prayeroffaith

What does Epilepsy look like anyway?

As a Caregiver of two boys with epilepsy, I have done tons of research. I have read about different seizure types, symptoms, the brain and lobes involved, genetics, syndromes and the list goes on.

First, let’s go over the basics. There are over 40 different types of seizures. They are all either Partial/Focal or Generalized seizures. We will do a quick review of the basics!

Partial/Focal Seizures start in one area of the brain often called a focal point. The symptoms of this type of seizure depend on what area of the brain is having activity.
Breaking this down further, there are two main types of Partial seizures:

Simple Partial Seizure: Just on small area is involved. The person is aware that something is happening and will remember the seizure.   Depending on where it is occurring it can include strange smells/taste, weird feelings, hallucinations, visual flashing/colored lights, stiffness, numbness, tingling or jerking of a body part, intense fear, euphoria, abdominal pain, increased heart rate and others. Sometimes a simple partial seizure is called an aura, when it happens as a warning of a bigger seizure that follows.

Complex Partial Seizure: A larger part of the brain is involved. The person is not aware of what is happening and will not remember the seizure. Depending on where it is occurring the person may wander, pick up things or pick at clothing, smack lips, cry, scream, repeat words that don’t make sense, mumble, make repetitive movements without purpose (called automatisms) as well as having same type symptoms as the simple partial.

Generalized Seizures start in the whole brain at the same time. The person will not be aware of what’s happening and will not remember, with exception to the myoclonic.

Absences: The person may stare blankly, chew or have lip smacking eye lid fluttering usually for a few seconds and go back to what they are doing. This seizure is often thought to be daydreaming and is easily missed.

Tonic: The person experiences sudden body stiffness without warning if they are standing they will fall (usually backward) and can injure the back of the head. They may bite their tongue or cheek. the seizure is generally very brief and recovery is quick.

Clonic: The person experiences muscles will contract and relax rhythmically. The breathing is likely affected and they may sound noisy while breathing or stop breathing. The skin may become pale or even turn bluish in color and they may lose bladder/bowel control.

Tonic Clonic: The person experiences both the Tonic and the Clonic described above. This seizure is generally the most recognized seizure in epilepsy.

Myoclonic: The person experiences quick muscle jerks, often shortly after waking up. This seizure type is classified as generalized, although the person is conscious and aware that it is happening.

Atonic: The person experiences a sudden relaxation of the muscles and often will fall (usually forward) and this seizure is also known as a “Drop Attack.” The seizure is generally very brief and recovery is quick.

Now that we have that covered let’s talk about how it feels. I have seen many types of seizures but I have never had one. I can only imagine what it must feel like, research the subject, ask the boys and others what they feel. So I did just that.

Simply put, if a seizure is a Simple Partial or Myoclonic the person knows it’s happening and can respond. They will remember what happened. If it is another type of seizure the person will likely not remember much if anything that happened. They may seem confused, angry or even just want to sleep. Most people with epilepsy report that after a seizure they are tired and don’t want to be asked a bunch of questions. They may have pain in the body due to injury or muscle spasms. They may also know that they are missing time and that can be very frustrating. So, none of us that have not experienced seizures have the right to judge how they should feel, and the best thing we can do is let the person just relax.

I cannot imagine what it must feel like to experience refractory seizures, but I do know what it looks like.

 

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prayeroffaith

So this is France?

12715553_10208265896782337_2488624869664445143_nI am a Home School Mom. It shouldn’t have come as such a surprise, I knew, I guess I just refused to admit it. I knew how terribly Brynn still struggles to read at a second-grade level. I knew too that Brett still struggles to work on the level he mastered 5 years ago. Somehow, it did come as a shock and caused great sadness to read in black and white that I have two children who are now diagnosed as being “Moderately Intellectually Disabled.” Perhaps deep down brynnbrett1inside I had hoped that the testing would provide clues to reach them, I hoped that I was missing. Surely there was something that would magically make what is taught stick in the brain for later use.
When your children are little and you wonder what they will be when they grow up. As a Mom, you see qualities in each of your children that make them unique and special in their own way. I can still see those qualities in Brynn and Brett, I still momma2think Brynn would make a great, fix it all mechanic and Brett would surely be a wonderful, caring and compassionate doctor. You have all these hopes and dreams of your children’s future and you want them to achieve great things. You hope that they will have even more happiness than you have and if at all possible that they will grow into successful and God fearing people, with a great deal of moral responsibility and grace that they will accomplish many great things.

