Monday, March 31, 2014

TODAY IS THE DAY!

Good luck to all of those participating in the rally today! We pray for safety for all and that the hearts and the eyes of our legislators will be opened!



And remember later...

Join us at the Appalachian Brewing Company 
at 50 North Cameron Street in Harrisburg 
at 7pm 
to support the Campaign for Compassion in PA!

Great food and great company. 

Some of the finest Blues musicians in the state of Pennsylvania are giving a benefit concert in an effort to raise funds for The Lydia Foster Family. Lydia has been suffering from Intractable Epilepsy for 15 years. Her family from Gettysburg, PA was torn apart when Lydia was forced to become a medical refugee in the state of Colorado, where she received Cannabis Treatment Therapy. Unfortunately, due to financial hardships, the family has recently moved Lydia back home. We hope to provide them with relief and support. Even more so, we hope to raise great awareness on the issue of our state's dire need for the legalization of Cannabis Medicine so that Lydia can soon resume the treatment that was finally helping her sleep through the night without being plagued with seizures.

A portion of the proceeds will also be given to the Cameron Houk Family, of New Castle, PA. Cameron is currently being treated with Cannabis Therapy for Intractable Epilepsy. It would be our honor to provide airfare for Cameron's father, who stayed in PA for work, to fly to CO to visit his wife and son.

All of our love and prayers go out to these families, and each family faced with these difficult choices. 



Campaign for Compassion genuinely hopes to help make PA 
a state to love… not a state to leave.



A $20 cover charge will be collected at the door. This will cover music and munchies.

Bands begin at 7pm and food will be served throughout the evening.

We'll also have a silent auction and "Campaign4Compassion" T-shirts for sale.

We wanted to keep the cost low so that as many people as possible can come. But if your heart leads you to give more, know that it will go to a good cause.



"Generosity is the most natural outward expression of inner attitude of compassion and loving kindness."
~Dalai Lama XIV

Thursday, March 27, 2014

Compassionate Cannabis Reform NOW!




On Monday, March 31, 
the Keystone Cannabis Reform Rally will take place 
in the Rotunda of the State Capitol building in Harrisburg, Pennsylvania 
at 10:00 AM!

We urge you to attend this rally and make appointments to talk to your legislators and get them to co-sponsor SB1182.

For more information, please visit the Philly NORML website and sign up to attend through the Facebook event!




Following this event will be our 
Campaign for Compassion Fundraiser!



Join us at the Appalachian Brewing Company 
at 50 North Cameron Street in Harrisburg 
at 7pm 
to support the Campaign for Compassion in PA!

Great food and great company. 

Some of the finest Blues musicians in the state of Pennsylvania are giving a benefit concert in an effort to raise funds for The Lydia Foster Family. Lydia has been suffering from Intractable Epilepsy for 15 years. Her family from Gettysburg, PA was torn apart when Lydia was forced to become a medical refugee in the state of Colorado, where she received Cannabis Treatment Therapy. Unfortunately, due to financial hardships, the family has recently moved Lydia back home. We hope to provide them with relief and support. Even more so, we hope to raise great awareness on the issue of our state's dire need for the legalization of Cannabis Medicine so that Lydia can soon resume the treatment that was finally helping her sleep through the night without being plagued with seizures.

A portion of the proceeds will also be given to the Cameron Houk Family, of New Castle, PA. Cameron is currently being treated with Cannabis Therapy for Intractable Epilepsy. It would be our honor to provide airfare for Cameron's father, who stayed in PA for work, to fly to CO to visit his wife and son.

All of our love and prayers go out to these families, and each family faced with these difficult choices. 



Campaign for Compassion genuinely hopes to help make PA 
a state to love… not a state to leave.



A $20 cover charge will be collected at the door. This will cover music and munchies.

Bands begin at 7pm and food will be served throughout the evening.

We'll also have a silent auction and "Campaign4Compassion" T-shirts for sale.

We wanted to keep the cost low so that as many people as possible can come. But if your heart leads you to give more, know that it will go to a good cause.



"Generosity is the most natural outward expression of inner attitude of compassion and loving kindness."
~Dalai Lama XIV
  

Visit our Facebook event to sign up to come!


You don't have to be well-dressed! You just have to be real.

Latrisha Bentch did a super awesome job yesterday at the Lancaster Rotary in front of "the largest group of well-dressed people she ever stood in front of," as she told them. She was articulate and armed with facts, but more importantly she was genuine and real and allowed the audience some insight into the very difficult choices we face everyday.

