Gluten?

December 27, 2013 to January 31, 2014

Two days after Christmas Gabriela agreed to try a gluten free diet. We didn’t feel gluten intolerance was the cause of Gabriela’s seizures but she was having symptoms of some sort of food related allergies like digestive issues, fatigue, a bumpy rash on the back of her upper arms, she had nearly all of the most common gluten intolerance symptoms.

It wasn’t long before we both noticed that Gabriela’s myoclonic facial twitches had stopped. Neither Gabriela nor I said a word about the absence of these seizures… we just waited. After three weeks I decided it was time to bring it up so I asked Gabriela if I was crazy but I hadn’t noticed her having any myoclonus at all. She admitted that she hadn’t noticed any either.

We both knew that her phase II – depth electrode procedure would be scheduled some time at the end of January or the beginning of February but we had yet to hear from Dr. Fried’s office on the specific date.

After a short conversation about how Gabriela was feeling generally better with the removal of gluten from her diet we both decided that we needed to let Dr. Stern know what was up so we composed a short email to his assistant:

Gabriela and I have discussed the need to meet with Dr. Stern prior to the Depth Electrodes … the reason is because just before the first of the year (nearly 3 weeks now) Gabriela has been eating gluten free … the result is that she’s feeling physically much better but also she is having no noticeable myoclonus or absence seizures ???? (prior to starting the gluten free diet she was having 10 plus myoclonus daily and they were much larger than usual) now mind you we haven’t had her hooked up to an EEG so we don’t know what’s going on behind it all but we both feel it’s something that Dr. Stern needs to know because it is very different.

Please advise us when we will be able to meet with Dr. Stern.

Thanks in advance!!

We sent the email on Sunday, January 12th . On the 13th we received two emails, one from Dr. Stern’s office letting us know they would be setting up an EEG within the next few weeks and the other from Dr. Fried’s office letting us know that Gabriela was scheduled for admittance into the hospital for the depth electrodes procedure on Sunday February 2.

For the next two weeks while we waited for insurance approval and scheduling of an EEG followed by a review appointment with Dr. Stern. Gabriela had less than eight myoclonic facial twitches in a month since she had been eating gluten free.  On January 28th just days before she was to admit into UCLA for phase II (depth electrodes) she had a 20 minute EEG followed by two evenings of phone conversations with Dr. Stern regarding the results.

Dr. Stern said the EEG still indicated irregular brainwave activity lasting three to five seconds at a time and that there was virtually no break in this activity.  He explained it like this… “it’s like a record skipping constantly”.

I couldn’t make this decision and Dr. Stern felt very strongly that he need to call the following evening and speak with Gabriela so that she could make an informed decision.

I didn’t want to move forward and have holes drilled in Gabriela’s head only to find out in a few months it was the gluten all along. But I also didn’t want to waste all the time we had spent getting to this point so close to finding the location of the seizure origin which might even be removable allowing Gabriela to live seizure free for the rest of her life.

Gabriela’s decision was to continue with phase II, she was mentally ready and wasn’t sure she would ever be in this mindset again.

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Getting it Right

When I heard that Aetna would not be offering individual insurance coverage in California starting January 2014 I was concerned. After all, Gabriela’s primary insurance since 2011 has been AETNA and here we are so close to a major surgery that holds so much promise for her!

By the end of October I had spoken with UCLA neuroscience and was assured that primary coverage by Medi-Cal would be acceptable, not just for Gabriela’s surgery but for the follow-up and office visits to Dr. Stern afterwards.

One of the things I‘ve learned about insurance over the last few years is that Medi-Cal operates on a county level as a Health Maintenance Organization  (HMO). This means we would have to select a primary care physician (PCP) who would then need to refer and get an approval for Gabriela to continue to see Dr. Stern.

I started this process in November because I knew we would need time to work through any problems we might encounter … like a PCP that might want to reinvent the wheel or Medi-Cal not considering the surgery a necessity. Not to mention that January 2014 would be the first date that the flood gates would open due to “Obamacare” and there could be thousands of new insured’s all vying for attention and draining the resources of the local Medi-Cal HMO (called “Cen Cal”).

Step one was to make Gabriela’s selected PCP official. Despite Gabriela having seen this PCP for over a year, there is a limit to the number of Cen Cal patients this facility will accept and the approval process can take several weeks.  I successfully argued with Cen Cal that there was a preexisting relationship with this doctor and within days the approval was granted.

We set an appointment for November 6th at 4:30 PM with the PCP. I had tried to impress upon Gabriela the importance of the initial appointment and I called the doctor’s office to caution them that we may be a little late (just covering all our bases). Despite my best efforts, we arrived 20 minutes late and were naturally turned away.