Have you ever read “Welcome to Holland?”
12782539_10208366778464316_129385383_n I feel like I embraced Holland, which in our case is Epilepsy. I learned all I could about it and I learned to appreciate our family life in Holland. I joined all the groups, found others like us. I advocated I researched thousands of hours and I read more than the tour guides most refer to as physicians likely do about how we ended up here on the genetic map. I made the best out of Holland and did my very best to help all the other parents who ended up in Holland unexpectedly like we did. Now I have been told that I am not really in Holland, I am in France as we are not just dealing with epilepsy, it is moderate intellectual disability as well.  I knew Brynn had been diagnosed with Cognitive Disorder 12722143_10208366778544318_679468329_nNOS and Cognitive Disability, but I assumed that when his seizures were better controlled that it was likely that his cognitive difficulties would be better. His seizures are so much better controlled than they were 5 years ago when he completed his first neuropsychological evaluation. He has been on the same medication for over two years with no adjustments at all, so this is truly who Brynn is and where he likely will stay for life. Never in a million years would I have been prepared for his full-scale IQ to be 17 points lower. We saw an immediate 3-year regression with his second status Tonic Clonic seizure. It took a few years to even get almost back to where he was and he was already behind in all areas. I can only presume that this is what caused the IQ 12782387_10208366778664321_1202466114_nlevel to drop, I have written before about brain damage from seizures.  I couldn’t have imagined that Brett’s scores across the board would be so low either. Both boys score highest in Verbal Intelligence which I have read is usually the case in Moderate disability. I suppose this is a blessing, as they are both able to speak and understand a broad variety of words. So, I guess I need to explore all I can now about France. We will have to find more tour guides, join more groups and find out all we can about this place that we have been placed. I have to wonder, if it would have made a difference had someone told us when they were born that this journey would be different.
About the Seizures
Brett’s seizures still remain pretty intractable. He is having more big seizure free days since increasing two of his medications. Still having a multitude of seizures weekly. His frustration is evident, especially when he falls or has the seizure clusters. He is still having intermittent weakness in his legs and has not received the appointment for PT to see what the problem is with his ankles yet. Brynn is, for the most part, staying at a 1-2 seizure a week trend. He has gotten pretty good at knowing when he has had a seizure nocturnally, even without bed wetting, he can feel the effects and has no problem expressing me how he feels.

 

 

prayeroffaith

We moved to a New blog site…

blog8

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. 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, blog9Neuropsychologist, 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, blog17you 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 blog16neuro 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 blog224articles 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 blog13and 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 has spent 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 blog10higher 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 blog5down, 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 magnet 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 blog19Brynn, 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.  Brett started the testing as well, but could not blog20complete the time needed due to seizures on 3 visits that stopped the testing, so we decided to wait until he is more stable.
 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 blog6Blue 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
Unfortunately the trainer didn’t even respond and has not contacted blog2us since the end of July. We have had to give 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 in attorney fees anyway. The Service Dog industry needs to be regulated and laws blog4need 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!  While we are waiting we are getting things done! blog21Brian brought home a huge 8 foot table from work, we used the wood and made a wheelchair ramp out of it! Brett has used a loaner chair from Easter Seals for some time now. The Pediatrician said he needed a better fit, since the loaner was a bit bit, and the Physical Therapist agreed and ordered a really nice NXT Generation Tilt in Space wheel chair for him. One need down at a time!

 

~Denise
prayeroffaith

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

 

prayeroffaith

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/

prayeroffaith

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

prayeroffaith

It’s been a while UPDATE!

Happiest News First! BLUE and BLUE’S DELIVERY IS PAID IN FULL! Yay! Delivery is set for April 9th! We are so excited! We can’t wait to have her here and to train with the trainer on how to take her everywhere and keep up with her training as well. Brett is super excited! 17 days and counting down! With the trainer and Blue here we will visit stores, restaurants, bowling alley and theatre to be sure we do not have any access issues. This will help Brynn and Brett learn to handle Blue as well. We have gotten a few homecoming gifts from Blue’s wishlist. I will post the link at the bottom. Brett had a 4th medication added, Depakote. This medication has helped a great deal with controlling the myoclonic and atonic seizures that were making him fall. He is having less Complex Partials with this new medication added on and has only needed Diastat once for rescue. We also got the advice to give Ativan for the “seizurish” activity that often happens before a bigger seizure. It was confirmed that the “seizurish” activity is actually seizure activity. This has helped him to not go into as much clustering having this clarification. Brynn is still doing fabulous on his medication combo.
The Geneticist got the results back for the Microarray and the Fragile X, both test were negative for both boys. He believes what we are dealing with is “Metabolic.” Ha, after hours of researching I concluded that can mean hundreds of things. They submitted more blood and urine for more test on the 19th, awaiting those results. 

