Tag Archives: Trileptal

Every Child Gets One Free Seizure in Life

Second Annual “Blogging for TSC Awareness Month” Day 8

by guest blogger Jordan Martin  (Brunswick, Georgia)

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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.

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Which is the bigger scam? Appraisals or the TSA?

The last couple weeks have been rather exhausting in good ways and bad ways. Good = trip to Boston. Bad = corrupt housing market.

Might I start by saying I hate property appraisers? I think I said that in my last post. It is still true. Despite the fact the houses by the same builder with the same floor plan have recently sold around the $200k within walking distance, our appraisal at $185,000, $20k below the agreed upon sale price will stand. We were already taking a hit from what was paid. And despite our complete makeover of the lawn from dirt to gorgeous grass, the addition of granite in the bathrooms, a thorough de-brassing of fixtures, a new water heater and a new roof, it’s still worth $25k less than it was appraised for in 2007. So dear, dear appraisers, yes, we all know you were oh so shady in your role (I say role, as banks and irresponsible buyers should not go blameless) in helping destroy our economy, and I’m so glad that you can continue to screw up people’s lives by swinging to other end of the spectrum and undervaluing everyone’s properties, as you once over valued them to line your pockets. I despise you and your industry. You have undervalued our house and taken money from us that should be going towards my child’s needs. I wish upon you a lousy life.

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Yes, we are going ahead with the move. It will hurt in the short term, but is best for the long-term. We had to heap much fertilizer on our money tree in the backyard to make it possible. Closing is in two weeks.

In brighter news, Connor is crawling like a fiend. He’s truly my child as he keeps making a move for the kitchen island wine rack and tries to steal one of my bottles. I couldn’t be prouder. He also knows that I have toys to sell stashed in the laundry room, and despite the nine kajillion toys strewn about the house, he wants  the ones in the laundry room. Emma has nearly lost her tail twice in his deadly jaws. I’m desperately trying to make him understand that bathrooms are grody mcnasty and that he should not follow us in there.

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We went to Boston last week for his third visit as part of the TSC study. He also had his annual MRI at Boston Children’s. Everything went smoothly, and I can see why Michael Jackson was hooked on propofol after an extensive period of time trying to wake Connor — not in a scary way, he just really wanted to keep sleeping. It’s waaaaaay better than my melatonin. We haven’t gotten the results yet. Hoping for no growth, of course.

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Connor’s veins continue to be elusive, proving that it isn’t just Atlanta that can’t get a vein in this kid. He always leaves looking like a retired pin cushion.

We’ve pretty much walked all over Boston at this point, so we just revisited some favorite areas.

We watched Harvard's sailing practice on the Charles River.
We watched Harvard’s sailing practice on the Charles River.

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We played with ducks in the Gardens.
We played with ducks in the Gardens.
We visited the only Curious George Store in the world at Harvard Square.
We visited the only Curious George Store in the world at Harvard Square.
Connor demonstrated that high chairs work best when you sit backward.
Connor demonstrated that high chairs work best when you sit backward.
He stole my bed.
He stole my bed.
Plane watching at Boston Logan.
Plane watching at Boston Logan.

I love going to Boston. I actually think I could live there in spite of the cold. The only negative aspect of the trip was the idiotic TSA. I’ve actually been feeling more kindly toward this waste-of-taxpayer-money organization as having a kid has miraculously made flying easier in a way. We get to skip the security line in Atlanta, they do a quick, problem-free scan of his milk, food and meds as they are oversized liquids and we get to board first. I even get to bypass the full body scanner and walk through problem free. But this time, coming home, my sixth flight with Connor, suddenly things change. They pull his diaper bag as usual due to the liquids, but this time, because of them, she tells me one of his parents must submit to a full-body pat down, as well as have their personal bag searched. Chris is already on the bench putting his shoes on, so in complete surprise, I begrudgingly volunteer to do so. Two questions: 1. What the hell does having oversized baby liquids have to do with arbitrarily patting me down and searching my purse? 2. What is the point of letting the parents choose? If we are indeed carrying a bomb, obviously the one who isn’t wired up is going to volunteer. She informs me that if I get all his stuff in 4 oz containers, I can avoid this. Hey pharmacist, I’m gonna need all Connor’s meds in a series of 4 oz bottles, please, and make it snappy! I inform her that I have flown with him six times and this is a first. No response. So apparently bottles of Enfagrow in your bag = right of government agency to stick their hands up your crotch. And they wonder why we don’t thank them for their service to this country. That and the fact that they’ve never stopped an attempted terrorist attack. That’s the job of the other passengers on the plane.

Anyway, our plan to try name brand seizure meds in hopes of better control did not work. We are now weaning off Trileptal and moving on to Onfi. His seizures have been increasing, and though they are short and he recovers quickly, he drops suddenly. He’s face planted on the floor three times now. We have to stop these before he walks. Please let Onfi be the one.

 

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“You’ll feel more rested if you get up at the same time every day.” LIES!

