Long Time No Update? Sorry!

We have had some busy weeks… We have once again moved, but this time we purchased a home. 

Brett has been on a roller coaster of seizure instability for months. We had finally gotten great control of the Atonic and Myoclonic seizures when his ammonia level went too high and his platelets too low with Depakote. We went down on his dose and they reappeared again causing several falls. So we added a supplement and went back up. This is the first time with either boy we have had this problem with ammonia and platelets. 

Unfortunately, it did not give the same result and the Atonics came back full force along with Myoclonics and sleeping 14-16 hours a day. As of now we added Onfi and halved his daytime dose for a few weeks and he has somewhat stabilized again with those seizure types. His Complex Partials have not gone into status nearly as often, but the shorter Complex and Simple Partials are about the same. His VNS has been going off the same as Brynn’s for several months now, so I would have expected to see a difference if it was going to work at reducing his seizures like I believe it did for Brynn. We are almost finished weaning Depakote and are seeing improvements in his wakefulness and less seizures. 

Brynn has been pretty stable averaging just 1-2 seizures a week for an entire year. He has only had a few daytime seizures in this time and has somewhat cognitively leveled out to where I presume he will remain. We have worked really hard on inferring and basic life skills while maintaining his Reading and other scholastic levels. I have reached out to the local fire department to see if they will let him volunteer there to give him some positive men to have an influence on his life and prepare him for adulthood.

When people ask what made the biggest difference for Brynn I have a hard time knowing what to say. I do believe the VNS has had a benefit, especially on his depression. The Vimpat has had a wakening effect on his thinking and I believe it helps with the slow processing. The Onfi made a tremendous difference giving him about 50-60% reduction in Complex Partials. The Fycompa has stopped them from generalizing into Tonic Clonics as well as removed about half his Tonic Seizures. Altogether, he has gone from 4-6 seizures a week being a good baseline to his current 1-2 seizures a week. We will take that happily. He has lost over 40 pounds through watching his eating and being back in the country! We are so proud of him!      
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On June 25th Blue was surrendered to the Breeder the Trainer got her from. I had her accessed by a local trainer. He determined that she has an unstable temperament and should have never been placed as a Service Dog. He also said she posed a risk for biting our 5-year-old Daughter due to her temperament problems. We decided that was a risk we couldn’t take. It took Brett five days to realize that Blue was not only gone but wouldn’t be coming back. He has had a really hard time adjusting to life without Blue. The trainer agreed to let us place Blue with the Breeder, who says the Mom is a lot like Blue. It’s no surprise really that one of the four puppies did not make it as a Service Dog. I have done a lot of research and have learned a lot over the past few weeks. The most staggering fact came from a fellow Mom’s blog. Her Daughter received a Service Dog from another Service Dog Training facility and she stated that they temperament tested over 100 dogs to enter 10 into the program. There were 5 graduates.” Wow. Blue came from a litter of 8. Our trainer did not temperament test the 4 available female pups she trained until she picked them up at just past eight weeks of age. How many did she put out as Service Dogs to families like us? ALL FOUR! Not only impossible that 4 out of 4 could finish successfully as Service Dogs, but very irresponsible, just ask any trainer! She stated in an interview with NSDF, that she temperament tested the dogs before they are chosen. NSDF was our sponsor for Blue and the NSDF website states Paws-4-Seizures, the seizure and multi-service dog placement program at National Seizure Disorders Foundation, is available to any qualifying individual with  diagnosis of seizure disorder or multiple diagnoses requiring the assistance of a highly trained multi-service dog. Our Experience:
10 Month old Blue was delivered on April 9th as a Service Dog listing Brett (10) as the handler. The trainer spent four days coming to our home to show us how to handle Blue. It was on the second day that we heard Blue Growl and Bark for the first time. We passed it off as dreaming because she was sleeping on and off at the time. When the older two boys would come downstairs to leave for work she would do the same. When my husband and oldest son would come in from work she would o the same sometimes. 
When we received Blue it took a full 10 days just to get her house trained, have to give ny husband credit here he questioned her training from day one because of this fact. We all knew with the first visitor to our home we had a big problem when she had to be taken outside due to growling and barking. The second visitor (a family) proved that we had persistence, no matter who it was she was going to react the same way. Imagine the horror that the “Service Dog” would cause if she were to bark and growl at paramedics coming to help one of the boys? When she growled and barked at a grocery store manager, that’s when we knew we needed help, what use is a Service Dog when you can’t even take it in public? We did everything we could do and were heartbroken to learn that she couldn’t be “fixed” to really fit into our home even as a pet. We adopted a Basset Doxie puppy who Brynn has really taken a liking to, but Brett has not been able to bond with the puppy. We are looking into adopting a German Shepherd from a rescue. She happens to look exactly like Blue, she was malnourished and is even abnormally small like Blue. Not sure if we will get her, but that’s the direction we are going at this time to help Brett with the loss of Blue. 
 As for the trainer that trained Blue, I notified her of this problem with growling and barking on April 28th that occurred on the 27th with our realtor. She suggested good firm prong collar correction. We did that with second visitors on the 29th, again had to take her outside she would not stop. Notified her again on May 9th that she did it to the manager in the grocery and she said she would come show us some things. We decided to have her fixed, hoping that it would help to calm her down if the problem was hormonal. When Blue was spayed, the vet said that she had never been in heat and did not look to be close to having her first heat cycle. So all that time, every time something negative was happening the trainer would say “it’s preheat” definitely was not. Meanwhile, I did a lot of research. She said that she would replace Blue on June 19th, I feel that we have been getting the run around ever since. We were supposed to get a photo of the Golden Retriever she was testing on Jul. 6th and she explained on July 29th that dog wasn’t going to work because she is too mouthy for Brett. So that’s where we are in our Service Dog Journey. Sadly, I have heard from several families that have had bad experiences as well. 

