Tag Archives: Epileptic seizure

Seizure Hunter — The Elusive Prey

Seizures are really obvious. I couldn’t possibly miss one. We’ve all seen them on television: the fall to the floor, the violent thrashing, maybe some foaming at the mouth. Therefore, it’s really easy to keep track of them for the neurologist and make decisions about which medication is the perfect match for your situation.

Hear that? That is the sound of the collective eye rolling of the epilepsy community. Just kidding, ya’ll!

It turns out that a seizure can look like damn near anything. Eye rolling, staring, wandering, confusion, a single limb jerking, lips puckering, a split second head drop, a split second loss of muscle tone that sends a person plummeting to the floor, jackknife motions of the body, going stiff as a board, a scream…or nothing. Nothing at all. All you know is that suddenly your child went from smiling and laughing to laying his head on the floor and going to sleep, or he’s suddenly so weak that his arms give out and he smacks his head on the floor resulting in two black eyes. It’s not just seizure freedom that can be elusive, but the seizures themselves.

Was that a seizure? Was that? And what about that? Do I count that if I’m not sure? Was that one seizure or two different ones back to back? And that one? That one looked like a weird combination of tonic clonic and complex partial, so which do I mark it as on my Seizure Tracker app? Our smart phones fill with videos of suspicious behavior we share with our online support groups and doctors trying to get answers. It takes an hour to do the dishes because I turn around and look at the baby every 30 seconds to see if anything is happening. Every stoplight I turn around and squint at the baby mirror. If he has actually managed to go a few days seizure free, when one happens, I play mind games with myself about putting it in the tracker. That was a small one. Am I sure it was really a seizure? Does it count if I don’t record it?

I think the first year was the worst. Babies are weird and do weird stuff. How do I differentiate normal weird from abnormal weird? Is he discovering his hands or is he seizing? Trying to roll over or seizing? It’s even worse if it is the first child and there is no one to compare him to. It’s a little easier with a toddler. Not easy. Just easier. It is easier for me to distinguish typical behavior from anomalies, or if a movement was intentional or not. Not all the time, but enough to do the dishes in a reasonable amount of time. Or settle for a quick glance in the rear view. Sometimes I even settle for logging the seizure type as “unknown .”

And choosing just the right medication? Yes, that was another collective eye roll. We experiment, and change doses, combine two, three, maybe even more seizure medications. We try one med with great anticipation because it made another kid seizure free, only to find that it makes our kid have more. And if we find one that works, eventually he insists on growing or something else changes, and the experiment continues.

I have to accept that there are limits to what I can fix and do the best I can.

Most importantly, I finally realized that it doesn’t make me a bad parent if I don’t always know. I WILL miss seizures. I won’t know what every movement is. There won’t always be answers. There will be good days and bad days. But they will be worth it.

IMG_1518

Thank you to joshprovides.org for granting Connor an Emfit seizure monitor.
Thank you to joshprovides.org for granting Connor an Emfit seizure monitor for his crib.

IMG_1313

Advertisements

I didn’t hear anything from that moment on even though I saw the doctor’s mouth moving, except “there is no cure.”

Second Annual “Blogging for TSC Awareness Month” Day 30

by guest blogger Katie Creamer  (Long Beach, California) 

keenan in carTwo and half years ago one of my biggest dreams had come true; I was so happy and extremely proud when my healthy and beautiful baby boy was born.  My husband and I had been waiting and preparing the best we could for this exact moment for a long time and we were finally ready.  My baby was perfect; beautiful, big, had a full head of hair already, had 10 fingers and toes, and alert from the first moment we met.

This being our first baby it took us a while to understand each other’s needs as I recovered from my Cesarian section and immediately started breast feeding, but within a few weeks we were perfectly in sync and in pure bliss.  Being a mom was amazing and I immediately knew why I was put on this earth; to be Keenan’s mommy.  When I look back at those first few weeks, the only clue we had that our life would soon be shocked to the core was a white spot/ birthmark on his knee that our pediatrician had waved off as no big deal.  We quickly began the newborn pattern of the day filled with eating, sleeping, and pooping; we thought everything was perfectly normal.

Where our story is slightly different then a lot of others lies within the next 18 months.  We lived the next 18 months as a normal, healthy, happy new family.  Keenan hit milestones on time and was a constant thrill to watch him cognitively advance and become a little person.  We were doing perfect and beginning to plan for a sibling for Keenan in the future.  Then at 19 months old Keenan spiked his first high fever which caused a “febrile seizure.”  Witnessing that was what I thought would be the scariest moment of my life. We called 911, had our first ambulance ride, and by the time we got to the hospital everything had settled down.  We were told Keenan had just had a febrile seizure which was explained to us as keenan after surgery 1“no big deal” and “some kids are just susceptible to this, but they eventually grow out of it.”  Next time, “just remain calm, then when it stops bring him in afterward”, “they can last up to 15 minutes, but just try to remain calm.”  We were told this is common (we even saw another baby come in after a febrile seizure while we were there), we were told how to avoid fever spikes and seizures in the future with high doses of Advil and Tylenol, and then sent home.  Proud of how my husband and I handled this emergency and what we thought might be our biggest challenge, we went on with our lives.  I researched what I could and tried not to worry too much, till six weeks later when Keenan had another fever.  With this fever I was ready with alarms for meds throughout the night but didn’t need them because I didn’t sleep at all and just watched him through the night like a hawk.  He had made it through the night without a problem so I went to work in the morning and left Keenan in my husband’s capable hands.

I’ll never forget at 10 am when I was finally able to check my cell phone and saw that I had five missed calls from my husband.  Listening to the voicemails confirmed my worst fears, I could hear my husband saying, “it’s ok Keenan, daddy’s here.”  My heart dropped because I knew Keenan was having a seizure.  I called my husband quickly to find out what hospital to meet him at, and to my surprise he hadn’t called 911 yet, now realizing he was following the ER doctors instructions and he was following perfectly, “waiting it out.”  My mama gut came screaming out and told him to call 911, and he did.  When the paramedics had arrived he had been seizing for over 20 minutes and they had to sedate him to stop the seizure.  Looking back, our first mistake was listening to the ER doctor. My son had experienced a status event.

IMG_5124jpgAfter a few hours of my son lying lifelessly in the ER, he started to struggle to open his eyes and make sense of his situation.  Quickly we noticed that he could not move his entire left side or even move his eyes to the left even when I called him.  We were scared to death and a CAT scan was done on his brain right away.  Within 15 min they told us that he had a brain tumor and multiple “lesions” on his brain, and they told us he had something we had never heard of, Tuberous Sclerosis.  I didn’t hear anything from that moment on even though I saw the doctor’s mouth moving, except then I heard “there is no cure.”

