Surgery countdown, Moving and back to Peace!

WINNERS!! $5 Math Challenge!!

Here we go... Surgery is in 10 days, next Thursday for Brynnon's implant. We should be able to leave the hospital that afternoon after the approximate 2 hour surgery. His will be on when we leave the hospital, which is relatively new as I understand it they have been doing it this way at Children's Hospital in New Orleans for about 6 months. With the Zonegran back on board and increase to 400 MG he has returned to his "normal Baseline" of 4 seizures a week lasting over 30 seconds. We will be moving as well, planning to sleep in our rental soundly when we get home from the surgery. We are greatly looking forward to going home where we can have PEACE again. Recharge after the last 4+ years, which have been terribly hard on us as a family.

Brynn and Brett with Pop Ollie in MS

The children and I will be returning and my Husband will stay here for now. Trying to make it the least stressful as possible for Brynnon. Hard to do when he loves the neighbors here so very much. Going to be leaving the two oldest children (22 & 20) here as well, that just makes things harder on us all. I know that in the long run it will all work out and this move will bring the needed changes our family desperately needs. So, home we will go... back to the peace and quiet that we loved so much. Back to nature and back to good God believing and fearing people. People call Pearl River County Mississippi God's Country and Holy Land USA. The reason is the remarkable peace that you feel there, it's like no other. We have been in many places and that is the only place that ever felt like home. I will update when I can, will be back and forth over the next week or so... and looking forward to going HOME when the surgery is done. The next ten days will be intense... Packing, Moving things, surgery, moving more. We will be having some fun and visiting family for a few days too though! Prayerfully the nest time I post, it will be from the Mississippi woods... Ahhh, I can almost feel the peace just thinking about it! :)

Brett and Abigail

         

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

 

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

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