Daylin Leach - always genuine and himself - convincingly explained the difficulties we face getting SB1182 passed since we can't even study a Schedule 1 drug. Amazing and always au courant, he could talk to a roomful of old guys, make a Viagra joke (it was discovered by accident, you know) and still get a laugh. This is how policy gets changed. Everyone needs to get out there and talk to people...you don't even have to be well-dressed! You just have to be real.

-MP Tomei

Annie

Annie
AnnaMarie_smThis is our daughter, Annie.  Annie started having Infantile Spasms, a devastating form of childhood epilepsy, when she was six months old.  The constant seizure activity that occurred in her brain during this time of infancy has left her with many physical and intellectual challenges, as well as autistic-like behaviors.  At nine years old, she has now gradually developed into, what doctors refer to as, intractable generalized epilepsy.  Annie has tried over 12 different anti-epileptic medications, with very little success.  Many of the FDA approved medications have had terrible side effects such as extreme stomach discomfort, excessive weight loss, excessive weight gain, drowsiness, hallucinations, loss of coordination, loss of peripheral vision, behavior problems, liver damage and becoming addicted to the medication even though it is ineffective for seizure control.  She was also placed on the very strict Ketogenic Diet for 2 years to try to control her seizures, which was also unsuccessful.  Two years ago, while still in search of the “perfect medicine” for Annie, she FINALLY got about 10 months of seizure-free days.  She was able to enjoy her days and experience a much better quality of life.  She was able to participate in her school goals more cooperatively and with much more success and noted progress.  She was much more alert and her thoughts were much more organized, as was evident in her activity level.   She was able to participate in self-feeding as well as having some bladder control.  Unfortunately, the “perfect medicine” for Annie gave her a severe case of pancreatitis and we spent 5 days at the Penn State Hershey Medical Center.  Since the side effect of the Depakote posed a greater risk to Annie’s health, the medicine was immediately discontinued and so her seizures returned.  This past summer she was on 3 different seizure medications simultaneously in an attempt to gain some seizure control, but with no success.  She is currently having anywhere from 5-30 absent seizures a day, along with a tonic-clonic seizure 1-2 times a week.  When Annie has a tonic-clonic seizure, she will go into a convulsion and stop breathing anywhere from 1 to 3 minutes.  Following this kind of seizure Annie needs anywhere from 3-4 hours to recover.  Annie continues to be challenged with this cycle once a week.  The 10 seizure-free months of Annie’s life that we were able to experience allowed us to see Annie making progress and gains, developmentally and physically.  These were the best 10 months of her life.  We have exhausted all the options for Annie.  Our current hope is the CBD oil, which isn’t currently available in Pennsylvania, will give Annie and many other young children an opportunity.  There has been great success in other states and many trials that are currently underway.  We continue to communicate with a few families that have left residency in Pennsylvania and re established residency in other states, where their children can seek this treatment.  The good news is that they are having great success; the bad news is they cannot come back to Pennsylvania under our current laws. We are hopeful that Pennsylvania will make the right decision, with guidance and regulation, in order to care for these many children that are suffering. Please give them the opportunity they deserve.  We continue to hope and pray every day, that someday Annie can experience more seizure-free days.  This will lead to a better quality of life for her, which is all any parent wants for their child.

UPDATE March, 2014

Since the hearing, Annie has had 10 tonic-clonic seizures.  Leading up to the tonic-clonic seizures, she experiences 5-20 absence seizures in the 3-4 days before.  That may sound a little confusing, but in total, she has had up to 150 seizure episodes.  Her bigger seizures are always scary as we never know when or where they are going to happen.  Annie is fortunate that she is physically able to move about independently, although her risk of injury from a seizure increases.  Last week, she stood up to get another toy from her toy box and that is when her seizure happened.  She started to fall straight down, like a falling tree, and I rushed to break her fall, being across the room when I saw this start to happen.  Luckily, I was able to reach her just in time to push her face to the side, as she continued to fall, and she only had a minor cut on her chin.  Had I been ONE SECOND later to reach her, I have no doubt that we would have ended up in the ER with a much more serious injury to her beautiful face.  (It should be noted that I was simply trying to put dinner on the table when this took place.) The week before last, I jumped in the bathtub, fully clothed, when she started to seize, and used all my strength to pull a 50 lb. slippery, wet and convulsing Annie out of the tub.  The week before THAT she had a seizure while we were having dinner. This is particularly dangerous, as the food needs to be cleared from her mouth, but since she is convulsing, this is hard to accomplish without Annie choking and myself or my husband getting bitten.  (I could go on and on.) Each week brings a different episode.  As we are out of medications to try, there have been no improvements in this pattern, if anything, her bigger seizures seem to be coming a little closer together.  Throughout this pattern, we try to remain hopeful and optimistic that Pennsylvania will pass Senate Bill 1182 so that Annie and other Pennsylvanians will be able to have safe access to medical cannabis therapy.  We love living in Pennsylvania and do not want to be forced to move to another state to give Annie the best quality of life.