 

We worked really hard at fundraising to bring Blue home. As a special Thank You gift for two of the highest donors, we had these made by L&E Creations (they can be found on facebook). We love these mini Brynn and Brett’s! We mailed out some other gifts (Bracelets, Shoestrings

and necklaces) to anyone who donated $250 or more. We learned a lot through this fundraising adventure and hope to help others reach their goals as well! We are so very grateful for the families that helped! We know Blue will be so full of love through everyone’s gifts and prayers! Brett’s new glasses seem to be helping him to see better. He still cannot wear them when

he is feeling seizurish, but when his seizure activity is down he doesn’t mind wearing them. He will return next month to have his eyes checked again. We are in the process of house hunting for a house in the country. We know it will do both Brynn and Brett good to get the fresh air and freedom that this city life cannot provide them! Things have been pretty busy with my volunteering for National Seizure Disorders Foundation, Wrapping up everything

to get ready for Blue and seizures mixed here and there. Expect that April will be an even busier month! Really hope by June we can breath some Country Air! 🙂 Brynn and Brett were recently blessed to participate in the Warrior Beads Program through  http://www.1boy4change.org/
Chris and his Mom are a tremendous blessing and this is a great cause to donate to. They are a 501(c)(3) Charity too! 

I was in tears when I realized the seizure count estimates. Anyone who knows me, knows that we don’t count small seizures. If it’s not a few minutes long I don’t journal them, except noting seizurish, cognitively slow or Aura. Brynn was not diagnosed until his 11th Birthday October 2010. Brynn’s estimated seizure total since diagnosis? 744. Brett was not diagnosed until he was 8, in

August 2013. Brett’s Seizure Total since they have been journaled? 434. I knew Brett had already surpassed Brynn in status events, and I also knew that his Epilepsy seemed much worse than Brynn’s was. I had no idea that either of their numbers would be this high. Our Favorite prior neuro had me give seizure counts at each visit to keep track, especially when we changed medications or doses. The

estimates are the total of 2014 seizures multiplied by the number of years since diagnosis. We will keep adding beads to journal the Dr. visits, Ambulance rides, blood test, EEG’s, Hospital Stays, surgeries and everything else that they go through. I bought some very special

beads. They are white but change into a color only in the sunlight. We will use these for SEIZURE FREE DAYS! This is a really neat way to keep up with any medical journey. What a blessing 1 Boy 4 Change is to have gifted our Epilepsy Warrior Boys with this! That catches you up! Will try to post again soon!   
WoooWhooo Just 17 days till Blue comes Home!! Here is the

Amazon Home Coming Wishlist for Blue! We are so excited for

our Beautiful Blue to come home!!

Brynn and Brett LOVE getting the packages addressed to The

Epilepsy Warrior Boys for Blue, when you order through the 

 wish list they come straight to our door!! Take a Look at this 

 link: 

 http://amzn.com/w/R135IOYHJRDO
Oh… DON’T FORGET!! Thursday March 26th is Epilepsy Awareness Day!! 🙂
     

prayeroffaith

We are making progress, progress is good!





It’s been a while, here I am again catching up! We are pretty excited that the Neurology Clinic we are going to sent us to a Geneticist! He will be researching the two genes that Brett’s Epilepsy Panel came back with. He also ordered a Fragile X and CGH+SNP Microarrays. He doesn’t think they have Fragile X, but he felt that we should do it just to cover that. The Microarray test may or may not give answers, but it will answer some questions.
The geneticist also feels that whatever we are dealing with is a female carried problem, and all my male children had a 50/50 chance of having it. I suppose only time will tell and it appears that we will wait several weeks to 6 months to get the full test results. YIKES! What is the test? Well, it test for chromosomal imbalances that may be the cause of developmental delay/disability on the boys by looking for any imbalance of genetic material such as additional copies or loss of whole chromosomes or deletions and/or  duplication in segments of chromosomes. The information we gain may have no clinical value as for treatment protocol, but it is possible it could. If nothing comes back the test will act as a baseline, and we will know what it is not. It will be good to have it done even if we get no answers, so at least we can say well it’s not _____. I have taken the test with a grain of salt, as I have seen so many parents hope that it would give answers and they were disappointed. I have also seen a few that did get answers from the test, so I still have hope for answers!  It would be a great benefit to have a name for this journey other than Cryptogenic Refractory Epilepsy. Even greater a benefit if we could know for future generations how likely it is that this will be passed on. Brett is still having a hard time,  

