Independence is achieved!

 

Update on events… Where to start…

Sydney pulling her shirt on...yep, from the bottom!

As stated in the last blog post, we have begun working on stepping down Sydney’s drugs that Dr. Marsh wanted gone for her upcoming trial of Epiliodex , or the extremely high CBD oil coming from GWpharm in England.  Stepping down off these highly addictive drugs is brutal on Sydney.  Lots of increased seizures (known as withdrawal seizures, not necessarily because the drug was helping her), screaming, inconsolable crying, tremors… It lasts for a few days and then it’s time for another drop.  Oh well…even though we hate the process of removing drugs, we are SO GLAD to see them go!

Despite the rough seizure times lately, Sydney seems to have made some more forward progress with her development.  She turned four in September, but is developmentally in the beginning of her “terrible two’s.”  Recently, she has developed a major independent streak.  She wants to do EVERYTHING herself!  While inconvenient at times, we are so excited to see this continuing progress!

Sydney washing & enjoying herself in the bath!

As I have mentioned in prior blogs, bathing Sydney has always been a huge seizure trigger for her.  Because of this, baths have always been very quick, typically less than 2-3 minutes in length.  Bathing Sydney in recent months has gotten better as long as we keep the temperature of her bath water around 90-92 degrees.  This would feel cool to most of us.  The other evening, I could have cried as Sydney wanted to stay in the bath.  After I finished bathing her, she proceeded to show me that she knew how to bath herself.  She squirted soap in her hand and rubbed her head.  She used the wash cloth to wash her chest, face, and belly.  She even stood up and washed her butt!  She kept laying back to float in the water.  She must have played in the tub for 20 minutes!  She even got pruney (if that’s a word)!

When she got out, she wrapped her towel around her to walk to her bedroom to get dressed.  This is the first time she has ever done this!  Normally, she is at least having some small seizures towards the end of the bath, prompting us to wrap her up & carry her to get her dressed.  When we got in her bedroom, she picked up her jammies and tried to dress herself.  Of course, she put her shirt on her bottom half but I appreciated the attempt! 

Sydney's problem solving skills

She has also been working on her climbing and problem solving skills.  Sydney has never been much of a climber, but she is starting to take an interest.  I have found her a few times now sitting on top of Aaron’s little desk in his room.  The other evening, she walked out into the dark dining room.  After a minute or two, I asked Paul what she was doing because he was in a position to see.  He glanced out to see her sitting on top of a buffet table.  She had stacked her two steps she uses as part of her physical therapy side by side and up against one of the dining room chairs that was sitting next to the buffet table, effectively creating herself some stairs.

Sydney has been adding some extra stress in our lives lately with her development of nocturnal seizures.  The one time we always used to feel safe was when she was sleeping because it always seemed that all signs of her seizure activities ceased.  No longer…. Unfortunately, her pattern seems to be that they start up right as my alarm is going off (around 5:30 a.m.) for me to get in the shower for work.  My husband Paul is typically gone by the time they start and our nurse doesn’t begin until 7:00 and I have to be to work by 7:30.  Sigh… so sick of trying to figure out how I can be in two places at once… shower & with my daughter managing the seizures.  Something’s gotta give!

Hopefully this upcoming trial will help with the night seizures…all the seizures for that fact of the matter.  Because of the upcoming trial, we are trying to track all of Sydney’s seizure activity (to the best of our ability) so we will truly know if the Epilodex is doing anything for her.  I had stopped trying to track her NUMEROUS seizures before she ever hit the age of one because I was driving myself insane.   Her numbers for the last three weeks have been:  11,670; 1,903; 2,632.  That first one is NOT A TYPO.  She had a really bad week that week…

The Capitol in Harrisburg

This is why we are fighting so hard with our group PA Parents for Legalizing MMJ to get at least a high CBD/low THC version of MMJ passed for PA kids who need it.  Sydney is not the only PA kid suffering like this.  We met with a group of our PA Parents & their kids in Harrisburg for a rally and to speak to some of the legislators.  A new bill has been introduced in PA that would greatly help kids like my Sydney.  It is Senate Bill 1182 and has both democrat & republican support backing it.  We need to call/email/visit our legislators and ask them to please have compassion on these suffering kids and pass this bill. We also need to create pressure on our governor to not be so close minded.  Many of the legislators we have spoken to say, personally, they would support this bill but they are not sure how their constituents feel on the topic.  Plus they also feel defeated because Governor Corbett says he will veto any MMJ bill that comes across his desk.  We need to create an uproar to get him to change his mind!  Please HELP US MAKE OUR ROAR LOUDER!!!  He needs to hear us!  He needs to see this is an important issue to the voters of PA. 

Syd taking her meds in the Capitol building. Come watch this mess legislators!

Josh Stanley from Colorado speaking his mind on the safety of Charlotte's Web and the insanity of not legalizing it!

Sydney, Mom, and Paige Figi (Charlotte's mom from Colorado)

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Today, I’m grateful for Dravet…

 Today, I’m grateful for Dravet…

Probably the strangest thing I’ve ever said.  However, I have an update when once explained will cause that statement to make sense (I hope…).

Since November is Epilepsy Awareness Month, let me start off with a little epilepsy education.  Dravet Syndrome has two epilepsy terms commonly associated with it:  intractable & refractory.  Intractable epilepsy basically means that seizures cannot be controlled with medications or that seizure control was failed to be reached by two or more medications.  Refractory epilepsy means that seizures may become controlled with medication but that the control doesn’t last for long.  It’s almost like the brain adapts or becomes used to the drugs being used to control the seizures, and after some time (perhaps as short as a few weeks to a few months), the medication becomes ineffective for that person.  As you can imagine, this is heartbreaking for the parent or individual when finally you find some relief, only to watch it slowly slip away again.  Obviously having a syndrome in which both of these terms apply, well, it’s not good.  Seizure freedom is pretty much impossible for someone with Dravet Syndrome, even if they are on the mild end of the spectrum.  There are a number of epilepsy conditions to which these terms apply… Doose Syndrome, Lennox Gastaut Syndrome, Dravet Syndrome are a few.  There are many individuals who also suffer from Intractable/Refractory Epilepsy in which the cause is as yet known. 

What is Dravet Syndrome?

Another thing Dravet Syndrome is known for is typically somewhere between ages 4-7 the seizures begin to occur at night, referred to as nocturnal seizures.  We would swear the day Sydney turned four years old, the nocturnal seizures began (just our luck).  Currently, her pattern seems to be a nocturnal seizure about every third night.  We are well aware that this will likely progress to nightly and even multiple times each night as many Dravet kids seem to suffer.  Of course, the danger with this is that a seizure could be missed or remain untreated as other family members are also sleeping.  SUDEP (Sudden Unexplained Death from Epilepsy) is also a huge concern.  Over this past weekend, we walked in on Sydney having a big General Tonic/Clonic seizure in the morning.  We have no idea how long she had laid there seizing, but based on how long it took her emergency rescue drugs to pull her out of it, the seizure probably had been going on for a good while. 

Syd & Lexy!

Our hope with Lexus, our seizure alert dog, is that she will eventually learn to bark to alert us that Sydney is seizing in these situations.  Unfortunately, that is not yet occurring.  We are taking steps forward with this training however.  For a time, we felt that Lexus didn’t understand that Sydney was in trouble.  Now, observing Lexus’s behavior when we walk in on something like this, Lexus is showing signs of being scared.  She lays on the floor (instead of in the bed), ears down, head sunk between her shoulders, not moving, not panting, not wanting to look at Sydney, not doing anything.  She looks absolutely terrified!  So at least that tells us that Lexus understands that there is a problem.  Now we just have to help her get over her stage fright and BARK! 

So after all this, I’m sure you’re wondering how in the world could I be grateful for Dravet???

On Monday, we met with a new neurologist (Dr. Marsh) at Children’s Hospital of Philadelphia.  This was done at the urging of Sydney’s neurologist that we see in Chicago, Dr. Laux.  When we were in Chicago last August for her appointment, we spoke to Dr. Laux about our interest in testing medical marijuana (MMJ) with Sydney.  Not just any MMJ, but a high CBD/low THC edible oil version that a number of Dravet patients in Colorado and California are seeing high success rates with.  THC is the chemical in marijuana that causes the “high.”  So with this low THC version, kids are not getting high, but they ARE experiencing the positive benefits of the CBD.  CBD is believed to be the main chemical that is controlling these hard to control seizures. 