I’m having a terrible time keeping up with the blog now that I’m doing some other writing for meager pay to support my eBay habit. I’m trying, I swear! If I could just become a morning person, I could get so much more done. But almost 17 months of consistently getting up at 8 a.m. and I still can’t function properly until 10. Grover taunts me every morning with his chipper, go-getter attitude.

The big news is that Connor just started crawling the other day while we were in Blowing Rock, NC with my parents. He’s not doing it consistently, still doing a lot of commando crawling, but at least we know he can do it now. We are very excited. The cats are not. He’s also now demanding far too much attention after having Chris’ parents stay with us for the half a week leading up to the trip, and then another half week with my parents.

I think Connor would really enjoy having pet ducks in our backyard. Chris disagrees.
I think Connor would really enjoy having pet ducks from Blowing Rock in our backyard. Chris disagrees.
Swinging with Grandpa in Blowing Rock.
Swinging with Grandpa in Blowing Rock.
Meeting the giant doggie at Mast General Store in Boone, NC.
Meeting the giant doggie at Mast General Store in Boone, NC.
The dog makes a great rug.
The dog makes a great rug.

He also just added aquatic therapy to his regimen.

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We are so loving how attentive he is to what is going on around him these days. He had a delightful meeting with the Chick-fil-A cow recently, and also cheered up some not-so-enthusiastic waitstaff at Texas Roadhouse during their obligatory hourly line dance. His clapping and enthusiasm had the embarrassed, Man-I-really-need-the-money staff smiling.

I like ladies. I like music. This is some sweet line dancing.
I like ladies. I like music. This is some sweet line dancing.

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We had an appointment with his neurologist this morning and I requested we try name brand seizure meds (Trileptal and Keppra), in place of the generics since we continue to have breakthrough seizures. Many people swear by them as generics can vary in potency so much, so I’m hoping it makes the difference. I’m sure insurance will be delighted. But after they just sent me the private info of three people by accident…well, let’s just approve it, seeee (in gangster voice).

In other awesome news, as Connor was approved for the Katie Beckett Medicaid Deeming Waiver, we were then also able to apply for HIPP. which is a Medicaid program that helps pay your private insurance premiums in cases of serious health issues, as it is in their better interest to make sure you keep you private insurance, than lose it and resort to full Medicaid. We were approved, and this allows us a lot more income to put towards any other needs we want to meet for him. And my wine. I’m so thankful that Connor’s Early Intervention program people have been so good at making us aware of these programs. So if you have a kid in EI, make sure you have applied for Katie Beckett, and if you have done that, make sure you apply for HIPP (I don’t know what the variation is from state-to-state. I know we are lucky that such services are easily attainable here in Ga compared to what I hear about some other states, particularly in the midwest).

As for the house, I kid you not, we told our realtor toward the end of the month that we were taking it off the market July 31. We finally got an offer on July 27. So this house is under contract and we are under contract on our new house, as well. We will finally have a room we can dedicate to Connor’s mess–I mean, toys.

Don't feel bad! You've been a good house.
Don’t feel bad! You’ve been a good house.

I swear this has been the most humid Georgia summer of all time, but others have told me I’m insane and it’s always this bad. At any rate, I’m ready for fall and to wear my new scarf that my sister-in-law Donna made for me from Chris’ old shirts.

The King of Izod has some extra space in his closet now.
The King of Izod has some extra space in his closet now.

Also, two events I want to make sure TSC families are aware of in the area:

298465_187704037963818_1579148_nOn Saturday September 8, we are having a family bowling event. Cost is $10 per person, which includes shoes and unlimited bowling. Food will be provided. Details here.

On Thursday October 10, we are having an educational meeting on financial planning for your children with special needs. Details here.

 

When you put electrodes on my head, can you see how annoying I think you are?

“Oh good. I get a day off from having crap on my head so that I can have crap on my head.”

Connor doesn’t talk, but I imagine that’s what he would have said yesterday if he could. A whole day without his cranial remolding helmet, but he ends up with electrodes and gauze everywhere. And you might think, oh, poor Mixed Up Mommy. Having to spend eight straight hours in a doctor’s office while Connor has an EEG. Actually, I’m pretty sure nobody is thinking that, but that’s okay. As long as it doesn’t involve a check-in at Scottish Rite, I’m fine.

What? No helmet today? Sweet!
What? No helmet today? Sweet!
Oh. You weren't real clear, Mommy. Thanks for nothing.
Oh. You weren’t real clear, Mommy. Thanks for nothing.

This EEG was a little more challenging now that he is mobile. There was a lot of rolling, tangling and attempts to play with cords. But considering only one electrode ever fully came off his head, and I was able to reattach it, I consider it a victory. We read some books, played, I worked on an article and we took a long nap together on his jungle mat.

The EEG was just a check-in to see how things are going since we are starting to wean him off the vigabatrin. His spasms have been controlled since last September, so we’re hoping there’s no more need. We introduced Trileptal a couple weeks ago to see if that, along with the Keppra, will knock out the complex-partials he’s been having. It seems to be helping as they have become fewer and farther between. He had none yesterday, naturally. Overall, he’s doing well in the seizure department. Even though he’s not totally free, the few he does have are 10-20 seconds of pursed lips and staring and he snaps right out of them. I think the EEG will look as normal as it can — meaning his EEG will probably never truly come back normal due to the tubers, but that’s okay as long as nothing is going on that negatively affects him.