We sat in shock for the next two weeks, researching what we could (but the internet scared us to death) and making many specialist doctor appointments.  We heard many grim possibilities, but the scariest we heard was that “how this disease will affect your son can not be predicted” and it’s all about dealing with one symptom at a time as they pop up for the rest of his life.  Keenan also has been diagnosed with polycystic kidney disease, has a “medium burden” of tubers in his brain, one SEGA, and multiple nodules.  We now sit in the unknown trying to cherish every moment because we have no idea what the future will bring.

Coming up on 1 year since Keenan’s diagnosis we have gone through three different anti-seizure meds trying to control his 4-20 seizures a day without any success, we have faced the tremendous life changing decision to make to try brain surgery on our 2 and a half year old son to try to stop the seizures, Keenan has to have MRI’s every 6 months on his brain and abdomen to watch the multiple tumors and cysts on his kidneys, and blood work every 3 months.  Everything and all his tumors have to be monitored to decide when the next major decision has to be made.

Sometimes we feel like we are just waiting for the next bomb to drop, but we have learned so much in this past year.  The major lesson we’ve learned is to prepare for the future but live in the moment: whether it be good or bad it won’t last long.  So cherish the good times and live them to the fullest!

2jpg

IMG_5185jpg

 

Every Child Gets One Free Seizure in Life

Second Annual “Blogging for TSC Awareness Month” Day 8

by guest blogger Jordan Martin  (Brunswick, Georgia)

2014-04-059518.34.36

Growing up all I ever wanted was to be a wife and mother.  I always wanted to have 4 kids — 2 boys and 2 girls.  I met my husband Thomas (T.C.) when I was 18.  We have been together for 10 years and married for 7 years.  We have 3 amazing boys: Conner 6, Preston 4 and Aiden 18 months.

Conner Thomas Martin was born on what at that time was the luckiest day of the year July 7, 2007. People to this day when they hear his birthday their first reaction is, “Wow, what a lucky boy!”   I always think to myself, “If you only knew what he has been through”.  To this day I still don’t remember what he looked like the first time I saw him.  I was put under for a cesarean.  Never have done drugs in my life or had ever been in the hospital.  So when T.C. showed him to me for the first time all I remember seeing is a head full of black hair and then passing back out.  I know a lot of parents say this but Conner was seriously the best baby. He was never fussy; he loved to sleep.  He did have acid reflux, but other than that he was perfect.  At around a month old I was sitting on our couch burping Conner and my watch pinched him.  He cried but I checked and didn’t see a mark.  A few hours later when T.C. got home he was changing him and noticed a mark on his lower back.  I assumed it was from my watch and told him what happened. “No Big Deal!!!”

A few weeks later Conner had a check-up and the mark was still there but bigger and risen above the skin.  He also had a red mark on his stomach of a different shape but also red and risen above the skin.  The pediatrician assured us they were “hemangioma.”  Nothing to worry about and would shrink as he gets older.  Well he was right about one red mark.

Conner hit all his milestones right on time.  He was the easiest going little boy.  Never sick, never met a stranger he didn’t know, loved to play outside but was also content being by himself in his room playing.  He was just full of life.  In 2009 we had our second son Preston Robert Martin.  He was born exactly 2 years 2 weeks apart from Conner.  He was by far not the best baby.  He was miserable.   Teething but couldn’t cut teeth.  I tell him all the time “I would never re-do you as a baby again.”  Conner loved having a little brother and being able to teach him things.  That is until Preston learned how to crawl and take his toys.  Life was “normal” as could be.  I hate that word “normal”!!!!

Our story begins on September 19, 2010 at 12:15 p.m. Conner was  3 years old.  It was a rainy Sunday afternoon.  The boys woke up at their normal time, considering the night before Conner woke up at 2:45 a.m. throwing up and Preston was up and down cause at this point all his teeth were coming in at the same time.  T.C. was still asleep.   He worked at a mill at the time working 12-14 hour days so on the weekends I let him sleep in.  At 12:00 p.m. I rocked Preston to sleep and asked my mom to watch Conner for me while I did so.

At 12:10 p.m. I laid Preston down and asked my mom where Conner was. She said he was in my room watching Tom and Jerry.  I went into my room and asked Conner to go to the bathroom so we could lie down and take a nap.  I kept calling his name and asking him to get up but he just laid there.  I assumed he was just caught up in the cartoon.  I went and stood in front of the TV and asked him again but NOTHING!!!  I turned around to turn the TV off and when I turned back around his face was turning red and his eyes — it was like there was no life in them.  I said, “Conner what’s wrong with your face!?!”  T.C. immediately jumped up from out of bed and picked him up.  Mind you neither one of us had ever seen a seizure before.  I went into the next room and got my mom.  By time I was back in the room he was foaming at the mouth, had peed himself and was convulsing.  T.C. handed Conner to me and told me to get in the car.  He threw on a shirt pants and didn’t even bother to find his shoes.

We live right down the road from the hospital.  We pulled up so fast they must have seen us coming because they came running out to get him.  They were asking all kinds of questions.  I couldn’t process anything.  Conner couldn’t talk for 4 hours.  He was completely out of it.  Once he was stable and coherent they moved us to a room for overnight observation.  They ran tests and did scans.  The next day the doctor came in and said everything came back “normal.”  It was just a spiked fever that caused the seizure.  I looked at him with my husband, Conner’s grandparents in the room with us and said, “My son doesn’t spike fevers”!  I can count on one hand how many times he has ever been sick.”  I just knew it was something more.  The doctor looked at me and said “Every child gets one free seizure in life.”  I’ve never wanted to punch someone in the face so bad before.

By time we were discharged it was too late to call his pediatrician so the next day I called and scheduled an appointment.  It would be Friday at 3:30 before they would be able to see him.  Tuesday he was fine and back to normal.  Wednesday at 3:00 p.m I was sitting on the couch and Conner called my name.  I said, “yes baby, come here”.  He didn’t answer.  I immediately got this sick feeling in my stomach.  He called me again and when he came over to me he was staring off and his eyes were twitching a little.  It only lasted about a minute.  I thought maybe he was just tired.  I had never heard of staring seizures or any other types besides grand mal.  Oh I learned fast!!!

I told my mom and I think she thought I was being paranoid.  Thursday same exact time, same exact thing.  Friday while I was getting Preston to take Conner to his appointment, he did it again but this time my mom saw it.  His pediatrician informed me they were staring seizures and she was setting us up to see a pediatric neurologist in Savannah and that she was also ordering him to have an EEG done.