Wednesday, March 26, 2014

Ron



My name is Ron, and I have dementia. I am in the final cycle of currently available treatment; my expected remaining cognitive lifespan is 2-5 years. Several years ago, I remember taking my children to visit with my parents who were then suffering from Alzheimer’s. They were beyond recognizing us. I want to continue to savor my children and grandchildren for as long as I can.

I have a strong background in research and have chosen to try to find answers for myself. Since medical journals are within my comfort zone, I started there. All of the available data points to medical marijuana as the most efficacious treatment for extending cognition for me and the 200,000 Pennsylvanians who share my plight. The trigger for each type of dementia is a buildup of plaque on the neurons that impedes the normal neural transmission processes. The only known means of inhibiting the development of plaque and reducing symptoms of Alzheimer’s is tetrahydrocannabinol (THC), an active ingredient of marijuana.

My goal is to help my doctor have this treatment option available. In support of the campaign I have assigned myself as a liaison with the medical community.

Two weeks ago I fell and fractured two vertebrae. While in the emergency department and in the hospital before and after surgery I took the opportunity to speak with doctors and nurses regarding my involvement in trying to get medical marijuana legalized. One of the reasons I’m so at ease in this dialogue is that I like and respect the people who work in healthcare. They are smart, educated and compassionate. With all the research I’ve done, they inevitably know more. Physicians know that medical marijuana is coming and they are gearing up for it as they do with any new medical therapy so that they can dispense the treatment effectively.

In California the agronomists, organic chemists and high grade hippies have had 30 years to develop condition-specific strains of medical marijuana. Children with life threatening seizures are being treated with a few drops of oil under the tongue with no psychoactive effects. It stops or reduces the seizures. There are strains developed to best address dementia. The knowledge base grows daily. It is unfortunate it has to be done in spite of our government.

I urge each of you to do as I have and ask your physicians what they think about the legalization of medical marijuana. Around the U.S. medical marijuana is coming out of the shadows to assume its position as a legitimate mainstream treatment option, and it is unconscionable for lawmakers to withhold this treatment from Pennsylvania citizens.

Tuesday, March 25, 2014

A Change is Gonna Come - ONLY 6 MORE DAYS!

 



50 North Cameron Street, Harrisburg
Join us in supporting the Campaign for Compassion in PA. Great food and great company. Some of the finest Blues musicians in the state of Pennsylvania are giving a benefit concert in an effort to raise funds for The Lydia Foster Family. Lydia has been suffering from Intractable Epilepsy for 15 years. Her family from Gettysburg, PA was torn apart when Lydia was forced to become a medical refugee in the state of Colorado, where she received Cannabis Treatment Therapy. Unfortunately, due to financial hardships, the family has recently moved Lydia back home. We hope to provide them with relief and support. Even more so, we hope to raise great awareness on the issue of our state's dire need for the legalization of Cannabis Medicine so that Lydia can soon resume the treatment that was finally helping her sleep through the night without being plagued with seizures.

A portion of the proceeds will also be given to the Cameron Houk Family, of New Castle, PA. Cameron is currently being treated with Cannabis Therapy for Intractable Epilepsy. It would be our honor to provide airfare for Cameron's father, who stayed in PA for work, to fly to CO to visit his wife and son.

All of our love and prayers go out to these families, and each family faced with these difficult choices. Campaign for Compassion genuinely hopes to help make PA a state to love… not a state to leave.

A $20 cover charge will be collected at the door. This will cover music and munchies.

Bands begin at 7:00pm and food will be served through the evening.

We'll also have a silent auction and "Campaign4Compassion" T-shirts for sale.

We wanted to keep the cost low so that as many people as possible can come. But if your heart leads you to give more, know that it will go to a good cause.


"Generosity is the most natural outward expression of inner attitude of compassion and loving kindness."
~Dalai Lama XIV

Check out our Facebook Event for more information!

Purple for Epilepsy

Be sure and wear purple tomorrow for Epilepsy Awareness Day!


Monday, March 24, 2014

Lorelei


Lorelei is six and was diagnosed with epilepsy four years ago. She has been on over ten different medications as well as a myriad of combinations of those medications and the Ketogenic diet, all with little to no success. Lorelei suffers hundreds of seizures every day. Her condition and her pharmaceuticals impact her life in so many ways, including, but not limited to, developmental delays, behavioral problems, sensory processing delays, emotional and social deficits and lack of impulse control. Of course, her pharmaceuticals also carry side effects like organ failure, kidney stones, depression, intestinal problems and so much more. Medical cannabis could be the answer for Lorelei where all else has failed. Lorelei used to be a happy, well adjusted little girl. She is now just a shell of her former self. Please help me get my Lorelei back.





