Today...

 Late yesterday afternoon Brynn complained of a headache, he even asked for something for pain and was almost crying. He laid around most of the evening and was quiet for the most part, just a little whiny. He fell asleep around 11 PM, then the myoclonics came back... I thought that the Klonopin had stopped them. His right leg and upper body, arms, shoulders and head was twitching a lot all night long. Lots of nose rubbing and lip smacking/chewing... Saw him have a 1-2 minute tonic event and more clonic activity than I have ever seen in him without the typical tonic start. I don't know if this is due to the Klonopin making him sleep so hard or if I am just not watching closely enough and am missing the tonic part or if it is a new thing. The Neuro said to call it what you want to and describe it... Well this looked like Clonic Shivering so that's what I will call it. He's a bit hesitant to do his school work today... Slept till after 11 this morning. Had a pretty good day, considering the night he had... 
  Brett would pick today to not cooperate at all in doing his home school... It is getting to be more than I can handle just to wake up and function with the fibro out of whack since the accident several months back and lack of sleep with Brynnon... I have not been feeling well the last few days. Maybe I am emotionally drained... 
  Abigail is growing so fast... Over 20 pounds, running... Playing and such a happy baby. Her speech is pretty good so far, I worry more with her looking back on Brynnon and knowing what I know now. Twirling in circles she goes round and round... then she sits... leans back ever so slowly and gently to the floor... and says OH NO... FALL DOWN.... She runs all through the living room and kitchen with her baby. She loves her babies, hugs her babies and kisses her babies... She is such a blessing! The light that sparkles into the darkness....
~Denise 

iPad's and Children With Special Needs

http://a4cwsn.com/

  If you have a child with Special Needs, you simply must visit this link! While researching teaching methods for Brynnon a while back I read again and again how great an iPad is for Special Needs kids and that there are so many apps for them as well. The website above has videos to show you what the app looks like before you buy it! They are also giving iPads to schools and children with Special Needs in each State. They are excepting donations to get this done from the app makers, businesses  and people like us too! There are also free apps as well. I know when I spoke with the Neuropsychologist that did Brynnon's testing about it, he said that Brynnon would benefit from one as he is a visual learner and learns best when a picture or chart is used to teach. The only problem I have in getting an iPad for Brynnon is the cost $500+ which I am sure that most parents would struggle with. I have sent a description of Brynnon to this site, although I think the giveaway's are already assigned. I know Brynnon would do well with it as he has made a lot of progress since we started using  Time4Learning.

http://www.time4learning.com/learning-special-needs.shtml

Which I highly recommend for those that home school! This is a flash based program so it will only work on a computer, and will not work on the iPad. Which is best for Brynnon anyway, as they would be separate activities helping his cognitive & attention difficulties.

  Not too much going on here... I have done some soul searching and praying... and I feel better about Brynnon's situation. It was one thing to point out his symptoms do not match Rolandic Epilepsy... A completely different thing to hear Frontal Lobe Epilepsy, Cerebral Cortex Malformation and can become Retractable in Children Like Him within an hour of meeting a fantastic Pediatric Neurologist who has probably seen it all... I realize that the future could become bleak and I accept that. I also realize that it can be just as wonderful if not better than I ever imagined and that is what I hope for. We are not there yet and have a long way to go, so for now I simply will take it one day at a time... Through much prayer and with a lot of faith we will go forward... I will try to stay positive! In the meantime, we have painted the bathroom, hall and living room... Hopefully tomorrow we will paint the kitchen. Something about painting always makes me feel better. I suppose it is an outward sign of the inward change that is happening. I am forever grateful for all the blessing I have in my life and Brynnon is indeed a special child. I am thankful that the Father thought enough of me to place him in my arms... I don't have a problem with having him stay a child longer than usual, I love children... if I didn't I would not have had six of them!  

~Denise

Brynnon (12) and Abigail (1)

Too much honesty...

 I can do this, I just know I can. I forget sometimes how strong I can be, I just really need a little boost that I am missing this time around somehow. I know I am not supposed to feel this way, but it just does not seem fair. I read a Mom's comment today about what her child did, my heart ached... it ached because Brynnon is 12 and he is unable to write a complete sentence. It aches because I cannot help but feel like I have lost some of my child. This life that I have been given just seems so hard. Yesterday was Ian's birthday, taken so young... so many Birthday's missed. On the 12th it will be the anniversary of Mommas murder... reminders of how unfair it seems, and where normal kind of took a back seat. My Niece asked the other night if I ever wondered what it would be like for Momma and Ian to have never been killed, what it would be like if they were still alive. If they were still alive, I would not be the person I am today. There is strength that comes from surviving trauma that I don't think you can get any other way. However, if Momma was still here I think I would have gained strength from having her love and support over the last 20 years... I think about Momma every day... What she would be like, what she would think of this or that. I am reminded of how Momma loved "special" children. She was great at working with the children who were developmentally disabled. I like to think that she would just be so excited about all my children and would shower them with lots of love. Sadly, I know that my children are loved, but they do not have relationships with very many family members. They do not see most of them but every few years if any... I know it has a lot to do with Mommas murder and Ian's death on top of it. I just never understood how the thing that should make everyone who loved them closer, seems to drive us further apart. It has a lot to do with my inability to feel like I fit in, like I did before Momma died. Of course my running to Mississippi, Tennessee and now Cajunland surely didn't help either. I do not regret any of my decisions, except that I was bull headed when I didn't need to be and not bull headed enough when it was necessary! I am trying to get refocused and bring the necessary changes that will hopefully help in the future. Perhaps it's time to reach out to some kind of religious organization, just out of my need for some extra support and positive thinking. I am a very Spiritual person, but over time have developed a distaste for organized religion, especially the feel good preaching. After years of reading scriptures, studying Hebrew, developing my own beliefs and disregarding all man's teachings, I think it's time.
  I have the appointment made for the 21st with the Office for Citizens with Developmental Disabilities. I am hoping they can help figure out a way to get Brynnon some help with the Speech/Language and other Therapy that he is going to need. I also desperately need to find help with his medical care. We are already deep in the hole owing a half months salary and we still have bills that have not been received yet. I will have to put Brett's EEg on the back burner. Since he has not had any extended seizures and just has the complex partials while sleeping, I think they will likely have a wait and see approach with him anyway. I am almost scared to get the bill from Children's Hospital after his 3-4 day stay for the Video EEG and MRI. Not knowing what the future holds for Brynnon, well that is what I am having the hardest time with. I have faced the worst and hope for the best and for now I really need to focus on the now... Living and appreciating each and every day as a gift from the Father. So here I go, looking for "Positive Changes" to help put that oomph back in my step! If I think about it really hard, I can almost hear Momma say "Denise, don't give up now your almost there!" 
~Denise

Didn't See That Coming....