Sydney having a really good day around Halloween!

At any rate, Dr. Laux had told us that even though we live in a “non-legal” state, there was hope for us to get to try this high CBD oil with Sydney.  She mentioned an upcoming trial with five centers around the U.S. that were going to be running a federally-approved study on the effectiveness and dosing of the CBD oil to control seizures in kids with hard-to-control epilepsy disorders.  In particular, they are looking for Dravet and Lennox Gastaut Syndrome patients.  New York has already been approved to run one of the studies; the other four centers are still working on the paperwork to get their approval.  Chicago Children’s is one; however, Dr. Laux already had her 25 volunteers lined up.  Sydney was placed 5th on her wait list.  She told us that Dr. Marsh at Children’s Hospital in Philadelphia is slated to be another center.  She encouraged us to make an appointment with him, just in case he didn’t already have his 25 patients lined up. 

On Monday, we met Dr. Marsh for the first time with Sydney.  We really enjoyed meeting him.  So far, he is the first neuro we have ever met that looked at Sydney’s drug list and said, “She is too overmedicated; let’s get her OFF some of this.”  I could have danced a jig at that!  He has even suggested we might be able to take her off ALL her current neurological drugs as we are pretty positive they are doing nothing for her but holding her back developmentally.  So we are going to continue weaning her Keppra, then toss the Depakote, and eventually look and see if the Topomax can go too!  He got to watch her suffering from her myoclonic clusters, mainly due to the fluorescent lighting. 

He is also one of the few neurologists who suggested that the reason why Sydney is on the more severe end of the Dravet Spectrum is likely because of her family history.  Sydney’s mutation is de novo, which means that neither Paul nor I have the mutation, but there is a strong paternal family history of epilepsy.  It has always driven me NUTS that no one seems interested in studying my husband’s family’s genetics.  Paul had seizures as a child; his dad suffered from seizures as an early teen; Sydney has TWO female first cousins who suffered febrile (fever related) seizures; now Aaron, her brother, has had several, 2-3 minute long seizures himself.   We know that Aaron’s EEG is completely abnormal.  Not to mention that Alzheimer’s, migraine headaches, and learning disabilities (ADD) are also in Sydney’s paternal line.  COME ON!  This family should be an epilepsy researchers dream!  I’m ready to line all of them up for blood work and EEG’s!  (No offense to Paul’s family… 😉  Love ya!)

Read line #3!

At any rate, at the end of the appointment, Dr. Marsh said he would absolutely include Sydney as one of his 25 patients to be part of this CBD study!  We were beside ourselves with joy!  The CBD oil that will be used as part of this study is coming from a marijuana farm in England.  It will be high CBD/low THC.  I don’t yet know the exact ratio she will be on.  The oil will be provided free to us for at least the duration of the study (12 months).  At the end of that time, if it is showing to be effective for Sydney, WE WILL BE ABLE TO KEEP HER ON IT!  We will just have to pay out-of-pocket to cover the cost of the oil.  They are not sure at this time how much that will be but they are estimating it will be around $400/month.  We are so excited to have this opportunity given to Sydney…and this explains my opening line.  If Sydney did not have Dravet Syndrome, they would not have chosen her to be part of this study.  This is one of the rare times that having Dravet Syndrome worked in our favor. 

Dr. Marsh said they have been flooded with calls from hundreds of desperate parents whose children have intractable epilepsy and are looking for help.  I understand those desperate parents.  This is why even though MY child will get the opportunity to use the high CBD oil, I will still continue to fight for MMJ legalization.  I have been that desperate parent and I want to help!

On November 18th , here in Pennsylvania, our organization we began (PA Parents for Legalizing MMJ & Team MMJ) are holding a rally in Harrisburg to speak to the legislators about this issue.   Josh Stanley (from the famous [at least in my world] Stanley brothers) will be speaking as well as Paige Figi, Charlotte’s mom for who Charlotte’s Web (the high CBD/low THC plant the Stanley’s genetically created and grew in Colorado) is named.  I and many other parents will also be speaking at either the Press Conferences or the open meetings that will be held that day.  I hope our message is carried far and wide on that day.  Please consider coming to Harrisburg and attending these speeches.  I can guarantee you will receive an amazing education and your heart will be touched.  Consider contacting your legislators and voice your opinion that medical marijuana needs to be legalized for anyone who might benefit from its use. 

Realm of Caring Foundation

If you are looking for a worthy charity to support as we come to the closing of yet another year, please consider supporting The Realm of Caring, the nonprofit organization in Colorado helping SO MANY desperate families.  God bless the Stanley’s for all they have accomplished…

 

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The Reluctant Service Dog

 

When it was time to go, Lexus jumped up on the bed and hid as far away from Paul as possible. Refused to get up to get "dressed!"

Time for an update on service dog Lexus… We have come to lovingly refer to Lexus as “the reluctant service dog.”  Every time she sees/hears us pick up her harness (or service dog vest), she tucks tail and runs the opposite direction.  She will NOT come when you call her.  She just sits in a corner with ears drooped down, knowing it is a losing battle for her.  It really is a pretty funny picture; although, a little irritating at times when she refuses to stand up for us to buckle her harness.  Once she is all buckled up though, she resigns herself to good behavior. 

As I stated in a prior blog entry, Lexus doesn’t seem to view herself as working when she doesn’t have her harness on, which is a little bit of a problem around the house.  The harness, to her, signals she is working…and she begrudgingly complies when it’s on.  She LIKES and PREFERS being just plain dog; working is for the birds!  I guess she’s similar to us humans; many of us whine when the weekend is over and we have to get back to work too. 

Instead of posing nicely for the picture, Lexus is rolling around trying to get her harness off!

We are just returning from a brief beach vacation.  Prior to that, we traveled out to Chicago for a few days to see Sydney’s specialist.  Poor Lexus…she has been with us now for 8 weeks and it seems like we’ve been together in hotels almost as much as we have been home together.  I’m sure she is still struggling, trying to figure out where her place is.  I have noticed though that when we are traveling, gains are made faster between Sydney and Lexus.  Perhaps it’s because we are all stuck in a one-room hotel room together; Sydney can’t wander out of the room and leave Lexus lying in another room. 

We have noticed a few times in the past two weeks of travel that Lexus does appear to be hitting on or alerting to a few of Sydney’s seizures.  She has also missed many.  But at least we have a beginning.  Most of the times that we have witnessed Lexus alerting, she is typically licking Sydney’s legs, feet and sometimes face.  The pattern we think we are observing is about 5-10 minutes before the cluster seizures begin, Lexus begins to alert.

Lexus tailing Sydney at the Chicago Ronald McDonald House

We had one very strong alert while in Chicago.  Lexus was licking face, mouth, ears, legs, and arms of Sydney.  Lexus was very frantic in her movements and wouldn’t leave Sydney’s side, despite the fact Sydney continued to run all around the hotel room.  We were very excited and (disgustedly) almost hoping that Sydney would have a big seizure, just so we knew Lexus could detect them on her.  About 10 minutes after the alert began, Sydney began into another one of her typical clusters of myoclonic seizures that she has daily.  The following day, while at an aquarium, Sydney had probably a two minute general tonic/clonic (GTC) seizure.  Lexus was licking her legs some, off and on all day, prior to the seizure, but she certainly wasn’t frantic like the evening before.  So now we have the question, was the alert the evening before for the bigger GTC she suffered 15 hours after the alert -OR- was Lexus simply alerting stronger to Sydney’s typical cluster?  If we base it off of her pattern, she must have been alerting to the cluster that happened 10 minutes after the alert.  Explanation…We had been out walking around the city for several hours prior to the cluster beginning.  Perhaps Lexus’s nose got “cleared out” of Sydney’s cloud of seizure smell that is almost constantly around her, so that when she began to build up for her next cluster, it smelled really strong to Lexus.  Interesting….

Lexus thinking about snagging up that golf BALL!

