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. 

Roller Coaster

Roller Coaster... Roll On... It's kind of hard to enjoy the ride when you have no idea where the next loop is or even when the ride will come to a halt. So much going on in my life at the moment, it is actually hard to just enjoy the ride. Last week I learned that someone I had gone to church with as a teenager passed away almost 15 years ago and I had no idea. It got me thinking how we just never know... Yeah, I of all people already know all too well you never know, but sometimes it is so easy to get wrapped up in the moments that take your breath away and sting your heart that you forget that we are not promised tomorrow. I recently learned that a close internet friend, close to my age has cancer. What a stark reminder that we should be enjoying each day more... appreciating every moment as though it could be the last...
This is my letter I got today... Hand delivered... Spontaneous love written all over it, courtesy of my Brynnon!

~13 days since Brynnon started Vimpat, and he has had 5 seizure free nights! The last daytime seizure I saw was the day we added Vimpat!~

He got to go to the Monster Jam! He talked about it for 3 days, I finally decided he was going to get to go  no matter what! We had a wonderful, glorious week of the  alert, awake Brynn... the "bAd OnE" that I really missed! He was hyper, back talking... he was playful, funny and he was mischievous. That's the Brynn that is somewhere hidden behind those seizures... behind the random crazy firing of neurons in his brain... We are seeing a decline of that sparkle in his eyes already... His speech is slowing again, he is tired and he is cranky... His thoughts linger and his eyes are dim... That little light bulb is getting dimmer by the day. Only one seizure, Monday night was over 1 minute in the 13 days so far. All the others were less than a minute, which is great... We just have to learn to appreciate ANY and ALL POSITIVE! 

Life is like a Roller Coaster for everyone that ever has lived... Some just have more highs, more lows and more surprises than others! I was talking to my cousin, who I consider a dear friend today. She asked a question that I have asked myself too... when did it all get crazy out of hand... It was after the second known 10+ minute Tonic Clonic... in the early morning hours of Brynnons 11th Birthday. After that second "known" seizure is when it all came crashing down... that's when my peace and life as I knew it was gone. It was that day that I questioned every moment before and would begin to question everything after. Those weeks I spent on the sofa bed with Brynn and Abigail were my training ground to become Brynn's fighter, his voice and his Mom in a way that I couldn't be before. It was there on that sofa bed that I learned about different kinds of seizures... it was there that I fought through the fear to face the seizures... and there that I knew that all I could do for him was ask questions, research and beg for answers... it was also there that I watched as part of him slowly slipped away. I didn't know much about Epilepsy then... I didn't know what Intractable or Refractory meant then... After we started Depakene, life seemed to go back to a new normal. The seizures slowly faded away into the background and it was lovely to feel that it was all going to be okay. There were 8 months in between his Birthday Seizure and the 12+ minute Tonic Clonic. That early morning in August I had no idea where we were headed. I had no idea how terrible epilepsy could be... I soon learned that all my little worries that I had, all of Brynn's life... they were all clues. They were all pieces to the puzzle of Brynn. From the "Night Terrors" to the "Articulation Disorder" to the "Below average IQ," and everything in between... they all meant something. It just took ONE Doctor, who I am so grateful for, to actually read ALL of his medical history. To ask the right questions and to listen to the answers. So here we are... yes, I am facing it... yes, I know only Abba Father can change it! We don't have all the answers yet, but we do have hope... We will never ever give that up!

 

   

Children's New Orleans Update

  It was a great trip to New Orleans for the Children's Hospital appointment last week. Spent some time Thursday with Family and Brian's first boss and our Church of the Nazarene friend Leo, on Friday after the appointment. One of these trips we need to save up and actually visit the Zoo or the Aquarium! Abigail did great until she realized we were sleeping in the Hotel. She said she wanted to go home! It was nice to get away and spend time together the day before and nice after to visit too. Brynnon's appointment went well. Doctor has upped the Zonegran dose to 300 Mgs. and requested the Name Brand as being Medically Necessary. Of course the insurance wants us to finish the Generic off first. Once he is on the increased dose and the Doctor has lab results back the plan is to move up on the Depakene next, he is already taking 1250 Mgs. a day. I am a bit nervous about that decision, as his blood levels a few months back were 96 for the Depakene... but it does seem to be the best to keep the extended Tonic Clonics at bay. The Tonic Clonic's he is having are quick at the moment, and we don't want that to change, but he is still averaging 4-6 clear obvious seizures a week... Not to mention the questionable Seizures or the ones I do not exactly know how to classify. I was not surprised when I read his EEG report and saw that there were 2 events each night that looked like clear seizures to the Epileptologist that did not read as seizures on the EEG. EEG did confirm he does have Seizures with no clinical signs, as the Neuropsychologist questioned also. I took home a copy of the report, wish I knew what it all meant.   

