Tag Archives: Epilepsy

I disappeared because of weed.

Shameless clickbait title, but it’s technically true.

There are actually two major reasons I’ve been pretty quiet on the blog for the past year. 1. Burnout. I think I just hit a wall talking about TSC and I completely ran out of motivation. 2. Even when I did feel like posting I couldn’t talk about one of the most significant aspects of what was going on with Connor, which was that he was enrolled in an Epidiolex trial. I was not allowed to discuss it online while in the study.

In Venice, FL to visit Grandma Judy and Grandpa John.
In Venice, FL to visit Grandma Judy and Grandpa John.

I’m still dealing with intermittent motivation, but the other issue has been resolved.

Connor was fortunate to be included in an Epidolex trial last year by his neurologist. We were shocked to get in when so many were turned down. Epidiolex is manufactured by GW Pharma by extracting CBD from the cannabis plant. Unsurprisingly, this drug is pretty controversial in the cannabis world. Most people who are using medical marijuana or in the cannabis world are not thrilled with a pharmaceutical company getting involved. I completely understand this, feel similarly and get why this is problematic, nonetheless, obtaining regular cannabis in every state was/is an issue and we were accepted around the time some companies were finally able to use a federal hemp law to start shipping cannabis oil with THC levels under 1 percent. It was still the same stuff that used to be illegal; they were just able to get it reclassified as hemp rather than cannabis because of the low THC levels. Right after we started, Georgia finally passed an immunity law protecting people for having certain types of medical cannabis for certain conditions if your doctor would sign off and you registered for a card from the state.  So the timing was weird. All that time with nothing, and then both options fell into our laps at almost the same time. We decided to try Epidiolex as it would present no legal issues with travel and other logistics (and I know low THC oil under 1 percent is in a grey area and theoretically okay in any state, but for those of us in Nathan Deal country and other states run by people with heads up their asses, nothing is guaranteed. For example, we aren’t allowed to administer the oil in the hospital without the card).

Meeting a manatee at Mote Marine in Sarasota.
Meeting a manatee at Mote Marine in Sarasota.

It was utterly pathetic to learn just how many parents were ready to attack other parents for making the decision to enroll in studies. Parents that seemed to forget that not so long ago, pharmaceuticals were their only option, too. So for those of you that feel the incessant need in the various cannabis “support” groups to do nothing but viciously attack everyone who isn’t using the strain you approve of, you can seriously kiss my ass. There is a huge difference between explaining why you feel one type is preferable and making a parent who is just asking questions in order to learn feel like an idiot because you are on a power trip. At any rate, as you’ve likely guessed, we are no longer in the study.

Captivated by the waves!
Captivated by the waves!

The first five months were fantastic. We went from 2-3 seizures a day to up to 12 days seizure-free at a time. His cognitive skills improved, as did his physical skills. He learned how to use picture cards around the house to tell us what he wanted in a day. Unfortunately, we had to take most of them down after a few weeks when he began to take pleasure in making us jump just because he could. He went from using them effectively to thinking it was funny just to make us do stuff. He also started tackling hills on our walks like it was nobody’s business. Unfortunately, in mid-July, things went to hell. He was worse than he’d ever been and it wasn’t even that his typical seizures returned, so much as he seemed to be having a lot of subclinical activity and was a blob on the couch. He’d fall all the time and could barely walk. It was a nightmare 2.5 months. This contributed to my lack of motivation on this blog and I also fell off my other project, which I plan to get back to soon. Since I was still following many cannabis groups to see how people were using whole plant oils made in legal states, I came to the conclusion that his CBD dose was too high, and as soon as we lowered it, he began to improve. Things went okay for a couple more months, but when we lost control again, we decided to leave the trial and start Haleigh’s Hope, which we order from Colorado. It’s made by Jason Cranford of the Flowering Hope Foundation. We chose it because we know several people in Georgia having success with it, including Haleigh Cox for whom it is named.

At Touch-A-Truck in Kennesaw.
At Touch-A-Truck in Kennesaw.