Appointments were finally approved through insurance and Conner had his first EEG done in November 2010.  The neurologist appointment was also coming up, but right before Thanksgiving I received a letter stating they had to reschedule it to the end of December.  By this time Conner’s seizures were worse and every day, sometimes resulting in emergency room visits.  We decided after we came back from Thanksgiving in Florida we would go to the hospital in Savannah and pray they would see him or anything.

While in Florida I received a call from the hospital about his EEG results.  Even though Conner was awake it showed abnormal study due to the presence of spike and sharp wave activities in the right hemisphere, which would be consistent with a few focal seizure disorder.  A few days later there we were walking into the emergency room in Savannah.  The lady at the front desk just looked at me like I was crazy when I was explaining what we were doing there. We weren’t leaving any other way.  Conner, being the helpful child he is, decided to speed the process a long faster and started having a seizure.  We noticed that anytime Conner gets nervous, scared, surprised, overly excited or any loud noises tend to make him have seizures.  She immediately called and they came and took us to the back by time we were in a room he had stopped seizing.  We told the on-call doctor what was going on so he said to give him a minute.  An hour later he came back and told us he called the neurologist office and they would see us in 30 minutes.

Dr. Mortez was the neurologist.  She was really nice and we explained everything that had been going on.  She said she was ordering an MRI and requesting all of Conner’s labs, test results and scans done the day he first seized.  Along with those she also wanted the results of his EEG.  She prescribed him Trileptal and would see us back in 2 months.  If only it was that simple.  Conner’s seizure got worse even with the medication and by the time 2 months rolled around we still hadn’t had the MRI.  She increased his medication and said she would call about the MRI.  By now ADHD and aggression had set in and his hostility was always towards his brother and me.  Still is to this day.  T.C. ended up calling our insurance company up and having a few choice words with them because they still hadn’t approved his MRI.  Needless to say a few days I received a call from the doctor’s office with an appointment scheduled.  February 17, 2011 he would have his first MRI done but not his last.

February 18, 2011 T.C. was sick so my parents, Preston, Conner and I all went to Savannah to receive the results from the MRI.  I was honestly expecting for it to be a simple case of epilepsy. BOY WAS I WRONG!!!  My dad stayed in the waiting room with Preston letting him play with the toys.  My mom went in the back with Conner and me.  In walks Dr. Mortez and from then on it was like an out of body experience.  “The MRI didn’t turn out how I was expecting it too.  It’s more serious than what I was hoping for.” She says.  My mom later on told me I turned ghostly white when she said that.  She then explained that Conner had Tuberous Sclerosis.  Something I could barely pronounce, let alone spell.  She explained how his body produces tubers/tumor like growths on his major organs.  Now we were being referred to MCG in Augusta, now Georgia Regents Medical Center, to the epilepsy department.  She assured me it was a good hospital and that they have lots of experience with the disease.  She also explained how the spot on his lower back was a “shagreen patch” not “hemangioma” and how the spot on his face that popped up over the holidays was a “focal angiofibroma” and not a mole like I thought.  My mom took Conner out of the room by then so I could talk more with the doctor.  He would now need to have kidney and heart ultrasounds and have his eyes checked as well.  Soon I was left alone in the room.  Not wanting to cry or get upset; just wanting to reach my husband.  All I could hear were the words tubers/tumor like, more doctors, brain surgery, etc going in circles in my head.  This isn’t going away!!!

When we arrived at home I tried explaining it as best as I could to T.C.  I still hadn’t cried.  I couldn’t let myself.  I honestly don’t remember anything after that besides putting the boys to bed.  When I got in bed I completely feel apart.  T.C. just held me. All I could do was cry.  I didn’t understand how this happened.  How my perfectly healthy child could have been born with this and no one knew it.  How could he just start having seizures out of the blue?  It made no sense.  I was pissed, sad, so many emotions rolled into one.

The next day I just spent lying in bed depressed really.  I couldn’t process all of it.  I needed a day to collect myself.  I was numb to be honest.  So my parents took care of the boys that day and my mom took all the phone calls from family members explaining what was going on.  I definitely went through the seven stages of grief.  I think my husband was stuck in anger and denial for a while.  You mourn the life you had and accept this is your new life.  The next day was filled with phone calls to the cardiologist office, setting up kidney ultrasound and eye appointments.  I had one doctor tell me they had only read a paragraph about it med school.

Dr. Mortez told me that if after two weeks if Conner was still getting worse after the last increase of Trileptal, to call and let her know.  Of course his seizures were still increasing and he ended up in the hospital again.  I called her the next day and left a message.  I was surprised when she called back within a few hours and informed us she called Augusta and they were moving his appointment up and we would be getting a call from them to set up an appointment.  She said since his medication hadn’t been working at all he needs to be monitored soon as possible.  Good news was his eyes didn’t have any tumors.  His heart had two small ones but they weren’t causing any damage so they just need to be monitored.

2014-04-059518.25.55A few weeks later we were in Augusta for Conner’s three-day EEG monitoring.  Dr. Park is head of the epilepsy department in Augusta and Dr. Strickland is the neurologist there.  They are Conner’s doctors still to this day.  Conner was monitored for three days.  His seizures were mild and very little — not what we were expecting, which was unusual for him, until the last morning when he had 10 seizures within a 30 minute time frame.  The doctors came in a little later for rounds and said, “That was good we got everything we needed.”  They were a little too excited about all the seizures at the time I thought.  But I understand now.  They said it’s amazing you are able to press the button right before he starts seizing. I said is that good?  They said, Yes. it means we got everything from the very beginning of his seizures to the ictals.”  They asked how we knew before they started.  I told them how sometimes Conner knows before he is going to have one and he will come find someone, and sometimes he also gets this look on his face right before he starts seizing.  I also explained how I can feel it in my stomach right before as well; it doesn’t matter if Conner is in a different room. I get this sick feeling in my stomach.  It sounds crazy.

They informed us of all the testing coming up to see if he was a candidate for surgery.  They also told us Conner’s was a “spontaneous mutation” in his gene while I was pregnant.  We also found out that the doctor in Brunswick who said all his scans came back “normal” read them wrong.  It clearly states there were “abnormal” findings in his frontal lube.  I thought I was going to lose it.

The next few months we spent traveling back and forth.  By then Conner was on Lamictal as well as Trileptal.  It was hard financially on us but we managed with the help of family and friends.  Conner was being tested to see if he was a good candidate for surgery.  Turns out his seizures came from both right and left frontal lubes more so from the right.  Soon he was on Keppra, Lamictal had been increased and taken off Trileptal.  We also had to add Clonidine because his ADHD was so bad he couldn’t sleep but three hours at a time most nights.  He was also becoming more aggressive and having more meltdowns.  At this point even my parents couldn’t handle him bouncing off the walls and acting violent towards everyone.  I felt trapped in my own home with no help.  T.C. worked full time so I could stay home with the kids.  I literally felt like I was abandoned by everyone.

