Tag Archives: absence seizures

Fighting for My Child

Day 14 of Guest Blogging for TSC Awareness Month 

By guest blogger Jessica Sharon  (Virginia Beach, Virginia)

I will never forget that day in November three years ago when my son Joey was diagnosed with tuberous sclerosis at the age of 7. At times it seems like it was only yesterday, and at other times it seems like it was forever go.

I went to wake him up for school like any ordinary day only to find he wasn’t responding to my voice, which was often typical being that he was NOT a morning person; only to roll him over and discover his eyes were rolled back in his head and he began convulsing. My initial thought at first was that he was playing a joke on me as children often do and being silly, but I very quickly realized that was not the case. It was the longest 30 seconds of my life and it seemed to go on forever. When he tried to get out of bed and walk, he immediately fell to the floor and had no feeling in his arms or legs. He began to cry in fear that he couldn’t walk and had to crawl to get around. I called 911 because I had no idea what to do or what was wrong with him. After all, he was a normal healthy child and had never had any health concerns before.

After admission to CHKD (Children’s Hospital of the Kings Daughters) in Norfolk, Virginia and numerous neurological tests, it was determined that he had TSC with lesions on his brain and heart. Thankfully, over time, the spots on his heart just went away, but spots had formed on his kidneys. I had never heard of this disorder before and had so many questions and concerns.

Fast forward three years to May of 2013. He is still averaging 3-4 absence seizures a week while on five epilepsy medications. We have tried just about every epilepsy medication out there to no avail. I always thought the seizures would be the worst of it all, but honestly, it’s the learning disabilities, mood changes, and just the overall change in his personality that has affected him and our family the most. He doesn’t want to be involved in any sports or activities that put him in a position to be surrounded by people with the possibility of a seizure occurring. It was such a struggle and an upward battle to get him an IEP within his school. As parents you truly must fight for them and be their biggest advocate because no one else will. He needed one desperately because his confidence was very low. He never felt smart, and he just struggled every day within the classroom; he is so bright and intelligent, but all the medications just seem to suppress much of that. He will be undergoing resection surgery in June at VCU medical center in Richmond to remove the cyst they confidently believe is causing the seizure activity. There is no guarantee that this will be the end of seizures for him, but as his mother, all I can do is give him the best chance at normalcy and a life free of seizures. After all, isn’t that what all of us want for our children, for them to be happy and healthy?

PIC 3-1

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We Hit the Jackpot!

Day 7 of Guest Blogging for TSC Awareness

By guest blogger ZZ Mylar (San Antonio, Texas)

My husband and I always knew we wanted a big family.  After the birth of our first child, we waited just a year before trying again.  And kept trying.  And kept trying.  We were EPM 1heartbroken to find out that we had “secondary infertility” and that it would be difficult for us to get pregnant again.  After three more years of every procedure imaginable trying to conceive and countless prayers, God led us to adoption.  While adoption is a wild ride unto itself, we were blessed to be led to Las Vegas, Nevada for the birth of our second child … Emily “Presley” Mylar . . . what a Vegas win!  Her birth parents had been through some rough times and while they loved her very much, they knew they could not care for her in the same way that we could.  We were overjoyed to bring her back to our home in San Antonio, Texas, and our four-year-old daughter was thrilled to be a big sister.

Presley ruled the roost since day one.  She was vigorous and outgoing even as an infant.  She talked early, crawled early, and walked at 10 months old.  Starting at about 18 months, we thought she had hit the “terrible twos” early.  But she never outgrew them!  Her tantrums started getting worse and worse, and I would get a sinking feeling in the pit of my stomach when she had one, convinced that something was wrong.  I even half jokingly told a friend of mine, “I bet she has a brain tumor!”

At age three and a half, Presley started having absence seizures.  Except we didn’t know what they were.  We thought she was ignoring us on purpose and being passive aggressive for a change.  We even punished her after these episodes.   Finally I called the doctor about what was happening and she had us come right in for a CT scan.  We got the call that night that Presley had TSC.  Of course this started endless research on my part and many doctors appointments to follow.  We saw a geneticist, neurologist, dermatologist, ophthalmologist, dentist, therapist, psychiatrist and a cardiologist.  We began trying seizure meds and finally went to the TSC clinic in Houston where they confirmed what all the other doctors had already told us.  Presley had TSC.

EPM2This diagnosis began to explain her crazy behavior and the white spots on her skin.  We found that she had tubers in her brain and we could expect a yearly brain MRI and renal ultrasound.  We were told that her heart was clear, but we should expect kidney and lung issues and tubers on her face, nails, eyes and teeth.  Her mental development could be stunted.  She may not lead a normal life, only time will tell.  Until then, hang in there, they told us.

Through the next couple of years, we did our best to manage her behavior, though it was very trying for all of us.  Luckily, her seizures stopped after a year (though the doctors assure us that they’ll be back with a vengeance at some time).

At age five, Presley began kindergarten, and we found out that she was very smart but had many social limitations.  This is when we began ADHD meds and her life (and ours) changed.  We began to see the sweet Presley we knew was in there somewhere and she began to make friends again.  Our family continued to grow (we have six kids now – yes, God has a sense of humor!) and the house was actually more peaceful than it had ever been.

Today Presley is an active fourth grader.  She takes quite a cocktail of meds each day to keep the Sweet Presley on the forefront and the Impulsive Presley buried down.  From Zoloft and Intunive, to very high doses of Focalin, we get a lot of looks and raised eyebrows from other doctors, but it is what is working for us.