The next available appointment was December 3. We had already lost one month but I kept in mind the reason I had started this process two months early was to accommodate delays even if they were completely of our own doing.

We were the first appointment on the 3rd. The doctor entered, greeted Gabriela then we made our introductions.  Gabriela explained that we were there to get a referral to her existing neurologist, Dr. Stern at UCLA. The doctor explained that she would not be able to oblige because Gabriela would need to be seen by their in-house neurology who would evaluated her to determine if a trip to UCLA was necessary.

Both Gabriela and I tried to explain the situation but the doctor took the position that her hands were tied and if this was so important why had it taken us so long to see her.

I tried to calmly reason with the doctor pointing out that it was within her control as the PCP to refer to a UCLA neurologist and citing the long relationship between Gabriela and Dr. Stern and the upcoming surgery. I also pointed out the fact that UCLA was an “in network provider”.  She held up her hand to stop the conversation telling both of us she would research the possibility of referring outside of the clinic and let us know but that we should make an appointment with neurology at the desk on our way out.

It was difficult to keep quiet and remain respectful … but I repeated silently to myself this is why we started the process so early, bumps in the road were to be expected.

Gabriela and I stopped at the desk and found that appointments with neurology were scheduling out to the end of January.  The lady at the desk understood our urgency and that waiting till the end of January put the timing of the surgery at risk so she agreed to discuss getting an earlier appointment time with the doctor and call us.

In the car we looked at each other and then vented about the appointment and the clear display of disinterest on the part of the PCP.

Before we pulled out of our parking slot I called Cen Cal and spoke with our representative, Joanne. We discussed the problem the doctor felt she had in making a referral outside of her clinic.  Joanne explained that the doctor was probably not familiar with the referral process so she put lengthy notes in Gabriela’s file explaining the guidance needed when this doctor called about referring to Dr. Stern.

I also began the process of filing a complaint with Joanne about the PCP citing her lack of interest and concern and her down-right rude demeanor. Joanne said she would call me back later in the day to finish things up.

Then I called the doctor’s office and left a message with the PCP’s assistant saying that we had spoken with Cen Cal. I explained we had confirmed that the doctor was able to refer us directly to Dr. Stern because UCLA neurology was an in-network provider and if there were any questions then Joanne at Cen Cal was very willing to help.

By late afternoon Joanne called back as promised. She had completed the paperwork to get the complaint filed and in the process checked Gabriela’s file. She had noticed the referral request had been placed by Gabriela’s PCP immediately after our call to her assistant.

I held off on the complaint.

Now I had to start tracking the referral through the approval process. My first instructions from Cen Cal were that the approval or denial should happen by the end of the week. Ozzie was my Cen Cal contact during this process.  When I called on Friday Ozzie told me that the referral had been denied! The explanation was Aetna had apparently coded Gabriela as an active member which turned Cen Cal into  secondary insurance making the referral unnecessary. Ozzie told me to do a couple of things; the first was to get a letter of termination from Aetna that he could submit internally and, second,  to contact the “Ombudsman.” He gave me the phone number and told me to explain the situation to them  because they can usually work with Aetna and Medi-Cal to get the coding changed quickly. We agreed to talk again Monday morning.

It was too late to call Aetna, so I went directly to the Ombudsman and left a message. They returned the call and said the coding should be corrected by Monday and when everything was verified they would let me know.

Before dinner I went to Aetna’s website and sent an email to customer service asking that they send a letter of plan termination via email to me. Then I sent an email making the same request to Aetna’s customer service supervisor who had managed to get my reimbursement payments sent.

By Saturday morning I had received a plan termination letter from Aetna and a plan coverage certification indicating that the plan had ended 11/01/2013. I realized that my skills in responding effectively to insurance problems from those early days to now have completely changed.

Monday morning the Ombudsman called. She had confirmed the coding was now correct and Aetna was no longer primary insurance. I faxed the two letters from Aetna to Ozzie at Cen Cal and he also confirmed the code changes. Gabriela’s referral to UCLA and Dr. Stern was approved.

Then I emailed UCLA and asked what additional assistance they would need now that the referral was approved.  The emailed response I received was “we’ve got it from here.”

Beautiful!

Last but by no means least, the thought had occurred to me that because Gabriela sees a psychiatrist and therapist who are both covered by Aetna but neither by Cen Cal I would ask Medi-Cal/Cen Cal to do a single case agreement for both of these providers.  I started with Ozzie at Cen Cal and asked if he could help. He explained that Cen Cal does not handle the behavioral health aspect of Medi-Cal but gave me the phone number to C.A.R.E.S. in Santa Barbara.