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." (Isaiah 41:10)

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Abnormal Electroencephalogram due to the presence of:
1. Persistent focal slowing over left occiput.
2. Intermittent to focal slowing over the left centroparietal head region.
3. Intermittent bursty slowing over the left anterior quadrant in sleep.
4. Frequent epileptiform discharges over the right centrotemporal head region.
5. Infrequent epileptiform discharges embedded in the left centrparietal slowing.
6. Infrequent epileptiform spikes over the left occiput.
7. Three electroclinical seizures that apparently arise from the left anterior quadrant.

Clinical Correlation: These findings are consistent with multifocal  areas of potentially epileptogenic cerebral dysfunction including an area of persistent slowing raising the question of underlying structural abnormalities in the occipital head region.... 

 At the visit the Neurologist mentioned the term "Epileptic Encephalopathy." He did say it's not Dravet when I asked about Genetic Testing, which I knew from my research. He said we will increase the Depakene and Zonegran one at a time as they are helping, keeping the Trazadone and Klonopin where they are. He wants to bring him in when he gets to a new baseline in seizure control or lack of and do a better MRI with finer cuts to look at the area in the left back that seems to be a hot spot. 

"Delight yourself also in the Lord, and He shall give you the desires of your heart." Psalm 37:4 

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 We came back home Friday night and have had friends from North Carolina here since Sunday. We have had a wonderful week. The boys got to go fishing on Eric's boat, they had a blast! Caught some Catfish, kept some to give to the non-Kosher eating neighbors! Brandon and Eric got to go to the Bay and into the Gulf of Mexico today. Fishing is planned for all the men and boys tomorrow afternoon also. Abigail, Debbie and I will be going to have Dinner and perhaps we can find something else to get into too! Eric announced this evening that he is giving us his boat and trailer. What a blessing! I suppose if you are stuck in Cajun Land surrounded by water you really do need a boat! I see fishing in the future... Going to be focusing on making fun memories, especially now. It's all any of us can do really... Make the best out of what you have, remembering that each day is a beautiful gift given from our Creator to do with it the best you can. There are certainly more smiles around since we got Brynnon his 4-wheeler. I know the boat will bring even more. Such a blessing!! So that's where we are... have no idea where we are going... but I do know one thing for certain... Our Father is with us...

This I recall to my mind, therefore have I hope. It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness.  The LORD is my portion, saith my soul; therefore will I hope in him. The LORD is good unto them that wait for him, to the soul that seeketh him. (Lamentations 3:21-25)

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Next week Children's...

Well... Since the Zonegran was increased, I do see a "slight" decrease in seizures. Counting the definite obvious seizures that were 30 seconds or longer... He has had only 6 seizures in 12 days. Seemed like a lot until I looked at the 12 days before the increase... in which he had 8 definite 30+ second seizures. So... 14 Seizures in 29 days. We have seen much better... but we have seen worse too, so I will choose to be happy about that! May need to bump it up again to see a "honeymoon phase" as they call it... We will meet with the Pediatric Neurologist at Children's again on Thursday next week. We will talk about the EEG that was done at the end of November, his MRI and what has changed. We will hopefully get to discuss genetic testing, if there is still any possibility that Brynnon's condition is a genetic defect. We will also be discussing "other options" that couldn't be discussed over the phone. House has been pretty busy the last few weeks... 

