Catching up!

 










 

There are a few of you who follow this blog of my sporadic at best ramblings who are not involved in social media, so sorry for the long span without an update. We have been on this Epilepsy journey since 2009, starting with Brynn. Never did I consider it was even possible for any of our other children to develop epilepsy. There are a few people that say things like “Your so strong.” I hate that because I am not at all strong. Without God’s grace and help, I would have never been strong enough to get through the stress and trauma I have seen in my life and surely this epilepsy monster would have put me over the top. I have likely done more research than the six neurologist, too many pediatricians, Psychologist, Neuropsychologist, two epileptologist’s and the geneticist combined trying to figure my boys condition and cause of it, what we are dealing with and how to help them. I have still not given up, like everything else in my life I am geared to over obsess over problems until I to let it go because I start to loose my mind or until I reach the answer, whichever comes first. Unless you have a child with intractable refractory epilepsy it’s impossible to comprehend the roller coaster that we live on. Every day, you wake up and brace for the unknown. Seizures seem to constantly change and evolve either for the better or worse, but nothing stays the same long. We have been blessed to see weeks without a single seizure and we have struggled when we watched the twinkle in their eyes disappear as seizures took over and stole their precious memories, learning, endurance, laughter and fight away. At least, that is how our journey has been. Plans? We don’t often get to make plans. It is much easier to live spur of the moment. We have left seizure clinic in a wheelchair half the times we have been to see the neuro and once in an ambulance for status just getting a seat belt in the wheelchair. I have forgotten to bring shoes to the ER, forgotten what medications they take, even given the wrong age and date of birth to paramedics. I am lucky I remember my own name in an emergency. I have zero sense of direction, and just so you know, I couldn’t find my own home without a GPS if I go too far from home! I am far from being smart, I know all you e-moms think I am. Trust me, I have read thousands of studies and articles about epilepsy, regions of the brain, genes, seizure types and anything else I can get my eyes on. The better I understand things the better I deal with them. Regardless of the situation, I am not the “take two of these and call the doctor if you have a problem” kind of gal. Nah, I gotta know what to call this thing we are treating, research all I can about it, know what caused it and the name and every detail about that drug the Dr. just wrote on his script pad before I put in down any one’s throat! Epilepsy has been my weakness, I don’t know why it’s happening and in spite of the years of research. I still don’t know how to fix it or even what caused it. Brett’s journey has been much worse than Brynn’s. He has had months of sleeping 16-19 hours a day and even on good days he sleeps 12-14. His seizure counts in the last six months average 3 a day. He has a large variety: Tonic Clonic, Atonic, Complex Partial and Simple Partial/Aura’s. We still do not count any seizures that are shorter than a minute, unless they come in a cluster and count that as one. When his seizure counts were lowest, his quality of life poorer. Seizure counts higher and he lost endurance, balance, cognitive function and his laughter disappeared. Since his ammonia level and platelet level scare, we never have been able to find balance again. We lowered Depakote and saw an increase, went back up added Carnitine to try to help his ammonia level stay down that helped until a few weeks later he crashed again. We added Onfi, and I assumed that he would do well on it since Brynn has and hopefully get off one or more of the other meds. That didn’t happen. What a mess! His ammonia went back up and platelets down, so we weaned Depakote. All this while Brynn started having an increase of nocturnal seizures, the Tonics came back as did the myoclonic jerks. Saw a new neurologist who is a lot like the old one the boys favorite (Dr. D). He’s almost 3 hours away, but smart and no BS kind of guy. He increased both their VNS settings and put them on rapid cycling. He also increased Brett’s Onfi and Vimpat to see a small break and watch the counts rise again.  We decided to keep things as they are with Brynn, offsetting any meds may cause him to go back to where he was. It’s likely best to just stay where we are and appreciate where he is, less is best! He has stayed on the same doses of Fycompa, Vimpat and Onfi for two years now. Brynn has maintained his 40+ pound weight loss well. His confidence is up and he is staying active happily living back in the country again. He is 16 now, so we are awaiting his new IQ test results to have him placed in a transition program that will lead to special job training.  We all really like the new house and have been doing a lot of projects around with the really huge Hickory tree we had to have cut down! We are still heartbroken over the horrible service dog experience. Brett has been affected in many ways. Just the mention of Blue can throw him into a seizure. We adopted two dogs to try to help (Flash and Daisy) and while they are fun, they still do not make up for the loss of Blue due to her unstable temperament and aggressive tendency towards men. We put a complaint in with the BBB Here: http://www.bbb.org/atlanta/business-reviews/guard-dogs/guardian-of-the-night-k9-in-locust-grove-ga-27470394/complaints and the trainer didn’t even respond. We have given up on the service dog completely. Honestly, I don’t think Brett could handle the process again and I have doubts that he could bond with another dog like he did with Blue again. It’s a really horrible thing to have gone through, but we will do all we can to make sure this does not happen to anyone else. $5,800 is a lot of money to watch turn into nothing and there isn’t much you can do about it except sue, and loose better than half the money anyway. The Service Dog industry needs to be regulated and laws need to be made to make these deceptive “Trainers” accountable for what they are doing to families. It should be illegal for anyone who has not been through training and received certification to sell a service dog. We are not the only ones, I have been contacted by so many people who have had failed service dogs. I just wish they would have contacted us before I signed that contract! When you have done all you can do just stand and wait… We have gotten this far with God, and with Him all things are possible!