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Aren't you going to share your Dunkin' Donuts, Mommy?
Aren’t you going to share your Dunkin’ Donuts, Mommy?

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So sweet to share your chicken noodle with the EEG machine.
So sweet to share your chicken noodle with the EEG machine.

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That's cute that you big people think you can keep my head wrapped in gauze for an entire day.
That’s cute that you big people think you can keep my head wrapped in gauze for an entire day.

If I Were To Unleash Termites on Someone’s House, What Kind of Criminal Charges Would I Be Looking At?

Today started with me wanting to go into a near rage. Last night we discovered a house in the next cul-de-sac over–we live in a very small neighborhood–just went on the market. We were not thrilled. This morning it was online. Bigger. Same price. I wanted to knock on the door and punch the owner in the face. Pictures didn’t go up for a couple more hours, but after driving by a couple times, and finally seeing the pictures this afternoon, I can offer the unbiased opinion that their house sucks. Sure, they have a little more space, and a little more granite, but ours has better curb appeal and better lot. Plus I emptied a container of termites onto the property. Okay, not really, but I wanted to.

The very first person that looked at the house this week was a guy that loved it. We were unable to leave as his tour overlapped Connor’s in-home speech therapy, so we just sat on the porch until the therapist arrived. After the realtor left, he even came back and knocked on the door and asked about the neighbors. Then he brought his wife back that night. It just seemed too easy, right? I was nervous about the wife, and was right to be. She is said to have liked it a lot, but thought the living room too small. Ugh, women! Am I right? They only need to be in charge until it doesn’t benefit me. 🙂

I’m feeling a little better about it this evening though as we have another repeat show coming in the morning. A person who toured it this morning has it in their top 3, so fingers crossed.

Note the orange drool hanging down.
Note the orange drool hanging down.

We met with Connor’s neurologist yesterday, and we’re very excited that we are now weaning him off Sabril (vigabatrin). This is the med he started due to infantile spasms last September. His spasms have been controlled for quite some time, and we are hopefully past that hurdle. We’re really hopeful we’re done with this med. He’s still on Keppra, and now he’s starting Trileptal since he still has what we think are complex-partials that consist of him clenching his teeth, going slightly limp (not losing consciousness), puckering his lips and staring to the side for 10-20 seconds. We see roughly 1-2 a day, and some days none. The vigabatrin wasn’t curbing those, so since the spasms are done, no need we hope. He snaps out of them quickly and they don’t have the lingering effect of other seizures and make him fall asleep.

No more mixing those stupid powder packets, hoping UPS shows up with the meds, and no more ERGs and ophthalmology appointments! Since vigabatrin poses risk to peripheral vision, anyone with a prescription is required to have frequent eye exams and ERGs, which require him to be knocked out at the hospital. Fewer trips to Scottish Rite? Yes, please!

I recently discovered that insurance is being billed $7,000 a month for this particular prescription. And herein lies the heart of why our medical system is so jacked up. We’re so worried about everyone getting insurance, that we’re not paying attention to why everyone needs it so desperately in the first place. Big profit. The jacked up cost of medical care in this country, plus the complete lack of rhyme or reason to why things are priced the way they are, and the lack of uniformity in these prices is the problem. It took a very disturbing recent Time Magazine article to even make hospitals accountable for making their chargemaster lists public. Where else do we walk in to make a purchase completely blind to what kind of charges we’ll be facing in the end?

Sabril (vigabatrin) only received FDA approval a few years ago. Before that, most people got it from Canada. A months’s supply was a couple hundred bucks (I’ve seen people mention figures ranging from $100-$500 per month on the TSC boards). Since it was not approved, it was not covered by insurance. Now, that is a heavy fee on a monthly basis, but what can you do? Insurance isn’t going to pay for a non-approved drug. Well, then it got approved. How nice! Now insurance can pay for this important med that costs hundreds of dollars. Oh, but now it suddenly costs thousands! Now, I will say the manufacturer has a program called SHARE which offers co-pay assistance, so this drug that would probably cost people like us an astronomical co-pay of a grand or more, is actually affordable. We only pay $30. Some people pay nothing. I’m not aware of anyone being turned down. But it’s still profitable. Obviously this drug costs nowhere near $7,000 if Canada can sell it for a fraction of the cost. So even if insurance cuts a deal to pay only $4,000, and the patient gets a pass with the assistance program, those are big bucks. Connor’s last 3-day EEG

Colin Farrell- sundance

cost $12k just in room and board. And I couldn’t even get them to bring him a damn band-aid.

On a different note, I don’t know what rock I’ve been under, but I just became aware of the fact that Colin Farrell’s son also has a rare genetic disorder, even more rare, called Angelman Syndrome. I had only recently become aware of this disorder due to a Facebook page I follow of a woman whose son has it. I think it’s really awesome that he is speaking out about it and bringing attention to rare disorders. He recently spoke at an epilepsy event, as seizures are something that TSC and Angelman have in common. Very cool.