 I installed this great APP for Brynnon's iPad called Rover. It allows him to do time4learning and other flash based programs for his school work and fun things he enjoys like Animal Jam. So he used it the first week for home school and was comfortable enough to play around on it. He found a book... "Diary of A Wimpy Kid" which he had heard about from his friend that comes and stays the night, or more often than not the weekends :) So he's looking this digital book with great interest and then it happened.... As if nothing strange or uncommon or different was happening, just as naturally as he would ask me for help tying his shoe... he asked his little Brother Brett (7) to read it to him... It secretly broke my heart for him being (12)asking Brett for help, but it was so touching to see Brett step up and read to him... the love was so big, so bright... It was just so touching... 

This Momma is burnt out with lack of sleep, stress from many sources and Brynnon's seizures on top. I will be taking some time to get the house organized, get my life in order spiritually as well as physically and focus on the important things starting now. I have been thinking about Brynn and his future a lot. Realizing that I am going to have to take care of him as long as possible and have everything in place for someone great to take over should my life's purpose be complete. Obviously, I need to drop some weight, eat healthier, rest more and get rid of some of the stress in my life. I intend to make this the year to do just that. I mean it's bad enough that I am 40 with a 1 year old! I will turn 62 just days after Miss Abigail Sariah turns 21, geeezzzeee.... I quit the biggest addiction I ever had just before my 40th birthday in July, smoking. I have gained almost 20 pounds in doing so though, and it's not like I was skinny before! Cut calories and exercise I must... Unless I can cut corners and do what seems to be the in thing now and go have gastric bypass! Which I could not afford, so I am gonna have to do it the old fashion way... Good ole diet and exercise. Was talking to a friend a few days ago and she reminded me about the Blood Type Diet. I gave it some thought and I think I am going to go back on it. It did help the Fibro and I know it will help with the weight also. I use to walk 4 miles 4 days a week, before Fibromyalgia kicked my butt... but there has to be exercise I am able to do without causing much turmoil in my poor aching body... I know that not getting adequate sleep night after night is not helping the weight nor the Fibro, but what's a Mom to do? Stress... oh the stress has got to stop, I know I am on my way to a heart attack and life long blood pressure problems if I don't nip some of the stress like NOW. Enough is enough... and believe me I have had enough. I am going to focus on changing what I CAN CHANGE, and believe in faith for what I cannot change, knowing my Abba Father CAN.  

 Brynn had two Complex Partial Seizures followed by a Tonic Clonic on Wednesday. On Thursday, thanks to the camera recording it, I found a portion around 4 am where his right root twitched for 14 minutes followed by a full body convulsion. I found several more that I had no idea he even had over the first three nights. His Neurologist increased the Zonegran by 50 mgs. to 250. The Depakene is still at 625 mgs. twice daily. He also increased the availability of the Klonopin for him and said to give him one if he has more than one seizure in an hour or if I see any signs of clustering. We dropped the Trazadone back down to 100 mgs. on our own, as Brynn was getting tired without it again. We will see if the Zonegran increase makes it necessary to increase it to two again. Hopefully, we will gain better control again. We go back to Children's on March 9, so we are getting close. Feels like it has been forever since the last week in November when he went for his testing. Expecting to talk more this time as we know a lot more about the seizures and have videos to show also. We bought the camera system that is able to record on demand or all night. It works great to record all the night activity. I found a 15 minute seizure I had no idea he had on it. He said he was sleepy that day, I didn't watch it until that night, so I had no idea that his tiredness was seizure related. He is showing interest in Reading again! It is hard to Read with him, knowing that he is doing his absolute best and struggling. He is still using the Merrill Reading Program. He is Reading with the Dig In Reader again. It is a great program for him, from the very beginning of his Home School Journey when we did SOW (Student Of the Word) he has used it. We have tried so many other programs and always come back to Merrill Readers! Merrill strengthens the decoding skills as it builds confidence while using high frequency words in the text. It also has the sequential properties to it that Brynn has always done well with, just like the AVKO Sequential Spelling.  Here is a sample story from the Merrill Reading Program Book B Dig In.

Sid and the Van

I am Sid.
I can fix a van.

The van had a bad fan.
The fan hit the van.
I can tap a pin into the fan.

I see bits on the fan.
With a rag, I got rid of the bits.

I did fix the van.   