 So... My Happy Appointment turned confusing... I am VERY happy that I found a Doctor who I know care about my Brynnon! He was very Good in his exam. He asked a ton of questions, let me explain all the types of seizures I have seen in Brynnon. 
 He whipped out some word cards and asked Brynnon to read... no surprise there, he cannot read anything beyond an early 1st grade level... 

  Then... I can still hear it echo... Do you know the days of the week? Oh I am beaming inside, of course Brynnon knows the days of the week... We do after all go over them at least once a month so he will not forget them! As Brynnon says them I can hear him ever so slightly singing them... Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday...  "Very good! Can you tell me the days of the week backwards?" Nothing... "If Sunday is the first day and Saturday the last day, can you tell me the days of the week starting with the last day and continue until Sunday? Saturday is the last day, what day is next going backwards?" Nothing, Brynnon finally says "I can't."
  
  "I am going to say a set of numbers 7, 3, 9, 4  you repeat them" 7,3,4... several sets of three and four numbers later he says "Okay now I am going to say a set of numbers, but this time I need you to tell me the numbers backwards 4,6,9 would be 9,6,4 let's see how about 5,7,2" 2...4.......7......... several tries later It is realized that Brynnon is not capable of doing it backwards, not once correctly given 3 or 4 sets of numbers at a time. He asked Brynnon several more questions and chatted with him... and turned to me and said 
  
  "He is not functioning above an entry level Kindergarten level. I have read all his case history, it is not Rolandic Epilepsy, it is probably Frontal Lobe Epilepsy given the nocturnal seizure activity... Given all his History I believe... (Everything in my mind goes numb at that point)... malformations of the cerebral cortex..." I even asked him a second time what the wording was that he used... "Simply put, something in his brain did  not form correctly while he was in the womb."

  So... One visit and this guy who looks kind of like Andy Dick, dressed so not like a Doctor... Seriously, if I had seen him in the elevator I would have NEVER guessed he was the doctor... Rather blunt with a rather dry seeming personality and obviously the most intelligent person I have ever had the pleasure of speaking with who seemed to have an eccentric Einstein like quality about him did what it took a Neuropsychologist 4 days to do and a three Neurologist and a speech Pathologist over 6 years couldn't do in less than an hour. He also mentioned that it is common in children with Brynnon's cognitive difficulties to be harder to treat and how sometimes these cases become retractable rather quickly. He also briefly discussed that there are many medication choices for Brynnon and that the Trileptol was a very poor first choice and was not surprised at all that I reported negative behavioral side effects. Depoakene being, by my judgment, about 50% effective either needs to be upped, which in children like Brynn can be pushed into the 120-130 range, not the 100 limit or another medicine needs to be added. We are after all looking for complete 100% seizure control. By the way behavior problems are very common in children like Brynnon.. I asked about Fragile X or the possibility of a genetic disorder, he said we will get there, lets get these seizures diagnosed and under control... and see what the MRI shows... 

  Can I just say that Doctor who practically laughed me out his office... I feel like he stole my sanity and frankly he stole valuable time and some of my Brynn... he took something from me, by not listening and not addressing my concerns. I wonder where we would be had he listened then....I will be writing that man and a few others a letter when all this is said and done!


  So... a 72 hour Video EEG and a MRI starting on Nov. 28th. Looks like this is it... Ready or not, I think we will get answers... Had no idea that I wasn't as ready as I thought I was for the answers... I know the Father has a plan in all things... So excuse me just a few moments... it's just gonna take me a  little time to catch up spiritually, mentally and emotionally!


~Denise



 

Potential Happy Appointment

 I guess it is kind of sad when a doctors office calls and you get excited. Brynnon's appointment is one week away on Nov. 1st. I assumed because they could not call to make an appointment for him when they received the referral that they would be horrible to deal with. I had planned on going in, talking to the doctor and him repeating test or maybe requesting test results from his current Neuro then we would see him again in a month, or six...  Nope not this Doctor... His office actually called today to say that my Son has an appointment with them in a week and Dr. D. would like to know what the appointment is for... Oh Wow, really... He wants to know about my Brynnon? So I tell her that Brynnon was recently diagnosed with Cognitive Disorder NOS and that his current Neuro keeps saying it is Rolandic and his symptoms do not fit Rolandic and well we want a second opinion. Oh, well in that case Dr. D. will want to see all of his records... Wow, I am just amazed that this Doctor has this kind of staff, a busy hospital like Children's and they actually have enough insight to actually request his records BEFORE we get there? I am really impressed, his current Neuro didn't even read the 24 hour Video EEG before we asked about it at the appointment to get the results a month later. I actually feel good about this even if we end up not liking him or choosing a 3rd opinion... at least I can respect a practice that actually wants to accomplish something instead of wasting my precious Son's time. With his cognitive function seeming to loose ground, time is not something I feel we have to waste... It's nice to have that bit of positive amongst the negative that keeps popping up all over the place. 
 Brynnon broke his pulse oximeter, so I have to replace it again... I am seeing a decline yet again, mainly in behavior, self control... and cognitive function. I had a hard time keeping it together when he asked me today how many quarters were in a dollar. He was having such difficulty figuring out how many quarters he needed to buy a .69 beef stick. I do not think they are .69 to begin with, but it took a bit longer than usual for him to "get it," and it was heartbreaking because he has always been good with money. He wouldn't have had to ask that question before he went to sleep on August 24th... Which breaks my heart even more because this was after the Neuropsychological evaluation that gave the already devastating results, and that was probably his "normal" no one has yet explained to me if this is his new normal or if he will recover? 
 I will say though that the Klonopin at night certainly does make him sleep better... Still saw a few tonic looking seizures this week and some myoclonic seizures, but he does seem to sleep so much better!! You would think that the better/harder sleep the Klonopin is giving that he would have improved mood. Oddly enough it almost looks like the same pattern of aggression is returning like we saw with the Trileptol. Prayerfully it is just an adjustment thing and next week will be better!!
 Will be going to the Pediatrician with Brett soon too, to get his EEG ordered. I really think he may just have seizures... Myoclonic & Complex Partial at night and very few partials during the day also. Prayerfully, it is not the same thing as Brynnon...   
~Denise 