As I mentioned, Lexus has certainly had her share of misses though.  Just the other evening in Myrtle Beach, Paul and Aaron were playing a game of miniature golf.  I was pushing Sydney alongside in her stroller and Lexus was present too, of course.  It was 86 degrees out but we had Sydney’s cooling vest on her, hoping she could tolerate one quick game.  I was in the process of taking a picture of Aaron golfing, when I glanced down and noticed Sydney was in full blown seizure mode (from the heat).  Lexus never alerted to it, even while she was actively seizing.  I had yanked Sydney out of her stroller and placed her on her side down on the ground.  Paul was encouraging Lexus to smell and bark, but Lexus wouldn’t bark at all.  She has yet to actually bark while Sydney is actively seizing.  After administering Sydney’s emergency meds, I scooped her up and ran for the little air-conditioned building to begin cooling her down better as I waited to see if the seizure would stop.  It did stop within a minute or so of her getting the emergency meds, but our hopes of Lexus alerting to a big seizure were crushed once again.  To be fair to Lexus though…the boys WERE playing mini-golf…with golf BALLS!  We all KNOW how much Lexus LOVES BALLS.  She was very distracted watching the balls roll around.  She even managed to snag up Aaron’s on one hole as it went rolling past her.  (FYI…Skee ball was even worse….)

Lexus and Syd

The bond between Lexus and Sydney is definitely improving though.  Lexus definitely understands when Sydney is in her stroller where her place is to be.  She is pretty frantic about making sure she is in the correct position.  If we do get separated, she constantly turns and checks for Sydney’s progress.  She pretty frequently “checks” on Sydney by turning her head to her and “smells” her.  If Sydney is out of her stroller for some reason, as soon as she returns, Lexus goes to her to “check her girl.”  And Lexus never forgets to request her “treat” once she has checked out Sydney.  :-)

Sydney loving on Lexus

Sydney too is really beginning to enjoy Lexus.  In the past two weeks, she has been pushing Lexus away a lot less frequently.  Perhaps because Lexus is getting better with not nuzzling and licking and pawing at Sydney when she is crying from her cluster seizures.  Lexus is doing better with just lying next to “her girl” when she is crying.  When Lexus is lying on the floor, Sydney loves to go over and sit between her front paws.  She rolls all over Lexus and Lexus just lies there taking it like a trooper! 

Just a quick note about our beach vacation.  The first two days were incredibly hot (heat indexes in the 100’s); the last three days were cold, rainy, and wet (down in the 60’s).  I’ve never been so cold at the

Lexus at the beach

beach before!  So with Sydney not known to do well in the heat & then with the rain, we spent a crown total of 3 hours on the actual beach.  It must have been Lexus’s first time to see the ocean, to be in sand, and play in the waves.  Harness on didn’t matter!  She was a WILD WOMAN on her first walk on the beach!  Trying to eat the sand, run away from every wave that came at her, and of course, trying to drink the ocean water.  LOL… We weren’t sure what her reaction would be like so we had fortunately waited until after the lifeguards were off duty at 5 p.m.  The next time or two was better as we didn’t allow her to go to the water.  She laid on the blanket, under the umbrella with her cooling vest on.  (Yes, even Lexus has a cooling vest). 

The big swimmer!

Sydney surprised us more than Lexus did with how well she took to the water.  Those who have read about our journey with Sydney from the beginning know that water has always been a huge seizure trigger for Sydney.  Well, we now know that it is more the temperature differences between air & water that are the true issue, so we are careful to keep those temperatures as close as possible when bathing or swimming.  At any rate, Sydney LOVED the heated pool at the beach.  Even on the cold, rainy days, she would go pick up her arm swimmies, put them on to the best of her ability, and come to us making her arm motions and saying “wim” requesting to go swim.  By the end of the week, she was pushing our hands away and even trying to “jump” into the pool without us catching her.  (At the beginning of the week, she wouldn’t even jump in with us holding her under her arms, so we made a lot of progress!)  While we were in the pool, Lexus would lie right at the edge watching everything going on. 

Reluctant as she is at times, Lexus is a rock star everywhere she goes.  People “ooh” and “aah” over her, begging to pet her and she loves up all the attention.  Paul even scolded our little reluctant service dog the other evening while getting ready to go out again, telling her “do you know how many other dogs would like to get to do all the stuff YOU get to do?!?”  Lexus really didn’t care about the lecture and just continued to hunker down to avoid her working gear…. Silly girl!

Sydney & Aaron riding the canoes at Myrtle Beach, in pouring down rain!

Lexus doesn't mind when Sydney "dresses" her up! (Notice the bracelet that Sydney put on Lexus's nose...)

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To legalize or not?…No question here!

 

I find myself in a strange place right now.  I want to address something in this blog that I have never yet mentioned here on Sydney’s website, and in fact, I have not spoken publicly about this topic too much either.  Mostly because of my job (school teacher) there are certain topics in which I keep my opinions to myself; however, I find myself in a position on at least one topic that I can no longer stay quiet on.  The subject … legalizing medical marijuana. 

Sydney working a puzzle with Dr. Laux

We have just returned from a trip to Chicago to see Sydney’s epileptologist who specializes in Dravet Syndrome.  Her name is Dr. Linda Laux and she works through Ann & Robert H. Lurie Children’s Hospital of Chicago.  We are excited because we spoke to her about our preferences for an alternate treatment plan for Sydney and she has recommended a few things for Sydney that we are totally on board with. 

Let me be very clear here on the subject of recreational drugs.  I grew up in the era of “just say no!”  I have never even seen marijuana, let alone smoked it.  I only know what the plant looks like from T-shirts sold in shops along the boardwalks at various beaches.  I have no idea what marijuana smells like when smoked, although I’m told it has an odd odor.  If someone had told me even three years ago that I would be in favor of legalizing marijuana, I’d have thought they were nuts! 

But things can happen in a person’s life that causes their opinion to change.  In some cases, a person might become familiar with someone that medical marijuana can or has helped.  In other cases, the individual might become more educated on the subject of medical marijuana.  Both of these happened to me.  I realized that my prior opinions of the marijuana plant were based off of childhood biases and not facts about this miracle plant.  Allow me a share a few things with you that I have learned in the past almost two years.

When you begin to read about medical marijuana, you will hear about two chemicals in particular:  CBD (cannabidiol) and THC.  It is the THC chemical that causes the “high” that can be experienced when smoking marijuana.  The CBD is the portion that is incredibly exciting for those of us who live in seizure land.  CBD is showing to be incredibly effective in controlling seizures in adults/children with hard to control seizures.  I have been watching/learning/reading about the CBD-seizure control for almost the last two years now, ever since another Dravet father Jason David went public with his son’s struggles & beginning him on CBD (Thank you Jason & Jayden!).  My husband and I are very hopeful that we will soon be able to use CBD with our almost four year old daughter.

Please understand… We are NOT talking about having our daughter smoke weed.  In fact, there are quite a few young children (many of which have Dravet Syndrome) who are already using CBD in states like Colorado & California and around the world.  These children get their daily dose by eating it.  Some process it and extract the oils from the plant.  I’ve seen where others blend it up into smoothies. 

The non-profit organization we are most interested in working closely with is in Colorado.  They go by the name of The Realm of Caring.  It is the Realm of Caring who were able to offer hope to young Charlotte Figi.  Charlotte Figi has Dravet Syndrome and is one of the more severe cases that there is.  Her story is told in this video on Youtube.  I have “known” Charlotte and her mother Paige since well before she began using CBD.  We are both members of a number of epilepsy & Dravet Syndrome groups together on Facebook, and I have always paid special attention to Charlotte’s progress because like Sydney, her seizures were incredibly severe. 

Sydney says "No more seizures please!"

From the time Sydney began experiencing seizures, she has presented as a far more severe case of Dravet Syndrome than many of the others in our groups.  She can easily have 1000-2000+ seizures DAILY.  She experiences at least 7-8 different seizure types and has since her first year of life.  I believe this was why Sydney was diagnosed as early as she was with Dravet Syndrome; otherwise, it likely would have been years until she was properly diagnosed.  I believe if Sydney were not on her special Ketogenic diet & her eye patches, she would seize nonstop daily and be every bit as severe a case as what you will see or read about Charlotte.  The one difference between Charlotte & Sydney is that Charlotte has allergic reactions to the meds that are supposed to stop these life-threatening seizures; therefore, they can no longer be used with her.  Fortunately, Sydney can use them, it’s just that they are not all that effective in stopping seizures for her.  Charlotte was on the Ketogenic Diet for a number of years.  Unfortunately, Charlotte reached a point where they diet was no longer helpful for her seizures.  I pray I never see that day with Sydney, but it is a fear of mine. 