~Denise

 

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Year end quick wrap up!

I didn’t realize it had been so long since I have posted an update. October, November and December have proven to be just as much a Epilepsy Roller Coaster as the prior months… well years. We have seen Brynn do so much better and have just a few small                                                   bumps of loss in seizure control.

All in all, I would still say that he is better than he has been in years. Brett on the other hand seems to gain some control and in a matter of hours, days or weeks crashes again. Brynn and Brett will see a geneticist in January.                                        We are hoping that we will have some answers from that appointment instead of more questions, like the previous Epilepsy Panel. The Geneticist hopefully can answer some of  

the questions about the two unknown mutations that came back on Brett’s previous Panel. (varients of unknown signifigance are 1.) heterozygous for late onset multiple carboxylase def w/biotinidase def p.G1n88Glu 2.) lysomsomal storage disease ds aspartylglucosaminuria p.Leu146Val)
The new Neuro does believe that they have a male dominant, female carried rare genetic female carried epilepsy syndrome similar to LGS.
   We returned to the Seizure clinic this 

month, and were referred to the seating clinic to order a bath chair. I brought Brett’s wheelchair to ask for a seat belt to be ordered. What a blessing they had one and started installing it right then! Unfortunately, Brett went into a Complex Partial seizure while it was being installed. With no break in between after several minutes the Complex Partial generalized into a Tonic Clonic.

911 was called after about 5 or so minutes. The nurse estimated that the Tonic Clonic seizure lasted about 8 minutes. He went to a postictal like state for about two minutes and then his eyes popped open into another seizure he went. Second Complex Partial that also went into a Tonic Clonic. It took an hour before Brett arrived in postictal state by ambulance to the ER. ER was over filled and the hall was being used to treat immediate cases. We

stayed there until he slept it off and awakened hungry and ready to go home. I got a prescription from the ER Dr. for Nasal Versed after he asked why I didn’t have his Diastat on me. I explained that I usually do not carry Diastat when I am fairly close to home, we really do not leave the house often anyway and when we do we are going to the Dr. anyway!

In the off chance we do get to take Brett to a store or restaurant he is 10, weighs close to 100 pounds and I would rather call 911 than try to get his pants down and administer Diastat in that situation in front of so many people. In hindsight, I feel terribly guilty that I did not have any emergency medication on me. I had no idea that it could take so long for Paramedics to get to us in this big huge city either. My thinking will change, once

again and I am sure my anxiety will not get any better either about leaving home with Brett and without Brett. We were only about 10 minutes from home and it was just a quick appointment, but once again I am reminded that Epilepsy does not have rules. When we left the house he looked great, no clue that a seizure was coming until it was happening.

I certainly didn’t expect him to be in status in a matter of minutes like he was. I went ahead and placed the Seizure Alert Dog Medication Inside bag that will be clipped to Blue’s vest in my purse with preloaded Nasal Versed and Diastat and will not be leaving home with Brett without it again. Brett will be getting the bath chair and his wheelchair now has a seat belt. We were referred to an Easter

Seals program to try to locate a better wheelchair after the physical therapist saw him actually have a seizure in the chair it became evident that he needs a chair that we can recline the back in the even of a seizure for his safety. If we can’t locate a used one he will order him a new one. All the children are excited about Hanukkah coming! Hope to update soon, if not I will I will update after the Geneticist appointment. We should have some photos in January of the boys and Blue! She is coming for a practice training visit with Brynn and Brett! Of course we are all really excited about this! Blue’s balance is likely sitting around the $900 mark! We are getting so close to getting her paid! God is good, even in the midst of this Epilepsy battle, God is so good and has never left our sides!  I have taken on new responsibility at National Seizure Disorders Foundation as the Treasurer and started writing Caregivers Corner as well.  http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner/  
It has been a blessing to be a part of NSDF and I expect really great things to come in the future.   

Endurance

Waiting… I never really enjoyed waiting. I admit, I use to be better at it too. I remember people use to say “Denise, you have the patience of a saint.” Just words, but I must have been given a great gift of patience. I have to work harder now at Patience, because I feel I lack something, Endurance…  I get anxious now waiting. I feel like I do not have the strength to wait things out.