Right off the bat with the switch, whatever subclinical activity might have been going on started getting better. He was walking again within a week. The situation was much improved from months of being so floppy he couldn’t function and going to school many days in his chair. Seizures in general have still been a bit of a roller coaster, though not to the degree that he’s unfunctional, but the issue we are having appears to be that since he just started school, he’s catching every germ that comes his way. The slightest sniffly nose means lots of seizures, usually starting days before symptoms even show up. It has been very frustrating. However, when we are able to keep him healthy for a couple weeks at a time, he does very well. Now that we are sliding into spring, I’m hoping things will even out and we will see sustained seizure reduction.

But can I just tell you about his eye contact? That has become phenomenal since starting HH. Sometimes I feel like he’s practically challenging me to a staring contest. After a couple months, it started to dawn on me that his stimming had decreased as well.

IMG_8917

I have high hopes for the incoming warm weather.

I mentioned in my last post that just before I headed off to a blogging conference, Connor and Chris were getting sick. I returned home to Connor still exhibiting cold symptoms, and Chris the same. Though when Chris started having hot and cold flashes, I became suspicious that something else was at play. Connor slowly seemed to get worse and we celebrated his fourth birthday by having to give him two Diastat doses in one day, 12 hours apart for the first time ever. The next day he spiked a fever and had quit eating and drinking so we went to the ER where he was diagnosed with the flu. An IV perked him up to his old self so we went home, but he reverted the next day and we were admitted from Wednesday-Sunday. He developed pneumonia on top of the flu and almost ended up in ICU on Friday when he couldn’t keep his oxygen levels up. Thankfully, the next day he began to recover.

IMG_8868

Feeling better finally!
Feeling better finally!

So here’s to hoping we can make it to and through summer vacation without any further drama!

Advertisements

Governor Deal plans to block medical cannabis expansion.

I’m experiencing a serious feeling of deja vu. Except last year Governor Nathan Deal waited until after Christmas to drop the bomb on the sick and suffering of Georgia, along with their families. Happy holidays, citizens. You don’t matter.

Let’s do a brief recap. In early 2014, a parent lobby rose up, with the help of Rep. Allen Peake of Macon, to try and pass HB 885/Haleigh’s Hope Act to help people with epilepsy access cannabis oil. It was a very limited law, but by the time it hit the floor on the final day of session, it had been whittled down to nothing but immunity for possession of the oil. Political games were played, namely by Sen. Renee Unterman of Buford and Lt. Gov. Casey Cagle (who has his sights set on the Governor’s seat), and the bill died, much to the devastation of the families. As the clock ticked toward midnight, several families ran to Deal’s office to beg him to intervene, to demand that the bill get a vote. He wouldn’t come out of his office. More families moved to Colorado in desperation. And three children I knew through this effort would pass away as the fight continued.

Over the course of the year, Peake led a commission to explore the idea further and how to make it work in Georgia. They concluded in December of 2014. Everyone was excited at the prospect of a bill that would include more conditions and allow a higher ratio of THC to CBD  (necessary for many people for whom CBD alone doesn’t cut it). It was also supposed to allow cultivation and growth in the state of Georgia as bringing it over state lines is federally illegal. Before the session even started, Deal made it clear growing was off the table. It was another devastating blow, however, HB 1 did pass with several eligible conditions. Residents could apply for a card that allowed them to possess cannabis oil with up to 5 percent THC.

Let me quickly say, I am for full medical marijuana. Legislators should not be able to dictate what conditions or stages of disease are eligible. They are NOT doctors, except in rare instances. But this is the sad hand we are dealt in Georgia. Too many elected officials that think it is their job to parent rather than represent the will of the people, who are largely in favor of medical cannabis. The goal for 2016 was to hopefully expand conditions and allow growing so that federal law doesn’t have to be broken to obtain it.

The signing of HB1 in 2015 was quite the production with the Governor’s office. He even shed (crocodile) tears as he signed the bill to help the families his staff strategically placed around him for the camera op. It was a performance worthy of an Academy Award.

Over the course of the past year, taxpayers have sponsored another committee to explore options for growing in Georgia. They have not completed their work or presented the final findings to Deal, however, yesterday he came out and said he will not support growing in 2016 either, even though the whole point of the committee he appointed was to make that happen.

He says law enforcement doesn’t want it. Well, last time I checked, that isn’t the branch of government that writes the laws.

