years, we wouldn’t have learned to trust God and wait things out. We have learned a lot, and through it all developed a greater strength, to persevere no matter how bad it looks. I am grateful for all the bad times, because without them I wouldn’t be who I am today.

“Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us. For when we were yet without strength, in due time Christ died for the ungodly. For scarcely for a righteous man will one die: yet peradventure for a good man some would even dare to die. But God commendeth his love toward us, in that, while we were yet sinners, Christ died for us. Much more then, being now justified by his blood, we shall be saved from wrath through him. For if, when we were enemies, we were reconciled to God by the death of his Son, much more, being reconciled, we shall be saved by his life. And not only so, but we also joy in God through our Lord Jesus Christ, by whom we have now received the atonement.” ~Romans 5:1-11

 

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

My Favorite Blog Post EVER!

I wrote this April 27, 2013 before I had Brett’s diagnosis. It is the most read blog post I ever wrote. It’s also my personal favorite! ~Denise
Ones Mountain is another’s Molehill…

 Being Brynn’s 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 recurring 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…

Ah, 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


9/20/2015 Update

We have had some busy weeks… We have once again moved, but this time we purchased a home. 

Brett has been on a roller coaster of seizure instability for months. We had finally gotten great control of the Atonic and Myoclonic seizures when his ammonia level went too high and his platelets too low with Depakote. We went down on his dose and they reappeared again causing several falls. So we added a supplement and went back up. This is the first time with either boy we have had this problem with ammonia and platelets. 

Unfortunately, it did not give the same result and the Atonics came back full force along with Myoclonics and sleeping 14-16 hours a day. As of now we added Onfi and halved his daytime dose for a few weeks and he has somewhat stabilized again with those seizure types. His Complex Partials have not gone into status nearly as often, but the shorter Complex and Simple Partials are about the same. His VNS has been going off the same as Brynn’s for several months now, so I would have expected to see a difference if it was going to work at reducing his seizures like I believe it did for Brynn. We are almost finished weaning Depakote and are seeing improvements in his wakefulness and less seizures. 

Brynn has been pretty stable averaging just 1-2 seizures a week for an entire year. He has only had a few daytime seizures in this time and has somewhat cognitively leveled out to where I presume he will remain. We have worked really hard on inferring and basic life skills while maintaining his Reading and other scholastic levels. I have reached out to the local fire department to see if they will let him volunteer there to give him some positive men to have an influence on his life and prepare him for adulthood.

When people ask what made the biggest difference for Brynn I have a hard time knowing what to say. I do believe the VNS has had a benefit, especially on his depression. The Vimpat has had a wakening effect on his thinking and I believe it helps with the slow processing. The Onfi made a tremendous difference giving him about 50-60% reduction in Complex Partials. The Fycompa has stopped them from generalizing into Tonic Clonics as well as removed about half his Tonic Seizures. Altogether, he has gone from 4-6 seizures a week being a good baseline to his current 1-2 seizures a week. We will take that happily. He has lost over 40 pounds through watching his eating and being back in the country! We are so proud of him!
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On June 25th Blue was surrendered to the Breeder the Trainer got her from. I had her accessed by a local trainer. He determined that she has an unstable temperament and should have never been placed as a Service Dog. He also said she posed a risk for biting our 5-year-old Daughter due to her temperament problems. We decided that was a risk we couldn’t take. It took Brett five days to realize that Blue was not only gone but wouldn’t be coming back. He has had a really hard time adjusting to life without Blue. The trainer agreed to let us place Blue with the Breeder, who says the Mom is a lot like Blue. It’s no surprise really that one of the four puppies did not make it as a Service Dog. I have done a lot of research and have learned a lot over the past few weeks. The most staggering fact came from a fellow Mom’s blog. Her Daughter received a Service Dog from another Service Dog Training facility and she stated that they “temperament tested over 100 dogs to enter 10 into the program. There were 5 graduates.” Wow. Blue came from a litter of 8. Our trainer did not temperament test the 4 available female pups she trained until she picked them up at just past eight weeks of age. How many did she put out as Service Dogs to families like us? ALL FOUR! Not only impossible that 4 out of 4 could finish successfully as Service Dogs, but very irresponsible, just ask any trainer! She stated in an interview with NSDF, that she temperament tested the dogs before they are chosen. NSDF was our sponsor for Blue and the NSDF website states “Paws-4-Seizures, the seizure and multi-service dog placement program at National Seizure Disorders Foundation, is available to any qualifying individual with  diagnosis of seizure disorder or multiple diagnoses requiring the assistance of a highly trained multi-service dog.” Our Experience:
10 Month old Blue was delivered on April 9th as a Service Dog listing Brett (10) as the handler. The trainer spent four days coming to our home to show us how to handle Blue. It was on the second day that we heard Blue Growl and Bark for the first time. We passed it off as dreaming because she was sleeping on and off at the time. When the older two boys would come downstairs to leave for work she would do the same. When my husband and oldest son would come in from work she would o the same sometimes. 
When we received Blue it took a full 10 days just to get her house trained, have to give ny husband credit here he questioned her training from day one because of this fact. We all knew with the first visitor to our home we had a big problem when she had to be taken outside due to growling and barking. The second visitor (a family) proved that we had persistence, no matter who it was she was going to react the same way. Imagine the horror that the “Service Dog” would cause if she were to bark and growl at paramedics coming to help one of the boys? When she growled and barked at a grocery store manager, that’s when we knew we needed help, what use is a Service Dog when you can’t even take it in public? We did everything we could do and were heartbroken to learn that she couldn’t be “fixed” to really fit into our home even as a pet. We adopted a Basset Doxie puppy who Brynn has really taken a liking to, but Brett has not been able to bond with the puppy. We are looking into adopting a German Shepherd from a rescue. She happens to look exactly like Blue, she was malnourished and is even abnormally small like Blue. Not sure if we will get her, but that’s the direction we are going at this time to help Brett with the loss of Blue. 