Neuropsychological Report

 Well... I finally have it. In black and white, more clues to Brynnon's strange mix if woes and problems. 15 Test later we are given a really broad diagnosis of Cognitive Disorder NOS. When you look that up it appears to be a catch all diagnosis that means something is wrong but we just do not have a name for it or we have not identified it yet. He finds significant attention impairment and executive function. The pattern of scores implicates frontal lobes. Processing Speed and attention/concentration are relative weaknesses. His ability to remain attentive over time is impaired, has trouble filtering distraction & directing attention to a specific target. The test results really do give a good picture of what I see and have seen in Brynnon for many years. He actually had the extended seizure that caused some regression just 3 days after the last day he tested for this result. It was advised to continue  where we are and meet again if there is further regression, otherwise it will not benefit Brynnon to complete further testing until around 18 months to assess where he will be at that time and what progress has been made. At least it is more information to bring on Nov. 1st to the Children's Hospital in New Orleans... Perhaps there we will finally get answers... Prayerfully so.... 
 Tomorrow will be a family BBQ, with cake and ice cream for Brynn and Brett's birthday. I look forward to a nice relaxing day! Until next time be blessed!! ~Denise

Breaking Point...

I suppose it is somewhat normal in everyone's life to come to that... you know... that Breaking Point. That point where you feel completely broken and exposed before the world as the fragile human being you are. I have been at the Breaking Point many times. There are the big ones... Momma's brutal murder, My little Brother Ian's death by that hit and run driver, my perfect little Grand Baby Kaylynn's death. There are the almost normal ones... Company you work for going bankrupt & Relocating, Lay Off & Relocating, Breast Cancer Scare, Breast Cancer scare while expecting your 6th child... you get the picture. I do not think there is anything though that quite prepares you for watching your child grow and regress at the same time. Nope, I was never quite ready to watch my little boy have a death look in his eyes, watch them roll back in his head and you realize he is not breathing... then wait for what seems like eternity for him to breath. 1 minute, 5 minutes, 12 minutes... no matter what the length is how many you happen to have seen that week... No nothing can quite prepare you and every time my heart feels like it will beat out of my chest and I fear... I fear that it will not stop, I fear that it will further damage his brain. Yes, I fear that I will loose my sweet little boy forever. As I sit watching him sleep with his stuffed animal, I can hardly believe that he will be 12 Thursday. My Brynnon, the sweet blue eyed dirty blond haired boy that can take apart anything. 

I am anxious all night, waiting for the appointment to see the Neurologist. It's a big day, because after that last 12 minute seizure his meds were increased and I want to hear that this 24 hour Video EEG looks better. I hope and I pray that we can just get a good report, at the very least a definite diagnosis and some answers for why this is happening to my Brynn. Can it be just a coincidence that he is the child that had a severe articulation disorder, he is the child with the cafe' au leu spots, he is the child that has problems with self control, he is the child who is almost 12 with the cognitive function of a 6/7 year old... who happens to have Epilepsy. Over the course of 6 months he has declined intellectually and gained 18 pounds. Somebody has got to be able to explain this to me. So, I wait for his name to be called. I am so ready for this appointment! I have his Oxygen desaturation reports printed and ready all neatly in a folder in order. I have the video's of Brett's episodes he is having at night and I even have a list of questions. I am so ready for answers I cannot stand it. The appointment went so good the first half. "Yes, those do look like complex partial seizures Brett is having at night. Bring him to his pediatrician and he will order an EEG, then refer you to me if it is abnormal. If the EEG happens to be pretty normal, I would watch him closely as this can change at any time." Okay, seems simple enough... We talked about the daytime events in Brynn. "Simple or Complex Partial definitely, but not petit mal. Would be extremely odd for him to have petit mal with his Rolandic Type." This is where it gets complicated. Rolandic? Never seemed to fit in my mind for Brynn. I am after all one of those crazy people who just cannot let it go, I have to research until I am comfortable with the diagnosis and/or someone can explain it to me to get me to see their point of view and agree with them. Degree or not, I need evidence, especially when it comes to my children. A. He does not nor probably ever did have "Normal Intellectual Functioning"  B. I have never seem Brynn drool or his face twitch unless he is having a Tonic or Tonic Clonic Seizure.  C. Brynn does not Grunt, he moans while sleeping. So, my next question is obviously... Oh, so the 24 hour Video EEG shows Rolandic as well? *Record Scratch Sound* Uh, he just had one of those? "He did? When was that? I am sorry but I have not read it yet" 

 Next... So let's move on, here is the Pulse Oximeter Desaturation Report from the 2 minute observed Tonic like Seizure that I observed and timed. I matched this up with the time, so that I could see if indeed he lost oxygen. All Highlighted and with my notes about what the seizure looked like. He then talks about Sleep Apnea and how Brynn has a short neck and he is a bit over weight, this is probably a sleep apnea. Makes sense to me... except i am showing a witnessed drop in Oxygen from normal level to 65% that lasted for 2 minutes. He questions the Pulse Oximeter, I explain I do tape it to his hand every night. He then says he will order a 24 hour sleep study and gives a grand example of how your body is able to adjust to lack of oxygen, used a diver as an example... My child is not a diver and hasn't trained for this... So the day I have looked forward to... the one that I may finally get a few answers... at least find out what is going on to cause these increased seizures and what looked to me like a 12 minute Tonic... and two 2 minute Tonics... Of course when I tell him this he says that I am probably mistaken, because there was the slight twitching even if it was not the heavy jerking as his previous Tonic Clonic Seizures it still has the character of Clonic Activity. I said I think it looked more like a strange postictal phase with slight twitching, he says Clonic. Okay... time to move on... We are going to add Klonopin for him, this should help him sleep better too, especially if you are still seeing the kind of seizure activity your seeing. He is maxed out on the depokene for his weight, so we cannot increase it any more.