He also says that the 300 people who have registered aren’t enough to be worth the cost of the program. Hear that, fellow card holders? Our loved ones aren’t worth it. He fails to recognize that many people can’t register because the restricted legislation doesn’t include their conditions, or if it does, they have to be end stage (yeah, you aren’t dying enough yet), and many need more THC than is allowed by the current law. Several patients are also encountering the issue of their doctor refusing to sign off simply because they oppose the idea or lack education about how it can benefit various conditions.

I find it funny that he considers the cost/benefit ratio not good enough to have in-state grow, but he supported pharmaceutical trials that cost the state an extraordinary amount of money, and have taken forever to benefit anyone at all.

He never intended to listen to either committee. But he was happy to waste your tax money putting on a show of fake compassion.

There are two things I really hate about epilepsy. The first is obviously what it has done and continues to do to my child, even though he has shown extraordinary improvement on CBD oil.

The second is how it has left me feeling about my state and my country. Getting involved in corrupt politics has been so incredibly disheartening. I was happier in the dark, but there is no going back. I just hope there is a light at the end of the tunnel in the form of a majority that can override Deal’s veto. But that road looks a lot like a Georgia road in an episode of The Walking Dead. We need everyone to speak up. Please call and email your state senators, representatives and, of course, the governor. Let him know you are tired of him ignoring the will of the people.

This site will help you find out who your state officials are:

http://openstates.org/find_your_legislator/

Governor Deal, this is just one the many faces you are hurting. Look at him. He is a person. He is a Georgia resident. He is loved. Now do your job.

11755146_10153111510374372_1149720641173987478_n

For more on what happened last year, read this.

 

 

 

For all we have lost, there are great treasures that remain.

Day 29 of Blogging For TSC Awareness

by guest blogger Rebecca Thereault

For all we have lost, there are great treasures that remain.

image-12Tuberous Sclerosis Complex (TSC) hijacked our daughter’s genome. Like the lowliest of thieves, it stole from an innocent baby.  It’s haul?  A base pair on her TSC2 gene on her 16th chromosome, to be exact. Two tiny amino acids that shifted her genetic code and forever hindered her ability to suppress tumor growth in her body.  Funny thief–one that gives more than it takes.  What TSC took has caused tumors to grow in her heart, brain, skin, and kidneys; it has caused epilepsy, heart failure, autism, developmental delay, and more.  It’d be easy to hate such a thief and sometimes I do give in to the loathing. What I have learned, what Kaleigh has taught me in her 5 and a half years, is that for all we have lost, for all that TSC has taken, for every hurdle, for every burden, we have also gained.

Before I go any farther, I need to pause here and clarify my image-14dangerously close to sounding Pollyanna statement that I have gained things from TSC. TSC is a devastating, incurable (currently) disease.  I am not thankful for what it has done to our daughter. It has nearly taken her life on more than one occasion. AND, I have gained things as an individual, we have gained things as a family, that I and we would not have otherwise.  I could write about the seizures, the MRIs, the hospital stays, the therapies, the behaviors, the terror of it all, the need for more research, the scientific advances, or why this disease should matter to you. In some ways those issues are easier to articulate–there is a concreteness. But, when I think of what the presence of TSC in our lives has really meant and truly taught me, I think about the “and” of life. It is the idea that there is no darkness without light, no joy without pain, there are and must be both. Kaleigh and TSC are inexplicably entwined–it is literally weaved through the double helix of her DNA.  AND, she is not TSC.

image-13 I was 29 weeks pregnant when the ultrasound technician said she needed to call down a specialist because there was something wrong with our baby’s heart.  It was the first time we were introduced to TSC.  It was as though a vortex opened and sucked away all our hopes and dreams and left us empty and terrified.  Perspective, and time, have changed these memories for me. I see now the seedlings of “and.”  We were devastated and hopeful.  Terrified and determined.

