Tyler's Palliative Care Fund

This fund is to help raise money towards a new palliative treatment to help reduce Tyler's seizure activity. Tyler suffers from Lennox Gastaut syndrome (LGS).

Tyler is my son and a 13 yr old boy who was diganosed with LSG in 2007. Prior to being diganosed, Tyler has suffered from seizures since he was 6 months old. Tyler is on 3 medications and also has a Vagus nerve stimulator (VNS) Vagus nerve stimulation is a procedure that stimulates the vagus nerve with electrical impulses. Vagus nerve stimulation can be used to treat epilepsy when other treatments haven't worked. Tyler still seems to manage to have seizures daily.

Our goal is to get Tyler off of all his pharmacutical drugs. We have tried this in the past and haven't been very sucessful. Now we have found through research that medical marijuana has been proven to reduce seizures and make you able to come off of pharmacutical medications.

Please help us make this possible so Tyler will no longer have to suffer from seizures. We appreciate and thank you for your support.

Tyler update:

 

We gave Tyler a break from doctor’s appointments and hospital stays.  We slowly weaned him off of Benzal since it was ineffective.  We utilized Tyler’s VNS as his primary source of seizure management.  Things were going okay for Tyler, but he was still having long, frequent seizures.  We had good days and we had bad days.  On the bad days Tyler would have seizures up to 10 minutes long.  As Tyler’s seizures progressed, I found myself not knowing what to do next, and I decided it was time for another opinion on brain surgery.  We saw a new doctor from Morristown Medical Center along with a consult with a brain surgeon.  The brain surgeon referred us to the new neurologist in the hospital who would complete some new testing.  Tyler was placed in Morristown Medical Center for video EEG testing, which did not go well.  The first night Tyler had ripped all of the EEG leads off of his head before the morning.  The leads were reattached and this time, Tyler had to wear a helmet.  Six hours into the EEG, a three day old, post-op screaming infant was placed in our room.  The poor baby screamed for hours straight. While the baby was screaming, on the third night of our stay, Tyler jumped out of bed at 4am toward me, falling onto the floor.  It was a harrowing moment, but we were able to pick Tyler up, uninjured, and place him back in the bed.  After the EEG testing, we had a follow up appointment with this new neurologist. At this visit, we were faced with the challenge of the original doctor’s partner, a neurologist we had never met before who handles all the outpatient visits.   We talked about increasing Lamictal and getting bloodwork to start Tyler on a ketogenic diet.  We went home and slowly began increasing the Lamictal.  Tyler got the bloodwork done and back to the neuro we went.  The neurologist had no recollection of Tyler’s first visit to see her or of our conversations about medication changes and the ketogenic diet.  She quickly sat me down and started speaking about brain surgery, wanting to complete a corpus callosum (a surgery in which they disconnect the brain’s cerebral hemispheres).  This is what the last brain surgeon suggested and is absolutely not something I was comfortable putting my son through.  I became very upset because Dr. Sousa was nice enough to refer me to this new neurologist to get a second opinion since he didn’t have privileges at Morristown Medical Center.  This doctor actually told me that she was certain I must have too much on my mind because she was certain that she had never met Tyler before.  After I reminded her that she had actually already changed the Lamictal orders, she proceeded to open the chart and found the copy of the prescription increasing Tyler’s medications and started to blame her front desk staff that there was oversight.  I proceeded to tell her that this was completely unprofessional, and she proceeded to refer me back to Dr. Sousa. At this point, I let her know that we were not interested in surgery and that I would schedule Tyler’s next appointment with Dr. Sousa. 

            At my next visit with Dr. Sousa I explained what had happened with the previous doctor.  He apologized profusely for her poor bedside manner and unprofessional behavior.  This was when I decided to ask Dr. Sousa his opinion on medical marijuana.  He said we could talk more about this on our next visit.  I went home and started researching.  I had been made aware of some success stories of seizure patients being treated with medical marijuana in the past, and wanted to give Tyler this opportunity to benefit from it, but first I had to be sure. I continued to research medical marijuana and spoke with Dr. Sousa several times throughout 2013.  At the end of summer 2013, I watched a documentary called “Weed” with Dr. Sanjay Gupta.  I was on the verge of tears while watching.  My heart ached for this family, and the similarities in our lives.  This child – Charlotte Figi – had Dravet syndrome, another debilitating seizure disorder that is very similar to Lennox Gastaut.

 This documentary was the last bit of evidence I needed that this was the best choice for Tyler.  I had made up my mind that he needed to have these benefits and nothing would stop my pursuit of helping my son.  I obtained a medical marijuana doctor within weeks and proceeded with doctor visits.  As some of you reading this may know, insurance does not cover palliative treatments, which medical marijuana falls under.  We had to have a total of four visits, which were several hundred dollars each time we went.  Thank goodness for Tyler’s gofundme.com page – www.GoFundMe.com/3ritr4 - or there is no way we would have been able to afford these new and promising treatments for Tyler.  I also had to obtain a phycologist, a pediatrician who was a medical marijuana supporter (Dr. Sousa) and a fingerprint and background check.  This process took roughly six months from our first doctor visit until I was able to obtain medical marijuana for Tyler. 