  So we leave with fewer answers than we arrived with and more questions really because all of his answers were thus far based on a 45 minute Video EEG taken a year ago. Brett will see the Pediatrician, who will order an VEEG and the Neuro will read Brynn's 24 Hour VEEG over lunch and let us know... 

 So we get home and get a call from the Nurse saying he has read the EEG and Brynnon's awake portion was pretty normal with some right side activity. His sleep portion of the VEEG was very abnormal. I asked what percentage of it was abnormal and she repeated the question and said she will ask the Neuro, I then asked if she could ask him too if he still thinks it's Rolandic. That was before 2 PM today... never did get a call back... I called the office to let them know that Brynnon still cannot swallow a tablet and needs a liquid, they were going to call it in, no problem... the pharmacy I gave them the address and phone number for never get the call for the Klonopin.... Pretty much a wasted day huh?

  I have not really reached my Breaking Point... No, not yet but I am ever so slowly getting there. Brett with Epilepsy... on top of Brynnon's problems... and then stack on everything else. I did not even home school today, and I am pretty sure I will wait till Monday to get it back together. Maybe, just maybe if you let things go, relax and breathe in deeply every once in a while life will settle down and you can get close but can delay the inevitable Breaking Point. Maybe, hope for the best but prepare for the worst right???  

~Denise 

Brett (7)

Brynnon (12 Thursday)

       

Sinking In...

I have been thinking a lot about things that the Neuropsychologist said. It took me a little time to adjust to what I knew to be and what I expected. I guess in the back of my mind I thought that if I worked really hard with Brynnon perhaps I could increase his IQ. I had read a lot about IQ and how just the IQ test is not a real good indicator of intelligence, and how the test can be up to 10 points off anyway. I had read a lot too about how to increase intelligence through games, reinforcing positive internal dialog, Reading to him, More physical contact, listening to classical music, physical activity, family game nights, positive enforcement, less stress.... eating more fish, whole grains, lean meat, citrus fruits, eggs... yeah... I guess I really did believe that if I did these things this test would have much better results than the first one. It may have been a lighter blow had he actually been concerned about Brynnon's IQ "number." No, not this great Neuropsychologist... He wasn't concerned about his number really, because he was looking at the big picture, which doesn't look great for Brynnon's future. I wasn't shocked the least little bit, but I did loose some of the numbness I had acquired from all the research I did. The reality of it all is sinking in... Is it normal for me to be mad, is it okay that I am really angry that this is happening to my little boy?  I don't know what "normal" is anymore and I am not sure exactly how I am supposed to feel. I just know that it is greatly painful... I don't want him to have to suffer the ridicule that I know he will suffer at the hands of mean people. I am so ashamed that I have ever thought negative things about people that have intellectual disabilities... 
 I think about that little boy... He was younger than I was... I saw him in the hallway at school almost every day. He would bring the lunch money to the cafeteria for his class. I would talk to him and he would smile so big and you could see the true joy fluttering throughout his body... He was so happy. He didn't have a care in the world. He had Cerebral Palsy and was the happiest child I ever have had the pleasure of knowing. You could tell that he was not only physically disabled, but he was also intellectually disabled. He reminded me of a baby the way his whole body would flutter in joy...  I think about my dear friend many years ago who also had Cerebral Palsy. She looked like she was intellectually disabled, sounded like she was intellectually disabled and needed assistance walking. She was not intellectually disabled at all. She had a difficult time with speech due to dysarthria, but her IQ was normal. I would have guessed upon meeting her that she had a low IQ, based on her dysarthria and drooling alone. Then I think about Brynnon... There are no outward signs, he has a great ability to shadow what he hears others say. He spends a great deal of time investing in listening to conversations of others so that he can be accepted socially. He doesn't have much ability to have a conversation on many subjects, but has the knowledge of what others have said about this and that. He may not even comprehend the conversation, but he repeats it none the less. Most people that know Brynnon, know that he is very nosy... and likes to repeat what he hears. It is not just to be nosy and not just to gossip that he does it, he does it to make conversation. This is his way of dealing with the social stigma he has already felt and to fit in. He is very good at talking about things that he does not know anything about. 

  So onward we shall go... Time to focus on the future, Brynnon's future specifically. It will be in Brynnon's best interest if we concentrate on being firm in his responsibilities, realizing the potential all he does now to help him be independent in the future. Realizing he is almost 12, therefore does not need to be treated like a baby. I will have to be especially alert to the influences around him, as his judgment difficulties may put him at risk for negative choices both spiritually and physically.
    He is such a sweet little boy, inside this big stout body... He wants to be held, cuddled and nurtured. He is sleeping gently tonight, cuddled up on the sofa bed hugging his stuffed animal.... 
  Looks like it's a gentle enough seizure night, I am going to turn on the video monitor and get some rest. Have to go to the dentist tomorrow to get my stitches out... My fibro has been flaring like crazy, my back and neck have decided to flare too...

Brynnon's Story...

B R Y N N O N ’ S     S T O R Y

A life with Epilepsy… Intellectual Disability...

IT TOOK US 12 YEARS TO GET HERE…

 
AND UNDERSTANDING BRYNNON’S JOURNEY HAS REALLY JUST BEGUN….