Conner didn’t understand why all of the sudden he wasn’t allowed to go anywhere.  Places he has been to his whole life; it wasn’t fair.  One day I lost it!  Conner was having a bad day — just one meltdown after the other.  I ended up locking myself and Preston in the bathroom just to get away from him and the constant hitting, kicking, screaming, etc.  I called my mom and my best friend’s mom, who is Conner’s other grandmother and just started yelling about how I felt like everyone abandoned him and me and how this disease was taking over my life it felt like.  I needed them to stop worrying about how they felt or were scared of what might happen and think about what he feels and how confused he is.  He would say, “Mama, I’ll try to be good. Trust me.”   “I won’t hit Preston or scream or anything.”  It broke my heart every time, but after the talk with all the grandparents, they understood and began spending more time with him and Preston and were there for me too.

Summer of 2011 came and Conner turned 4.  He would be starting Pre-K soon which scared me to death because he was still seizing every day.  He was now also having them every night so he started sleeping with me and TC slept on the couch.  A few days after his birthday we had an appointment with the neurosurgeon.   My husband, my Dad, Conner and I  drove up to Augusta the night before since it was an early appointment.   The appointment the next morning consisted of the doctor going over the pros and cons of Conner having brain surgery for his seizures since the medication still wasn’t working.  His opinion was that Conner’s best option was to have the surgery.  So, we decided to go ahead with the surgery.   After that TC broke down, but I stayed calm for him and Conner. I’m the level-headed one when everyone else gets upset.

The surgery was scheduled for October of 2011. Since Conner would have only been in school a short time, the doctor suggested he not start since recovery 2014-04-059518.29.42time could be long.  So we withdrew him from school registration.  He had been so looking forward to going. He saw some of the pictures his friends had posted on Face book of their first day of school.  I hated seeing him upset so I put on his Thomas the Train book bag, stood him in front of the door and took his picture.

September 19, 2011 was exactly one year since Conner’s first seizure.  My parents had the boys for the night.  I was lying in bed, waiting on TC to get home from work and I couldn’t sleep.  I was thinking about the day Conner’s seizures started. Everything just hit me all at once: the past year, all the appointments and medications, seizures and the tests his little body had to endure …and now Brain Surgery!  It just wasn’t FAIR! By the time TC got home I had been crying for an hour.  I had tried to hold all my frustration and feelings in for so long that I felt like a dam had burst inside of me.  It all came pouring out.

The next night Conner had 20 seizures in one hour and I thought this would never stop!!!  The next day Conner didn’t have any seizures or the next day or the next.  Four weeks later…still no seizures.  Everyone was so happy!  Of course I, being prepared for the worst to happen, couldn’t allow myself to be excited.

Conner’s surgery day was fast approaching.   My husband wasn’t feeling comfortable with Conner having the operation since the medication seemed to be working now. We talked it over again and decided to cancel the surgery.  The holidays came and went. Conner was still seizure free although his aggression and his impulse control were still big issues we still had to deal with.     2012 was a good year!  We had an unexpected surprise….we were expecting again.  Conner had, maybe, three seizures that year.  He had no new tumors in his brain, heart, kidneys or eyes.  He got to start Pre-K and loved going to school.  Conner and Preston loved having a new baby brother.  It was just a great year.

March 2013 and it’s time for Conner’s yearly checkups.   Kidneys are first.  By now TC and I know what to look for on an ultrasound. We immediately saw the tumor on his right kidney. It’s not very big, but still, it wasn’t there last year.  So now we go to Augusta to see Dr. Ortiz, Conner’s nephrologist, every three months for blood work and every six months for ultrasounds to monitor any new growth.  At least his heart and eyes are still doing well.              School ended and what we planned to be a fun, enjoyable summer was instead filled with stress and sadness.  My Nana, who was living with us, was diagnosed with stage four lung cancer.  Our days were spent with over fifty people (Hospice, relatives and friends) coming and going from our home.  Ten people were actually living 24/7 on air mattresses throughout the house.  Conner’s anxiety and stress level kicked in as did his seizures.  The boys were very close to their Nana.   Summer came and went and Nana passed away.

School started again.  Conner started Kindergarten and Pres started Pre-K.  Two boys in school!  Yes! Even though I had given Conner’s new teachers and school information on his disease, I don’t think they were prepared for the first day. His anxiety was through the roof, he was having a major meltdown, just a really bad day.  But the next day he did really good and had a good day.

Conner is doing really well in school this year (2013-2014 school year).  His anxiety level is up and down. The amount of sleep he gets affects what kind of day he will have.  He still wakes up two to three times a night most nights so the next day is guaranteed meltdowns, staring seizures, and being emotional.                                                                                                                                  Right now Conner is just like any other six year old little boy.  He does get tired a little more easily due to medication.  He is now on Lamictal, Keppra, Topramax for seizures; Clonidine, Melatonin, to help him sleep and Lisinopril for his kidneys.

Conner understands as much as much as a 6-year-old can, that he has a condition called TSC.  We never treat him any different or any more special than his brothers.  As much as this is about Conner and our journey with TSC, it’s about Conner’s brother Preston too.  He is Conner’s rock.  They may fight and argue nonstop and are like night and day but Preston is always there, and always has been to make sure his brother is ok.  Preston understands that Conner has lots of doctors and he has seen everything his big brother has went through. He would sit next to Conner for two hours when Conner fell asleep after a bad seizure. Preston always made sure that when Conner woke up he had his favorite bunny, his Sippy cup and whatever toy he had sitting next to him so they could play together.

It scares me to death to think of Conner as an adult, letting him grow up and be in charge, or have a say in his healthcare.  I know it isn’t anytime soon but I will have to learn to let go and he will be ok.  He is the strongest little boy I know. I am no longer bitter or angry that he has TSC.  I’m trying to embrace Conner for his differences and his sometimes extreme passion and stubbornness.  He gets that honest.  I don’t worry what people think about him or us if he has a “meltdown” in public.   What is deemed “normal” nowadays any way?  People judge what they don’t know or understand. Some days are better than others and sometimes you feel like you have been defeated but at the end of the day it will be over and something better will happen.

This is our TSC story.  It is nowhere near over; it’s really just begun.  Sometimes it feels like a lifetime ago when we tell stories about Conner or life before TSC.  It’s like a different family.  If anything, I want to teach my kids that a disease does not define you as a person or give you an excuse to do wrong.  It makes you a stronger person and can bring a family closer together.  It makes you love and appreciate one another more and treasure every moment you have together.