 As for the trainer that trained Blue, I notified her of this problem with growling and barking on April 28th that occurred on the 27th with our realtor. She suggested good firm prong collar correction. We did that with second visitors on the 29th, again had to take her outside she would not stop. Notified her again on May 9th that she did it to the manager in the grocery and she said she would come show us some things. We decided to have her fixed, hoping that it would help to calm her down if the problem was hormonal. When Blue was spayed, the vet said that she had never been in heat and did not look to be close to having her first heat cycle. So all that time, every time something negative was happening the trainer would say “it’s preheat” definitely was not. Meanwhile, I did a lot of research. She said that she would replace Blue on June 19th, I feel that we have been getting the run around ever since. We were supposed to get a photo of the Golden Retriever she was testing on Jul. 6th and she explained on July 29th that dog wasn’t going to work because she is too mouthy for Brett. So that’s where we are in our Service Dog Journey. Sadly, I have heard from several families that have had bad experiences as well.
Video Links of Blue:
https://www.youtube.com/watch?v=XbLbc4zZVg4
https://www.youtube.com/watch?v=bxWYzbwVeQ8
https://www.youtube.com/watch?v=BDhR55ZYHKo
https://www.youtube.com/watch?v=uyBJwL-pAH0
https://www.youtube.com/watch?v=9NXrwYHd__U
https://www.youtube.com/watch?v=lfSIWnjnhsg

Recommended Reading:

*IAADP Minimum Training Standards for Public Access:

 http://www.iaadp.org/iaadp-minimum-training-standards-for-public-access.html

*Service Dogs Training Standards

These are intended to be minimum standards for all assistance dog programs that are members or provisional members with ADI. All programs are encouraged to work at levels above the minimums:

http://www.assistancedogsinternational.org/standards/assistance-dogs/standards-for-dogs/training-standards-for-service-dogs/

*How to choose your service or assistance dog program:

http://servicedogcentral.org/content/node/517

*Finding a program or trainer and evaluating the one you’ve found:

http://servicedogcentral.org/content/node/591

Sources:
http://nationalseizuredisordersfoundation.org/nsdf-paws-4-seizures
http://seizinghope.com/category/seizure-dog/

What does Epilepsy look like anyway?

As a Caregiver of two boys with epilepsy, I have done tons of research. I have read about different seizure types, symptoms, the brain and lobes involved, genetics, syndromes and the list goes on.

First, let’s go over the basics. There are over 40 different types of seizures. They are all either Partial/Focal or Generalized seizures. We will do a quick review of the basics!

Partial/Focal Seizures start in one area of the brain often called a focal point. The symptoms of this type of seizure depend on what area of the brain is having activity.
Breaking this down further, there are two main types of Partial seizures:

Simple Partial Seizure: Just on small area is involved. The person is aware that something is happening and will remember the seizure.   Depending on where it is occurring it can include strange smells/taste, weird feelings, hallucinations, visual flashing/colored lights, stiffness, numbness, tingling or jerking of a body part, intense fear, euphoria, abdominal pain, increased heart rate and others. Sometimes a simple partial seizure is called an aura, when it happens as a warning of a bigger seizure that follows.

Complex Partial Seizure: A larger part of the brain is involved. The person is not aware of what is happening and will not remember the seizure. Depending on where it is occurring the person may wander, pick up things or pick at clothing, smack lips, cry, scream, repeat words that don’t make sense, mumble, make repetitive movements without purpose (called automatisms) as well as having same type symptoms as the simple partial.

Generalized Seizures start in the whole brain at the same time. The person will not be aware of what’s happening and will not remember, with exception to the myoclonic.

Absences: The person may stare blankly, chew or have lip smacking eye lid fluttering usually for a few seconds and go back to what they are doing. This seizure is often thought to be daydreaming and is easily missed.

Tonic: The person experiences sudden body stiffness without warning if they are standing they will fall (usually backward) and can injure the back of the head. They may bite their tongue or cheek. the seizure is generally very brief and recovery is quick.