I have always been impressed with Brynnon's ability to pick up on sequential information. I had no idea why, and still do not completely understand it, but it works for him and that is all that matters! AVKO Sequential Spelling has taken him so far in Spelling... I wish he could Read the words he Spells. The brain is a complex and amazing organ. The only answer I have as to why he can Spell a word and not Read it is his wires are missing. His cognitive disability makes it impossible to make that connection. I learned the most from this video I found on you tube while researching Fragile X. It is 80 minutes long and I have watched it a few times. I think about this video all the time as I teach Brynn. What was so frustrating to me before, now makes sense!     

Emerging research on overlapping patterns of cognitive function in fragile x, Turner, and chromosome 22q11.2 deletion syndromes and their implications for intervention. Series: "M.I.N.D. Institute Lecture Series on Neurodevelopmental Disorders" [Health and Medicine] [Show ID: 20284]

Brett is doing wonderful with his Reading. He read Fox on Stage by James Marshall this week. He is enjoying Reading more with each new story. I am using AVKO Sequential Spelling with him as well. I think it's a great program for anyone!  Brett has taken a fondness to Brandon's Electric Guitar. He is spending a lot of time with it lately. 

Brett (7)

  It breaks my heart for Brynn to see him advance, knowing that he is being left behind. Brynn had a really hard time when he heard Brett read and realized that he couldn't read the same stories. I explained that some people are just better at some things than others. Brett cannot take apart a Television and Brynn can.  :) This seemed to make him feel better and I have seen a greater confidence in Brynn as he works on his Reading too.  

 Abigail is up to 23 pounds, not bad from 4.11 at birth. She is getting so big... She is counting everything and singing... Such a happy little girl. What a blessing she has been!  She is pretty active and is in the habit of staying up way too late with me watching Brynn... If she sees Brynn move on the monitor she will say uh oh Brynn okay. Children learn so much, even when we think we are not teaching them! 

Brandon (16) and Abigail (20 months)

Brynnon (12)

 

A Smile as Big as the Moon...

Finally got to discuss the movie with Brynn, "A Smile as Big as the Moon." I watched it first to make sure it was something I thought Brynn should watch.  Brynn, Brett and their friend that stayed last weekend watched it Saturday night. Brynn has not been to public school yet, so I found the movie to be a good way to show him both sides of what he could possibly face. He has known for some time it's harder for him to learn. He has heard the Doctors say cognitive disorder, intellectual disability, regression, slow, special needs... but in general he has been blessed and never really been made fun of. He has been embarrassed but not made fun of by other children. Due to the extended seizures we have had to reteach much of what was taught and I realize that he really needs therapies that I just cannot provide him. It is very frustrating to teach him and watch that spark when he "gets" it and watch that spark fade away with a cluster of seizures or worse an extended one. So with this in mind I watched the movie and let them watch. I observed the reactions to the different aspects of it. Sunday evening after the company left, I asked Brynn what he thought about the movie. He responded by saying "I don't want to be special." Of course I asked him why? He said "Because special kids get made fun of and I don't want to be made fun of." Fair enough... I asked Brynn which child in the movie he thought was more like him... He identified himself with the Down Syndrome child because he was funny and liked to hug. He also identified himself with the Autistic child because he was "big." I explained that when he goes to the public school he will not stay the whole day, but will go for therapies like speech and language. So yesterday I got my brain all prepared and made the call. I had already spoken with a Lawyer and verified that Brynnon does qualify for services in LA a few weeks ago. So, I spoke to a school counselor, the Special Education Department and the woman that does the Home Bound services... The conclusion... They have never, nor do they intend to service a "Home Schooled" child. Well... Thank you for the reminder why we should all avoid the Public School like the plague... Still considering calling a Civil Rights or Disability Attorney, as under the law he does qualify as we registered under the Private School option in the State... However, at this point I think the risk to his self confidence outweigh the benefits he would receive from getting services through the Public School.