Sydney getting ready for a tube feed

The Realm of Caring has genetically bred a marijuana plant (known as “Charlotte’s Web”) that is very high in CBD but very low in THC.  In other words, the kids that use the oils from this plant do NOT experience the “high.”  However, they do experience some of the other side effects from the marijuana plant, such as the hunger.  With our kids, having a case of the “munchies” is a fantastic thing!  Just like many cancer patients who have lost interest in eating, so do many of our Dravet kids.  Their medical drugs take away the desire to eat.  Many become very thin or anorexic.  Many (like Sydney) have to have feeding tubes placed to get enough nutrition in them.  PLUS the CBD is very effective in controlling their seizures!  Talk about some awesome side effects for a change!

Many who are against medical marijuana, especially in children, cite that we don’t know what the long term effects will be.  Well, I can tell you that the long term effects of all these horrible drugs that are used in staggering combinations in our kids are not good and their side effects are horrendous.  In fact, once the barbiturates & benzodiazepines are started in these kids, it’s incredibly difficult if not impossible to get the kids off of them.  I’ll take my chances with a natural product!  There are NO CASES where someone has overdosed on medical marijuana.  Can’t say the same for the pharmaceutical drugs. 

Sydney has been trialed on at least SEVEN different antiepileptic drugs and in various combinations.  She is still on three of them now.  We know these drugs are doing nothing more for her than holding her back.  Our goal for Sydney would be to keep her on her ketogenic diet & eyepatches, start her on CBD, while gradually weaning away her three drugs.  Once she is on CBD, if she has the seizure control that so many others experience, we would like to wean her diet.  My child has NEVER IN HER LIFE had cake or ice cream or mashed potatoes.  I WOULD LOVE to let her eat normally for a time! 

We are at a turning point in our nation’s history.  As another Dravet mom posted on Facebook, “It’s really cool ‘our kids’ (meaning Dravet kids) are changing the world!” and I agree!  Tonight on CNN at 8p.m., 11 p.m., and 2 a.m. EST there will run a special program called WEED.  Dr. Sanjay Gupta has interviewed the Figi’s and researched a number of other cases as well.  Please make every effort to watch this special and become educated on medical marijuana.  I can guarantee you will learn something you never knew before & you will get to meet Charlotte!  As for us, unless we can get the state of PA to start moving on legalizing medical marijuana, it looks as though a move across country might be a very real possibility in our near future! 

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Living life with Dravet Syndrome

 

Team Sydney 2012 in Providence, RI

The past two years, I have run a half-marathon each summer for the Dravet Syndrome Foundation, part of their Race Towards a Cure RACRE (Research and Cure Refractory Epilepsy) series.  In 2011, I was the solo member for “Team Sydney.”  Last year, my husband Paul, and two other friends joined me to complete “Team Sydney” for 2012.  Both of these runs were completed in Providence, Rhode Island.  This year, we were hoping to form a Team DSF Pittsburgh, but unfortunately, the race we were to run was canceled.  So for 2013, “Team Sydney” will be running in Philadelphia, PA on September 15th. 

This year, it sounds like “Team Sydney” will be made up of at least 6 runners… myself, Paul, Sydney’s Aunt Anna, a co-worker of mine, Kristy Clements & her husband Jayson, and a new friend and fellow seizure mom, Becky Kmetz.  Our team grows each year!!!  Each runner pledges to raise $500 for the charity, Dravet Syndrome Foundation.  So with six runners this year, Team Sydney will need to raise a collective $3000. 

Sydney with Mr. Mike Sugg as "Toby Keith"

Last night, we attempted to raise that total amount with our fundraiser “Concerts 4 A Cure.”  A new non-profit organization Ray of Hope did an awesome job organizing and running this benefit in Sydney’s honor.  Unfortunately, our turn out was poor, so we did not get to raise any of the funds for the DSF. 

Our event consisted of a dinner, DJ, basket raffle, various vendors, and to top it off, four country concerts!  Three of our performers were Tribute Artists portraying several of today’s top country stars, including Tim McGraw, Kenny Chesney, and Toby Keith.  All three of these artists were fantastic.  You wouldn’t have known you weren’t seeing the real deal!  If you ever have the opportunity to go see any of these guys live, I can tell you that you will not be disappointed!  Our fourth performer happens to be a former student of mine.  Miss Kourtney  Jean Zufall, who won our local Froggy station’s Idol contest.  She was absolutely beautiful and sang like a dream.  I can tell you one day soon she will be making it big, and I will be able to say I taught her science when she was in ninth grade!  :-)

Mr. Joe Grooms ("Kenny Chesney") singing to Sydney & nurse Debbie

With such an awesome evening, it was too bad we didn’t pull in a bigger crowd.  I am continually puzzled as to why our fundraising events don’t draw in people.  For the most part, I think it may be as simple as folks not understanding the severity of Dravet Syndrome.  Of course, no one has ever heard of it, with it being such a rare disease.  Other than a few neurologists, I have not yet come across a doctor who knows what it is.  Every time I begin to explain Dravet Syndrome to someone by mentioning seizures, I immediately see people lose interest.  I don’t know if it is because seizures are such a frightening/ugly thing to behold and folks would rather not talk/hear about it, or if it’s because everyone knows someone who has seizures and “so & so is fine” or (my favorite) “my dog has seizures.”  Oh folks, Dravet is SO MUCH MORE than seizures.  Not to mention with Dravet Syndrome, these are seizures on a scale that you can’t even imagine.

Everyone knows that when an adult or child is diagnosed with cancer, it is devastating news.  Since we all understand cancer as a diagnosis, allow me to draw a few parallels between cancer and Dravet Syndrome, to try to show how devastating Dravet is as well.  One thing about a cancer diagnosis is that often cancer can be cured, be it through operations, chemo, or radiation no doubt though the road is a hard one.  With Dravet Syndrome, THERE IS NO CURE.  We don’t have that chance.  Do our kids face operations?  Yes; many throughout their lifetimes.  Our kids need ports inserted because their veins are shot; VNS devices implanted in their chests/necks in the hopes of shortening some of the seizures and then future surgeries to change the batteries; multiple corrective surgeries on their lower limbs because as they approach their second decade of life, the low muscle tone they suffer from begins to break down their feet & ankles; brain surgeries to try to shorten or halt certain types of seizures…and the list goes on. 

Mr. Allen Scott ("Tim McGraw") and Sydney

Another similarity between cancer & Dravet Syndrome is that, in both cases, the individual faces death.  If the cancer is such that death will occur, often there is a time table with it.  Kids (or adults) with cancer can plan to do certain things or visit with each other and at least express their love or mentally prepare for what is to come.  With Dravet Syndrome, any moment could be our last together.  No matter how hard my day with my daughter has been, I always try to remember as I am laying her down in her bed, that this could very well be the last time I look at her alive.  I always try to tell her I love her at bedtime, just in case it is my last opportunity to do so. 

You see our children have a fairly high rate of passing away from something called SUDEP (Sudden Unexplained Death of Epilepsy).  Dravet Syndrome affects channels (or pathways) in the brain.  Some of these same channels carry the instructions that keep our lungs breathing and our hearts beating.  In a child with Dravet Syndrome, sometimes while they are sleeping those instructions do not get passed correctly and the child dies because their heart simply stops beating.  Sad to say, but if we lose Sydney, I’m hoping for SUDEP to be the cause because nothing could be harder to watch than to see your child seize for so long that they must be placed in a coma to try to stop the seizure, only to find that their brain was too severely damaged for them to ever go on normally again. 

Our children are developmentally delayed (often labeled as retarded- oh how I hate that word) and have behavioral issues (many end up with a dual diagnosis of Autism, but in our case, the autism is a side effect of the Dravet).  Their delays make it difficult to explain to them why they are having seizures or need more blood drawn or need to have another surgery.  Sydney has recently learned to say the word “Why?”  Oh, how it breaks my heart, when she is cluster seizing while crying & asking me “why?” in between each seizure. 