I called, “Hi, I was given your phone number by Cen Cal who has been my daughter’s secondary insurance for years and has recently become her primary insurance because her Aetna plan ended at the end of October. We have successfully taken care of coverage for all of her medical needs however she has both a psychiatrist and therapist who she has been working with for years who are not Medi-Cal provider. I would like to begin the process of establishing single case agreements for both of these professionals in order to insure continuity of care. Can you help me with that?”

Response, “uh, oh.” Then a short silence. “ You will have to call quality, they will be able to help you.”

The customer service agent gave me a phone number and I asked her what I should say to them?

Her response: “Do just what you did … Do that, it’s perfect.”

Learning to speak fluent “insurance” is essential. Because I now understand the process it took only 20 days to completely move Gabriela’s coverage and make sure every “I” was dotted and every “t” was crossed. The date for Gabriela’s surgery is looking like somewhere between end of January and the beginning of February.

I’m very optimistic about Medi-Cal coverage for Gabriela’s on-going behavioral health providers … it’s all about understanding the plans and speaking the language.

 

 

 

 

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Talk About It

In honor of epilepsy awareness month I have listed below enough facts about epilepsy for everyone that reads my blog to post at least one fact a day to your Facebook page for the rest of November.

Epilepsy is usually not a lifelong disorder, with only 25% of those who develop seizures developing difficult to control seizures. And in my experience, those who have lifelong seizure disorders have more serious conditions at play.

Most people with epilepsy do not have brain damage.

Epilepsy is usually not a lifelong disorder, only about 25% of those who develop seizures have difficulty controlling them.

The proper treatment for someone having a tonic-clonic seizure is not what you see in TV shows (multiple people pressing their body weight down on a seizing person). Here’s what you should do: Pay attention to how long the seizure lasts, move objects that they could strike out of the vicinity, simply block their way to prevent them from moving too far (or into water, fall off a bed, etc.). Put them on their side after the episode and don’t put anything in their mouth. If it lasts for more than five minutes call an ambulance.

Seizures have a beginning, middle, and end. The beginning, referred to as the aura, can have signs of the oncoming seizure such as smells, sounds, tastes, and lightheadedness are some of the most common. The middle, is the seizure itself, whether it is a grand mal seizure, or a simple partial seizure. The end of the seizure is called the postictal phase and is the brain recovering, which can take anywhere from seconds to hours and is usually accompanied with disorientation and memory loss and sometimes psychosis, anger, or sadness.

Only in about 30% of cases is the cause of epilepsy determined. The other 70% remain unanswered, in what is referred to as idiopathic epilepsy.

Everyone is born with a seizure threshold. If your threshold is high, you are less likely to have a seizure. However certain activities or things, known as triggers, can lower your threshold, such as drinking alcohol, sleep deprivation, stress, illness, flickering lights and hormones (for women mostly) can have an impact on your seizure threshold.

Like a diabetic who is misinterpreted as a drunk driver, epileptics can often have a seizure that manifests itself as bizarre behavior, such as: repeating the same word, not responding to questions, speaking gibberish, undressing, or screaming.

You cannot swallow your tongue during a seizure; you cannot swallow your tongue now, can you?

Single tonic-clonic (otherwise known as grand mal) seizures lasting less than 5-10 minutes are not known to cause brain damage, contrary to the belief that seizures cause brain damage, they are actually more likely to stem from head trauma.

The ketogenic diet, created in the 1920s and still used today, is one of the oldest treatments for epilepsy. This diet simulates the effects of fasting, which decreases the frequency of some types of seizures.

Some types of epileptic seizures are so brief, they go unnoticed. Absence (“petit mal”) seizures can last only two to 15 seconds, during which time a person might stare blankly, blink or pick at his clothes. Then he’ll resume his business, having no recollection of the seizure.

By 1914, 12 states had enacted Harry Laughlin’s Model Eugenical Sterilization Law. It forbade people with seizure disorders, along with those who were “feeble-minded, insane, criminalistic, inebriate, diseased, blind, deaf, deformed and dependent,” to marry or have children. The law also allowed people with epilepsy to be sterilized.

Epilepsy is some times called “The Writer’s Disease” because many famous classical writers had epilepsy, including Sir Walter Scott, Edgar Allen Poe, Lord Byron, Percy Bysshe Shelley, Lewis Carroll and Charles Dickens–to name only a few.

The Greek Physician Hippocrates wrote the first book on epilepsy, titled On the Scared Disease, around 400 BC. Hippocrates recognized that epilepsy was a brain disorder, and he spoke out against the ideas that seizures were a curse from the gods and that people with epilepsy held the power of prophecy.