  I didn't say it because I was scared to... but Brynnon went 8 days recently seizure free! Yeah, silly I know but it seemed like every time I would proclaim 3 days no seizures another would come that night or the next. So 8 days is his new record, since his last extended tonic clonic! The month of January brought 19 seizures that I logged. I logged the ones we saw, except for the really tiny ones that are so quick they are easily missed anyway. I would definitely say he has reached a new improved "normal" concerning his seizures. He is making progress again in his AVKO Sequential Spelling as well as his Time4Learning.com work. The iPad has helped him to have fun and learn at the same time. Hard as I try to get him to have fun with other learning programs, he will spend hours working the puzzles on his iPad. Didn't take long to figure out that he needed some modifications made to his iPad. You tube was disabled, I disabled the browser and added Mobicip for safe internet browsing. Added parental controls and a password too. No sense handing the world wide web to a 12 year old disabled or not! :) 

 Brett is still having those "events" and the plan is still to ask Brynnon's Neurologist what he would recommend I do next. I think most people would get that you cannot diagnose seizures that happen while sleeping, until you do an EEG while sleeping. Makes perfect sense to me, but the Pediatrician... Not so much! Oh well, we needed to see more Pediatricians anyway... There are so many more left near this town.

 Time marches on and usually brings lots of changes with it. Expecting this year to bring many changes, all for the good. I am pretty excited about the prospects for a better life actually... I want us all one day to smile as big as the moon! Speaking of time, I started writing this blog Monday... it's now Friday... so I suppose I will go ahead and publish it!  

Have a Great Weekend Y'all!! Till next time here are some pics of the boys enjoying putting the new bunk bed set up...

~Denise 

 New Camera system with night vision! :) See Abigail climbing into Brett's bottom bunk? LOL

Brett's normal results....

Brett's doing  great in Home School. He is Reading really well, it's amazing how much he has progressed just over the last few weeks. I think he may have been holding back, knowing he was passing Brynnon up. They had company come over for the whole weekend to play and stay the night. It was great for Brynn and Brett to have so much fun playing and being boys.  Brynn has been more tired than usual this past week. I started logging every tonic, tonic clonic or partial seizure 30+ seconds I see on his iPad. He had 19 in 30 days. The Zonegran has made an impact on lessoning them... how long they last and improving or eliminating the postictal period too. His Neurologist mentioned when I reported the last increase in seizures that we still had room to go up on the Zonegran. Think I will put a call in if he continues this trend as it seems like an awfully short "honeymoon phase" with this new medicine.
I spent a lot of time over the last several days reflecting on our past, present and future. Much of my thoughts drift to MS and what was. Amazingly, in MS we had the love and support of so many people who were not family. They took the place of family each one in a very special loving way. Here we have more family, but we have failed to really establish long term constant relationships. So at a point in our journey where we need the most love, support and help... we are alone with the exception of very few. We have wonderful Cajun neighbors, one whom the children affectionately call Gan Gan. She has done so much for us and been so supportive. I pray that our Father will bless her for being such a blessing in our lives. Unfortunately, I have had a family member say about Brynn... "I have talked to him and seen him and there is nothing wrong that that boy" among other things that just are not worth repeating. I have had to fight every step of the way, and finally get some answers, only to realize that it doesn't matter. People have these preconceived ideas about what intellectual disability looks like and obviously Brynn does not fit. I have always avoided asking for help and never expected it. It does not sting any less to see that most people not only will not help in any way, but cause drama to induce more stress. None of us deserved what the last several years have given us, much less people kicking us around while we are already suffering.  Speaking of being kicked around... To that person who sits contemplating and joking about how to hurt us, gossips & creates drama for fun... You better pray and pray hard... because my Father, the Creator of the universe knows and sees all, He does not sleep.

So... I got Brett's results, his 30 minute awake EEG was normal. Pediatrician said she will not order anymore test. I said but he did not fall asleep and a EEG can not be considered complete without sleep. She said it does not matter, maybe he is faking. Faking? Yes, she says she had an 8 year old Niece who faked seizures... I said it happens while he is sleeping. How can you fake a seizure out of a dead sleep? She says, yeah about that... No one has seizures only while sleeping. I said Brynn did, in the first two years there were ONLY seizures while sleeping... then he started having them while awake. Brynnon had the same events as Brett is having for years while sleeping, before and after his first known Tonic Clonic. The doctors I asked said it was night terrors. She said Brynn is different. I said, so basically your telling me that I am supposed to watch this happen until, God forbid, he has a potentially dangerous tonic clonic. She said I am sorry there is nothing else that can be done... Medicaid is not going to pay for another test. I said Medicaid? I don't have Medicaid, I have private insurance. Well they will not cover another test either. There is nothing to be done and no reason to investigate this further. Hmmm... Is it really different because Brynnon is Developmentally Disabled? How does his Cognitive Disorder mean that he is so abnormal that it is accepted that he had his in sleep only initially, but Brett cannot because he is normal functioning? What good is a 30 minute awake EEG on a child that has suspected seizures while sleeping anyway? Brett is normal functioning, he is reading on level and obviously is not having any cognitive effects. I will continue to watch Brett and ask Brynn's Neurologist at Children's about it in March when we go back to talk about more options for Brynn.  Seems nothing can be easy... but that's okay, the longer it takes and the harder you work for it... the more you appreciate it anyway!!! ~Denise