Sydney

Sydney had a pretty bad night tonight.  She began seizing around 6 p.m. with her typical myoclonic jerks.  You might have a slight idea what a myoclonic jerk is if you have ever jerked suddenly as you were falling asleep.  That motion is similar.  In Sydney’s case, her myoclonics tend to cluster, which means she has them back to back to back sometimes lasting for hours.  Tonight, she was jerking so hard she was being thrown backwards or knocked to the side EVERY 10 SECONDS and this lasted for OVER THREE HOURS, with her crying and screaming in between each one.  A neurologist would advise us to give her her rescue meds to stop the clustering.  But WE WOULD HAVE TO USE THEM EVERYDAY, which would render them ineffective after a while for when we truly needed them.  So, the seizures go on…

Sydney's meds...oh, we do THIS twice a day!

Most likely, Sydney was so bad tonight, because we are trying to wean her off one of her rescue drugs (Ativan) that she has needed to be on now for over a month due to various illness.  The drugs they place our kids on are horrible & have horrible side effects.   Sometimes the drugs turn them into drooling zombies.  Sometimes the drugs take away their desire to eat.  Sometimes the drugs make their hearts race and make them so hyper they can’t calm down or fall asleep.  Sometimes they can’t wake up no matter what you do.  Sometimes the drugs make them scream and scream and scream until as a parent you think you are going to lose your mind listening to it and knowing no matter how much comfort you offer, you can’t do anything for them.  None of the drugs can/should be stopped cold turkey and it is incredibly difficult to wean their little bodies off these drugs.  I have been trying for years now to wean various drugs off of Sydney.  Take my word for it…drug weans are horrible.

Sydney knocked out from a big seizure

Cancer drugs (chemo) are horrible too.  Sure, they kill the bad cancer cells, but they also kill the healthy cells of your body.  This is why folks who are battling cancer become ill and immuno-suppressed, meaning even a common cold is very dangerous for the individual.  Our kids are immuno-suppressed too.  They seem to get every little thing that goes by or can suddenly spike a temperature out of nowhere, which can bring on a highly dangerous form of seizure known as status epilepticus.  Sydney has had TWO bouts of unexplained fevers, which led to Status Epilepticus & two lifeflights to Pittsburgh in JUST THE LAST MONTH!!!  Her last status seizure lasted 45+ minutes before they could get it stopped.  As a parent, you are praying every damn second of that time period…

There is so much more to Dravet Syndrome that I haven’t even touched on in this blog, but I know it is getting long.  Let me wrap it up by briefly explaining how severely Dravet affects the normal family life… Because of Sydney’s immunosuppression and her various seizure triggers (light, heat, cold, excitement, etc…), she (and we) rarely leave the house.   We go to work while a state-provided nurse stays with our daughter in our home.  We are only approved for nursing care for while we are at work, so we must come straight home to begin caring for Sydney.  Our house is kept very dark (dark wood blinds in almost all our windows) and cool.  I am a teacher so I am off in the summer, but rarely can I go outside and enjoy the summer weather.  Even if Sydney takes a nap, I can’t sneak outside for she must be constantly watched in case a seizure should begin.  I can’t simply run to the store to pick up bread.  The fluorescent lights in stores are brutally hard on Sydney.  If I decide to risk it, then I must bring her oxygen and emergency kit full of meds, stopwatch, suction device, etc…in case she should happen to have a seizure while we are out.  Often, if we take her out somewhere for any length of time, we have pre-medicated her with Ativan to hopefully keep the big seizures away.  My husband Paul & I can’t go out to a concert, hockey game, or even dinner easily.  We can’t simply call up a babysitter because dealing with our seizure kid is too terrifying and stressful for people who aren’t used to it.  Even my family is terrified to get stuck watching Sydney for more than a few minutes. 

Aaron, not happy about being asked to hold Sydney when she was having a bad morning & Mommy needed to get all Sydney's medicines ready. He'd much rather go play Pirates!

Our five-year old son’s life is also greatly affected.   He is constantly asking me to play either outside or somewhere in the house that I can’t take or monitor Sydney.  I hate telling this little boy “no” all the time!  I’m constantly having to come up with reasons (other than Sydney) as to why I can’t do as he asks (because I don’t want him to grow up resenting her anymore than he may already).  Her constantly screaming & crying when she is clustering  with her seizures is more than he can handle many days.  He gets incredibly frustrated & angry anymore when she is crying.  I hate that he rarely gets a break from it.  He has witnessed many scary events with his little sister.  I can’t tell you how many times he has asked me “is Sydney going to die?”  This picture was drawn by Aaron about a week after Sydney’s last status seizure.  Basically, he drew the scene as he remembered it.  I did not ask him to do this; the drawing was totally unprompted. 

Five-year old Aaron's drawing of Sydney's seizure

The scene shows the ambulance outside the house, with its lights flashing.  The two paramedics (one of which is holding Sydney) and Mommy are running down the steps to the ambulance.  And as always, Daddy & Aaron are left behind in the house.  When I asked him what was in the sky, he told me they were meteors.  It took me a few weeks to realize the significance of meteors in the sky.  A few months ago, he told me he no longer wanted to watch a cartoon on PBS called “Word Girl.”  Apparently, there was an episode on that dealt with meteors and it scared him.  He told me at the time, he kept having nightmares about the meteors and Word Girl.  I think the meteors being present in his drawing are showing his fear or how scary he finds this whole situation to be.  Sad…

Dravet Syndrome Foundation- Steps Towards a Cure

Ok, so I did not give you this peek into our lives to make you feel sorry for us.  Instead, I and my “Team Sydney” teammates are going to be asking for your help in the next two months.  Help us fight Dravet Syndrome by raising money for the Dravet Syndrome Foundation to further fund research for this severe condition.  Any monetary gift is tax-deductable.  You can use this link to donate (Dravet Syndrome Foundation) or visit www.dravetfoundation.org and look at “Annual Events,” then “DSF Steps Towards a Cure- RACRE series,” “Philadelphia September 15th,” & then click on “Team Sydney.”  You can either donate to the entire team or if you wish, pick a specific runner on the team.  We currently have $845.00 raised and our goal is $3000.00 by September 15th.  Please consider donating.  Any small amount will help push us closer to our goal.  Thank you for your help!

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Service dog update…After 3 weeks at home with Lexus

 Well, we have now been home with Service Dog Lexus for almost three weeks.  Wow!  Has it really been that long?!?  I had meant to update everyone on how we are doing after the first week, but in the life of Dravet, there isn’t really ever a good time to work on a blog.  :-)

Sydney & Lexus- Week 2 at home

Our first week home was filled with much anxiety.  Turns out, Aaron & myself are both allergic to Lexus.  I was pretty sure I would be from the beginning, but Aaron’s allergy was more of a surprise.  Aaron’s allergy seems to be worse than mine (probably because I KNOW to stay out of Lexus’s face and not roll all over the floor to avoid my allergic reaction to her).  Aaron’s asthma has been all inflamed because of Lexus.  We tried some Children’s Claritin which really didn’t seem to do much of anything for him.  So we were VERY CONCERNED that we were going to have to contact 4 Paws and return Lexus. 

We figured we would stick it out for the week, hoping that Aaron might adapt to Lexus if given a little time.  Meanwhile, Paul was researching and buying special anti-allergen pet shampoos, and we dug out a few air cleaners and have those up and running.  I kept sending Aaron outside to play or get in our baby pool to rinse off any dog hair.  By the end of the week, Aaron seemed to be doing a little better with Lexus.  So currently, we are limping along with our allergy issues.  As long as nothing gets worse than it is right now, we will manage.

Week 3:  Sydney & Lexus sure can destroy a roomMore anxiety came from trying to keep Lexus from chewing up and destroying every toy in the house.  LOL…We foolishly thought we would be bringing home a well behaved service dog.  Ha-ha-ha…NOT!  Lexus is still very much a puppy.  She probably was not exposed to a home filled with kid’s toys either.  She was in prison, then college, then 4 Paws…so kid toys are quite likely a new thing to her.  Oh my gosh!  Between Sydney throwing toys, spreading them around everywhere, and Lexus ferreting out any play food item that in any way resembled a ball, holy crap are we busy!  We really did bring home a third kid!  This toy problem continues to be an issue. 