When you have a child with refractory epilepsy, so much waiting is required. No matter how much patience you think you have, watching your child have a seizure will make you feel like you do not have the endurance to go on…
You start this medicine with so much hope that it will make the seizures stop. It does, for a while and another is added when things get out of control…               On and on this process goes…

 Finally one day the Dr. says, this may be the best we get. We did the VNS surgery for this reason. The medications tend to help Brynn honeymoon for a time, but once again his body just gets use to it or learns how to seize despite the medication. So, we did the surgery with the hope that he would do better than the one third chance of a 50% reduction in seizures…. and we wait… and wait… Did you know that in training for endurance, you could end up with a negative impact on strength if you do not also practice resistance training. Waiting in faith is like training and without prayer we too would end up weak. The boys and I pray every night for Brynn and all the children and adults we know that have seizures to not have seizures anymore. We praise Abba Father that one of them has stopped having seizures and a few others improved! This has encouraged our faith once again and helped me to become stronger… and continue to endure! We weaned one medication and started a new medicine… and waited some more.  And…. Once again, we have a honeymoon! Yes, Brynn is back to baseline and better with the Onfi! He is not having Tonic Clonic the moment and the Tonics and Complex Partials are so much less traumatic! This honeymoon started out great, fizzed out and then came back full force it seems! We are so excited and enjoying this time! We started fund raising to get Brynn a SAMi Seizure Alert Monitor Camera System. Brynn and Brett always being find of Survival Bracelets wanted to make them. So we bought the 550 Parachute cord in fun colors and got to learning! Brynn and Brett like to try, but they haven’t mastered the art of making

them… So at present I have made oh about 70 of them!  Saving and Hope to buy him a Recumbent bike soon too! After he had the seizure while riding the bicycle he has been heartbroken that the neuro said no more bike riding. He has only been able to ride his 4-wheeler once so far. The recumbent bike sits low to the ground, has three wheels and in the event he has a seizure while riding at least he will be close to the ground and not fall over… We even had a Lemonade Stand for the first time last Sunday! The boys had so much fun and raised $20 for the SAMi fund!!

So here we are again, waiting… and being patient… Knowing ever still that Abba Father is in complete control… It will be as it will be, in HIS time and only then… Not the easy fun we had hoped for, but you know… at least we are having some fun along the way!!
Ah, indeed…
The longer you wait the better it is!!

Don’t Ever Doubt It,
Abba Father Knows ALL!!

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…

 A
h, 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
 


 

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!

Children’s trip update


Brynn’s appointment went well. Dr. Einstein was there today after he sent the Intern in… I gave a good lecture to the Intern who will become a Pediatrician soon. Explained to her that Brynn should have been diagnosed at two years of age or even earlier. Explained that his symptoms were overlooked and explained with “Night Terrors, Infant Gas, Articulation Disorder ect.) Told her that I made a promise to myself that I would tell this to every Intern and Pediatrician I come in contact with. If someone would have listened to me many years ago we could have helped him a lot sooner. We are going to schedule a trip down to chat with Surgeon about VNS and set the VNS implant surgery date. He thinks it will be a valuable tool for Brynn, but cautioned me on thinking it is a cure for him. He said we can Hope for a 50% reduction, but he doesn’t expect it to be that for Brynn. I appreciated his honesty. I expressed my fear of the future and said I want it because I want to have any tool that could potentially stop status, he understood and agreed that it is important to have any available tool to help Brynn.

Brynn 12 Brett7

He said because he is Refractory and failed so many meds he doesn’t see him being seizure free, but it is important to only do one change at a time. By the way, if he has failed so many, why is still on all the failed ones except Trileptal? We are going up to 400 mg on Zonegran. We’ll keep the Depakene at 1,250 mg twice daily, Vimpat 200 mg twice daily and Klonopin .5. Once Brynn gets back and stays at his baseline average of four seizures a week for a while we will try to wean Depakene and introduce Onfi, since Brynn’s brain seems to like Benzo’s. While doing the Neurological exam he noticed the small seizures I have been asking about for two years now, asked me if I noticed him spacing out… Told him he has always done it, he said he didn’t notice it before. Told him I call it checking out, that sometimes he goes back to what he was doing, sometimes he doesn’t remember what he was doing.

