WE MOVED!!

I have been having trouble getting my post through blogger to post correctly... So we have moved over to Word Press:
http://epilepsywarriorboys.com/

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

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!      
..

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/

Before choosing a Service Dog Trainer

Our Service Dog Blue just celebrated her first Birthday! She has been off duty healing from having her spay surgery. We decided that spaying may help with the problem she has developed....
Fear Aggression, yikes! In response to the heartache of having this problem and all the emotions of having a service dog that needs serious training to correct this negative and unacceptable behavior. In any situation barking/growling at men and even in public, is never acceptable in a Service Dog. I have decided to share the survey responses from a survey I created to get the common answers of others who have a service dog to better understand what is normal and what is not when service dogs are delivered. She is clearly not ready for Service Dog work and cannot go back in public until this behavior is corrected. We have chosen a new trainer and will keep you updated as to her progress.
Brett says:

 "There can only ever be one BLUE." 

It is after all what Faith and Dreams are made of, 

believing even when you have no evidence.

*How old was your service dog when delivered or you went to get it.

Answered: 46 
Skipped: 0
• 
  

  Answer Choices–	Responses–
  – Under 1 Year	23.91% 11
  – 12-18 months	39.13% 18
  – Over 18 months	36.96% 17
  Total	46

• *Did your Service Dog have pee/poop accidents in your home in the first month?

  Answered: 45 
  Skipped: 1
  • 
    

    Answer Choices–	Responses–
    – Never	80.00% 36
    – Every Day for a few days	13.33% 6
    – Every Day for 10 or more days	6.67% 3
    Total	45

  • • *How much did you pay the trainer for training your Service Dog? (Training only, not any other cost)

      Answered: 40 
      Skipped: 6
      • 
        

        Answer Choices–	Responses–
        – $1,000 - $7,000	42.50% 17
        – $8,000 - 15,000	45.00% 18
        – More than $15,000	12.50% 5
        Total	40

      • *Does the Service Dog meet your families expectations from the information your trainer gave you?

        Answered: 45 
        Skipped: 1
        • 
          
          
          

          Answer Choices–	Responses–
          – Somewhat, we have more problems than I expected	17.78% 8
          – Not at all what I expected	6.67% 3
          – 100% Perfect both at home and in public	75.56% 34
          Total	45

        • *How much time do you spend training with your Service Dog, not walking or play actually training for task?

          Answered: 45 
          Skipped: 1

          • Answer Choices–	Responses–
            – Up to an Hour	48.89% 22
            – 1 - 2 Hours	24.44% 11
            – 2 Hours or More	26.67% 12
            Total	45

            *How much do you think you spend in a typical  month for your Service Dogs Needs? (Food, Toys, Equipment, and anything needed monthly)

            Answered: 45 
            Skipped: 1

            • • Answer Choices–	Responses–
                – $50 or less	15.56% 7
                – $100 or Less	62.22% 28
                – More than $100	22.22% 10
                Total	45

              • • *How long did it take for Your Service Dog to Adjust to your family?

                  Answered: 44 
                  Skipped: 2

                  • • Answer Choices–	Responses–
                      – Immediately	56.82% 25
                      – A week	27.27% 12
                      – Longer than a week	15.91% 7
                      Total	44

                    • • *How many specific Service Dog Commands did your Service Dog come home with?

                        Answered: 42 
                        Skipped: 4

                        • • Answer Choices–	Responses–
                            – Under 10	28.57% 12
                            – Under 20	38.10% 16
                            – More than 20	33.33% 14
                            Total	42

                          • • *What has been your overall Service Dog Experience? (Health, Obedience, Task Ability, Help to you/your family)

                              Answered: 43 
                              Skipped: 3

                              • • Answer Choices–	Responses–
                                  – My Service Dog was delivered/picked up and met my needs on Day One	58.14% 25
                                  – Helpful but not Perfect, a Work in Progress	34.88% 15
                                  – My Service Dog does not meet my needs yet.	6.98% 3
                                  Total	43

                                • Clearly we can see that there are averages here, and the averages do correlate with the success rate of the placed Service Dog. According to this survey answered by owners of Service Dogs we can summarize:  

                                  1. A Service Dog can be successfully placed at a cost of up to $15,000.

                                  2. 12 months and older is a more common age to place a service dog. (From feedback it was discovered that many puppies go to the home for bonding until they reach a year, go back to trainer for service dog training before placement into the home as a working service dog. Therefore, my data is incomplete) 
                                  3. Peeing/Pooping in the house is consistent with incomplete training. Only 3 of my responders said their service dog did this for ten10 days or longer.
                                  4. A full 75% said their Service Dog met their expectations. Encouraging!
                                  5. All successful placements said their Service Dog immediately adjusted or adjusted within a week of placement to their new home. 
                                  6. Only 3 of my responders said their service dog has not met their needs yet.
                                  
                                  Where are the answers for the last question:

                                  *What is the greatest Advice you can give someone looking for a Trainer? (No Trainer Names please)

                                  
                                  It's best to wait for a large nonprofit to help you that only provides service dogs.
                                  ------------------------------------------------------------------------------------------------------

                                  Research & read reviews!

                                  Research, research

                                  Attention to detail re: training specifics. Give the recipients a "books to read" before they come train with the dog. During training have written quizzes for recipient/handler for recipient. REVIEW the answers together. Give more explanation if necessary. Have written/typed instructions for what to do (EXACTLY) when you get your dog home. 