2014-04-059519.02.09

 

 

Unexpected Blessings

Second Annual “Blogging for TSC Awareness Month” Day 7

by guest blogger Jonna Stromberger  (Iliff, Colorado)

eeg1Our story with Tuberous Sclerosis begins on February 27, 2010.  Bailey Rae – the baby girl her Dad, I, and older sisters had been waiting for, had finally arrived!  Three weeks early, and full of surprises yet to come!  The first four months of Bailey’s life were exactly what you would expect from a newborn.  We were adjusting to having a baby in the house for the first time in six years.  For the most part our older daughters, Brooke and Alli, adjusted well.

When Bailey was around three months old, I started noticing some jerking movements that didn’t seem quite right.  I talked to my husband about it, and even pointed out the movements several times to him.  I described it to my Mom that Bailey seemed to have the “startle reflex” a lot more than her sisters ever did.  At her four month check-up I mentioned my concerns to her doctor.  If the movements continued, or seemed more frequent, he said we might consider having an EEG done, just to be safe.  That very afternoon, several hours after her appointment, Bailey started jumping in my arms, just as my husband walked in the house.  We packed our bags, and headed to Children’s Hospital of Denver.

After explaining our concerns to the doctors, Bailey was hooked up for an EEG for the first time.  She was poked from head to toe, had ultrasounds, an MRI, EKG, and an ECG.  I’m sure I’m forgetting some of the tests, but it was all so overwhelming to us. Looking back on it now, some of the details seem a little blurry.

June 29, 2010 Bailey was diagnosed with Tuberous Sclerosis.  The little jerking movements were infantile spasms.  Our world was turned upside down.  Bailey HospitalThe perfect little girl that was loved and adored was now fighting some terrible disease that we had never even heard of.  White spots on her skin were explained.  Her team of doctors wheeled in a monitor with her MRI pictures, and her tubers were pointed out to her Dad and me.  Her neurologist explained that TS is different for every person, therefore they couldn’t really tell us how Bailey would be affected now or in the future.  She may not talk, she may not develop fine motor skills, she may not walk, she may not be able to feed herself; I cried.  That’s the one thing I remember doing.  I cried for my baby and all the things I wanted for her in life that she might not ever have.

Bailey started taking Vigabatrin on July 5, 2010, and she didn’t have another infantile spasm.  It seems like we were making trips to Denver on a constant basis.  Bailey began occupational therapy, and continued to meet all of her age appropriate milestones.  All the things I took for granted with her sisters were celebrated by our entire family – rolling over for the first time, her first steps, and then her first words!

On February 24, 2011 Bailey had a febrile seizure and was flown to Denver.  Her doctors thought it was best for her to stop Vigabatrin and begin taking Keppra.  She is still taking Keppra today.  We tried weaning, but had a break through seizure, once again caused by a fever, and decided to keep her on the Keppra.

Family PictureOur family has been so blessed.  Some people think I’m crazy to say that, after all we have been through with Bailey.  Our friends see her as a bubbly, active, ornery, typical four-year-old.  I truly feel that God sent Bailey to us for a reason. Bailey makes us smile every day.  Next year will be a big change in our lives, as she will begin preschool.  We don’t know what the future will hold for Bailey, but we don’t know what the future will hold for any of us.  A friend of mine gave me a frame that says “Live By Faith One Day At  A Time.”  That is what we do.  We love each other.  We take care of each other.  We appreciate all that life offers us, and we thank God every day that he gives us with Bailey.

“May God give you…For every storm a rainbow, for every tear a smile, for every care a promise and a blessing in each trial.  For every problem life sends, a faithful friend to share, for every sigh a sweet song and an answer for each prayer.” –Irish Blessing-

iphone 7-26-13 006

 

 

 

 

I want new TSC parents to know that there is hope.

DSC_0080

Second Annual “Blogging for TSC Awareness Month” Day 2

by guest blogger Brittany Schwaigert  (Memphis, Tennessee)

Our story begins in the spring of 2008. My husband and I had just welcomed our very first child into the world. Greyson was born a beautiful and healthy 7 lb., 10 oz. baby boy and there were no indicators at all that anything was amiss with his health other than a slight touch of jaundice. He was, and still is, such a beautiful child. We were so thankful that he was healthy. We never took it for granted.

Then at two months of age, Greyson had his first round of vaccinations and subsequently developed what looked like sun spots on the tops of his thighs. The vaccinations had been administered in his thighs, though, and I was aware that the appearance of the spots might well be purely coincidental. I was far from panicked, but looking back on it, I do remember that point as being the first time I had misgivings concerning Greyson’s well-being.

Things took a turn when, at approximately three months of age, Greyson started to develop a strange habit. His habit looked to me like the Moro reflex – a phenomenon that occurs when some babies are placed on their backs and respond by throwing their hands out in the air. But in Greyson’s case, this behavior kept happening at strange times, and in clusters. Close family members who witnessed the behavior or were told about it tried to tell me and my husband that it must simply be an immature nervous system, or said that “babies do all kinds of weird things.”  My gut instinct, however, told me that something just wasn’t right.

Then one afternoon, Greyson was lying with me in the bed and I was watching him sleep. All of a sudden it hit me: what if this behavior was a seizure? I practically ran to the computer to find out what I could about behaviors associated with infant seizures. What I found made my stomach sink into the ground. It hit me like a Mack truck that what I was seeing in Greyson was the outward manifestation of a dangerous and aggressive type of seizure called Infantile Spasms. It felt like my world was crashing around me in one split second.

I have always felt that it was the hand of God in my life preparing me for what was to come that, before giving birth to Greyson, I had worked for a pediatric neurologist managing an event facility that he owned. I called him immediately on his cell phone and left him a message. What followed in the next few weeks would be a complete blur.

Greyson was examined by the doctor in his office, but there was nothing that he felt he could definitively diagnose without an MRI. We scheduled the MRI and when the day came, I can say without hesitation that putting a three-month-old infant into an MRI machine was one of the scariest moments of my life. I sat in that MRI room with my baby, freezing to death, trying not crumple into a heap on the floor.

After the results came back from the MRI, the doctor called me at home. He said that he saw “indications of Tuberous Sclerosis.” The doctor explained thatdownload (2) Tuberous Sclerosis (TS) can cause epilepsy, learning disabilities and sometimes even blindness if victims develop the tuberous growths caused by the disease in their eyes (incidentally, this is the reason I feel it is so important to go directly to a TS specialist when anyone is diagnosed with TS. Though I’m thankful we got a diagnosis when we did, due to the relative rarity of TS, I was given barely a shred of information about the disease that would come to change the entire scope of our lives. The only thing I knew about TS was that my husband’s step-mother’s sister had it and she had been institutionalized for years). I looked at my precious baby lying there and suddenly was filled with fear for his future.