Recommended Reading:
*IAADP Minimum Training Standards for Public Access:
 http://www.iaadp.org/iaadp-minimum-training-standards-for-public-access.html

*Service Dogs Training Standards
These are intended to be minimum standards for all assistance dog programs that are members or provisional members with ADI. All programs are encouraged to work at levels above the minimums:

http://www.assistancedogsinternational.org/standards/assistance-dogs/standards-for-dogs/training-standards-for-service-dogs/

*How to choose your service or assistance dog program:

http://servicedogcentral.org/content/node/517

*Finding a program or trainer and evaluating the one you’ve found:

http://servicedogcentral.org/content/node/591

Sources:
http://nationalseizuredisordersfoundation.org/nsdf-paws-4-seizures
http://seizinghope.com/category/seizure-dog/

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Blessings and update on Brynn and Brett

We visited the new neurologist yesterday. My head is still swimming with all the information that we were given in just one visit. Abigail and I went to to the back pretty quickly for her EEG and Brandon, Brynn and Brett waited in the waiting room. Not long after being back there with her, a nurse came to tell me that Brett was having seizures. He apparently had a cluster of Complex Partial seizures.

 I waited for Abigail’s EEG to get started good and asked if I could go check on Brett. I found him with several people, nurses and people that worked there. They were sitting next to him, standing by him and talking to him. I later learned that they didn’t just sit by him and talk to him. They snapped their fingers and clapped loudly in his face to be sure that he was not conscious. This is important in partial seizure as a Simple Partial you are aware and a

Complex Partial you are not aware. Other than being in the hospital or home, no one had ever assisted us before during a seizure. I am sure it was a good learning experience for all the people that were there and saw it. By the time Abigail’s EEG was completed they had put Brett in a wheel chair and brought them to meet us to get weight, measured and talk to the nutritionist. We then gathered in a large room with the Doctor, 4 Nurses, the EEG Tech, Abigail, Brandon, Brynn, Brett and I. Brett was first and it was obvious that he needed some changes since he had the cluster there. We talked about Brett’s hospital admission to the EMU for 6 days. I told him that I felt that Dr. made him worse by messing with his medications. He has not been the same since he crashed the night before discharge. He slept 10 hours his last night there. Slept through discharge, including having the wires removed and had to get to the vehicle by wheelchair because he could not walk at all. He slept four hours after on the way home.

He started having a new seizure type after he got home, was having tons of little seizures that would only stop with Ativan and would return. His stomach aura was much worse and he was generally off balance and completely not with us most of the time for a few weeks. In the six weeks since he was discharged he was a lot worse than he was in the six weeks before he went. He really felt that the Lamictal could actually be causing the Topamax to not work

as effectively or that the Lamictal may not be a good drug choice for Brett. So we decided to add Depakote, since Brynn had a good response on it for so long. We talked about how Brynn and Brett respond so well to Benzo’s and even how odd it is that Brynn and Brett both tend to not get sleepy after given a Benzo. He asked curiously how Brynn responded after he started Vimpat.I told him I have a video, that Brynn was so awake and alert after starting Vimpat that we were amazed! Turns out that people that respond like they do to Benzos often have the same response from Vimpat. It has to do with brain chemistry and Vimpat is likely going to be really good for Brett like it was for Brynn. 