We were also told at 4 Paws that our service dogs would likely test us when we brought them home.  They would test every rule that we gave them.  Again, boy were they not kidding!  Lexus is quite a terror around the house, not wanting to follow her rules.  That first week (& even now) seemed like constant practice.  After a day or two, Paul took her out to the grocery store, expecting disaster, but he came home and reported that she was an angel! 

Week 2:  Sydney & LexusShe continues to constantly break & test rules around the house.  And we are constantly correcting her and re-planting her wherever she was supposed to be & in whatever position she was to be in.  However, on each public outing, she is as good as gold.  So we think what we have is a service dog, who believes that when she is in public she is working; when she is at home, she is not.  This is both good & bad.  Great that she behaves so well in public, but she really does need to understand that she has to work at home too (at least sometimes).  More work….

We also think one of our problems is that Lexus doesn’t get to go out much.  We think she is bored and wild because she needs more exercise.   She likes to go in public & work, but Sydney very often can’t tolerate to leave the house.  Stores have always been next to impossible with Sydney, because of all the seizures that begin to fire off as soon as we step foot in the door (usually lighting is the issue).  With it being summer, the heat is also something Sydney cannot tolerate, so Sydney can’t go out and play. 

We have a fenced in back yard, so Lexus gets breaks to go outside; however, we live in town, so our back yard is not that big.  We do take her on an evening walk, typically once the sun has set so that Sydney can go along too.  The evening walk does help, but we think Lexus needs a morning walk as well.  We haven’t yet figured out how to manage that as morning is such a bad time for Sydney, so I can’t take them out.  :-(

Week 2:  Sydney pushing Lexus's kisses awayLexus and Sydney are still struggling with bonding.  It’s not surprising really.  Sydney is NOT a morning person, mostly because she usually wakes up & goes right into her morning ritual of myoclonic seizure clusters, which can last for an hour or two.  I have observed that whenever Sydney wakes up, Lexus is all into her!  Lexus is so excited to see Sydney and comes over to nuzzle and lick her.  Sydney, however, does NOT enjoy this when she is seizing and screams, cries, and pushes Lexus away.  Once the seizures calm down and Sydney’s mood improves, then Sydney is into Lexus, but by that point, Lexus is no longer interested in her. 

Week 2:  Sydney loving LexusMost of the other families report that their service dog doesn’t leave their child’s side.  LOL…This is NOT us either.  Lexus next to never follows Sydney around, unless Sydney has food in her hand.  We usually have to call Lexus to come to wherever Sydney is and then place her in the “down” position near her.  We continue to “treat the crap” out of Lexus when Sydney is around as 4 Paws suggested (again, speaking of food here).  All this being said, Lexus really doesn’t seem to be bonding with any of us.  The rest of us are doing as suggested by 4 Paws…mostly ignoring her when Sydney isn’t around or specifically involved with the activity.  So I think she sort of feels like a fish out of water, especially with the conflicting signals she gets from Sydney. 

Sydney out cold at Children's following her 45 minute seizure & lifeflightSydney has had one BIG seizure since we have been home.  Unfortunately, Lexus did not alert to it, which again with our bonding issue & Sydney’s shear number of seizures that she has daily, it was not surprising.  4 Paws did tell us that because of the number of seizures that Sydney has daily that Lexus would likely need on-the-job train with Sydney while she was having a big seizure a few times before she would have any chance of alerting prior to one occurring.  This seizure that Sydney had turned into a 45+ minute status epilepticus (the most dangerous of all seizures) event, in which Sydney was lifeflighted & hospitalized.  Our biggest disappointment with this event was that Lexus seemed totally disinterested in what was going on with Sydney.  She didn’t even bark on her own to alert us that Sydney was currently having a seizure.  She did GREAT with the “place” command when the EMS personnel barreled into the house and took Sydney out to the ambulance.  She didn’t move a muscle.  I guess the good thing with this was that it was a great seizure for Lexus to train on.  Aaron kept asking when Lexus was going to stop Sydney’s seizure.  Poor kid!

Lexus didn’t get to fly with Sydney and I in the helicopter but she did come to Children’s Hospital with Paul via our car.  She did well with having to stay overnight and sleep in a strange place.  The nurses complimented her that when they would sneak in the room in the middle of the night for vitals, Lexus did nothing more than raise her head to see who was coming in.  She didn’t try to get up or get in the way at all. 

Week 3:  Sydney & Lexus pass out together following total house destructionWhile this blog might seem somewhat disappointing, we are all doing okay.  There have been more positive signs lately, especially in this third week.  Lexus is starting to follow Sydney around more willingly & Sydney is laying on her and with her more often.  We also just purchased Sydney’s first “big girl” bed.  When it arrives, Lexus will begin sleeping with Sydney in her bed at night.  We are hopeful this will also help the bonding process.   Kind of hard to do right now with Sydney still in her crib.  I think once I and Aaron return to school in the fall, Sydney will be the only constant in Lexus’s life.  So I truly am not giving up that the bond will occur.  We all recognize that this whole thing is a process that is going to take longer than that two week training period that we had at 4 Paws.  We are in this for the long hull, and if need be, Lexus can always return to 4 Paws for refresher courses or more training as needed.  We are still feeling fairly positive that everything will fall into place with more time.  Stay tuned for more updates…

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4 Paws Training Day 12- Did we pass???…. (drum roll)….

 Today dawned on our final day at 4 Paws…and this was not just any day…this was THE DAY.  Test day!  We were a little nervous about the “puppy” side of Lexus with the test looming.  She hasn’t had much general exercise or play time lately, so Paul took Lexus over to 4 Paws for about 20 minutes of fetching the tennis ball to let her run off some energy. 

I spent the morning packing up the hotel room so when Paul returned, he could pack the car.  Seems like we were taking more home with us (aside from the dog), than what we brought.  Lexus is not fond of leaping into the back of our SUV anyway, and I was worried if we had luggage packed in the back of the vehicle that might give her more of a reason to say “no.”  Since showing we could safely load the dog into the vehicle was part of the test, we decided to cram as much as possible into the car top carrier and into the backseat next to Sydney.  Then, on to the mall….

When we arrived at the mall, the first thing we practiced was the stairs.  Paul & I have been practicing the stairs with Lexus at the hotel, but the hotel stairs were carpeted and the mall’s stairs were not.  Then we cruised with Lexus around the mall’s top floor, allowing her and us to acclimate to the atmosphere.

Test time!  The first thing Paul and Lexus had to do was to “greet & meet” another one of the dogs in the class.  Both dogs had to remain calm while meeting together.  Then the handlers exchanged the leashes of their dogs to simulate a “stranger” holding onto their leash.  Both handlers had to walk away from their dogs without the dog reacting.  Each handler had to step over each other’s dog, while the dog continued to maintain its down position.  Both Lexus and Holmes (the other dog) performed this well.

"Hmmm...should I or shouldn't I?"

Then it was time for the food temptation.  A plate of turkey lunch meat was laid down on the floor of the mall.  Each handler had to walk their dogs close to the plate, and then have them lay down next to it.  The trainer pushed the plate to right in front of their nose while they laid there.  Lexus wormed her way so that her nose was smack against the plate, but…she didn’t even try to take it!  How hard would that be for a dog!!!

Paul and Lexus then had to stroll through the mall & a few stores for about 20 minutes.  Paul had to drop his leash to show Lexus would stay by his side.  They had to show a sustained sit or down position a few different times throughout this time period.  Paul dropped (by accident) a heavy item to the floor, which was a good thing as a loud noise had to occur at some point during the test so the trainer could observe the dog’s reaction.  Paul and Lexus had to show a nice tight heel between clothing racks in a store.

Paul & Lexus heeling in the mall during their test

The next portion was the mall’s food court.  Paul had to sit at a table for 20 minutes with Lexus maintaining her “under” position at the table.  We had a slice of mall pizza to pass the time.  (Sbarro’s….so good!)  At the end of that time frame, Paul walked Lexus out to the car to load her.  She, of course, baulked.  Oh no!  Was this the end?  Would we fail simply because our crazy dog didn’t want to jump into the back of the vehicle?  Paul began to bait the back of the car with tasty treats, as beads of nervous sweat began to gather on his brow… (am I killing you with suspense yet?  :-)  ).  He gave the “jump” command one more time…. and SHE DID IT!  The test was complete and Lexus & Paul passed!!!! 

