Tuesday, February 10, 2015

Stop the Seizures

We had a good relationships with one of the doctors who treated Ronan. I always appreciated this particular doctor because he saw Ronan first as a human and then he saw all the complications that Ronan had. The complications were plenty, but Ronan needed to be treated with compassion as much as he needed appropriate medical attention. This doctor provided both of those needs.

One year, when Ronan's seizures were increasing, we immediately booked an appointment with Dr. W.  As much as I loathed another appointment, I knew it was important for Ronan to be seen as soon as possible.  On the day of the appointment, Dr. W. and I sat down and together tried to make sense of what was going on. Brainstorming, recalling specific events, reporting changes – even minor ones, factoring in a recent growth spurt, we went over everything we could think of.  We also went over the fifteen minutes we were allotted for the appointment. Other people might have fussed at that, but it didn’t matter to Dr. W.  He recognized that there was a problem, and he knew it would take time to find a solution.  Besides his professional knowledge, recognizing that some appointments would take longer than others was another thing that I appreciated—we were never rushed into or out of our appointments. 

After updating Ronan's medical history but not being able to pinpoint a drastic event or change that would lead to an increase in seizures, we talked about next steps. It didn’t feel like there were any to take, but we had to do something to reduce the seizures.  Despite the little changes since Ronan’s last appointment, one of the steps we discussed was to increase the dosage of Ronan's medication.  I was hesitant, but after being reassured that we’d see benefits, I agreed to a new dosage trial.  I told Dr. W that I had just filled a prescription, so we didn’t need to order a new bottle. I’d just up the dose with what we had and when that bottle was almost empty, Dr. W said he would fax a new prescription to the pharmacy for us. 

We knew it could take a few days for the new dosage to work, so we looked at the calendar and circled a date when we thought we would see seizures decrease and hopefully stop. A week went by.  We expected some seizures to continue to break through, and they did.  I was not expecting them to continue the following week though, but they continued.  Halfway through the second week as they gained intensity and duration, I placed a call to Dr. W’s office.  Dr. W was as confused as we were and asked me to call him in 48 hours if this pattern continued. 

Before increasing the new dosage, the seizures Ronan was having were not very long, but they were enough of them to warrant concern.  After increasing the dose, the seizures were getting longer.  I made another call to the doctor’s office.  Dr. W was with a patient, so the nurse took a message for me.  To make sure Dr. W got all of the necessary information, she asked me several questions.  I thought the last one odd since I had never had to offer the information before, but in retrospect, I am grateful that she thought to ask it: 

“Mrs. Jameson, can you please read to me the label on Ronan’s medication?”

Quizzically, I asked, “The entire label?”

“Yes, Mrs. Jameson.  Please, go ahead,” the nurse requested.

“Okay, it’s prescribed to Ronan Jameson…” I began. 

I gave the nurse his birthdate, the prescription fill date, who prescribed it, the name of the pharmacy, and the dosage and the name of the medica—

Wait a minute.  Something wasn’t right.  The label stated that the medication was the generic version, not the name brand.  That can’t be, I thought to myself.  We always get the name brand. 

I put the bottle down and thought back to when it was filled.  I looked at the date on the bottle and at our calendar.  I thought back to when the seizures began to increase.  Oh no!  Could something as simple as the generic form of a medicine be causing the increase in seizures? 


I was floored.  Then I was angry.  We had requested the name brand, but got the cheaper medication.  The nurse interrupted my frantic thoughts, “Mrs. Jameson?  Mrs. Jameson, is everything okay?”

I told her that no, everything was not okay.  I mentioned that we never got the generic version and when I thought the switch to that version had happened.  I asked her to please ask Dr. W that change could be what is causing the seizures to break through.

The nurse added that to the note and thanked me for the information.  I asked her to rush the message to Dr. W. 

Dr. W called me back and confirmed that for some kids, especially sensitive kids and complicated kids like Ronan, generic meds can cause problems.  Together, we were able to trace back to when the switch from name brand to generic happened.  It was around the same time that Ronan’s seizure activity increased.

Once we figured out how and when and why the seizures were happening, I felt relieved.  Dr. W agreed that from now on, Ronan’s prescriptions needed to always state “name brand medically necessary”.  To make sure that our pharmacist would be made aware of that, Dr. W promised to call him for us. 

Whew.  Problem solved. 

Until the insurance company stepped in.

Since we had recently filled the medication, we had to jump through hoops to get another new bottle filled—this time with the updated dosage and with the name brand medically necessary request.  I thought it would be easy and that Dr. W would just have to override the old request with the new one.  


It was far from easy.  It was hard, and it was cruel.  

The insurance company sent us a message that generic offered the same benefits of the name brand, and had the same qualities of the name brand, and was just as good as name brand if not better!  Um, no.  I told them generic was worse, that it brought on seizures, and that it caused more stress and loads of heartache.  I told them that we didn’t report as many seizures to our doctor while Ronan was on the name brand medication and that our doctor didn’t authorize a generic script.  While trying to resolve this, I placed more phone calls, felt more stress, and watched Ronan have more seizures.  Insurance wouldn’t budge.  Ronan had to use up the supply of the generic before they’d agree to fill the new brand name necessary script.  Not only that, they insisted we continue use of the generic script for at least one full month to really, really, really prove that the seizures were still happening before they’d consider paying for the name brand prescription.

Ronan had to have seizures.  For one full month.  To earn the right to use a safer medication. 

I was absolutely livid. 

Dr. W was upset too.  We both thought, wasn’t one seizure enough? 

Apparently not.  Ronan would have to deal with a full month of seizures before getting the proper care he required. 

Once we were allowed to make the switch to the name brand, Ronan’s seizures subsided.  We finally let out a big sigh of relief.  We also switched to a different insurance company as soon as we were able. 

Sadly, Ronan has had a flurry of seizure activity in recent months.  Medication has not kept seizures at bay.  And with every ‘up the dose’ we try, some seizures still break through. 
I’m still learning all that I can about seizure management.  It can be a very tricky process—some patients respond quickly while others face medication trials, complications, and unfortunate failures.  Something that I’m keeping an eye on, and fully support is cannabis research and treatment efforts.  I am reading positive reports and appreciate that people are making their findings public.  I don’t feel knowledgeable enough on the subject yet to share more than just a hope – I hope that medical marijuana will one day be made available to all who would benefit from it.  I know several children who could be prime candidates for this type of treatment…my son included. 

xo, Cat

The photo above was printed and sent to The First Lady.  To read about the postcard campaign that began February 8th, please visit the #stoptheseizures Michelle Obama Postcard Campaign. 

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