Tera 22, Abigail 2 and Brynn 12

Of course this is probably seizure activity that we cannot see and he said once we get the big ones under control we need to work on those as surely they effect his daily function. So thankful he noticed them… His Neuropsychological report from a year ago questions is this is happening because he noticed it while spending time with Brynn. His 3 day EEG even mentions seizure spikes with no clinical signs. So, productive visit for Brynn… many more questions for Mom… Still feeling insecure about all this, as I don’t feel like my Brynn is safe. I still daily fight fear of what if, when and why. On the why, we talked about that too. He said he just doesn’t feel like we will get anything back from genetic

Brandon 17, Abigail 2

testing. Even if we did it would not change anything. I said well at least I would know WHAT it is. He said we cannot go in and rewire his brain, it’s just not wired correctly. There is not easy fix here and having a name for it is not going to change it. I disagree, but respect and understand his opinion as a physician. I am in hopes that increasing the Zonegran will bring positive changes… and I am looking forward to ANY change for the better that the VNS will give Brynn. He suggested I wait on the Neuropsychological re-testing, as he needs to be in better Neurological shape for it to be accurate, to see where he is in comparison to his baseline cognitive function before that horrible seizure that took away two years. He looked at the 2006, 2009, 2010, 2011 & 2012 writing samples from Brynn’s home school. He wouldn’t talk about regression, says it’s Cognitive Disability. Not looking forward to that trip again, but perhaps we can get a room next time and actually visit family. There is always Ronald McDonald house for the Surgery day. Here’s to HOPE… and lots of it! It’s all in YHVH’s hands anyway, what do they know… I got a message while at the Dr. and my phone was off. The buyers for our property were approved for the loan, so looks like we will be moving really soon… No idea where, LOL It’s all in the Father’s hands… Don’t want to make any more poor decisions like we did coming here. We will walk away with considerably less than our down payment… and loose all other funds we spent getting Bri’s room built and so on… Oh well, live and learn… boy did we! Kind of excited about what the future could bring… ~Denise  

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… 
 


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
 
    

Okay, I put this off long enough….  Went back to Children’s for our June appointment. Brynn is currently stable at an average of 4 Complex Partials and 1 or 2 tonics a week. Just ONE Tonic Clonic in the whole month of June and one so far in July. May be the best we will get… Could get better…. could get much worse and fast. Wouldn’t it be nice to know…


 Cognitive functioning has slowed again, and we have weaned Zonegran.   Keeping Klonopin, Depakene and Vimpat for now. We went for a Video EEG on Thursday and Friday last week. He had a good night, so I am unsure if they caught any seizures. Talked to the Eleptologist about Brynn also. She said that he has Congenital Intractable Multifocal Epilepsy.
I asked if it caused his Cognitive Disorder and MR,
she said no… He was born that way. She also told me that with his left Occipital Lobe, Frontal Lobe and Right Centrotemporal .     He actually could be blind, could have not talked or walked. She said he does very well in spite of what is going on in his brain and that Children’s brains are amazing that they can go around these issues and one area takes over the others lack. She told Brynn he was brave and she was proud of him for doing so good through the testing… and she told him he is AMAZING! We talked a little about Genetic testing, said I will have to ask his Neuro about that. I mentioned Fragile X, she said most Fragile X  children are moderate/severe MR, he is mild MR with Cognitive Disorder, could be Fragile X but could be Prader Willi or others too…

Hmmm, Prader Willi… that syndrome that I was laughed at for suggesting to that Neuro before his second known Tonic Clonic? Yeah, oddly enough I haven’t even thought about that syndrome in the two years since Brynn’s Epilepsy got out of control. Looking back on the conversation I should have asked tons of questions… but I froze mentally after she said he could be blind… could have never learned to talk and walk… I was so taken back by the miracle of it all. He can ride a bike, a four wheeler… He may only read on a 1st Grade entry level, but you should see him change a tire and work on a bike…. You should see him play on his iPad… You should see him laugh and play… 

          
Of course now I think what if it moves, starts somewhere else? What then? No negativity Denise, you didn’t come this far to become a faithless fearer of the future! No, take it all one day at a time and be ever so grateful that my precious Brynn can indeed walk, talk and see. Appreciate everything he can do and make the best out of what he has, whew. So… onward we will go. Going to ask again for genetic testing. I went back over his previous Video EEG report and I understand it better now after talking to her. I understand th faulty wiring comments better and I actually comprehend what dysfunction in the brain means. I still have a lot to learn about this Epilepsy monster, but I have come full circle to reality…
The reality is that he was just born this way. Our Abba Father makes no mistakes. He is a beautiful miracle, as all children are. He just sparkles differently and his light just so happens to flicker too much at times. What an amazing boy he is indeed! Hard to believe in just a few months he will be a… TEENAGER!
 Brynn
is so excited to go to Med Camp on the 15th for a whole week!! I am excited for him to have such a wonderful opportunity to have a fun filled week in a medically supervised environment to ride horses, canoe, swim, hike, archery and most importantly meet other children like him! 🙂 

 
 

Lots of beautiful sparkly children will be there… just like him!      🙂






       

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)