Paul doing the paperwork

We then had to return to 4 Paws for the paper work to take our 4 Paws certified pup home.  We had to sign a contract with 4 Paws before Lexus officially became ours. The paperwork required a little more than an hour to go over and complete.  It was like we were buying a car.  Part of the contract with 4 Paws requires complete documentation of all medical treatment that Lexus has.  4 Paws can come check on her anytime they want and/or we must be able to show Lexus’s medical records whenever requested.  If at any time, 4 Paws feels that Lexus is not properly being taken care of, they can remove her from our care. 

On the other side of the contract, 4 Paws will always be there for us.  For example, if Sydney’s needs change, we can return Lexus to them for further specialized training at any time and they will train her however we need.  Awesome!  If we ever run into trouble with an establishment trying to deny Lexus access and our explanation that she is a service dog is not enough, we are to get the name and number of the manager, contact 4 Paws, and they will take care of it. 

Time for the graduation ceremony!  Today, our training room was incredibly full with many sponsors  and donator’s to the 4 Paws program, many of the families or college students who fostered the dogs attended, and of course all the families and special needs kids receiving their dog.  (I didn’t see anyone from the prison program though… hmmm….).

The Graduation Ceremony

Jeremy, the training director of 4 Paws, began our ceremony by explaining that a lot of people are involved with each dog to prepare the dog for his/her graduation day.  For the benefit of others in the room who have not heard what all goes into preparing the dogs, he explained the training begins almost immediately from the puppies birth.  Then on to the prison program, the foster homes, the socializers, the 4 Paws trainers, and finally, to the families in need. 

Lexus with her college "roomies" (foster college students)

Jeremy passed the microphone around to each of the families receiving their dog that day to introduce themselves and their child and also to express whatever they wanted to.  There were many tears as these heartfelt speeches were being made, but my big, tough, former Marine really set them off.  He was the fourth of fourteen families to speak, and could barely get through saying much of anything when he explained that we believe Lexus alerted the first time to one of Sydney’s larger seizures last night.  (I forgot to include that in my blog last night…of course, since that was our first time, we weren’t sure if that was what happened until today).  From there on, all the big, strong guys knew it was okay to blubber a little (although, they all blamed Paul for it).  :-)  Very touching…

All the 4 Paws for Ability trainers & Karen Shirk

So for what Paul perhaps wasn’t able to say…We want to thank everyone from the bottom of our hearts for all the training, love, attention, and care given to our puppy Lexus.  We are completely confident that Lexus will fit perfectly into our family and will become the most amazing service dog for our Sydney as we continue to work on her training.  Thank you 4 Paws for Ability!  And, without our family, friends, and total strangers who donated the funds needed for the fundraising portion of this adventure, today would have NEVER happened.  We cannot thank each and every one of you enough! 

For parents who have been following this blog, who are anticipating a trip now or in the near future to 4 Paws, we have a few recommendations for you now that we have been through the experience.  If you have signed up for tracking, bring rain gear.  You will track in the rain.  Make sure you know what POISON IVY looks like before you begin to track!  If you have asthma & are tracking, you may want to use your inhaler before you get started (or at least have it on hand).  You move quickly, if not run, during the tracking.  There were a few times I had wished I had remembered to use mine.   If you have or think you might have allergies to animals, bring your allergy medicine or inhalers with you.  Do not wear your best clothes.  Everything you bring will be covered in dog hair.  4 Paws is essentially a kennel, housing probably 50+ dogs.  Be prepared for the kennel smell. 

4 Paws recommends two adults; one for the dog training, one for the kids.  Bring another extra adult, especially if you have more than one child with you.  Two of us was definitely NOT enough.  I missed out on hearing/learning so much.  Not to mention, it was impossible for me to keep track of Aaron, with Sydney being a full time chore in herself.  You do NOT have to bring the entire family; in fact, it might be better to leave the other kids at home to allow the all  important bonding to begin between your special needs child & their dog. 

Finally, if rooms with a lot of noise or a lot of people in them are a problem for your child, the good thing is that your special needs child does NOT have to be there much of the time.  There are a few special trainings where you must have your child with you (mainly tracking), but for the most part your child can hang at the hotel with one of your adult helpers if being at 4 Paws is too overstimulating.  4 Paws does want the special needs child there though so the bonding process can begin and the seizure training work can also begin between the dog and child.  For Sydney, the worst part was the camera flashes (mainly on the first & last day of class), the fluorescent light bulbs, and the heat (both inside & outside).  4 Paws is air conditioned, but once there are so many people & dogs working hard inside the facility, it gets pretty warm at times. 

Lexus...happy to be in her new home! Woof, woof (Thank you everyone!)

For those who have enjoyed following our adventures with our 4 Paws training period, consider subscribing to Sydney’s website or “liking” Sydney’s Facebook page to stay up with when new blogs are posted or just quick brief updates on how things are going.  Look for us on Facebook at “Sydney Against Dravet”.  Thank you for reading & we hope you enjoyed reading about our adventures at 4 Paws! And now, the adventures are just beginning…..  :-)

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4 Paws Training Day 11- Our final day of class….

 

Waiting for Lexus to find us!

Our final day of formal class began with tracking, of course!  Two more outdoor tracks were completed.  This time at a different location than where we have been heading lately.  Paul & Lexus had to work really hard to find us on the first track.  We used a paved bike trail again for our get away.  The paved surfaces really do seem to be difficult for her, but she eventually found us.  The second track went fairly smooth.  Lexus & I were hunting for Paul & Sydney this time across a big field and into the woods.  Lexus & I briefly lost the trail only once, but it didn’t take us long to backtrack a little and find the skin cell trail again. 

We returned to 4 Paws to practice some more off-leash obedience with distractions.  We also learned one more new combination of commands, which began with walking in the heel position, and then while walking, give the dog the command to “Stand,” which meant the dog was to freeze in its position while the handler continued to walk away from him/her.  Finally, there was one more distraction to be practiced.  Tasty people food!  One of the trainers set out cheese, cream cheese, & a bagel.  The handlers had to walk their dogs very close to the tempting morsels and correct any glance/sniff at the food.  Finally, the dogs were placed in the down position and the food was pushed right in front on their noses.   Torture!

Snug-a-bug with Daddy!

All of this was to help prepare us for tomorrow’s Public Service Test.  The Public Service Test will be held at the mall and will last 40-50 minutes.  The handlers will have to demonstrate excellent control of their dogs under a variety of conditions.  The dogs must maintain the “Under” position while the handler eats something at a table in the food court.  I believe some food will be accidentally dropped on the floor that the dog must resist eating.  Basic obedience skills will be observed as the handler & dog travel around the mall.  The dog must maintain a tight heel in close quarters, for instance between clothing racks in a store.  The handler will be asked to drop the leash at some point to show that the dog will not bolt across the store.  The dog will be placed into the down position and will have to maintain that position as people step over him/her.  The handler & dog will have to traverse the stairs & elevator with the dog in heel position.  The handler must leave the dog with a “stranger” and walk away without the dog going berserk.  The dogs are not permitted to “go potty” in the mall or it is an automatic failure.  The final aspect of the test will be to load the dog safely into the vehicle.  This part may not sound hard, but Lexus is often less than enthused to jump into our Explorer.  It’s a pretty big jump for her.  Hoping she doesn’t baulk tomorrow!

Everyone is wore out after two weeks of training!

The rest of the afternoon was devoted to talking about the American Disability Act and what our rights are under the law in terms of the service dogs.  Frequently establishments will have rules such as “no pets allowed.”  A service dog is NOT a pet, so under the ADA this rule does not apply to them.  We can never be charged extra because we have the dog with us; that is seen as discrimination under the ADA law.  The dog is a piece of medical equipment.  Anywhere a wheelchair or oxygen tank might go, the dog can go too.  However, we as owners are held liable for any damage to any property that could occur.  Establishments can also ask us to take the dog and leave their establishment if the dog is being disruptive.  We talked a little about how to introduce our service dog to any pets that might already be at home.  We also discussed taking the dogs to school, for those families whose kids are at a school age level. 

So our appointment tomorrow to take our Public Service Test is at 11:30.  As long as Paul & Lexus pass, our final paperwork is scheduled to be completed at 1:30.  The graduation ceremony begins at 3:00.  Please pray that Lexus keeps her “puppy” side squashed tomorrow during the test & that no one walks by bouncing a tennis ball in the mall!  😉

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4 Paws Training Day 10- Almost there!