After a myriad of other diagnostic testing, including blood work, a lung x-ray, an echocardiogram, a kidney ultrasound, and several EEGs, the neurologist we had been referred to and his group came to the conclusion that Greyson’s condition was, indeed, TS. On top of that, Greyson was also diagnosed with Polycystic Kidney Disease (PKD). Because of the proximity of the genes responsible for both TS and PKD, in many cases of genetic mutation associated with TS, both of the genes deleted at the same time. They did in Greyson’s case, and our lives have not been the same since.

We continued going to this same neurologist for months, even after he said ridiculous things like “I can tell when someone has TS just by looking at them,” or “don’t Google this disease,” or “I guess we can try Vigabatrin (the first line of defense against infantile spasms, which was only available through international mail order pharmacies at the time) but you will have to get it on your own from Canada,” or my favorite (from his associate): “Are you asking me if every spasm is like a bullet to the brain? No, I don’t think so.” Meanwhile, my child was suffering intensely. He was crying every time he had a cluster of seizures and it was heartbreaking to watch. It gives me physical pain to think of it now.

At one point at around six months of age, when my child was incredibly doped up on Phenobarbital and ACTH for his seizures, and bloated to an unrecognizable state, I broke (I am not even going to mention the horror of sticking my child with a needle twice a day). I just couldn’t take the stress anymore and I demanded that he be admitted for a 48 hour EEG. During that hospitalization, Greyson had his life saved the first time. His blood pressure was so high from the ACTH and his PKD that he had to have emergency blood pressure meds put in through an IV. He could have had a stroke at any moment.

IMG00118After that hospital stay, receiving no answers as to how we were going to stop Greyson’s seizures, I made up my mind that TS was not going to get the best of us, or him. I immediately researched the nearest TS clinic. At that time, in 2008, the closest clinics were in St. Louis and Nashville (we are in Memphis). My in-laws live in St. Louis, so that was the obvious choice. I begged the clinic appointment coordinator to get us in as soon as she could. When we met Dr. Wong, the head of the TS clinic in St. Louis, he put Greyson on Vigabatrin/Sabril immediately. For one entire year afterwards, we had seizure control with a  combination dosage of Vigabatrin/Sabril and Topamax. After going through a huge amount of different medicine combinations, we had finally found one that worked. For that year, everything seemed like it might get better.

Then, out of the blue one day in 2010 at a therapy session, the seizures started again. They didn’t stop for two years. The seizures were intense and very frequent. Sometimes, Greyson momentarily stopped breathing and often fell and hit his head. Through all this time, Grey was getting farther and farther behind his developmental milestones. He didn’t crawl until 13 months, he didn’t walk until 21 months, and he didn’t talk until he was five. At this point, I feel I can’t stress enough how important it is to get your child into Early Intervention when he or she has TS. We scoffed at the idea at first because Grey wasn’t behind until he was close to a year old. But, looking back now I would advise any parent to go ahead and start it as soon as possible, since the TS diagnosis alone is enough for your child to automatically qualify for this free service.

In any case, after failing with ACTH, Phenobarbitol, Keppra, Sabril, and Topamax, Dr. Wong was ready to pronounce Greyson’s epilepsy intractable. So, we started to think about a surgery evaluation. Around this time, I noticed that the TS Alliance had designated LeBonheur in Memphis as a TS Clinic. I was thrilled to hear this! My husband made contact with them regarding the Tennessee Step Forward to Cure TS walkathon that I have chaired for the past few years and they offered to see Greyson and give us a second opinion.

This was the beginning of something amazing. Dr. Wheless, the head of the TS clinic in Memphis, and his staff at the Memphis clinic are miracle workers. I cannot say enough wonderful things about how much this man cares for his patients. One of the best things that a doctor can be is proactive and open to listening to patients and their parents. Dr. Wheless started us on the first of several medicine changes to see what would work. We went through combinations of Clobozam, Zonegran, Topamax, Depakote, and Onfi to no avail. He did more MRIs, multiple EEGs, an MEG, and a full surgical evaluation. That unfortunately told us that Grey was not a candidate for surgery, since a cluster of tubers were located in a dangerous area of the brain over the ear, where removing them could possibly do more cognitive damage than good. But Dr. Wheless stayed vigilant.

As a last resort of sorts, when Greyson was four Dr. Wheless suggested that we try Sabril again. By this time, Greyson was having several seizure typesdownload (3) including complex partials and tonics, along with myoclonics, which were the worst offenders in his case. Dr. Wheless said that there was some research indicating that Sabril was working well for complex partial seizures once a patient gets to be a little older. But, TS had something in else in store for us.

The same week that Grey started taking Sabril again, he started to act like he was getting sick. We couldn’t figure out what was wrong with him because there were no outward symptoms except listlessness and extreme lethargy, and some bruising on his feet. I took him to his pediatrician and, bless her heart, she said “I don’t know what is wrong with him, but I know it is SOMETHING. I want you to take him to the ER right now.” That began the worst month of our lives and marked the second time that Greyson’s life was saved.

After numerous tests and several days in the hospital, the ER doctors found that his blood work had come back with severe Leukocytopenia, which means that his body was extremely low in white blood cells. So low, in fact, that he needed a plasma transfusion. Basically, if he would have fallen and hit his head (which he did frequently with seizures and hypotonia) he could have had a brain hemorrhage and died. Dr. Wheless and his team, along with the hematologist concluded that Greyson had gone toxic on his Depakote. He was on a high dose at the time and his body had lost its ability to produce white blood cells. This was after they scared us to death with the possibility of his having leukemia and talk of his potential transfer to St. Jude down the street. We had no choice but to stop Grey’s Depakote dosages cold turkey. Those of you who are epilepsy parents will understand that there is a reason that you wean off AEDs – you never quit cold turkey.

Once we got Greyson stable after the transfusion and his white blood cell count started to improve, we were able to check him out of the hospital after a week-long stay. Mysteriously, he didn’t seize one time during our stay. This was the first time in two years that he had been seizure-free that long. But the horror was really only just starting. As soon as they stopped the Depakote, Greyson began smiling and laughing again after what seemed like an eternity of being doped up and zoned out from all the medicines. Before we checked out, though, I noticed that he was hyper and not wanting to sleep.