since the hospital admission he has not had cluster or big seizure freedom for more than a few days at a time. He seems to consistently do better after it gets dark until bedtime over the last several weeks. We have the Nasal Versed, Diastat and Ativan to use when they get out of hand. Fortunately, I find that the Ativan given soon enough can help him to not need the others. He is handling it well, and I know he is working at understanding his seizure disorder.  

He knows when his body needs rest and does not have to be told to sleep, he just lays down and sleeps when the “seizurish” feeling hits him. This is a wonderful accomplishment because resting is the first defence against clusters for him it seems. We purchased an awesome Purple Wheelchair for him from a kind seller on ebay. He let me trade a CARE bracelet I had for sale for the wheelchair and I paid the shipping. It is an Invacare Solara Tilt in Space model. It’s a bit big for





Brett and we have no way at the moment of transporting it. The idea came about when Brett went into status at the physical therapy office and having the Tonic Clonic seizure in the standard chair we saw how dangerous that was. What we need is a chair that can be adjusted when seizures happen to lean him back and keep him safe. CRS referred us to Easter Seals, who is working with us for a solution. We will need a Hitch for the family vehicle, but the amazing sweet lady at Easter Seals decided that he really needs a smaller chair, with wheels that he can move himself when he is able. They possibly even have a lift available for us to use to attach to the back so that we can still access the hatchback. Blue will be home soon and we will  not have a lot of extra space in the family vehicle. We expect to have it for at least a few more years, so we have to adapt it to make it user-friendly as our needs change. We are looking forward to getting out the house and truly obtaining “Positive Seizure Management” when Blue gets HOME!  It sure will be wonderful to finally be able to do things in spite of the seizures. As a family, we need to learn to live life to the best of our ability, through the seizures! I find myself in a great amount of gratitude for those that have donated to make Blue possible. Her balance is down to $410 as of today. It is amazing that a few people, churches, and one business came together and got us this far. We all have great happy feelings knowing that people have seen the need, reached out and gave.

Here is a link to the Red Basket site set up for Brynn and Brett’s Seizure Alert K9 Blue:


https://redbasket.org/320/bring-blue-home
All donations through Red Basket are tax deductible. We would like to thank Red Basket for their help in setting up the boys page. They are really great to work with and verify all askers, so you can feel good about donating to any cause on the site. 

I have been volunteering with National Seizure Disorders Foundation and hope to spend many years helping others achieve their goals! I really enjoy being the Treasurer and writing Caregivers Corner! We have some really great folks on the Board of Directors and I am blessed to have them in our lives. We would like to thank National Seizure Disorders Foundation for helping us to believe that Blue was possible and helping me not to loose faith or focus when people were not donating! 


Here is a link to the latest edition of Caregivers Corner:
http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-by-denise-marsh-2/


   

prayeroffaith

Decembers Caregivers Corner NSDF

 This is a special place Found in our NSDF website for Caregivers only. Find comfort, support, and helpful resources here from caregivers just like YOU!
 http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-2/?utm_medium=facebook&utm_source=NSDF+Blog&utm_campaign=Blog