Pregnancy, Birth and Beyond…
Born in Nashville, TN on October 20, 1999. His birth, uneventful with the exception of internal monitor placed due to him being a little stressed… Time to push… NICU called he had swallowed the meconium.
No cry… seemed like forever to get him cleared out, then the miracle of birth seemed complete. I heard the cry, that sound you long for…. the one where you know everything is okay…
I held my baby boy and we began the bonding process of Breastfeeding. Brynnon never seemed to latch correctly, we were told to supplement and we did. He loved the formula so much, he wouldn’t breastfeed anymore. Cereal was added to keep him from vomiting after feeding and he seemed to eat more, must
like the texture better… He is such a good baby, he really likes his swing.
I guess this is colic, never had a baby cry so much. The gas is so terrible... he cries and pulls his legs up all the time… So sad when you cannot console a little baby, all the singing, rocking… just doesn’t seem to help my little baby.
I decided not to give him anymore vaccinations. I did twice at 3 and 5 months. He screamed a lot... for 2 days… Doc says this can be normal for some children with the DPT shot. Poor baby a respiratory infection within the week that lasted 3 weeks both sets of immunizations. He is a lot different than my other three children. Boy, were people right when they said said every child is different!
He’s a year old now… What a beautiful blond hair, blue eyed child! He grunts more than he even tries to talk… He seems fascinated by anything that moves! He will play and play for hours with a wheel… He’s stubborn too… Still throws fits, especially at night… 

He is 18 months and walking now! Running really,
he gets so excited he runs into the walls sometimes. He seems to wake up running and fall asleep standing up, literally!

He’s already two years old! What an active little one he is! The fascination is still there… with anything that moves! He loves cars! He is fascinated with tools too! He still has trouble sleeping at night and bangs his head often on the baby bed… on the floor… on chairs…. On the coffee table… I don’t understand why… We
are having trouble potty training… Doc says every child is different, it’s nothing to worry about… We are back in Mississippi now. He loves to pee on trees and there are lots of them at our new home! 

He’s 3 years old now! Wow, how fast time goes. He still wets the bed at night and has this fear of pooping in the potty. He has pooped in shoes, his closet and I am pretty sure he is peeing in the trash can in the bath room. The Doc says that he is not talking because he has older siblings. She says why should he talk
if he gets what he wants by pointing. Still coming in our room and sleeping with Mommy and Daddy, we are working on making him stay in his own bed. You should see the way he lines up his toys! By color, shape and size! He seems to spend days getting things the way he wants them, sometimes he gets so frustrated things aren’t the way he expects them he still bangs his head. Speaking of banging, Brynnon bangs everything! Always making noise… Our home has constant noise, yelling, banging, slamming… So much noise... I have noticed too that he seems to have a very high tolerance for pain. He is very clumsy too, always running into the wall, falling… Doc says he is just so overactive and my other children were slugs!
 

I can’t believe he is 4 already… He loves to sing… LOUDLY Yelling… Doc says he has so much competition in a house with so many children. I need to start correcting him on his speech, he should be speaking more clearly by now. I don’t know why others can’t understand him, we can…. We need to paint this place soon… the walls are covered with Brynn’s artwork… I have resortd to keeping all our home school pens, pencils and colors on top the fridge… It’s the only place in the house he can’t get to!
 

Looking for answers...
Brynnon’s 5 now! We had a baby boy two weeks before his birthday! He is going to speech therapy now at the public school. She says he has a severe articulation disorder. Almost as though he has his own language.
We can understand him, because we listened and learned it as it developed. He’s going to need a lot of speech therapy to be able to speak his message to the world and be heard. Maybe this is why he is having such a hard time Reading. Dyslexia maybe? Let’s get him speaking correctly and I bet he will start
Reading like a pro! He seems so immature for his age, maybe this will be helped by getting his message out, speech can affect a child so much. It must be so frustrating for him to have Mom interpret what he says to everyone… I finally let them catch him up on those vaccinations…
I cannot believe Brynnon is 6 years old! Speech therapy has helped him already. He still has trouble with some words but we are working hard! Still no luck with the Reading though. We have tried hooked on phonics and several other Reading/Phonics programs to no avail. Maybe he is just immature… We will
focus on the Speech and Writing for now…
 
Brynnon is 7! Speech has helped so much that almost everyone can understand him now. Reading has not progressed, but he is writing well most days and can recall every sound each letter makes. Some days it’s like we are starting over, I just don’t understand why… It’s like going 3 steps forward and two steps back every few days… We are not giving up! I realize that he is a bit immature for his age, but how long is too long?
 

Brynnon is 8! Wow, what a great child he has turned out to be. Still fascinated with anything that moves… especially the riding lawnmower! He loves that thing! Tools? What! This child will trip over his own feet to play with tools! Deep in my heart, I know something is wrong… There has to be a medical reason why he is not progressing… Why he cannot read anything besides that old Merrill Reader with no pictures… Doc says that mark on his face is called a Cafe’ au lait spot. She ran some blood work and said everything looks good. Still no explanation with his slow learning. Maybe he is like his brother and has ADD or better yet ADHD he is awefully hyper? I did find the Merrill Reader set on line, it’s actually used for Special Education in schools. I got the whole set for him.
 

Wow, Brynnon is 9 now! What progress he has made with those Merrill Readers. He is still Reading at a
Kindergarden level, but hey he IS Reading! We made up flash cards with all the words and we do these every day, seems to be helping him so much! It is so exciting to see him “get it.” If only he could get addition…
One thing at a time! Focus on the positive!!

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…

Doc says a Seizure can happen to anyone, there is no reason for Brynnon’s. His blood work is good, has no fever… It’s Extremely Rare to have a Seizure while sleeping. He probably will never have another, but if he does, it will happen when he is awake. Really nothing to worry about… He’s gonna be sleepy for the
next day…

Changes…
Husband has been laid off and we are moving back to LA, our home state… We are gonna miss MS so much… One of the first things when we get there I am going to get Brynnon tested, there is a great place there. I may finally know what his Learning Disorder is and why he still cannot read… Other than that
Merrill Reading program… He gets adding and subtracting but still has so much trouble with bigger numbers. Again, it’s like we take a few steps forward then a few backwards… Some days it’s like starting over. I just don’t understand…

I took Brynnon to a Psychologist for testing. She says his IQ is borderline. He cannot be diagnosed with a Learning Disorder, because he does not have a normal IQ. He may only obtain a 4th Grade Reading level or he may do better.
There are further test she can do, but it’s really not going to help me teach him. He can learn, just at a much slower pace than one with a normal IQ. 