He even talked about the extreme Keppra rage Brett experienced and said that people with their kind of brain chemistry actually are the ones to usually have that effect from Keppra, just so much hyper aware that it has a very negative impact of their functioning. So right off the bat I got an answer to a question I had pondered so many times! So of course we decided to try adding Vimpat instead of Depakote for Brett and we agreed that Onfi should be next. We talked about Brett’s Left eye and how it often kicks out

and gets stuck before and after seizures. He was very educated about what could be the cause of this and he called the eyes bouncing up and down and side to side Nystagmus and said that he also has ataxia. He went in to great detail (a lot of it was over my head) after I came home I did research the words he used and figured it out, Cerebellar Ataxia. I realized after researching that the Nystagmus is actually a symptom of

 it, so is double vision. Boom, another mystery answered! Abigail was next, her EEG was normal and we decided that if I became concerned I could contact him and request a 24 hour or longer study. He felt strongly that whatever we are dealing with is a rare syndrome passed on from me to the boys. He said that the video of Abigail really could be parasomnias. 

I felt that since she was not wetting herself like the boys did and since I had not seen any real evidence of activity while awake I would just keep watching her. Brynn was next, we talked about Brynnon’s history and we talked about how Brynnon has been doing so well, having an average of only 1-3 seizures a week is so great for him considering his past history. 

I stressed that I wanted to leave things exactly as they are and he agreed. As we were finishing up with Brynn Brett bounced back a bit from the seizure cluster and started to play, rolling around in the wheel chair. We both smiled and I said, see… now that his postictal phase is almost over you get to see the real Brett! He shook his head and said that is really shocking that he can function so well on that high a dose of Topamax. So all in all, that was the best visit we have had in a long time. My heart is in New Orleans with their prior Neuro, but considering where Brett is on the seizure journey and the 5 hour drive for care… my head says it is safe enough to stick with this one. So, that is what we will do! 

  So after this really neat experience, I must say that is our closest experience to “The Village” that we have ever experienced. I recently read this book by Lowel Evans. I realized as I was reading it that “The Village” is what has been missing in our lives. You know it’s sad in this day and time, people rarely take time to call, write or contact people in any way. Even families have so much less contact than previous generations. Epilepsy is a stigmatized, unknown and misunderstood condition to begin with. If you take a family like mine and throw epilepsy in, well you end up feeling like you are all alone!

Since my Mother was murdered in 91′, we homeschool and we moved for work so many times our children have missed out on a lot. We haven’t really had the “family” like most people do for most of my children’s lives. I have six children and I can count on one hand the times that my children have had birthday parties where people attended. I can also count on two fingers how many times the boys were hospitalized and someone visited them. The Village concept is one that people reach out and help each other. Not

necessarily with money but just general support when people are going through hard times or trials. The Village is the community that the character in the story lives in and when he is targeted for having Epilepsy at his job, the village all comes together and helps him not only get through the hard time in his life but they help him feel loved and wanted. You can read about the book and get a copy  here:   http://thevillageiscoming.blogspot.com/

  So, The Village book got me thinking how much it is needed for the Epilepsy Community to reach the outsiders to educate them and the outsiders to reach them to support them. We started seeing some of this concept in our own lives when a friend donated to make Blue’s deposit possible. Through the small donations given by a few people we kept the hope.

Through the donation from a Rowan Company of $500 we were amazed! Blue’s balance dropped to $2,500 after that generous donation! KONG sending the boys a box filled with goodies for Blue, People sending messages to check on the boys, my sweet friend and her husband praying for the boys and donating, finding out that the Church you use to attend 20 years ago has taken up donations for Blue… All of this is The Village

concept in real life. I can’t describe what a blessing it is to know that people want to reach out to Brynn and Brett. I just wanted to say how grateful we are to those that have helped us get closer to getting Blue home! It means so much to Brynn, Brett and our family! She will likely be ready around February, and we believe that the funds will come… that the village will come together and get Blue home!

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~Colossians 3:15-20 – And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful.  
~Ephesians 1:16-18 – Cease not to give thanks for you, making mention of you in my prayers…