Epilepsy is a neurological disorder that effects 1% of the population below is a list of well known people with epilepsy: Joan of Arc, George Gershwin, Harriet Tubman ,Julius Caesar, Socrates, Prince, Lindsey Buckingham, Lil Wayne, Neil Young, John Roberts, Danny Glover, James Madison, Napoleon Bonaparte, Alexander the Great, Dostoevsky, Flrence Griffith Joyner (FloJo), Truman Capote.

Epilepsy research is massively underfunded!

Epilepsy is not contagious

Epilepsy first aid does not include putting anything in the person’s mouth or restraining them forcefully

There are many ways in which epilepsy can be treated including medications, diets, and surgeries.

1 out of 10 people will have a seizure in their lifetime.

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Lemonade for Epilepsy

I think everyone knows I am a huge fan of Dr. Stern and UCLA’s neurology department.  With that said there was a situation that came up a few weeks back that caused me sit back and think. It started when a client very kindly wanted to donate to a non-profit and asked if I could direct her to one that was related to epilepsy research that I feel strongly about. Naturally I thought of UCLA .

During that process I had an idea to offer my self-published book to epilepsy non-profit sites and for each book sold I would donate 25% of the proceeds to that site. It solves my problem of wanting to publish my blog into a book and donating to epilepsy research.

So I made an appointment to talk with the fundraising side of UCLA neuroscience and present my idea. The young lady from UCLA that I met listened with great interest. She asked that I send her some examples of other non-profits that do the same thing so that she could have all the information when she presented the idea to her boss. When we finished our meeting she assured me that she would have an answer by the end of the week.

I left the meeting feeling pretty good, knowing that I had been assured by others that UCLA supports my blog as well as the printed book. I made sure I sent the requested examples of non-profits that solicit sales of specific products through their sites.  A few of the best examples are  the Komen for the Cure site which has online shopping and the Humane Society  which states on their home page “Highlighted below is a list of companies that offer great products and services that generate extra revenue for our animal protection programs. Start shopping today and show your support.”

At six o’clock Friday evening I received the response from UCLA: No, they would not be willing to point anyone to my book … nor would they be willing to make any introductions to affiliated non-profits. They were however very excited; golly gee I could collect donations from all my friends when I run my marathon!!! Or better still I could join some epilepsy support groups and at the end of those meetings I could sell books to the members and donate from that!!!

It was all I could do not to respond with a sharp … “Oh boy, and I could open a lemonade stand on the street corner each weekend as well!” But I held my tongue (until now).

At the same time I received that email on my television was a Susan B. Komen advertising to buy all things pink. Unbelievable, I thought! [Here’s breast cancer working the system while] epilepsy research needs money desperately.

This rejection by UCLA really made me think. If the goal of epilepsy non-profits is to “de-stigmatize” epilepsy and to fund research then not adopting an affiliate program seems either outrageously stupid or ridiculously superior. In either case the boat is being missed.

Here is a very clear chart I grabbed from State of Research in the Epilepsies – 2013 which makes the point painfully obvious that EPILEPSY RESEARCH NEEDS MONEY.

Screen Shot 2013-11-05 at 10.04.38 AM

When my offer to donate a percent of the proceeds of my book to UCLA’s epilepsy research was flatly turned down I had expected it. But what I didn’t expect was the nose in the air kind of attitude I was sensing and the refusal to even make introductions to affiliated nonprofits whose donations might benefit from offering my book in addition to the child-like encouragement to go open my lemonade stand.

It’s not just sour grapes at how dare they turn my book down (it is, after all a brilliant work of staggering genius) it’s the constant drumming in my head that epilepsy needs to be de-stigmatized and research needs donations. While this is a mantra I’ve heard over and over again (much of it from UCLA) it seems that what little is being done has hardly any impact at all.

In 400 BC Hippocrates wrote about epilepsy which at that time was called the “sacred” disease because it was viewed as a mysterious affliction of divine origin and I don’t think the average person today has any more understanding of epilepsy to view it much differently.

The only way to demystify anything is through education and promotion but I don’t recall ever seeing a single commercial about epilepsy. As a small start on changing this I decided that I was going to post a fact about epilepsy to my Facebook page every day during the month of November which is Epilepsy Awareness Month. So if everyone would please go to my Facebook page and “Like” and “Share” each post that would help.

Another thought: Because money is needed for research and education is essential, using every possible donation method out there including the“affiliate” programs is absolutely necessary. How cool would it be to see purple ribbons for epilepsy on the back of cars … or purple tee shirts with some great neuro graphic with every purchase automatically contributing to a non-profit to benefit epilepsy research.