By law, I was able to purchase two ounces of medical marijuana per month in its raw form, which is anywhere from $600-$800.  I did not know how to give Tyler the marijuana so I went to a smoke shop with the hope that I could use a vaporizer.  The shop owner assured me that this would be possible, and I was so excited for Tyler to begin treatments that day.  Once I got home, I realized that Tyler would have to perform a sucking motion in order to get the medical marijuana from the vaporizer; a motion that Tyler is unable to perform.  I quickly panicked and I was once again left feeling hopeless.  After my moments of hopelessness, it dawned on me that there was a way for us to get Tyler the treatments he needed.  I had a CPR mask in the closet and knew that it was my job as Tyler’s mother to make sure I could help him.  I used to CPR mask to transfer the smoke to Tyler.  After all my research, I knew that this was the most natural and effective way for Tyler to reap the benefits of medical marijuana. 

 

After this first dose, Tyler received a dose every 24 hours.  Tyler immediately went an entire 48 hours seizure free for the first time in his life.  This was the first medication in thirteen years that had ever been so successful in treating Tyler’s seizures. Words can’t described how this made me feel. Being able to help my son for the 1st time since he was 6 months old. I made many dosing adjustments as I figured out what worked best to limit Tyler’s seizure activity.  Within a few months, Tyler was much more aware, alert, and oriented.  His physical improvements and the decline in his seizure activity were amazing.  His seizure activity used to be 8 minutes per day, frequently throughout the day and was now limited to short 3-10 seconds seizures, and he would often go 24-48 hours without any seizures.  It was becoming increasingly difficult to give Tyler treatments through the CPR masks. Because at he was improving, Tyler was actively pushing me away, holding his breath, and other natural reactions of a 13 year old boy whose mother isn’t giving them enough space.  I found a group for parents of children who use medical marijuana.  Through this group, I discovered what a Magical Butter Machine was, and quickly learned how to become a chemist.  I placed half an ounce of medical marijuana and some melted coconut oil into the Magical Butter Machine and let it cook for an hour at 160 degrees, F.  After It was cooked, I would filter it and seal it in a mason jar. I now had medical marijuana oil that I could easily treat my son with by putting it through his feeding tube.  This seemed to be the perfect solution! I was no longer annoying him by being in his personal space, and he was still able to get the treatments that were reducing his seizure activity by an amount I had never thought possible to happen so quickly.  After a few dosing adjustments, Tyler was so much more active and alert and on the road to recovery. 

Most people don’t know enough about marijuana based on what the government puts out and labels it as a Schedule 1 drug – in the same category as heroine and methamphetamines.   Cannabis (aka Medical Marijuana) is broken into two components: CBD and THC.  THC is what gives you a head high, and CBD is what gives you the calming effect. Cannabis comes in many different strands.  High CBD strands have been proven to cure epilepsy and 26 other diseases.  I made many trips to the medical marijuana dispensary and learned more about each of the different cannabis strands each time I went.  Slowly, Tyler’s seizure activity was getting more frequent and his seizures were getting longer. I mentioned to the dispensary that Tyler was not only a seizure patient, but also going through puberty.  The dispensary explained that many families in a similar situation to mine were giving their children strains with high CBD, and also a low, but slightly higher THC level.  I obtained this new strand, and Tyler’s long, debilitating seizures stopped again! Tyler’s nursing staff and I quickly noticed how much better he was getting. It was such a blessing to see my son being so into his toys and physically doing so much better than he was back in 2010. I thought ok we are going in the right direction.

In the beginning of February 2015, while we were at a visit with Dr. Sousa, Tyler’s Vagal Nerve Stimulator (VNS) read ‘low battery’.  Dr. Sousa said we needed surgery ASAP to replace the seven year old battery in Tyler’s VNS.  Tyler’s seizures were getting worse again and getting longer within days of receiving this news.  It’s been three weeks since the VNS read ‘low battery’, and while Tyler has been waiting to get surgery I have had to increase his medical marijuana dosage to control his seizures since the VNS is not working to its full capacity.  I am thankful that it only took me a year to find a strand that really truly works for my son.  I have high hopes and faith that replacing his VNS battery will bring him closer to achieving a seizure free life.  I will continue with medical marijuana to try to obtain seizure freedom and eventually take my son off of all pharmaceutical medications.  I can only pray to god that Tyler comes through his surgery with no complications and we continue on our road to success.  To whom ever is reading this please do what you can to make people aware of Lennox Gastaut syndrome a form of epilepsy. Once again this is a 1 in a million debilitating seizure disorder. Thank you to everyone that has supported us along the way, and for those of you who have read & shared Tyler’s story.
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Organizer

Nancy Kirwin 
Organizer
Clifton, NJ
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