Update March, 2014

Just days before the hearing on January 28th, Lorelei had surgery to have a permanent feeding tube, called a G-tube, placed. Lorelei's condition and sensory issues make it nearly impossible for her to tolerate food by mouth. The G-tube was necessary to maintain her caloric needs to live. Our hospital stay lasted four days. We continue to have problems with her feedings and her G-tube site.

On February 19th, Lorelei had to be admitted to a hospital in northern New Jersey for a three day video EEG. Twenty or so leads were super glued to her scalp and she had to remain in her hospital bed for all of those three days. This is necessary to collect data and for her to be in front of the camera. We were told that Lorelei just may have "Lorelei's syndrome". She just doesn't seem to fit any specific diagnosis. We are still looking for answers and an effective treatment.

That brings me to today, March 3rd. Lorelei is currently under anesthesia, having a procedure. She has complained of abdominal pain for months now and we are, again, searching for answers. Waiting for biopsy results. Waiting is something we do an awful lot of.

Lorelei has so many seizures, it's difficult to keep count. She has between 200-400 seizures every day. In the thirty-five, plus days since the hearing, Lorelei has had 7,000-14,000 seizures. Putting it in black and white is even shocking for me. It's incomprehensible to think that this is somehow ok. That my Lorelei is being made to suffer like this when there is something, as benign as cannabis, that can help her. 

I want more for Lorelei. I want more for all of these children. I want more for all of Pennsylvania. Please call your legislators, call Governor Corbett, insist that they support Senate Bill 1182, The Compassionate Use of Medical Cannabis Act. The time for action is now.

You can follow Lorelei's journey by "Liking" her facebook page, Legalize for Lorelei, at www.facebook.com/legalizeforlorelei.

Thursday, March 20, 2014

Ryan B.


 RyanB


My name is Diana Briggs. I’m blessed to be the mother of Ryan who is now 13 years old. Ryan suffered an Anoxic event at birth that resulted in multiple disabilities. Ryan has been diagnosed with Hypoxic Ischemic Encepholopothy, C.P., M.R., and Epilepsy. Ryan has seizures everyday. On a good day he has approximately 100 tonic clonic, simple partial, and complex partial seizures. On a bad day we’ve charted over 400.

RyanBWe have tried over 10 conventional medications to control his seizures. In the beginning some dropped his numbers but soon he was back to where we started. Unfortunately they have all come with awful side-effects. One medication harmed his kidney’s, another became toxic and caused liver failure. We have implanted Ryan with a Vagus Nerve Stimulator with minimal results. He is also on the Keto-Genic diet, this also has come with risk. Ryan now has to have yearly EKG’s & Echo’s of his Heart to check for signs of distress due to the diet. He also has bone density scans to check for signs of bone loss due to the diet as well.

With everything we have tried we have never gotten the control we have prayed for. We have unfortunately risked Ryan’s health & well being by giving some of these legal conventional medications. Many have asked how do you not just give up. I WILL NOT GIVE UP!! I refuse to accept that my son has to live like this. If you ever had to hold your child while his little body contorted and shook uncontrollably while you prayed to God that he would just keep your child breathing, you wouldn’t ask why I’m looking for something, anything to stop these seizures! Please give my son the chance at a better quality of life. Give us the opportunity to try Medicinal Marijuana.


To Whom it May Concern,

My name is Alexis Briggs and I am seventeen years old. I’m sure that this will be one of hundreds of letters you receive on the topic of legalizing medicinal marijuana but regardless I felt the need to share my story. I’m the oldest of three children and have a mentally disabled brother. Due to complications at birth he has multiple disabilities but one of the greatest battles he struggles with on a daily basis is his high number of seizure activity. I could list all the names of medication, the treatment, the unconventional measures my family has taken, but that is not something one can easily relate to.

Instead, I’d like to tell you my story. When I was three I was blessed with a baby brother and the responsibility of becoming an older sibling. I didn’t realize that my responsibilities were greater than most three year olds', I was just happy to finally have a sibling. There have been many ups along with the downs during his short thirteen years and I have been part of them all, cheering him on. Most children start off counting in kindergarten or preschool but I remember only counting my brother’s seizures. My cousin and I would sit and count and see how high we could go but often times we stopped in the hundreds. Eventually I grew to understand what seizures were and why it caused my mother and father so much pain to look at, but as any parent, they hid their pain well. Seizures slowly became everyday life and perhaps easier to deal with as I got older, until of course, he began having more. In fact, I remember at one point, when they were really bad, medication wasn’t working and the nurses had to list them as uncountable on their write up sheets within the first hour of their shifts. I found my mother in her room, sobbing, and I hugged her asking what was wrong. It’s impossible to get the look of her face out of my mind when she said “I just want them to stop. Just for an hour or so, just so he can sleep, I want them to stop.” No teenager wants to see that; their hero defeated in that way, but at that moment I felt like all of my heroes were, all because of seizures. There was a hopelessness we all shared and at random intervals we all feel again when that new med we prayed would work turned out to be not as much of a saving grace as expected.