 

The Fear Of the Night

I hate the night and the peace it tries to steal away,

I sleep so much better after the break of day.

I do not like the fear I feel in my racing heart,

Every time I see signs of a seizure start.

I just want them to go away and never come back,

Never to be remembered or get him offtrack.

These seizures you see they take him away,

They nibble at my little boy day by day.

You may not see it through his big blue eyes,

You might have missed it when part of him died.

Maybe you don't know the terror I feel,

Watching him and praying for God to be near.

Maybe you don't know the heartache,

Of just simply praying he will wake. 

Maybe you do know the love for a child,

How epilepsy can make your mind run wild.

Maybe you have seen a little of your blessing slip away,

That night in your memory the seizure monster did stay.

If you know the horror of watching your blessing in a seizure,

You know all too well there is never a moment of true leisure.

It stays in your mind hiding behind your smile,

The fear that the Epilepsy will become motile.

For now prayer is what holds it together,

Appreciating each day regardless of the weather.

For now we cherish each day and all of the light,

We pray reality doesn't come to the fear of the night....

~Denise Marsh

Brett had his EEG...

Brett went this morning for his EEG... and now the wait begins. I cannot stand the wait. It is gut wrenching to know in my heart that things change so quickly. I have known, watched him seize and videoed many, many nights. Yes it will be different to hear the Dr. say... It's always different when someone confirms your fears. What am I supposed to think? Will the diagnosis give reasons for the anger outburst, the irrational fears? Will it give answers for Brett wetting himself in day and night time? Will it give us hope or more devastation? Will it give me answers for Brynnon or questions for the other children? Why is this happening to us? Why does Epilepsy have to be happening in my little boys and have it ever touched our older children? Will it ever touch our littlest one. Is it genetic? Is it the same as Brynnon? Please Abba Father makes these answers come quickly.... I don't think I can handle much more.... 

3 Appointments... One day...

3 Appointments one day...   :) 

¸...¸¸.•*´¯`*•.¸¸...¸Abigail is 20 months and I agreed to one shot, her first ever vaccination/injection DTaP-Polio. She dismissed all of my concerns with her development as all of them "can be normal." Had no idea that eating the coffee table, plastic toys ect. could be "normal." Her weight is 22 pounds exactly. When I told her about her picky eating she said she is a milk kid... between the toddler formula, Ovaltine and other things she is eating she is a lot healthier than these fat pudgy babies that most docs compare all babies too. I was impressed with that statement... I have been to those doctors! :)¸...¸¸.•*´¯`*•.¸¸...¸

¸...¸¸.•*´¯`*•.¸¸...¸On to the next... Brett goes Tuesday for his EEG. She confirmed the videos "look like" seizures, especially given Brynnon's situation. Referred him to a local Dr. for the wondering eye again. It's been almost 2 years since we had it checked, so it's time... Maybe this Dr. will do something to help it. Brett's hearing and eyes are perfect! Hopefully his EEG will give answers to his night time seizures.¸...¸¸.•*´¯`*•.¸¸...¸

¸...¸¸.•*´¯`*•.¸¸...¸Then there's Brynn... She suggested Brynn get more exercise, because he weighs 132 pounds. She said she hasn't seen that kind of weight gain with Depakene, hmmm Neurologist said he has. I told her is is always active and spends a lot of time outside. He is probably the most active in the house for that matter. He is always doing something! She said he needs to be tested for genetic chromosomal disorders, Wow... There's an idea... Duh... Really hope Children's Hospital will go this way at the next visit and I have asked for it over and over again.... He will be seen there March 9th to decide which direction we can proceed in since he is still seizing. The Dr. wanted to give him time to adjust to new meds and balance out since he has had reduction in seizures during the day and has had lessoning of night time seizures. He probably had a grand mal last night I found him in post ictal state pool of drool, twitching eye lids, eyes rolled back... took about 2 minutes to get him to respond. He had a slight fever 99.5 today at Pediatricians office so I am wondering if he is getting sick. Hearing and eyes are perfect! Waiting for His Neurologist to call... Saw a short simple partial this morning, other than that he seems fine now....¸...¸¸.•*´¯`*•.¸¸...¸

Brynnon 1/13/12

Brynn's Starting to Question...