                                  Make sure you do your homework

                                  Research!! There are many scams out there. Get references and follow up on them.

                                  Look for a program that is a nonprofit. Some "trainers" are in it for the money. Also look for one that specializes in a couple things not everything. 

                                  Research the good and the bad on everything.

                                  Ask lots of ?'s

                                  My short answer is DO YOUR RESEARCH / HOMEWORK. BE INFORMED! 

                                  A trainer that treats the dogs as he/she would their own children. Also, in my experience, a well trained trainer teaches the dog and passes that knowledge to the human. The dog knows what is it expected if trained well, the humans are more often the problem with "problematic" dogs.

                                  Always stay on them and try and get them to train with the persoN with disability

                                  If you have the time to commit, I truly believe getting the dog as a puppy and work with the trainers while training. This way the dog and the person it is getting trained for can start the binding process and get to know each other sooner..

                                  By using a professional organization, you not only get more than one great trainer, but you have an instant family of other people in the same situation who come to training with you. I can only say you're missing out if you don't go this route. It's worth the extra funding.

                                  Get references and talk to them

                                  Make sure the trainer is 1.knowledgeable 2. respectful of your family needs 3. the right personality match with YOU!.

                                  Ask lots of questions and communicate what your needs are in the beginning

                                  Research the company and talk to people that have gotten a dog through the company. Speak to the owner of the company if possible to see what they have accomplished with their dogs.

                                  Check references and remember the SD is still a DOG! They are not robots! They require constant attention and work to keep up their training. But are so worth it!

                                  Choose someone who you like and who is close enough to help with ongoing training.

                                  Someone that is looking (to) help children and not all about the money.

                                  Someone that truly understands the needs of your child, or person needing the service animal. Someone who is able to meet your needs, but also exceed them. Someone caring, understanding, and knowledgable.

                                  Make they listen and you all understand what your looking for in a service dog.

                                  Just the name or title Service Dog brings the price up for dogs and training up like 300%. Don't fall for this. Get your dog to a Certified Obedience Trainer and have them work specifically with your needs. You will save thousands of dollars. My complete training cost me around 750 and my dog does exactly what I need her to do.

                                  Look for an organization that provides the dog and training.

                                  Do your research and read reviews. We chose a fantastic organization that provides LIFETIME support regarding training and/or any health issues that arise as well as a network/support group of other families that have received service dogs from their organization.

                                  Make sure your approach to animals and training match your trainers--use your instincts. Like choosing a church or neighborhood, If it doesn't feel right, it probably isn't. there are many good trainers who see the world differently than you, and have strong biases. Make sure your biases match theirs. Also, start by getting to know your local dog community. We ultimately chose a trainer that was 500 miles away, but we would never have found her without the dog training school that is 5 miles away. It was the community at the local dog school that helped me--one person knew another who knew another. Also, don't be disappointed if the first trainer/organization doesn't work. We spent 3 years looking, and ultimately tried 4 places before we found the trainer and dog that worked for us. It is not a cut and dried field--service dogs--we thought we'd go with a a large well know organization, but that did not work for us. We ended up with a very small time trainer, one person operation, and it was perfect for us. that said, there is still an incredible adjustment period with the dog in our home. She is trained, but we are not. She also needs to be retaught what we expect of her in our home. She is willing and well-prepared to learn her place, but we have to be the ones to guide her and fine tune her training. Finally, there are no real guidelines or national regulations for service dog training. You really have to research what you what, and trust the person you pick to know the best approach without national regulations. Our dog serves our 11 year old daughter with daily seizures and developmental delay. We as parents are trainers and handlers. Good luck.

                                  Track record, referrals, persistence, under promise over deliver.

                                  Get references, ask a lot of questions, and ask them in different ways see if same answer! Be specific on questions!

                                  Research, research, research. When you find a trainer/organization you think looks good, dig into them. Do Better Business Bureau searches on each one. Check out their web sites, and ask questions about their financials. Know where the money goes, and who benefits from it.

                                  Go through a large organization, 75% of the trainers are frauds.

                                  Look for someone that will continue to support you even after the dog has left their facility, is communicative, and will answer questions. Even before the dog came home, the trainer sent regular updates (photos and video), gave us reading/video material to reference and watch in order to learn how to properly handle the dog, and happily answered even the most silly of questions. The trainer helped us to become part of a whole support network of handlers and SDs and was clearly invested in what was best for each tea.

                                  Make sure they are compatible

                                  You really do get what you pay for.

                                  Research and ask for references.

                                  Here are some links to help in your journey!

                                  RED FLAGS (programs to avoid)

                                  A red flag is something so significantly wrong it would cause any legitimate program or trainer to cringe at the thought. Ethical programs do not operate this way.
                                  
                                  http://servicedogcentral.org/conten

                                  
                                  

                                  How to choose your service or assistance dog program

                                  There are many factors to consider when choosing an Assistance Dog program. First, you must identify your individual needs and decide if a working dog is right for you. Every person needs to weigh the benefits of partnering with an Assistance Dog against the drawbacks. Once you have decided a working dog is right for you, finding a program that suits your needs is the next step.
                                  
                                  http://servicedogcentral.org/content/node/517
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