My family and I collectively look for a new hope day in and day out because we cannot give up. If my friends' siblings can run around and play and sing the least I can do is make sure my brother can go a day without seizures. A few months back I was sitting at home, searching the web for a new medication. At seventeen years old. I know this life style is hard to relate to and I don’t expect you to get it. I expect you to take into consideration the fact that you will never get it. Take into consideration that this is a life that only we know best. That’s okay, we’re not asking you to get it. We’re just asking you to say yes. Our Angels need this, now more than ever. Please do not deny us that right to give our siblings, children, and loved ones the ability to be seizure free.  Please support SB 1182.

https://www.youtube.com/watch?v=FMTkg5TzVO8


Update March, 2014

The new year started with Ryan's seizures on the increase. As most parents know with children with epilepsy. We look for illness first, I'm not saying we hope for illness in our child but that we know that could be the answer to why our child's seizures doubled in numbers. The one thing we don't want is to learn that the new medication is already not working and it's now time to begin raising the dose. We started Vimpat last May to help with Ryan's cluster seizures. In the first weeks of January, 2014, he was now having at least one hour long cluster per day that was uncountable and another 50 in an 8 hour period. So well over 100 tonic clonic, simple partial, myoclonic, and complex partial seizures per day plus uncountable clusters. He wasn't sleeping at night because he was waking up clustering. So on January 31, 2014 we agreed to raise the Vimpat at bedtime to 200mg. Well the seizures stopped for five days!! But that is because Ryan slept for FIVE days! There was no therapy, no watching TV. No interaction at all because he was completely SNOWED!! He then woke up. We of course did not raise the morning dose as ordered by his doctor. And the seizures are back as bad as before we raised the Vimpat. In fact on Feb. 25, 2014 he had 124 seizures in 8 hours.

Wednesday, March 19, 2014

Hannah





Hannah is a 10-year-old little girl with intractable epilepsy. Hannah’s diagnosis is currently unknown. She had her first seizure at 4 months old. Over the years, Hannah has developed various types of seizures. She currently has at least 100 seizures a week despite daily seizure medication. There have been many times where she has had at least 300 seizures a day. She is developmentally delayed, non-verbal, and not potty trained as a result of her daily seizures. Hannah no longer smiles or laughs, she is lethargic, extremely unbalanced, uncoordinated and sad as a result of the side effects from the use of daily seizure medication and weekly use of emergency medication. Despite trying 18 different seizure medications, the Ketogenic Diet and Vagus Nerve Stimulator implant, we have yet to gain seizure control. Hannah no longer enjoys life as she used to. Her quality of life has become very poor. She used to run around, climb, jump, laugh, feed herself, ride her bike, jump on her trampoline, and SMILE. Each day Hannah digresses even more. Her stability is so poor that someone has to hold her hand everywhere she walks.

Update March, 2014:

We never know how many seizures Hannah will encounter each day...anywhere from 10 to a few hundred. Within a 48 hour period in February, she was given 6 doses of Versed (rescue med).  We are leaning towards this being hormonal as the timing is comparable to status epilepticus that happened on January 28, when she was life-flighted to Hershey Medical Center.



Hannah was put on a gluten and casein free diet the second week in February, along with avoiding any dyes, consuming all organic fruits, veggies and meats, zinc, omega fish oil, magnesium, and a multivitamin. We are very hopeful this will improve Hannah’s condition. 

She is currently taking the following anti-epileptic medications: Lamictal, Topamax and APO Clobazam. Hannah was weaned off of Keppra which took around 6 months to do.  Her last dose was 1/6/14. 

Please help Hannah gain her quality of life back!

Follow Hannah's life story at Hannahnator

Tuesday, March 18, 2014

Joe Boots

Hello, My name is Joe Mirt, but everyone calls me Joe Boots.

I testified my case at the capital at the SB 1182 Compassionate Care Act Hearing. It was at this moment I was able to voice my opinion on several issues affecting me and 1000's of other vets in our great commonwealth. 

It was quite a therapeutic event to be honest. Having my voice heard by the lawmakers was something I never thought I would be able to do, let alone it having to do with Medicinal Marijuana.