As with many kids on ADHD meds, school gets the best of Presley.  By the time she gets home, she is tired and cranky and we’re not quite sure what to expect day-to-day, though EPM3this is getting better as she matures.  We found that she really needed an outlet to let off some steam and boy, did she find it!  Her impulsivity and anger are heightened being in tight spaces, but when she hits the soccer field, no one can stop her.  She has moved from YMCA teams to a club team here in San Antonio where she plays at a grade level higher than her own and at the top level of that age group.  She makes all As in school and gets excellent marks in leadership, manners, helpfulness and CONDUCT.  She has become a leader in her religious education classes and is wonderful (most of the time) with our younger children.  We could not be more proud of her.

I have been very hesitant to post on the TSC facebook pages because I realize how blessed we are.  I read about parents watching their kids struggle in school, socially or even to dress themselves.  I see posts about surgeries and hospitalizations and hear of drug therapies we know nothing about.  And I don’t feel worthy of telling our story.  My little girl has a pretty mild case of TSC, but it has hit our family hard.  We are blessed that she is bright, has not had kidney issues to date and has limited growths on her precious face, but her future health is not clear.

Whether we are dealing with mild or severe cases of this disease, we all have one thing in common: We want to kick TSC’s butt!  Our family prays for all of you affected by this disease.  We pray that Presley will continue to excel, to go to college without being tied to drug therapies and social boundaries, and to have a long and happy life.  We love our Presley . . . our big Vegas win, and we will fight for her to win against TSC.  Either way, we have truly hit the jackpot.

Why, why, why is it so hard to get my child his medication?

I am an incredible multi-tasker. I am currently writing this blog, on hold with United Healthcare, and having a mental breakdown. Congratulations! You f*&^%$# finally made me cry. I’ve been pissed. But you hadn’t made me cry yet. That took a conjoined effort of United Healthcare, Optum RX, and Accredo Pharmacy.

It started when we got a letter from United Healthcare that they were switching from Medco Pharmacies (which houses Accredo where we get Connor’s Sabril) to Optum RX pharmacies. All mail order prescriptions should automatically switch over. Of course this raised my cautious red flags. So as soon as the change happened April 1 I called to check the status. After talking to a couple different people, it was established that Optum doesn’t carry Sabril (vigabatrin). I was referred back to Accredo. “So everything stays the same?” I asked. “Yes.” I was told. So today I called Accredo to refill the prescription. First time it picks up to silence. So I hang up and call again. Someone answers this time. They would not fill it as my prescription had been transferred over Optum. “Oooookay. So I call them to fix this?” “Yes.”

I call, listen to more piped music, and give all my personal info twice more to Optum to be told that it’s on Accredo to call and ask that the prescription be sent back, and that they should have offered to do so. Call Accredo again. Again, their line picks up to silence, and I have to hang up and call again. More holding. I tell them that they have to call Optum and get the prescription back. They tell me they can’t because I have no active insurance with them after March 31. They still can’t fill it. “So I call united Healthcare and tell them to do what? What exactly do they need?” I’m told to call UH and ask them to open an active account with Medco so Accredo can fill the prescription.

I call United Healthcare, more holding, more giving all my info, lots more holding, trying to explain, getting transferred, and I end up back on the phone with someone at OptumRX again. NOT what I asked for. He again starts the process of refilling Connor’s Sabril. “But two people told me you don’t have it. You’re saying you can fill it now?”

“I have it right here. I’ll take care of this for you.” I wanted to hope for a second, but deep down I knew where this was going again. “Oh, we have the prescription, but we don’t actually have the med.” Yes. Exactly what I’ve been saying. YOU have the prescription, but can’t fill it because you don’t have the med. Accredo has the med, but doesn’t have the prescription or authorization.

Finally, I do what I should have done all along and call SHARE, who works with the manufacturer to deal with prescriptions. They are now working on getting United Healthcare to give an authorization to one of their participating pharmacies so we can refill his prescription. Obviously who I should have called first, but for the love of God, people aren’t psychic. Those of us outside the medical world don’t understand the inner workings. I don’t fully understand the Lundbeck (manufacturer)/Share/Insurance connection. i just know my kid needs his stupid medication. And nobody offered me any instruction on how to handle this. All I got was a letter from my insurance making it sound like a simple switchover.

I guess I am not meant to understand this world of medical mysteries. I suppose I will never know the following:

1. Why a mail order medication can be so difficult to get your hands on, seemingly more difficult and a kazillion times more expensive now than back when people had to get it from Canada because it wasn’t approved here.

2. How a cranial remolding helmet can appear to be covered, I can be charged our uncovered 20 percent, only for United Healthcare to later deny the claim, forcing time to be wasted on an appeal.

3. Why CHOA employees never return phone calls. (Hey Wanda in medical records, it’s been over a month, but fortunately it turned out I don’t need that paperwork after all, so I guess just don’t worry about it.)

4. Why Obamacare doesn’t attack the heart of the country’s issue, which is that hospitals are charging increasingly outrageous prices with no rhyme or reason, operating off of Chargemasters that aren’t standardized or remotely in line with the actual cost of care, and are allowing this medical crisis a major role in the country’s debt.

Et cetera….et cetera…et cetera…

And to top it off, seizure activity is definitely back. I suspected I was maybe seeing very occasional absence seizures, but then yesterday we saw this. So thank you, hospitals and insurance. All the families dealing with health issues can count on you, that no matter how strong they are, how positively they approach their problems, you will always be there to try to break us.

And I guess now, 2.5 hours after getting up, after writing this blog in a mere fraction of the time I spent on the phone this morning, I will finally have my breakfast.