malformations of the cerebral cortex

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Ones Mountain is anothers Molehill…

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

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

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

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

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

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

Thank God the ambulance is here…
 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
 

 

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It’s been a while!

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

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


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

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

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

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

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


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

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Horrible Month…


Wow, this while month has been completely stressful in every area of our lives. The month of August was terrible for Brynnon, not counting the small seizures (Absence) his total for the month was 65. He suffered 38 Complex Partials, 23 Tonic and 4 Tonic Clonic. This all started with 7 Tonics in a cluster on July 31st. His average was 4 per week in the months of April-July. On July 13th we completed the wean of Zonegran to try to help his cognitive function. He was at MedCamp the following week. He did have a Tonic Clonic on 7/25 that was 1 1/2 minutes. I considered it all to be stress, especially since my Husband was offered a job in NC. So off to NC my Hubby Flew to talk about this wonderful opportunity.  Before he even landed our cash buyer on our property backed out! Argh…   Our 2 year old Daughter took off running from us with a pencil and fell lacerating her eyelid. If that wasn’t horrifying enough the ER left a pencil shred in her eye. Lots of other little stress inducers… I assumed it was stress… 
All assumptions came to a crashing halt when I went back over all the video and filled in the seizure calendar. I was horrified at the amount of seizures. Horrified even more that I let anyone convince me that 4 seizures a week was okay. Horrified that I had let my guard down and let this go on… 

  It’s one thing that I was giving that extra Klonopin for clusters several times a week…..



When I saw that it didn’t seem to be working and worse this didn’t seem to end. I made the call to his Neuro. He started him on Ativan to break the clusters up. It took three nights to see any effect, but gradually it did work and broke the clusters up. The assumption was made that it was taking the Zonegran away. Looking at the calendar it makes sense. So we started the Zonegran again. 100 mgs for 4 days, then 200, then 300. Finally on the 3rd night of the full dose everything has calmed down. Not quite where he was before August, but certainly much better. Brynnon has always completely detested Zonegran. It’s a capsule and he cannot swallow it, so we put it in pudding. We will go back to Children’s on 9/11 and we will be talking about the VNS implant. His Neuro says it’s best to think of it like a medicine. Some do not see results at all, some receive seizure freedom.He feels Brynnon has about a 33% change of receiving a 50% reduction of seizures with it, but it will take at least 6 months to see this result. I have already decided it is worth the risk based on the assumption that it could help him in the event of another status seizure and it would be wonderful if he could be one of those that it stops all seizures! He also mentioned Onfi… Knowing how great Klonopin worked for so long and after seeing the Ativan kick in and get control of those clusters, well I think Onfi is worth a try with it being in the Benzo family. I just don’t know where they will fit it in. We will surely be talking this over next week. After going through these past weeks, I know one thing for sure… FOUR SEIZURES A WEEK IS BETTER THAN 13 or 14 A WEEK, BUT HE NEEDS TO HAVE ZERO. So, praying that September will be a better month for Brynnon and our family.

My sweet Brandon will be 17 on 9/5. I just cannot believe that time has passed so quickly. I have always reffed to him as a “Dear Child” after hearing a sermon years ago. The Pastor said a dear child was one that was after the Father’s heart, obedient to his parents and full of love for others. That Brandon has always been. He only lied to me once in his lifetime, about whether he completed his home school work. I do  not remember ever having to discipline him. All he ever needed was to be told, sometimes firmly, but that was enough… 
 

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


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

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

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

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

Tera 22 Brett 7
Tera and I

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

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

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

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Watching….

 It hasn’t occurred to me before, funny… I guess I never thought about it, you know how terribly abnormal it is to sit  in the same place, night after night watching… and waiting… for my Brynnon and my Brett to go to sleep. Brynn is usually a little whiny before bed, usually says he does not want to go to sleep. After the last extended event I feel guilty to fuss at him like I did that night before he went to sleep. I have a hard time shaking the thought that maybe he knows… I have seen him throw a fit many nights when nothing happened, but that night stands out and scares me. He stomped his feet and refused to go to bed… he fussed and fussed he was not tired and didn’t want to go to bed. Two short hours later he woke up in an Ambulance… I guess all Mommies with Epilepsy feel the same way, knowing that emotions can trigger Seizures. Of course you have to discipline, but it just gets scary sometimes knowing if he gets overly upset he could go into another seizure.  Sometimes he even says he is scared to go to sleep.  Once we get the 72hour EEG and MRI over, we really need to focus on getting the boys back in their room and hopefully by the new year have a new bunk bed along with a camera so Brandon, Brynn and Brett can all sleep in the same room and we can as a family get some normalcy back.
  There he lays with his “Wubby,” the stuffed animal he has been sleeping with since just after the August 25th extended seizure that caused some regression. I talked to the Neuropsychologist about it, and him rubbing my hair between his thumb and fingers. He said it’s not a problem and he was not surprised to hear it, that with the regression this happens. Honestly, I think he sleeps better with the stuffed toy than he does without it, so be it. When his friend that is 10 came to spend the night, it didn’t bother him one bit to hug his “Wubby” and go to sleep either… 
  So here I sit in the same spot, waiting for them to fall asleep… Brett almost always fast asleep long before Brynn… then Brynn will drift off to sleep… That’s when the watching starts. Some nights Brynn is fine for an hour or two then starts seizure activity, other nights it starts as soon as his eyes close and some nights he is so still and so quiet I have to check and make sure he is breathing…. Tonight it’s just a little twitchy… I hate these nights because I don’t know if it’s going to settle down or pick up… So I sit quietly rocking Abigail to sleep… I think about my Momma and that she will be gone 20 years this Saturday… I think about Brett and what his Seizure activity means, so thankful it has not progressed and that he has actually calmed down a bit the last two weeks. I think about finances, argh, bad idea… I think about the oldest two and their jobs… I think about Brandon and his future… and I pray about all these things, all the children who suffer and all the adults who suffer… and I think to myself, what a sad world we live in… a sad, sad, sad world…. I am so thankful that our Father sprinkles some joy in mine every now and again! ~Denise

Abigail enjoyed her lunch….

Oh yes she did!

 
Picture Brynn took of his own eye  :0)


   
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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 
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iPad’s and Children With Special Needs

  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.
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)