I also took him three hours away to a good Neurologist, just to double check. I was pretty much laughed out of his office for suggesting that I thought that seizure he had affected his IQ and that for all I knew he could have had other seizures while sleeping.... Put a baby monitor in his room, you will hear him...

Brynnon is 10! He has learned so much over the last year… We moved next to some really great people. They are always fixing something. Motors, anything that runs he is greatly fascinated by and loves to collect
broken stuff that has parts. Our yard may look like Sanford and Son’s at times, but hey Brynnon is happy! Still working in the Merrill Readers and we have been using the AVKO Sequential Spelling Program with Great Success!! He Spelled “Beginning” the other day! He was so excited that he Spelled a 6th
Grade word! Seems he is gaining so much in his learning journey! I still cannot believe that the Father blessed me with a baby girl! Brynnon and everyone else is so fascinated with his new baby sister! She was born prematurely due to pre-eclampsia and gestational diabetis… What a blessing!  

Brynnon begged to sleep in the living room tonight. 

So, on the spfa bed he sleeps, along with Brett… I am sitting nursing Abigail is who now 3 months old. Such blissful quiet in the house, normally filled with so much noise...
Until…. 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…. Mary Road….
He is not breathing…….. Brynnon Marsh, he will be 11 tomorrow…

EPILEPSY…
I have been sleeping with Brynnon and Abigail on the sofa bed for almost three months. I have seen so many seizures now. Twitching jerking stiffening…. All night long… Waiting to see the Doctor… So many things going through my mind. I must be a horrible parent… How many times has this happened and no one knew? How many seizures has he had while the whole household lay sleeping?
EEG shows Epilepsy… Seizure Disorder… Type? No, not specific… Does this have anything to do with his IQ, did it cause it to be lower? Hard to say… He’s going to start a medication called Trileptal to control his seizures.
Trileptal is making his behavior worse… Switching to Depakene… 

Ah, Better behavior at least… or maybe at this point we just got use to bad behavior…
I really believe he has regressed… He has went back to the beginning in Reading… 

We got this wonderful Emfit Seizure Monitor through The Danny Did Foundation. I am resting so much better now. Every night we have a routine. Brynnon goes to bed, I stay up a while and check on him, make sure his Emfit Seizure Monitor is on along with the baby monitor. After all, Doc says if he has a seizure it will be
the first few hours after falling asleep….

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….

Had Brynnon tested at the Neuropsychologist office…
Turns out he has the mentality of a 6/7 year old… My mind feels numb… Scale back Reading to a entry level 1st Grade. He is not capable of Reading anything at a higher level. 

Why does this have to be so difficult to hear?
Math, he is on a 2nd Grade level he can work on an early 2nd Grade level. 

You cannot push him or you could do more harm than good. 

He has a very low attention span, and can only be taught in 20 minute sessions….
If he can handle an hour on the computer schooling that is fine, but if you notice any stress stop… and go back later if you like. So, all that… all that time I knew something was wrong.
I knew… I knew everything he said, and have even said the same things…
...yet it seems hard to hear when it’s coming form someone who actually 

knows what they are talking about…
…..finally we have some answers…
 

If Brynnon never had a seizure would he be normal? “Unfair question.., 

He likely was born with an intellectual disability, but the Epilepsy probably has caused further damage, no way to tell really….”
Brynnon will be 12 in two weeks. We will have his 24 hour EEG results next week…

The world must be different for Brynnon, 

It's not a bad thing... 

It's "His Normal"

We love him just the we he is!

Neuropsychological Answers... More Questions...

Got the verbal neuropsychological results for Brynnon... Lots of information to process... Confirmed a lot, exactly what I expected, yet heartbreaking to come from a professional. Helped build my confidence as a Mom and teacher, as a lot of the recommendations I had already implemented. The completed report with anything added from today will be mailed next week. He is interested too in seeing Brynnon's 24 EEG result. He feels that he may be having seizure activity that is not visible, which could explain some parts of the test results. He said he is really only capable of Reading on a 1.0 level and I need to back up to that level for Brynn. He is more capable of learning visually than any other way, so adding very simple basic visual information will help Brynn retain what is learned. He also said an iPad would be great ! :) I guess overall I am encouraged that I know Brynnon well, that I am doing everything I can to help him... but my heart hurts for him, knowing he is going to be 12 and has the ability of a 6/7 year old in most areas. It's great his verbal ability is so high, which makes it less obvious to everyone else. Sad though that he is so cognitively disabled. I asked the question that he could guess at... If Brynnon never had a seizure would he be where he is? The answer is it's hard to say, he probably would not be as severe, but he would likely still fall below normal. In the back of my mind the question burns and will likely burn forever... How many undetected severe seizures has he had...  I guess I will never know, but I definitely will always have that question. After the last seizure we know that his are extended... and in all three cases where it was detected someone was in the same room and awake. So realistically we can not really know how many he had while everyone was asleep. Even with the Emfit monitor that provided so much peace and security... There is no way to know if it would even pick up a seizure like the last one, as the clonic part was not violent like the others. It possibly was a Tonic seizures with mild clonic aftershocks, as that's what it looked like. OY... All I wanna do is take a NAP... but I guess I will let all this settle in my brain while I do my daily task... ~Denise     

Almost...