At the time, it felt like a lie to even smile. I was stymied by the image-15darkness, the anger, the overwhelming devastation.  I told no one at my baby shower, only immediate family knew.  I spent the day opening presents for a child I was told may not survive.  I smiled for the camera as I checked my watch because I had to run back to the hospital to receive the second of two shots intended to develop her lungs and give her more of a fighting chance.  All I was able to focus on was the insincerity of my joy. Now I see this was my first introduction to the “and” of TSC. Both were true.  I was terrified and excited.  I was alone and simultaneously surrounded by love.  This would be our life with Kaleigh and TSC–the presence of two seemingly opposite experiences coexisting.

image-16Kaleigh was born pink and screaming, and it has been one wild ride since.  The overwhelming joy of taking her home matched with the horror of a PICU stay for heart failure.  Over the past five years, we’ve experienced innumerable times when we were faced with two seemingly opposite and incompatible experiences vying for our attention.  It was a struggle for me to find the joy amid so much pain.  What I found is that life is in the balance. It is in the “and.”  If I let my anger at TSC overcome me, then I am blinded to the appreciation, pride, and joy of seeing Kaleigh achieve and progress.  If I succumb to the stress and fall apart after she seizes for two hours straight, I miss her tiny waking first word of “uh-oh.”  If we accept that there is no cure, then we lose hope and the drive to keep raising funds and lobbying for research.

With TSC we have lost much of the simplicity of life, yet have gained a rich complexity.  We have gained the camaraderie of others who walk this journey with us.  My view of life has widened.  When I look at others, I think of the “and.”  I wonder what is behind the anger of that not-so-nice lady in the checkout at the grocery store and I try (some days are easier than others) to offer grace.  The “and” has reverberated through our family. Our son is quick to help other children and befriend those who are often excluded.  At the same time, he has spent many a night crying after nightmares of his sister seizing. My husband and I have worked to raise awareness and fundraise for TSC research.  And we have worried and lamented over the never-ending medical bills.  No where is the “and” more apparent than in Kaleigh.  Her love for life is as palpable as the heartbreaking panic she experiences at the mention of the word doctor.  She is loss and hope personified.

Joy and pain.  Love and hate. Jubilation and sadness.  Dependence and freedom. Trust and betrayal. Jealousy and contentment. Life and death. Fight and acquiescence. These are the lesson I have been gifted. Our life with TSC is heartbreaking and beautiful. Most of all it is a balance–what we have lost AND what we have gained.

image-11

Bailey

Day 13 of Guest Blogging for TSC Awareness

by Becca Patterson  (Greenwood, Mississippi)

My name is Bailey and I am 5 years old. I was diagnosed with TSC when I started having seizures at 5 months. I’ve had almost every type of seizure there is but currently my seizures are under control.

I have tumors & tubers in my brain, small tumors in my kidneys, and every skin abnormality associated with TSC. I am non-verbal, physically and mentally delayed, and autistic.

I am also beautiful, silly, sweet, and a spit-fire. I am TSC.

image1-2

We will never take her smile for granted!

unnamed

Day 11 of Blogging for TSC Awareness

by guest blogger Tanya Sloan-Bates (Athens, Tennessee)

We tried for several years to get pregnant, fertility treatments were our last hope.  Finally, our prayers were answered and God blessed us with our son, Noah; our amazing little man.  We were so excited.  We never thought we would get pregnant without fertility treatments.  However, God had a different plan.  A few years after the birth of Noah, our miracle baby arrived, Molly.  She was a beautiful, healthy baby girl!

When Molly was six and a half months old, we started to notice how she was making peculiar movements.  At this time, my husband was working out of town. Molly began to scream and cry and act as though her stomach hurt.  During this week, we went to the Children’s Hospital twice and her pediatrician’s office three times. Each time the doctors would run a series of tests.  Every time the tests came back normal and nothing was concluded.  We were sent home with various medications for stomach aches.  Yet, I knew something was wrong; something was wrong with my baby and no one would believe me.

unnamed-1

In 2014, on Christmas Eve night, my husband made a comment that I truly believed saved our little girl. He said, “I hope it isn’t neurological.”  We immediately went to the internet and Googled “neurological spasm.”  A list of websites and information appeared before us; some of them videos titled “Infantile spasms, seizures.”  The more we watch and read the more we were convinced this is what our precious daughter was suffering from these vicious spasms.  The suggestions were to see a neurologist as soon as possible. So, the day after Christmas we called her pediatrician. They sent us directly to the Emergency Room. Doctors were finally beginning to listen to us and an EEG was ordered.  It was later confirmed, she was having infantile spasms (seizures) with hypsarrhythmia; a catastrophic form of epilepsy.  She was having up to 300 seizures a day.