This month, Caregiver Denise shares her thoughts and experiences on  stress  and a few resources she finds helpful while helping her boys live with Epilepsy.
Let’s talk about stress. It’s important to understand what stress is and how it affects your body, to fully understand how important is it to find effective measures to reduce it. Stress is a natural part of life, and believe it or not stress is a necessary part of creativity, learning and survival. Too much stress however, can have a negative effect of your daily life and outcome of our survival if not dealt with effectively. When you are feeling overwhelmed by stress, what your feeling is your body’s natural fight or flight response which releases adrenaline and cortisol. A little bit of stress, often referred to as acute stress can be exciting, and it keeps us alert. Long-term, or what is referred to as chronic stress can have long term effects on our well being.   I recently went to the Dr. because I honestly felt like I was having a heart problem. The Physician explained to me that the amount of stress I was under, compiled by my pre-existing anxiety had placed my body in a constant state of tension. I researched this and found that when you are feeling that fight or flight response in a crisis your body is going through a lot. The cortisol and adrenaline released in your body is speeding up your pulse rate, breathing, blood circulation, muscle tension and glandular function. When a caregiver of someone with Epilepsy has this happen over and over again, eventually the nervous system stays ready to react to a crisis all the time causing the body to stay in a constant state of tension. This state of tension creates a person that tends to react to small stressors the way you would normally to true emergencies. All those hormones that are created in the stress state must be released to bring our bodies back in balance. If we do not work towards reducing stress and releasing this built up tension, it can only lead to emotional burnout and complete exhaustion. The only way to break this cycle is to find ways that work for you to relieve stress. I encourage you to find ways to reduce stress in your lives. Doing this will help us be better caregivers, by having better health and positive long term health outcomes.
There are many forms of stress reduction techniques and I will just touch on a few of them.
~Music and Art Therapy
There are many options in this category! Sometimes just putting on your favorite upbeat CD can make a difference if you dance and sing along! My older child with Epilepsy has recently discovered that Art Therapy works for him. He will sit for hours and paint creating wonderful works of art. I also find it very relaxing to draw and paint.
~Prayer/Meditation
A quiet mind is more important than a positive mind. – Deepak Chopra
Take just 5 minutes a day to be in complete silence, focusing on your body and the effects of stress and learning to relax. This can be achieved in the bath, laying on your back in bed or even while sitting. Start at your feel and pay attention as you move upward focusing on noticing areas of tension and calming them. Once your body is calm and relaxed pray or focus on the positive things.meditate Think about all the blessings you have and the good that is in your life. Even if it’s just the pretty sky today or the beautiful flower you saw, find something to focus on that is positive and good. A Physician years ago use to tell patents to breathe in and out deeply. As you breathe in say (Peace, Jesus, Higher Power, Joy, Calm whatever you need) IN and as your release that deep breath slowly say (Stress, Anxiety, Tension, Sadness, Pain) whatever you need out OUT. So I often find myself saying Peace IN Stress out as I take deep breaths and so on. Focusing on releasing it seems to help me in a big way, even when I do not have a lot  of time. I find that CD’s that are designed with stress reduction, relaxation and meditation are a good choice for me, such as this one:
~Laugh
Laughter is a natural stress reducer that  is very effective at reducing stress. Watch funny videos, a funny movie and seriously just Laugh Out Loud!
~Exercise
Something we all may not want to do or think we have time for, but we all need exercise! Go for a walk, even if it is just up and down the driveway, get moving! Can’t go outside today? Stretch and touch those cute toes! Turn on the music and dance the stress away. Exercise will release those feel good chemicals to help combat those stress feelings.
~Practice Gratitude
When we make a point to keep track of Good, Positive and Beautiful things it helps us to not stay so focused on the Negative, Painful, Stressful things in our lives. I find that when I start to feel overwhelmed, if I start looking for simple little positives it helps combat the stress and overwhelming feelings. Such as, “Brett had a terrible seizure today, but he recovered well and his postictal is not as overwhelming as it could be.”
~ Volunteer 
What is available in your community or online to help you live your passion while helping others? Find it and ask about volunteer opportunities. Even as little as 1 hour a week can decrease your stress, help others, and increase your health. Volunteering to do that which you love decreases your stress and increases those feel good hormones instantly! I know from experience as I volunteer my time to reduce stress and feel good at National Seizure Disorders Foundation as Board Member and Treasurer. Leave a comment below to ask about our opportunities.
Life as a caregiver can be tremendously stressful  as we endure this roller coaster ride of good and bad days. Often it seems like we may never have a “normal” life again. I hope that today you will focus on ways to combat the stress that comes with this journey. I also hope that if you are feeling overwhelmed and need help you will reach out to those around you. Find other parents who are on the same ride and somehow it doesn’t feel so lonely. Just knowing that there are others experiencing the same stress helps greatly.
Denise MarshAbout the Author: Denise is a homeschooling mother of six who lives in Alabama. Denise’s two youngest sons, Brynn and Brett have refractory Epilepsy.  Denise volunteers her time and energy as National Seizure Disorders Foundation Board Member and Treasurer. Enjoy the monthly feature articles from NSDF Caregivers Corner written by Denise. 

http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-2/?utm_medium=facebook&utm_source=NSDF+Blog&utm_campaign=Blog