 Brynnon is starting to question things and put the pieces together. He asked me yesterday morning what happened when he was eating his cereal and his bowl was about to spill and he could not stop it. It was a seizure, a simple partial seizure because he did not loose consciousness I told him... While doing his Home School yesterday afternoon he completely messed up in his math, adding two digit numbers he carried when dealing with single digit answers adding a tenth and ended up with most of them wrong. He was disappointed as he thought he had done an excellent job and would have had them all correct. We went over them all and I showed him what he had done wrong. He counted by tens to tell the time instead of by fives. We spent all last week going over two digit addition and telling time. He said when I reminded him about counting by fives to read the clock "it is there in my brain but I couldn't reach it." Last  night he asked Why he has to take so much medicine. My heart skipped a beat... I told him the truth. You have Epilepsy and we need you to have "No Seizures" to protect your brain so you can learn and not loose what you know. His next question was obviously more difficult to answer. Why isn't the medicine stopping them, again I told him the truth... Your Epilepsy is a little harder to treat and we need more than one medicine and maybe try different medicines together to stop them. 

 His seizures are very light when he is having them this past week. He is still having some simple and complex partials during the day and he does have the myoclonic and some partial ones at night and a lot of moaning while sleeping too. Definite seizure activity but at least we are not having major tonic clonics/tonics while sleeping. I spent some time last night thinking about things, researching and seeking answers once again. I don't think the answers will come easily and I don't like feeling like I cannot help my child. When he had the first EEG done the seizures were coming from the top and moving downward. This time they are coming from deep in the frontal lobe. This explains why his seizure types have changed and also explains some of his other symptoms. 

 Treated or untreated the evidence is obvious to those that know Brynn best, seizures have taken part of him away. Seizures have affected his ability to learn, retain what he learns and his ability to progress forward. Seizures do affect the brain when they are prolonged such as Brynnon's major ones have been, they actually cause brain cell death. Michael Wong, the physician heading a 2007 study at Washington University School of Medicine, stated that the observed dendrite damage accounts for the occurrence of cognitive impairment seen in those with seizure disorders. Scientific data does suggest that recurring seizures may contribute to nerve cell injury in the brain associated with declines in cognitive function and quality of life. Repeated studies have proven certain groups of brain cells may die after a single extended  or repeated small seizures. Research over the last few decades show that Seizures do affect Learning, Speech, Higher Brian Functions and  Memory. Frequency of Seizures as well as the length of the seizures are the most important clues to what damage is being done to the brain. Obviously to prevent further damage, Brynnon needs to be completely seizure free. There is no way to know how long it has been since he has been seizure free, because we were not watching him as closely before while awake, at all while sleeping and we did not know the symptoms well enough to even recognize the partial seizures. Knowing what I know now I can say certainly he has had seizures since he was at least 5. There is no way to know how many tonic clonic seizures he has had while sleeping or how long they were. I regret not researching more years ago after the first extended tonic clonic. I think most of all I regret listening to people who said seizures do not hurt children, seizures cannot kill you and it's no big deal. Yes people, seizures can harm the brain... yes people, seizures do kill... It certainly would have helped if the very first Neurologist would have asked more questions of a parent who knew nothing about seizures. It would have helped even more if the second Neurologist would not have dismissed my concerns with learning, regression and cognitive function. That was over 2 years ago, it angers me to think had he listened we could have medicated him then and perhaps already have made the progress that we are looking for... Worse it could have prevented the damage to Brynnon's brain that is irreversible. Yes, I do realize for most children Epilepsy is not going to damage the brain... This was not the case for Brynnon obviously. Yes, I do realize statistically he has a small risk for death due to a seizure. I also realize that is a risk I am not willing to take without knowing I did everything to prevent it. The audacity of some people to even suggest and say the things they say is beyond me. The research even suggest that he is at a higher risk for SUDEP as well as an early death in general because he has a Lower IQ. If the current Neurologist is correct Brynnon's IQ range has always been what it is, nothing changed that. If he is correct both the Developmental Disability and the Epilepsy are both caused by a Malformation in the brain. Yes, the research even supports that IQ's do not change with seizure activity, cognitive function does.