Being an Iraq War Veteran and almost an 10 year sufferer of an undiagnosed Stress Disorder, which turned into Remitting/Relapsing Multiple Sclerosis, I am very much in favor of Medical Marijuana as an option. That is an important word here : OPTION.  Just because Medical Marijuana would be an option for SOME people, it doesn't mean its the choice for ALL people.  Some people may not want to give this treatment route a try, and that's O.K..

This is America, this is the place for freedom? It doesn't really seem like it when I am forced to rely on prescription medication that makes me lose my mind at the cost of a "drug's" legality.
My best friend of 15 years is going through his 2nd bout with Leukemia in 2 years. He is receiving stronger, more deadly chemotherapy, and there is an option in Cannabis Oil Treatment which has shown very positive results, specifically RSO * google it * .

Thank you for taking the time to read a little about my situation and thoughts.
-JB

Click here to read Joe's hearing testimony

Follow Boots Print Crew

Sunday, March 16, 2014

Charlee's Law

Days after Charlee’s Law passes, Charlee Nelson dies at age 6





With grace and determination 6 year old Charlee Nelson's family brought the Utah legislature to its feet this week in an unprecedented and practically unanimous vote in the house to approve a Cannabis extract bill. Her family knew it was too late for this bill to help Charlee but they fought on anyway in hopes that other children could have a brighter future. 

This story is a stark reminder of the real people that are affected by the delay in our own legislature. We need to move forward and stop allowing lives to be lost while we gather more information on a plant that has been studied and used for decades. 

Our thoughts and prayers as a community go out to the Nelson family today.


Saturday, March 15, 2014

Syndey

Sydney Michaels lives in Southwestern Pennsylvania. She had her first seizure just days before she turned three months old. That seizure lasted well over 20 minutes. Within weeks, her seizures rapidly increased in number, frequency, and length. Multiple drugs & combinations of drugs were attempted and failed. New seizure types continually emerged. No answers were given as to why the seizures were occurring, only that she would probably grow out of them. Everything seemed to trigger seizures in Sydney…light, water, sound, touch, excitement, movement, etc… Sydney eventually reached a point where she was having thousands of seizures daily with three to five general tonic-clonic seizures weekly, most of which required Emergency Room visits. The decision was finally made to try the Ketogenic diet with then 10 month old Sydney. There was vast improvement with the diet even though it didn’t completely remove all her seizures. Finally, at 11 months of age, the answer was found on a DNA test. Sydney was diagnosed with Dravet Syndrome (Severe Myoclonic Epilepsy of Infancy), which occurs when a mutation takes place on SCN1a gene. There is no cure, and she will never outgrow this catastrophic epileptic condition. Dravet Syndrome is epilepsy on a scale that people cannot even imagine!

https://www.youtube.com/watch?v=Udqukcrg6E4


Sydney
Now, Sydney is four years old. Her seizures continue because Dravet Syndrome is typically not well controlled through medication. She is on three antiepileptic drugs daily, plus two other emergency antiepileptic drugs for longer seizures to be used as needed. She is on eight other daily supplements, most of which are required to keep her on her Ketogenic diet. Sydney also eye patches to help control her seizures. She is developmentally delayed to a level of 24-28 months. A good day for Sydney would be 30-50 seizures; on a bad day, her seizures can be well into the thousands! High CBD/low THC medical Marijuana is proving to be very effective in the lives of many Dravet children across our country and around the world. Sydney’s epileptologist at Chicago Children’s Hospital specializes in Dravet Syndrome, and she believes that Sydney would be an excellent candidate to try high CBD MMJ. Please help us improve the quality of Sydney’s life and get better seizure control by allowing us the opportunity to try this edible form of MMJ!

To learn more about Sydney, visit her website www.sydneyagainstdravet.org

Update March, 2014

Since the senate hearing for SB1182 Sydney has had 3000+ seizures every week. She has had two status epilepticus seizures - one of which was the scariest we have ever had because Sydney stopped breathing for about 3 minutes.  We have had to call 911 twice. We have been through multiple nights of seizures occurring all night long. Three times, my heart has stopped in the middle of the night because I would jerk awake thinking Sydney was dead beside me because she felt so cold and I couldn't feel her breathing at first. With seizures being so bad at night now, she has slept in our bed every night since the hearing, which means little restful sleep for any of us. We have had to administer 17 doses of emergency rescue drugs.