 Today was basically one big review.  Our final test as handlers comes on Friday.  As long as we can demonstrate the necessary skills, we will be permitted to graduate & bring Lexus home with us.  I’m sure we will be getting more information on what will be involved with our “test” tomorrow. 

Sydney & Lexus gearing up for a few hours of tracking

We began, of course, with more tracking this morning.  The first track was again textbook.  Paul & Sydney hid, and Lexus and I found them.  For the second track, I hid with Sydney, while Paul worked with Lexus.  This time, Lexus had a lot of trouble, which was good that Paul finally got to work a track that didn’t go so smoothly while we had a trainer with us that could encourage us with what steps we should take.  There was a stronger crosswind that may have contributed to some of the difficulty.  Also this time, I walked for a decent distance following a concrete bike trail.  Lexus isn’t used to tracking on concrete.  The bike trail bordered a wooded area.  The crosswind must have been blowing our skin cells into the wood, because Lexus was highly interested in scoping out the woods.  After a while, Lexus began to lose interest in the hunt.  She seemed almost spooked by the woods or perhaps something she heard in them.  Paul & Peggy (the trainer) had to keep talking her up to get her excited to track again.  Finally, Lexus found us, but she was hot & tired.  :-)

Flame (the little darling as Aaron calls him) heeling without a leash...Lexus lying there patiently waiting her turn.

Then, we went back to the training center for more work & review with seizure work, behavior intervention, tethering, & off-leash obedience.  I have to say one of the things that impresses me the most is a dog walking in “heel” position, who is not on a leash.  I have had a number of Boxers in the past; I could barely get them to walk ON a leash without half killing me, let alone asking them to stick right by my side WITHOUT a leash on.  Impressive!

For the afternoon, we went back to the mall for our final practice trip.  Lexus really does well in a highly public setting such as the mall.  Paul’s only complaint is that Lexus “heels” a little too far forward for his preference.  She likes to be about a foot in front of him, always anticipating our next move.  While working with one of the trainers on this problem, she said to give the correction and with every third correction, turn a 180 on Lexus to show her that she shouldn’t be anticipating the direction Paul is going. 

Sydney wanted to hold Daddy' hand at the mall.

She explained that just like humans, dogs can also have tunnel vision.  If you are walking down a long hallway, or a wide aisle, the dog will try to assume you will be following that path.  Paul must have looked like he was doing some crazy dance in the middle of the mall because about every 10-15 steps, he’d spin a 180 on me and head the other direction before turning another 180 to head back to join me.  I didn’t even try to keep up.  We walked both floors of this entire big mall with Paul and Lexus doing 180’s.  Finally, by the end, Lexus was starting to find the correct position (although, it may have been more exhaustion on her part that caused her to lag further back).  She is a sweet, but hardheaded, dog.  It will take work, but she will eventually get it. 

At one point in the mall, Paul & I separated in a store.  I told him where I’d be, but when he got there he couldn’t find me.  So he figured, “I have a tracking dog here; let’s put her to work.”  He talked Lexus up, gave her her head, and off they went.  I saw them searching so I held still in my position and let Lexus work it.  It didn’t take her too long and find us! 

So tomorrow, I anticipate lots of review of all the things we have been taught, plus an overview of the final test on Friday.  Fingers crossed and prayers please!  We are coming to the end! 

The bond improves!

Sydney waiting to reward Lexus with her ball, once she is found!

Even though Lexus is a highly trained dog, in the end, she is still...a dog!

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4 Paws Training Day 9- A bunch of dead dogs…

 

Lexus tracking through the kids

I LOVE TRACKING!  It is just crazy how good these dogs are with this skill.  This morning’s training began with two more tracks of a missing Sydney.  My hip is feeling okay as long as I don’t try to walk carrying Sydney anywhere.  So, we utilized Sydney’s stroller for tracking.  I was able to easily “get lost” with Sydney in her stroller.  For the second of the two tracks, the head trainer purposely sent Sydney and I through an area where about 30 kids were traipsing around.  This forced Lexus to have to ignore all those other skin cells and seek the ones she was looking for.  Pretty impressive how quickly she was able to do this to find Sydney. 

Once outdoor tracking was done, we headed for the Rite Aid to pick up Paul’s prescriptions for his poison ivy.  He had received a shot while at the Urgent Care center, but the doctor had also called in a prescription for him.  He came out with a pile of meds that rivaled Sydney’s pile. 

These would be Paul's meds, not Sydney's!

We arrived back at class to learn another few commands.  The first was “Back,” a simple command to get the dog to back up when needed.  We then learned a few more behavioral intervention commands, such as “nuzzle” & “touch.”  “Nuzzle” can be used to interrupt a meltdown.  We witnessed Lexus use this skill one time with Aaron before he left.  He had hurt his toe and was sitting on the floor crying.  As soon as he started crying, Lexus ran over and was nuzzling him, or bumping him with her nose.  “Touch” can be used anytime someone begins an undesirable behavior.  We can train the dog for whatever behavior that we want.  Perhaps Sydney goes to the door and begins to open it.  Lexus can be trained to recognize  that as an undesirable behavior.  She will run over and “touch” Sydney with her front paw to distract her or tell her “no.” Of course, now Sydney is so small compared to Lexus that one touch of Lexus’s paw will send her flying.  I think we’ll wait on using “touch” for a few years yet.  :-)

Heeling with equipment

Then, we practiced walking with the dog in “heel” position while handling another piece of equipment such as a stroller, wheelchair, or shopping cart.  The trainers explained that often in this situation the dog’s heel position will be farther in front of the handler than normal.  This is because the dog likes or needs to be able to see around the equipment.  They explained this breaking of the rules was acceptable in this situation. 

In the afternoon, we talked a little more about real-world tracking & seizure detection.  While there, one of the other dogs began alerting to a seizure for Sydney.  Again, there was no response from Lexus.  One of the trainers came and got Lexus and took her over to Sydney and this other dog.  She asked Lexus to smell Sydney and then gave her a treat.  She then commanded Lexus to bark & rewarded that behavior as well.  A few minutes later, Sydney did have a large enough seizure that it knocked her off her feet.  Several hours later, Sydney went through a REALLY rough cluster of seizures that lasted close to two hours.  So we aren’t sure which of those seizures the other dog was alerting too, but he certainly alerted accurately. 

A roomful of dead dogs

We finished up class by learning a few more of the dog’s tricks.  The trainer explained that aside from perhaps entertaining the kids, the tricks were taught to make the dogs more socially acceptable.  For instance, in a classroom setting, the other students aren’t really going to care about the dog’s ability to track or seizure detection, but a dog who can play dead, now we’re talking!  For the “play dead” idea, they have actually been trained several different ways.  You can point your finger at the dog, like it is a gun, say “Bang” and the dog will roll to his/her side like it is dead (probably not the best idea in a classroom full of children).  You can also say “go to sleep” or slay the dog with an imaginary light saber utilizing sound (for those who are in to Star Wars).  All of these sounds or words will cause the same reaction from the dog, a gentle roll to the side.  The dogs have also been trained to “roll over.” 

When class was done for the day, Sydney was seizing pretty hard so we took her back to the hotel room to sit in a calm, cool, quiet, & dark environment to get her calmed down.  After about 2 hours of seizing, her Ativan kicked in and calmed her down.  We then ventured out to a Texas Roadhouse for dinner, followed by a quick trip to the local mall for the practicing of more skills in a public setting.   

Just Chillin'

While there, we decided to head into Macy’s try a few more indoor tracks.  Paul handled Lexus for the first one.  I took her for the second.  This was my first opportunity to see the difference between an indoor & outdoor track.  The indoor was so fun.  I gave her a little free leash, did the talk-up to get her excited for the hunt, and we were off.  It was really neat to watch her sticking her nose in every aisle or opening between clothes racks to figure out which way Paul & Sydney went.  There was only one time she appeared to be unsure.  She walked into a fitting room three different times before she decided that wasn’t the right way.  We backed up to the last place she seemed confident, and she quickly picked up the scent again.  She happily bounded over to Paul & Sydney.  I can’t wait to have fun practicing this skill once we get home!  :-)

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