From there, we were admitted to Children’s Hospital in Knoxville.unnamed-2 Molly had an MRI scheduled for the following day.  Tubers/tumors were found on her brain. Our sweet baby was diagnosed with Tuberous Sclerosis Complex (TSC).  Our world had been turned upside down for weeks, but now, now there were no words to express our emotions; we were numb.

Molly was put on a medication to help with the seizures and it didn’t work.  We then went to Birmingham and saw a pediatric physician who specialized in TSC.   They placed her on another medication that we had to inject into her through a shot.  While on this medication, Molly lost her sweet and innocent personality.   My seven month old baby no longer engaged with anyone, smiled, or played; instead she was lethargic…my heart was broken!  After time, we found the correct medications and gained control over her seizures.  Molly gained her smile back and started to flourish.  She was seizure free for four months!  I remember driving home one night in July and being so happy and grateful  at how well Molly was doing; how much she had overcome!  Then, that very next day, my fears resurfaced.  Molly began to have complex partial seizures.  It was starting all over again!

Over that past eleven months, Molly tried several different seizure medications. They have helped, but we still do not have complete control over her seizures. Currently, Molly is on four different seizure medications, she has physical therapy, occupational therapy, and speech therapy weekly.

If you look at Molly, you see a beautiful, almost two year-old, red headed toddler.  She is amazing and an inspiration.  Molly’s vocabulary is currently limited; however, she has no problems making her point clear and letting you know what she wants.  Her personality is one of a kind.  She currently has brain, heart, and skin involvement. Although, we don’t know what tomorrow may bring, we are thankful for each second!  We will never take her smile for granted!  Even though Molly may face more challenges and obstacles in life, we will continue to stand by her and help her grow and fight for a cure! Although Molly may have a disability, her disability does not define who she is.

unnamed-3

My New Normal

Evie Cards outfit

Day 9 of of Blogging For TSC Awareness

by guest blogger Jackie Grenia  (St. Louis, Missouri)

For 15 years, my normal consisted of all things BOY.  In 2014, remarried with now a fourth son, and pregnant with a girl, I knew that my normal was going to change significantly. Everleigh Sophia was born on December 5, 2014, after 41 weeks of an uncomplicated pregnancy and about 10 hours of beautiful labor.

This pregnancy, so unexpected, and belated, worried me, but by the time my gorgeous girl appeared, my worry took a backseat to my joy. I was so grateful to have this experience again. Evie arrived into a room full of eager family.  7lb, 5oz with all 10 fingers and all 10 toes.  Perfection!

Everleigh was wonderful and distinct.  Nothing about my experience with her felt normal from day one. My mommy instinct kept telling me that something was “off” but I couldn’t put my finger on it. I’d express my concern to anyone that would listen but kept hearing that I was used to boys and this girl was bound to be different.  She seemed so restless and irritable, so nursing was a challenge to say the least.  She made strange, unfamiliar noises that we jokingly referred to as her “growl”.  She also looked dramatically to the side (first right and then left) & fluttered her eyes often.  We again joked…”she’s a diva”, “already stubborn, refusing to look us in the eye”.  Was this all normal baby stuff? Had it been so long that I’d forgotten?

Evie was nine weeks old and I was unable to shake my unease.  My DSC_0306 (800x536)gut wasn’t just telling me there was a problem, it was screaming at me. No doubt, I was trying everything.  I was a slave to google. I made numerous calls to lactation consultants. I took her for extra visits to her pediatrician. I visited another “holistic” pediatrician some miles away (who performed a frenectomy of her upper lip and tongue in an attempt to improve what might be the cause of her breastfeeding problems). We had multiple pediatric chiropractic appointments (to treat what was believed to be torticollis). Each time, I would be reassured that these were “normal” baby issues and each time I would go home to the continued feeling that we were missing something.  I sat staring at my sweet girl, crying, and that’s when I began putting all of the behaviors together.  I suspected seizures. It took a couple of days to completely convince myself and my husband (who was now getting used to coming home to hear my “freak out” about Evie’s behaviors of the day).

We nervously went to our pediatrician on February 11th, and after she actually witnessed the “behaviors”, we were promptly sent to St. Louis Children’s Hospital.  The ER doctors agreed that it was seizure like activity.  Could she possibly have an infection? I was almost excited. That must be it!  She lives with 4 hygiene deficient boys.  Simple explanation!  An acute infection that has caused some seizures.  We can treat it and move on. The ER staff drew blood, performed a spinal tap, started antibiotics and asked us a thousand questions. They gave her Ativan and almost immediately, the seizures stopped. A CT was suggested just as a precaution. We accompanied her and then waited for answers.