UPDATE October 20, 2014


http://www.heraldstandard.com/video-saving-sydney/html_f9ca3965-12fc-59f0-a54f-f7239e02d4bd.html

"She lost her smile," Julie Michaels recounts the days after her daughter, Sydney, began having seizures. Sydney, now 5, has been on numerous medications all in an effort to curb the hundreds of seizures she experiences each day. Julie was instrumental in gathering fellow parents in PA to help lobby for what could possibly be the only medicine left for their very ill children. Please watch this short documentary, from the Herald Standard, chronicling the Michaels Family's journey to legalize Medical Cannabis in PA.


Friday, March 14, 2014

Jackson








Jack's life changed a week after his 5th birthday when he was rushed to Hershey Medical center after having a seizure on our bedroom floor. Our previously healthy boy went in to “Status” basically one long seizure that medications couldn’t stop or control…He spent 3 months in the PICU at Hershey med (7 weeks in a pentobarbital coma). During that time doctors tried 10 different seizure meds and combinations of them, IVIG, Steroids, the ketogenic diet…yet he continued to have seizure daily. He was eventually diagnosed as having FIRES (a devastating pediatric epilepsy). Jackson is currently on 4 seizure meds (2 of them Benzodiazapines), he has 2 rescue medications, the Ketogenic Diet and has to wear an oxygen saturation monitor overnight to alert us to seizure activity. The seizures damaged Jacks brain so much that he functions at an 18-month age level and is nonverbal. Our neurologist feels that the medications he is taking in such large doses could also be contributing to his cognition difficulty.

We continue to have hope that Jackson will improve and take baby steps forward so he can live the best life he is able. Upon last check, Jack's liver enzymes were raised and his doctor was concerned one of his primary medications is causing problems…when we tried to lower the medication Jack went into a seizure cluster we didn’t know if he would come out of so the medication remains and we are keeping a close eye on his liver. Unfortunately this information is pushing us to look for alternatives and CBD came up. Our neurologist said that if it was legal in PA he would put Jack on it in a heartbeat. This is a conversation we should be having with our doctor…not with lawmakers. Jackson needs this medication so he can live.


Update March, 2014:

Since the committee hearing on SB1182, Jackson has suffered at least 15 tonic clonic seizures. One episode lasted so long (over 15 minutes) that we had to call an ambulance after administering his rescue medication. Jack had extremely labored breathing during this episode and it was terrifying for his twin brother who was home at the time. Jack has missed 9 days of school in the past six weeks due to seizure clusters. He fell in the driveway and hit his head while waiting for the school bus during a drop seizure. During a recent visit with Jack's neurologist we reviewed the results of an ambulatory EEG done earlier this month, it is decidedly the same or worse from the last EEG even after the addition of two new medications (Onfi and Vimpat). We have begun a taper of Dilantin (another one of his 5 medications) as Jack's liver enzymes and continued problems with cognition are concerning our neurologist. The last time we tried to taper this medication was when Jack suffered the seizure that took away his ability to speak. We have also started to look into and try alternative (legal) medications such as Fish oil, vitamin B6 and Frankincense Oil. We are considering starting Jackson on an Alzheimer’s medication, at his neurologist's suggestion, to help with his continued cognition delay. At his next appointment (if the Dilantin taper goes well) we will schedule a VEEG to help us decide if Jackson is now a candidate for brain surgery (he was not a candidate previously due to the erratic nature of his epilepsy.)

-Cara Salemme 

Gramma's 4 Cannabis

Don't mess with Gramma!

Thursday, March 13, 2014

Calyn


I was diagnosed with epilepsy when I was one. Doctors had put me on many different prescriptions to try to cure my diagnoses. Through all medications I would still have at least 10-15 seizures per day. As I grew older, I was not allowed to work, drive, or maintain a normal life. I had almost died from having a seizure while walking down the stairs, crossing the street, and riding my bike. Thankfully there was always people around to save me when it happened.

When I was 17 I experimented, as most children do. The difference is, I noticed that the day I smoked, I didn't have a seizure. I had decided to study myself and discontinued taking my medications and continue smoking marijuana. It has been 8 years now and I have only had 2 seizures since then.

Unfortunately I have stopped smoking because I nurse my 4-month-old baby girl and I don't want to risk losing her. I have started to feel the awkwardness in my brain like I used to when I had seizures, but until it's legal I can't go back to managing my illness as long as I'm nursing.

To further prove I'm not just a "stoner". I have graduated college with a 4.0 GPA in the medical field, I am a working single mom, and I also raise my 10yr old little sister.

Luke Shultz

My name is Luke R. Shultz. I am a 51-year-old life-long resident of PA. In my early teens I developed degenerative disc disease in my lower back, which got progressively worse with age. Certain activities aggravated the condition and I had to give up sports and other interests in school and beyond as I entered young adulthood. I had used cannabis in high school and college but stopped when I got married and started a family. It was at that point that I requested something from my doctors to help control my back pain. I didn't realize it at the time, but I was self-medicating with cannabis and controlling my pain to a manageable level.