Clonic: The person experiences muscles will contract and relax rhythmically. The breathing is likely affected and they may sound noisy while breathing or stop breathing. The skin may become pale or even turn bluish in color and they may lose bladder/bowel control.

Tonic Clonic: The person experiences both the Tonic and the Clonic described above. This seizure is generally the most recognized seizure in epilepsy.

Myoclonic: The person experiences quick muscle jerks, often shortly after waking up. This seizure type is classified as generalized, although the person is conscious and aware that it is happening.

Atonic: The person experiences a sudden relaxation of the muscles and often will fall (usually forward) and this seizure is also known as a “Drop Attack.” The seizure is generally very brief and recovery is quick.

Now that we have that covered let’s talk about how it feels. I have seen many types of seizures but I have never had one. I can only imagine what it must feel like, research the subject, ask the boys and others what they feel. So I did just that.

Simply put, if a seizure is a Simple Partial or Myoclonic the person knows it’s happening and can respond. They will remember what happened. If it is another type of seizure the person will likely not remember much if anything that happened. They may seem confused, angry or even just want to sleep. Most people with epilepsy report that after a seizure they are tired and don’t want to be asked a bunch of questions. They may have pain in the body due to injury or muscle spasms. They may also know that they are missing time and that can be very frustrating. So, none of us that have not experienced seizures have the right to judge how they should feel, and the best thing we can do is let the person just relax.

I cannot imagine what it must feel like to experience refractory seizures, but I do know what it looks like.

 

So this is France?

12715553_10208265896782337_2488624869664445143_nI am a Home School Mom. It shouldn’t have come as such a surprise, I knew, I guess I just refused to admit it. I knew how terribly Brynn still struggles to read at a second-grade level. I knew too that Brett still struggles to work on the level he mastered 5 years ago. Somehow, it did come as a shock and caused great sadness to read in black and white that I have two children who are now diagnosed as being “Moderately Intellectually Disabled.” Perhaps deep down brynnbrett1inside I had hoped that the testing would provide clues to reach them, I hoped that I was missing. Surely there was something that would magically make what is taught stick in the brain for later use.
When your children are little and you wonder what they will be when they grow up. As a Mom, you see qualities in each of your children that make them unique and special in their own way. I can still see those qualities in Brynn and Brett, I still momma2think Brynn would make a great, fix it all mechanic and Brett would surely be a wonderful, caring and compassionate doctor. You have all these hopes and dreams of your children’s future and you want them to achieve great things. You hope that they will have even more happiness than you have and if at all possible that they will grow into successful and God fearing people, with a great deal of moral responsibility and grace that they will accomplish many great things.

Have you ever read “Welcome to Holland?”
12782539_10208366778464316_129385383_n I feel like I embraced Holland, which in our case is Epilepsy. I learned all I could about it and I learned to appreciate our family life in Holland. I joined all the groups, found others like us. I advocated I researched thousands of hours and I read more than the tour guides most refer to as physicians likely do about how we ended up here on the genetic map. I made the best out of Holland and did my very best to help all the other parents who ended up in Holland unexpectedly like we did. Now I have been told that I am not really in Holland, I am in France as we are not just dealing with epilepsy, it is moderate intellectual disability as well.  I knew Brynn had been diagnosed with Cognitive Disorder 12722143_10208366778544318_679468329_nNOS and Cognitive Disability, but I assumed that when his seizures were better controlled that it was likely that his cognitive difficulties would be better. His seizures are so much better controlled than they were 5 years ago when he completed his first neuropsychological evaluation. He has been on the same medication for over two years with no adjustments at all, so this is truly who Brynn is and where he likely will stay for life. Never in a million years would I have been prepared for his full-scale IQ to be 17 points lower. We saw an immediate 3-year regression with his second status Tonic Clonic seizure. It took a few years to even get almost back to where he was and he was already behind in all areas. I can only presume that this is what caused the IQ 12782387_10208366778664321_1202466114_nlevel to drop, I have written before about brain damage from seizures.  I couldn’t have imagined that Brett’s scores across the board would be so low either. Both boys score highest in Verbal Intelligence which I have read is usually the case in Moderate disability. I suppose this is a blessing, as they are both able to speak and understand a broad variety of words. So, I guess I need to explore all I can now about France. We will have to find more tour guides, join more groups and find out all we can about this place that we have been placed. I have to wonder, if it would have made a difference had someone told us when they were born that this journey would be different.
About the Seizures
Brett’s seizures still remain pretty intractable. He is having more big seizure free days since increasing two of his medications. Still having a multitude of seizures weekly. His frustration is evident, especially when he falls or has the seizure clusters. He is still having intermittent weakness in his legs and has not received the appointment for PT to see what the problem is with his ankles yet. Brynn is, for the most part, staying at a 1-2 seizure a week trend. He has gotten pretty good at knowing when he has had a seizure nocturnally, even without bed wetting, he can feel the effects and has no problem expressing me how he feels.