So, getting a little anxious about the Appointment (Thursday) to get the Neuropsychologist results for Brynnon... Seems like it has been 6 months waiting, but it has actually been 2. Of course I have some updating to do with him as well as far as the regressions we have seen in Brynnon since he was tested and had the major seizure. He still has not caught up back to where he was, which makes me wonder if it was permanent? Surely he will catch back up to where he was, but in the big picture the regressions are bigger than the catch ups, seems it takes forever to catch up. I was going through some of his home school from two years ago. It is so sad that his handwriting was actually better two years ago than it was even before the last major seizure. The computer schooling seems to help, as it does all the reading for him and doesn't seem like what he calls "baby work." The headphones drown out all the distractions in the household, which interferes greatly in his concentration. I hope if nothing else the neuropsychologist will have great positive things to say about Brynnon's future. His future is what I worry about most. I realize that people who have Intellectual disabilities can live normal lives in society. I just worry that he will not be able to grow and flourish with the regressions happening. Just can;t seem to shake the feeling like we make all this progress only for a terrible seizure event to wipe it all away... There we are left to try to get it all back in again before we loose anything else...So Thursday is the BIG day for getting some answers concerning Brynnon's learning journey.... 
 The 18th is the Neurologist appointment to get the results of the 24 hour EEG. I will also bring my videos of Brett and ask about his night time events. It is bothersome, as Brynnon did the same things before he was medicated and I am very afraid that it is the same thing. Scares the crap out of me, that Brett could have the same thing wrong...  I hope I am just paranoid and it's nothing... That's not what my gut says though. I hope he has better answers about what seizure types he is seeing and why his EEG was so erratic. I expected it to be normal while medicated... and I have yet to find a sleeping EEG that looks like his. I have looked at hundreds of them online... but not one looks like his. I will also be asking a lot more questions this time, as I know a lot more now. At the end of the visit I will have to tell them I need a copy of his records to bring to New Orleans for the Epilepsy clinic at Children's Hospital. I hope if nothing else they will have answers... I just need to feel secure that everything is being done that can possibly be done to prevent anymore seizures or regression. While would  we are at it, I would like to know if it is or could be genetic and if Brett could possibly be showing early signs. 
 It is so frustrating not having the answers to so many questions, but it is exciting to think that sometime in the next month I may have most if not all of them! 

Wanted...

  A nice peaceful sleep without worry that my little boys may have a severe seizure while sleeping and not wake up... while your at it, how about some assurance that this is not some rare genetic thing that my Brett has too? Yeah, I know big request... How about a device that will sound off before any kind of seizure? Unlikely, I know... Worse part about it all is there are so many parents enduring the same trials. Some so much worse... I just don't know how to do this one yet. I have overcame so many trials... but this one seems to be taking everything out of me. Maybe it's the fibro, but I feel like I could sleep all day... I just cannot seem to sleep at night... I have done tons of research... all of which has really not helped much but sure does raise more questions! I will be ordering the pulse oximeter, perhaps this will help and give more peace of mind with Brynn while I figure out what's going on with Brett... Oct. 8th can't get here fast enough for Brynnon's neuropsychologist report... Oct. 18th can't get here fast enough for Brynn's Neurologist to explain his 24 hour EEG findings. If all else fails New Orleans on Nov. 1st may have answers... otherwise we will go out of state for answers! I have a feeling we will have to redo the neuropsych testing again, as he has certainly regressed further since his Aug. 25th major seizure...  

Relaxing...

  I realize after looking at hundreds of EEG images that only a doctor can tell me what Brynnon's EEG means. Brett has had a few more questionable episodes in the last two nights. No use bringing him to the Doctor as it's not tonic clonic, but absence or some kind of simple partial seizures if it is anything with him... Keeping my cell phone and camera handy to record so the Dr. can actually see, instead of just me telling what I am seeing in him. Brynn seems to be doing okay, nothing more than myoclonic activity and groaning while sleeping. Hope to get a pulse oximeter soon to check his oxygen levels at night. Looking to get one that has the option to strap to the wrist at night, an alarm for levels that fall under normal levels and software that would enable me to download a nights activity would be great too. Believe it or not, they actually have these! So, I will be on the look out for the best deal, I have a few in mind so far... Had a relatively good home school week... Of course it was a "easy" week as Brynn and Brett fondly call it! Back to serious business next week, Abba Father willing! 

So here it is...

  You know the point where my uncontrollable urge to research and figure this out kicks in... OCD? Perhaps... I cannot stand the fact that I don't know what is wrong with Brynnon and I don't think I will be able to wait to find out if Brett has the same thing or if it is something different. Is it coincidence that both my blond haired blue eyes boys have behavior issues? Is Brett really just acting like Brynnon or is it the same thing just in early stages? Paranoid? Perhaps... Maybe Brett's few little things were just night terrors... Maybe it's nothing at all in Brett. This thinking of course just leads back to needing to know what "it" is in Brynnon. I have found so many EEG images taken while sleeping and I cannot find a single one that looks like Brynn's. I did find a few syndromes that children experience seizures and also have intellectual disabilities and or regression. Why is this so important, to know what "it" is? I need to know what the prognosis will be for Brynnon. I would like to know if he will just grow out of this and catch up with others his own age, or will he stay behind? Is his cognitive function going to get better? Can it get worse? I pray that he will outgrow it and catch up, but if this is not the case, I want and need to know now... I want to know why my almost 12 year old has regressed to rubbing my hair between his fingers like he did when he was very little... Why has his Reading and Learning regressed so much? Why is he acting like a child much younger than he is? It breaks my heart... I need answers and I want them NOW. How am I supposed to peacefully sleep at night, knowing that he could have a seizure... What if the alarm does not pick it up? What if I cannot hear him on the monitor? Will my life ever seem normal? I probably wouldn't know normal if it happened anyway! 


~Denise

24 HOUR EEG

~All wired up and Awake EEG~

 Brynnon is at the Hospital doing the EEG. I stayed with him until 9PM, then Daddy came and stayed with him overnight. I really hope they will give a better diagnosis with this extended EEG. Prayerfully, we will have a diagnosis and better understanding of Brynnon's future by the years end. So here are the pictures of the screen shots I took while he was napping this evening... Next appointment is not until Oct. 6th, with the Neuropsychologist for the results of his testing before the last prolonged seizure. I am not even sure if the results count, as he has regressed further. His regression is severe enough for our neighbor to notice. Of course people that do not spend any time with Brynnon would not be able to see it. People seem to notice when they meet him for the first time if they have a conversation with him. I suppose it may be because he is so big. Speaking of big, his weight has jumped again from 118 on Aug. 25th at the emergency room to 124 yesterday at the hospital.  Brian said he did good last night, at least he had a gentle night! ~Denise

A little nervous...