As my back problems continued to get worse, I was prescribed back braces, physical therapy, acupuncture, spinal injections and other procedures, external stimulators, and a host of other traditional and non-traditional therapies. I was also given more and stronger pharmaceutical medications. I was advised to delay spinal surgery for as long as possible.

I experienced several bouts of seriously debilitating flair-ups of muscle spasms and back pain during my early 30's, which caused me to miss months of work. When I was 38 I had a spinal fusion performed on one level of my lower spine. It failed to correct the problem or offer relief and I was left with various disabilities and chronic pain. I could no longer work and had to retire on disability. During and after two and a half years of physical therapy I tried essentially every additional treatment and therapy available to curb my pain or heal my back that I hadn't previously tried. Only pharmaceutical medications worked to lessen my pain and allow me to care for myself and pursue a few interests.

For the last 13 years I've been prescribed morphine, oxycodone, two anti-inflammatories (at max dosage), and a muscle relaxant. I also find relief using (over the counter) glucosamine sulfate and a medicated ointment that contains small amounts of the cannabinoid CBD (cannabidiol). Understand that if I were denied my pain medications, or something/any thing to control the pain, I would resort to suicide. Please understand that I am not suicidal and do not wish to die. But the attenuated pain would be more than I could bear.

As much as I need the prescribed medications to survive, I detest taking them. They cause several undesirable side effects, they do damage to my body, and they could kill me. I would strongly desire the opportunity to use cannabis to control my pain and possibly heal my back. Among many other beneficial qualities, cannabis has been shown to posses anti-inflammatory, anti-spasmodic and pain control properties. There is increasing scientific evidence suggesting that cannabis and cannabinoid based medications can enhance the analgesic activity of opioids. Anecdotal evidence is filled with accounts of patients greatly reducing or eliminating their opioid use. The essential oil of cannabis has also been anecdotally found to reduce scar tissue and regenerate damaged soft tissue, which could provide real healing in my back, where none has previously occurred.

As much as I'd like to, I currently do not use cannabis. My pain management doctor tests for illicit drug use in his patients, and if found, the patient is removed from his practice. I've found this to be common practice among pain management specialists. I understand their reasoning. If found to be prescribing narcotics to people who use illicit drug, a pain management doctor would at least risk losing his medical license, if not face criminal charges. The sad truth of my situation, and that of so many others who suffer in PA, is that we are kept from using a very beneficial plant or the medicine made from it because of unjust laws. Those who desire to use cannabis to simply relax or get high are doing so in spite of the law. Laws are supposed to prevent harm. Thec urrent laws on cannabis are causing harm and are otherwise ineffective. For myself and so many others who are needlessly suffering in PA, I ask that you do all you can to support and pass into law Senate Bill 1182.

Tuesday, March 4, 2014

Upadate on Jackson


Since the committee hearing on SB1182, Jackson has suffered at least 15 tonic clonic seizures. One episode lasted so long (over 15 minutes) that we had to call an ambulance after administering his rescue medication. Jack had extremely labored breathing during this episode and it was terrifying for his twin brother who was home at the time. Jack has missed 9 days of school in the past six weeks due to seizure clusters. He fell in the driveway and hit his head while waiting for the school bus during a drop seizure just today. During a recent visit with Jacks neurologist we reviewed the results of an ambulatory EEG done earlier this month, it is decidedly the same or worse from the last EEG even after the addition of two new medications (Onfi and Vimpat). We have begun a taper of Dilantin (another one of his 5 medications) as Jacks liver enzymes and continued problems with cognition are concerning our neurologist. The last time we tried to taper this medication is when Jack suffered the seizure that took away his ability to speak. We have also started to look into and try alternative (legal) medications Fish oil, vitamin B6 and Frankincense Oil. We are considering starting Jackson on an Alzheimer’s medication at his neurologists suggestion to help with his continued cognition delay. At his next appointment (if the Dilantin taper goes well) we will schedule a VEEG to help us decide if Jackson is now a candidate for brain surgery (he was not a candidate previously due to the erratic nature of his epilepsy.)


Monday, March 3, 2014

How Can We Help?

Join our fight - sign petitions, call your legislators, e-mail politicians, call or write the committee members and tell them you support the legalization of medical cannabis...




Saturday, March 1, 2014

Jump Start

Welcome to Campaign for Compassion! We are really excited to finally have our website started! It is our goal to be a resource for fellow patients, caretakers and even our elected officials as they consider sponsoring SB1182. Check back soon for more information!