250804_3839084948335_1350123231_n-1He didn’t sleep for five days. Greyson had an experience akin to a drug addict  going through withdrawal from heroin. He would scream and cry and want to be picked up and then want to be put down and he would try to climb you like a tree. He ate NOTHING for five solid days, he barely drank anything, and he lost so much weight. It was the absolute most difficult thing that I have ever been through, and it wasn’t even me who was going through it. It was like an alien had taken over my child. His body was literally vibrating. I have never been so scared in my life. No one could tell us what to expect or how long this detoxing process would take, so there was no light at the end of the tunnel. It is difficult to express how horrible this two-week period was on our entire family.

On the fifth or sixth day of this hell week, he finally had a popsicle. We all breathed a little sigh of relief that maybe things were getting better. And slowly, he started to want more popsicles and more drinks, acting more and more like himself. We went through three different drugs that week to get him to relax, including Valium, Klonopin, and Risperdone. The Risperdone was just as scary as the withdrawal symptoms, however, causing Grey to drool and seemingly hallucinate.

After almost two weeks of hell, his body adjusted to the change. We ended up putting him back on the Depakote at a non-therapeutic dose (less than half of what he was taking previously) just to help with behaviors. As soon as he got that first dose back in his system, he fell asleep. It was like the clouds opened up and we saw the light of heaven. He has not seized since.

That seizure-free period has now lasted for 21 months. Every day I think about the next time he will seize. I often have nightmares about it. It is a fear that will never leave your mind when you are a parent of an epileptic child. Any strange movement makes the hairs on the back of your neck stand up with alarm.

I am thankful, so thankful, that Greyson has had this respite from the continued seizures plaguing his mind, his growth, and his life. He has turned into a completely different child. He is a person who we feel we are meeting for the first time and we love every second of it. He still struggles with simple tasks like potty training, but the difference between Greyson at four and Greyson at six is 180 degrees. He began to talk at five years old, and he is now learning new words and phrases all the time.

What I want new TS parents to know is that there is hope. You should always follow your gut and keep pushing your doctors when you are not getting the answers you want and that you deserve. If your doctor will not be proactive and listen to you, then find another one.

I would also encourage TS parents to love your child today – not for what their future will bring, not for what they were before the seizures took over, not for what you imagined they would be – because none of us know what the future will bring. When Greyson was first diagnosed, my best friend said something to me that has stuck with me all this time. She said: “None of us are promised tomorrow. Tomorrow, my child might fall and hit her head on the stoop and be brain damaged.” And, however sinister a thought or remote a possibility that may be, in the end it’s true. We have to appreciate what we have right now, in this moment, because we really don’t know what tomorrow will bring.

Medical Cannabis and Political Games

Guest post by Mixed Up Daddy

For those of you that have wondered, yes there is a Mixed Up Daddy that walks the path of life with Mixed Up Mommy.  Probably more astonishing to some (including my family and close friends), I even can write!  Although let me start by saying I don’t write nearly as well as my wife.

Also, before I get into the true reason of this post, let me just say how proud of my wife I am, not only for writing this blog and educating so many on TSC and our journey through it, but also for being an incredible wife and best friend to me, and of course the best mom ever to Connor (no offense to the other moms out there!).  I also want to thank the little man himself, Connor.  He is such an inspiration to me, and I only wish I could have a little bit of the strength and courage he shows every day.

Now on to the reason for my first foray into blogging — a certain state representative here in Georgia.  As I am sure you are all aware from reading Becky’s blog, there has been a push in 2014 to legalize medical cannabis oil in Georgia — oil that could potentially not only help with the quality of life for so many like Connor, but could potentially be lifesaving.  It goes without saying how wonderful it is to have State Representative Allen Peake of District 141 who was willing to champion this cause for so many on our side.  He did this knowing it was going to be a tough fight and one that could potentially end his political career.  It is refreshing having politicians who, even though they may lose their political career, are still willing to take on the hard issues because it is the right thing to do!  I applaud you sir!!!  I only wish we had more like you at every level of government.

But that isn’t the representative I came to write about.  I also didn’t come to write about my State Senator who, although he is in the state senate to represent myself and the rest of his constituents, never returns emails, voicemails, Twitter messages, stands you up for appointments, and doesn’t even show up for his own scheduled town hall meeting (and let me add this is not just my experience, but dozens of his constituents’ experiences).  Nor am I here to write about how wrong it is that our government (both at the federal and state levels) take off every other year from tackling the hard issues because “it is an election year”.  Again, there are some great politicians out there that don’t do this, but I am sick of hearing this. You are elected to represent us, each year and every year.  I am also not here to tackle the comment made on the floor of the Georgia House of Representatives during the debate on HB885 by a freshman politician that when he took office he was told by other politicians that freshmen congressmen and congresswomen should be seen and not heard.  Since when do those who elected a new member to represent them suddenly not have a voice?  To me this is nothing more than bullying of politicians by other politicians. Thankfully the above referenced representative did not listen to those politicians, but instead gave a great speech and represented those from his district. On a side note, don’t get me started on the all too common practice in politics of “the more you donate, the more you matter and get access.”  Maybe that is how I can get access to my state senator?

Okay, so maybe I got to a few items, just not in the detail I could have.

No, I am here to talk about, and give my opinion — no one else’s — on Georgia State Representative Sharon Cooper of District 43.  I did not know who Sharon Cooper was before this process as I do not live in her district and did not get involved in state politics. But after this process, oh wow!  Now I readily admit I am biased when it comes to the topic of cannabis oil, but my issue with Sharon Cooper isn’t so much on this topic, but the way she has conducted herself during this process, and I can only assume, how she conducts herself in general down at the Gold Dome (the Capital in Georgia is referred to as the Gold Dome).  I also will say that she voted for this bill twice — once in committee and once in the full House vote. But looks can be deceiving.  In my humble opinion she has actually been trying to kill the bill behind the scenes.  I will get to that in a moment.  Some though will say, “Why would she vote for the bill if she didn’t want it passed in reality?” Well that is where I question how she does things.  Based on parents who were in the House during the vote, she was one of the last to vote. Again it is just my opinion, but my guess is that she was seeing how the vote was going, and in “old school politician” mode, chose to vote for it as it isn’t easy to be a “no” vote when the vote is 171-4, but it is easy to hide as a “no” vote if the vote were say 104-71. (I know old school dirty politics, I was born and raised in Chicago, where that was invented).  No, an “old school politician” would vote for it (knowing that is what the public would see), and then behind the “closed doors” of the capitol try to kill the bill (luckily the doors of the capitol of Georgia are not as “closed” as she thinks).  My issue here is that she has a responsibility to her constituents to show them how she truly votes on the issues, not resort to the all too common politics of today of “I will do whatever I need to do to get reelected”.  I have no problem with my elected officials voting contrary to my opinion on issues, as there is no way we would see eye to eye on every issue.  We should not have to ask that they vote accurately though so we can actually make an informed decision during elections.  We deserve that much!