 Trazadone does seem to be helping Brynnon sleep, we should hopefully have him on a more normal schedule in a few days. He is sleeping good this morning, along with Abigail and Brandon... While Brett plays on Animal Jam... Time for everybody to get up and start our day... Taking the rest of the week off from Home School for Hanukkah! Yeah!  :)

Read more:

Meeting News: Do Seizures Damage the Brain? Jack M. Parent, M.D....

http://www.epilepsy.com/articles/ar_1064856376

Do Seizures Harm the Brain? Donna C Bergen, MD...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783429/

Epilepsies in which Developmental and Psychiatric Disorders May Be Comorbid...

http://search.yahoo.com/r/_ylt=A0oG7kcGoPBOYHgAimtXNyoA;_ylu=X3oDMTE2bGE2cGRpBHNlYwNzcgRwb3MDMTEEY29sbwNhYzIEdnRpZANBQ0JZMDJfMTQy/SIG=132h8mukg/EXP=1324421254/**http%3a//www.oadd.org/publications/journal/issues/vol10no2/download/thompson.pdf

Epilepsy and Learning...

http://www.efwp.org/programs/epilepsy_learning.shtml

Most people with epilepsy do not have intellectual disabilities, but a substantial minority of people with intellectual disabilities have epilepsy...

 http://www.intellectualdisability.info/physical-health/epilepsy    

What is a Developmental Disability?

 http://www.cardinalmccloskeyservices.org/what_is_mrdd.shtml

Symptoms of Mental Retardation...

 http://www.mentalhelp.net/poc/view_doc.php?type=doc&id=559&cn=37

How Do Seizures Damage the Brain? | eHow.com http://www.ehow.com/how-does_4598154_seizures-damage-brain.html#ixzz1h5FzfwA8

Developmental Disability...

 http://en.wikipedia.org/wiki/Developmental_disability

What are Developmental Disabilities?

 http://www.nichd.nih.gov/health/topics/developmental_disabilities.cfm

 

Finally got Results...

 Got a call from Brynnon's Neuro today. He said Brynnon's MRI appears normal, but that just means that there is no obvious malformation. He says he still believes that Brynnon's Developmental Problems and Epilepsy are the effects of a malformation and a problem with the wiring in his brain. His EEG was a mess, still very abnormal and of the three complete seizures he had while hooked up two had no outward signs that could be seen and one just had signs in his right arm. He said if I can show him regression we will look into other metabolic or genetic causes, but for now his diagnosis is still Malformation and he considers him to be Refractory. He cautioned me when I said that the new medicine is really stopping the complex partial seizures. He said although we hope that he will continue to respond with the new medication, we cannot let our guard down as children like Brynn tend to "Honeymoon when a new drug is introduced and then loose control again." I asked him about the Klonopin loosing effect and he said with him being on it for almost 3 months it's normal to loose control. I told him that Brynnon has had trouble going to sleep over the past few weeks and he said it's not the new medicine interacting, it's lost effect. He is not ready to remove it because it may be a crucial part to his recent seizure control, we will talk about removing it later. So he called in a new RX for him to take before bed that will help him sleep as sleep is a crucial part of maintaining seizure control. So we will get that filled tomorrow... I am a little apprehensive about adding yet another prescription to Brynnon's brain, but I do realize that it is necessary and who knows it may be the key to complete control and prayerfully forward progression in his learning and cognitive function. I will be contacting the public school for speech/language therapy after the New Year. 

So... onward we go... this sure is one bumpy ride and frankly I am not liking much about the trip... except the people in the car, I am so greatly blessed to have them! We will let the windows down and enjoy the cool breeze blowing through our hair a while, knowing that Abba is still in control...