DSCN0036Only moments later, a nice young doctor entered the ER room to tell us that he had preliminary results.  This is when my normal exploded into a thousand pieces. I heard what must be two of the most feared words a parent could hear, brain and tumors.  It all happened so fast. I felt sick, dizzy, confused.  We were told that the tumors were benign and most likely due to a genetic disease. Something like tumerous?  tubulous? scler something??  Evie would be admitted for more testing to confirm. I wasn’t even quite sure what he had said.  He exited the room and I sat dumbfounded.

The next two days were a whirlwind.  Evie had more tests than I’ve had in my 43 years of life. An echocardiogram, EKG, EEG, Brain MRI, Abdominal MRI, and general X-rays. The diagnosis was confirmed.  It was a rare genetic disorder; tuberous sclerosis. We were told that our daughter had “multiple brain tumors…too numerous to count”.  The tests revealed five tumors within her heart, multiple, small tumors in both kidneys, along with the tumors in her brain. We were given some informational pamphlets and told that there are varying degrees of the disease and there is no way of knowing how Evie will be affected. Our job was to go home and give her a daily anti-seizure medication and monitor her. Seriously? Monitor what? I wanted to ask what to expect, but they had already said there is no way of knowing. I glanced at the information but honestly didn’t want to know the possibilities.  What’s the point?  I didn’t want to spend any time worrying about what might be.

We went home and it was like a miracle.  Our irritable, uncomfortable baby was now much calmer.  The seizures were gone and nursing was improving.  She still had her quirks, some rigidness, and a left gaze, but I could deal with that.  It wasn’t so bad.  I decided that everything was going to be fine, if anything, better than before her diagnosis. I went into a state of blissful denial.

And then it began again.  Two weeks later, the seizures returned.  It felt like a slap in the face. This was followed by more doctor visits, an ER visit, med adjustments, and finally another hospitalization before the seizures finally stopped. My bliss disappeared. Maybe it was time to educate myself.

I obviously hope for a mild case for Evie.  She’s had more seizures, but I am now educated and somewhat prepared.  I will not allow TSC to take another cheap shot at me. I’m smarter and stronger. I’m tapping into all of the resources available and going to bed each night knowing that I’m doing everything that I can. I’m definitely “on the lookout” which no doubt makes me seem a bit more nervous than usual.  But, I’m also much more aware of the beautiful moments in each day. My eyes are opened wider. My love feels deeper. I’d like to think that I’m becoming a better mom to all of my children.

I never would have thought that my normal would include a seizure diary, daily medications, weekly therapy appointments and discussions of MRI results.  Of course, I never expected to see my boys nuzzling with their baby sister or hear them talk sweetly to her while she admiringly coos. I feel blessed to experience this new normal.

DSC_0177

He is our superhero.

Day 8 of Guest Blogging for TSC Awareness

by guest blogger Melissa Courtright  (Caldwell, Idaho)

IMG_20141108_131428We have two children.  An older daughter Robin who is 11 (non TS), and Remy, who just turned three. He started having strange episodes at 4 months old that were later identified as seizures. He was officially diagnosed at 10 months old after having up to 14 seizures a day, and they did an MRI and found multiple tubers — over seven so far. They then did an echo and found he had three heart tumors, and has multiple ash leaf spots on his skin. He started having a speech regression at age 2 and we are working with speech therapy to help him. He also has some behavioral outbursts of frustration, maybe because his verbal communication is difficult, or his TS in general, or because, well, he’s just 3 LOL.

Remy is a loving sweet boy. He is empathetic to others’ feelings; he will cry at sad moments in movies, and cry along when others are sad. Yet he will still smack someone if they make him mad, but he will feel bad and give hugs. He is super smart, can do most complicated tasks and things at and above his age level. He plays most things safe, but is quite a fearless daredevil when it comes to physical activity. He is a ball of energetic energy, although his seizure meds make him easily tired, need breaks during the day and a take a long nap. He is a strong little man and will conquer his condition; he is our superhero.

super remy