Now you may ask, “How was she trying to kill the bill?”  Behind the scenes at the Gold Dome she was passing out a flyer on the “Truths” (my wording) of HB885, yet there were several facts that were wrong on it.  I am not sure if she just got the facts wrong and didn’t do the research, or if she did this on purpose, but either way that is unconscionable, and although it is common in politics, has no place.  Let’s also not forget that her position on some items is ever changing.  Take Epidiolex (a pharmaceutical cannabis product that is currently going through FDA trials and shows some great promise) for example.  At her committee meeting there was testimony by a woman — a family values advocate, not a doctor  –who said Epidiolex could be here in Georgia in 30 days, yet there was also testimony by a respected neurologist (Connor’s doctor, and many of the other children that could benefit from cannabis oil) who said he was in the process of getting DEA approval to run an Epidiolex trail, but it was a long and arduous process.  So who does she back during the meeting? The non-doctor testimony — never mind the fact that it was a lie.  She would correct that in later speeches and comments though.  She could have also found out more about how it is such a long process by watching the show Weed 2 that recently aired on CNN and was done by Dr. Sanjay Gupta.  Of course this is the same congresswoman who called into question Dr. Gupta’s credibility during her committee meeting.  Never mind Dr. Gupta is a well respected neurosurgeon, assistant professor, and journalist.  She also cut off more than one parent during their testimony, including one that she would later reference in her speech on the House floor regarding medical cannabis, although twisting and misrepresenting his story to fit her ways.

Representative Cooper’s big idea on the subject is that we have an alternative FDA medicine — Epidiolex — at our disposal.  Unfortunately that medicine is not readily available and we have no idea when it will be (most likely years based on other FDA timelines).  Currently it is only in trials, very limited trials (we are talking 125 people, and based on trials that are trying to get up and running, at most maybe 2000 people, but probably less, in the future).  She also has said that Children’s Hospital of Atlanta has told her they are open to do studies on Epidiolex, yet when contacted, CHOA said they have no interest in doing a study on Epidiolex at this time. I have no idea why the parents are getting different information than Representative Cooper, but we certainly aren’t being told what she says she’s hearing (maybe “old school politics” again).  What do these parents and adults do in the meantime?  Also, let me point out that most patients have exhausted all available FDA-approved meds that are out there for their conditions.  Let me also mention that although I am sure there are some incredible people working for the FDA, let’s not forget that the top levels at the FDA are political appointees, and that big pharma is an incredibly powerful lobby and big contributors to political campaigns.  Let’s also not forget the side effects that come with the FDA-approved meds that are taken every day — possible vision damage, kidney failure and liver damage to name just a few.  Or that there have been FDA-approved drugs that have then been recalled.

I am digressing though. There are some incredible parents we have met along this journey that are a lot better at giving examples of her lies, and if they cannot get them published in the Atlanta paper, I am sure my wife will give you a forum to get your message out.  Since the Atlanta paper allowed an editorial by Sharon Cooper though, I certainly hope they give “us” a chance to get the truth out there.  Again, this is about her shady politics, though.  This is what the general public has grown sick of in America.  We expect our politicians to act in a better manner.  I only wish I lived in her district to run against her.  In Georgia though, we are sort of set-up where the common man can’t run.  We only pay our politicians less than $18,000 a year (no, I am in no way advocating for higher pay), so unfortunately unless you are a business owner, or independently wealthy, it is almost impossible to run as you can’t raise a family on that pay.  As great as my company is, and they have been incredible throughout our whole journey with TSC, I am pretty sure they are not going to let me take the first three months of the year off.  And how I would love to run against our state senator so that everyone in our district could be heard and represented.  I deserve to be heard and represented; we all deserve to be heard and represented!

Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.
Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.

And another medical marijuana refugee is born…

IMG_6544

Janea and Haleigh left for Colorado yesterday. Haleigh is the little girl for whom HB885 is named “Haleigh’s Hope Act.” The awesome Rep. Allen Peake met her and immediately began his crash course into the world of medical cannabis and CBD oil, pushing this Georgia bill with everything in him.  But Haleigh’s declining health means she can’t wait. Her father must stay behind in Georgia because of his job.

HB885 has passed the senate committee but with major changes. Cultivation is out. Basically, it provides legal protection to a person caught with CBD oil. It does not help us obtain it. This was always a hurdle even with cultivation (there were different issues surrounding that). You’d have to get it in a legal state and get here without being caught. Frankly, places like Realm of Caring are not going to sell it to you knowing you plan to cross state lines against federal law because that puts them in danger of being shut down by the DEA. It’s important to understand that this bill, even if passed on the senate floor, signed by the governor and made law, would not allow everyone to run out and get it for their kids. It does prepare our state, however, for a change at the federal level. If the feds reclassify it with the DEA — as they need to — we are ready to go. And hopefully, passing this in such a conservative state will add more pressure to the federal government to get off their butts and help people.

Another twist is that a separate bill is now attached to HB885. The chair of the senate committee, Renee Unterman, has been trying to pass a bill for five years (Ava’s Law) mandating that insurance companies cover treatment for autism (Georgia is one of a minority of states that don’t require autism to be covered). A compromise bill that increases benefits up to age 6 is now part of a package with HB885 called the Kid Care Act. The autism bill has also been tacked onto HB943, which would prevent insurance discrimination over certain types of cancer treatment. The reason is that the autism bill alone would have to go through subcommittee in the House, and thus far, they haven’t been willing to hear it. By tacking it onto bills that have already passed the House, it bypasses the subcommittee when it goes back to the House for approval for the change.

Now the bill must go through the Senate Rules Committee and then go to the Senate floor for a vote. Then it goes back to the House for approval. Last day of session is March 20. Nothing like going down to the wire! Once again, if you haven’t e-mailed your Georgia state senator yet to support HB885, you can find out who yours is at openstates.org.

Also of note are two op-eds in the AJC today. Eli Hogan shares his experience living with Crohn’s Disease and it is a great read. It is followed by a  counter-point from Rep. Sharon Cooper. As you read it, please keep in mind that she voted to pass HB885 twice. First out of committee, then on the floor. I would also urge you to read some of the excellent comments from parents below the essays.

If you missed Sanjay Gupta’s follow up to last year’s special Weed, you can find it here. The original is here. Anyone who cannot invest the 45 minutes it takes to watch at least one of these has no right to question the people who are fighting for these changes.