Well... Monday is the big day. Brynnon will go in at 2 PM and stay for his 24 hour EEG test. I am so glad they are doing this test, to see a good picture of what is going on in his brain while medicated. Janice & Brandon witnessed what we all believe was a short seizure in Brett last night. This is not the first time it has happened, but the first time that someone besides myself actually saw what he does while sleeping. I was thinking about it last night, and getting upset thinking again about all those times I talk to so called doctors about Brynnon doing the same thing. I was told they were night terrors. I will ask Dr. Flatt about Brett when we consult with him. I know it would take some time to get an appointment with him. It may be the same thing as Brynn and may be early seizures... Perhaps it is even a clue in Brynnon's diagnosis? So... Monday & Tuesday at Womans and Children's for the EEG. Neuropsychologist results on the 6th... Back to Dr. Flatt on the 18th... the Children's Hospital in N.O. on November 1st for consult at the Epilepsy Center. I am hoping that we will have a diagnosis and better understanding of Brynnon's brain and what his outcome will look like by the years end... Brett will more than likely have an EEG also, as I am going to request it. Hopefully, if it is the same as Brynnon has, we can possibly at least prevent some loss of cognitive function by early diagnosis and medication?  I just wish I had pushed harder years ago..... ~Denise

Brynnon seems to be regressing further in his learning and behavior since that last seizure. Even the neighbor has noticed a decline in his cognitive function. I wish I could just walk into an office and get an accurate diagnosis today, it's just not that simple. Is it really a decline or do we notice more? Is it due to the seizure or is whatever "it" is the cause of the seizures? So many questions perplex my mind and keep me going from website to website. So many things seem to fit, like Fragile X syndrome... Is it really possible that something has been missed by so many people? How can so many doctors miss something like this? How can a speech pathologist miss whatever "it" is? It really breaks my heart watching helplessly as he seems to have trouble fitting  in, the world just seems to be a confusing place for Brynnon sometimes. He would be happy fixing things, tinkering with motors all day long. He could get lost in a lawn mower... yet he can only read on a 1.6 level with help and guidance. I worry about the other children too, what if it is a genetic?  Maybe I am making a mountain out of a molehill, I really hope this is the case. I want answers and I want them now!
~Denise

OY!

 Today it was evident that Brynnon indeed did loose some of his former learning with that seizure. His Reading was very Slow and Labored, although it was the same story we read Monday-Wednesday last week and he did great. I didn't even see the point in stressing him with Spelling so he did his computer work instead and no written work. I wish there was an easy way to switch the part of the brain that seems to slow down after a bad seizure into high gear again. Perhaps it just needs time to heal or get the cells back in order again... It just breaks my heart that he has such a hard time of it. He is 11 years old, barely reading on a 1.6 level and "was" Spelling on a 5th/6th grade level. I cannot stress enough how great the AVKO Sequential Spelling is! I am so thankful that he was blessed with a lot of common sense. It's funny how people who have not spent any time with him become judges on how smart he is and how he doesn't have a low IQ... I know they think is bad, lazy, not trying, a boy... whatever. It doesn't take but a few times to know who you can and cannot talk to about Brynnon's condition. Of course today was the day Brynnon would ask what grade he is in... Arghhh... Really, today of all days. I had to be honest, especially when he asked what grade his reader was. Middle of 1st Grade... but... You can Spell some 6th grade words, so you must be in 3rd grade!  Looking to get him an additional alarm, a pulse oximeter that can help alert us in the event his oxygen level drops and would keep a record of his oxygen level for the docs too. It's going to be a long wait now until early October for the results of his testing with the neuropsychologist... and after this seizure and oxygen loss how accurate are the results going to be anyway?

 Emotions are running in overdrive around here... My Fibro is acting up more than usual... Prayerfully this will all settle down quickly... PLEASE!!! As I responded to a friend today... I know it will get better... with a little time, lots of patience and an abundance of faith... All Things Are Possible!!

This too shall pass... Really it will...  RIGHT??? 

~Denise

New Scool Year

  We have had a great start to our new home school year. Brynnon has completed testing with a Neuropsychologist. Unfortunately, it will be early October before we meet with him to get the results and probably mid October before I get the full report in writing. I hope it will be a time for answers as this Dr. specializes in the assessment of AD/HD, Autism Spectrum Disorders, Learning Disorders, Brain Injury, Epilepsy and Seizure Disorders, Tourrette’s and Movement Disorders, Developmental Delay, Dementia, and Chronic Pain. Brynnon could easily fit in several of those categories.
  Brynnon is almost recovered from a tonic/clonic seizure this past Thursday morning. My Niece Janice is staying with us and she is sleeping in Brett's bed.  Brett never wanted to sleep in his bed, when he did, he almost always ended up on the living room sofa before morning anyway. She went to bed and heard Brynnon moving a lot. This is not uncommon for Brynnon with the jerking he does at night. When she listened more intently, she thought he was choking and got up to check on him. She realized he was having a seizure and came to get me. I asked for the time and it was 1:48 AM. I turned him on his side and prayed. I knew he appeared to not be breathing and prayed for him to breath... It was 1:51 AM when I asked my Daughter to call 911 as his lips and chin turned blue. It was 1:50 when he started breathing and stopped jerking. He went into the sleep stage and came out 3-4 times with a blank stare and a few seconds of stiffening and a few jerks each time. Prayerfully this will be the last one... It was very frightening... Every seizure is frightening and as his Mother, just breaks my heart.
  Brett is doing great in his school work so far and he is excited to read new stories and start the AVKO Sequential Spelling that Brynnon has used for the last two years! It's on to Book 2 for Brynnon and Brett will start Book 1! Brynnon has had a few days off, and will start again on Monday! It's still HOT HOT HOT in Southern Louisiana! Temps today were approaching 100 and it felt like 105, or so says the news, felt like 110 to me!
 Be blessed until next time,
~Denise

Oh what a HOT Summer!

Well, the Summer is off to a HOT HOT start! Brynnon was approved for Med-Camps of LA and will be going to Camp the last week of July. They have Camps set up for children with all kinds of problems, so that they can enjoy what otherwise they would miss! The Camp he is attending is called Shining Stars and it is specifically for children with Epilepsy. Horseback riding, canoing and all kinds of fun! I am excited for him and think he will have a Great time! Home School has slowed down for the Summer and will pick back up in late August. We school year round, just enjoy more leisure days when the children can play with other children and enjoy outside. Have a Happy, safe Summer! ~Denise