Epilepsy research needs a better voice and all the help it can get. What do you think? What can we do to generate real awareness and support?

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Neurosurgeon

October 2, 2013

Confusion surrounded the setting of the October 2, appointment with Dr. Fried, the neurosurgeon who will be placing the depth electrodes in Gabriela’s brain.  Originally the appointment was set for October 2, at noon.  Then a few weeks later we received an email stating that since no time had been set for the appointment would 11:30 work … then the automated call confirmed the appointment for 11:00.

After receiving three different times Gabriela sent an email to the young lady in charge of scheduling explaining that she had received a variety of appointment times but that we would arrive at 10:30 just in case the time was to change again.

The whole appointment was feeling very disorganized which was uncomfortable for me … I’ve always pictured neurosurgeons as meticulous, detailed, OCDish.  Just the event of setting the appointment and being told originally by Dr. Fried’s scheduler that we would meet the doctor at the end of September and that the surgery would then be set for October hadn’t happened.

But we also knew that Dr. Fried was excellent because we knew that Dr. Stern would tolerate nothing less for his patients.

Gabriela and I had decided that her new independent living case manager should be included in the appointment to discuss any issues related to Gabriela’s care after the procedure.

The three of us were escorted into the exam room by a nurse and her young trainee. After a few minutes of introductions and conversation regarding the nurse’s South African accent, Dr. Fried joined us.

He introduced himself in a thick Israeli accent, smiled and proceeded to explain to Gabriela that because of the lack of conclusive test results in phase 1, the team had decided that she was a good candidate for phase 2, or depth electrodes.

He explained that even after completing this phase there was a possibility that there may still not be enough information gathered to do surgery or that she would not advance to surgery at all.  But that there was a more involved procedure requiring removal of a part of the skull and putting a mesh of closely placed electrodes directly on the brain. If that gathered enough information then the patient would go directly into surgery. However, if the depth electrodes produced the needed information she would be allow two to three months of recovery before the resection surgery would be scheduled.

The surgery was not without its risks he cautioned. There is always a possibility no matter how minor, of an infection in the brain.

“Do you wish to continue?” He asked.

Without hesitation Gabriela answered, “Yes.”

Dr. Fried explained that first Gabriela would have an MRI to identify the location of all veins in her brain and alter any planned paths for the electrodes to avoid these areas. Then she would have a metal rim screwed into her skull to help guide the electrodes into place.  He would drill six holes about 2 cm in diameter on each side of her head.  Then the electrodes would be inserted and Gabriela would spend 24 hours in ICU before they transferred her onto the epilepsy monitoring unit (EMU) where they would again induce seizures. When they had collected enough data the electrodes would be surgically removed and she would spend another 24 hours in ICU before going home.

As a precaution Gabriela needed to be in good health and have a dental checkup to make sure there were no cavities. All of these were to minimize the risk of infection.

Then Dr. Fried referred to Gabriela’s file … “Oh, you have damage to both sides of your brain.” “Oh, they feel the origin is on the right … but you have damage to both sides.” (I’m not sure how necessary it was to repeat to Gabriela that she has brain damage, non-the-less it was all so clinical to the doctor).

Then he asked if there was any history of psychological issues … and Gabriela chuckled and I just said, “Oh ya.”

Dr. Fried stopped what he was doing and was fully focused wanting more details.  I started to explain, telling him that for nearly two years Gabriela had suffered multiple psychotic breaks and was institutionalized for a long period and that Dr. Stern had more details and all the authorizations needed to speak with any behavioral folks in regard to Gabriela.

Dr. Fried left little to be questioned … we asked if he had any specific aftercare instructions.

“No, a few days to a week take it easy.” He said with a warm smile.

“And is there any instruction for care after the resection surgery?” I asked.

“No,” He swayed his head from side to side, “Maybe for one week have someone stop by to check on her.” He was so matter-of-fact.

After a quick exchange between Dr. Fried and the nurse, they agreed that surgery would probably be in January sometime. He smiled and nodded to each of us and was out the door.

After Dr. Fried left the room I calmly asked the nurse about the recovery instructions … “One week of aftercare wouldn’t have worked out for Sandy and Neil.” I knew our nurse knew these people well because Neil had mentioned her frequently.

Sandy had just finished a resection surgery at the end July and had been doing well for the first two months. Then suddenly one night she had several seizures, one after another. Her husband Neil who I knew through a caregivers support group that was started by UCLA, called 911, Sandy was taken to a hospital, where they stopped her seizures but she had a postictal psychotic event that lasted several days and was very hard on both of them.

I knew the nurse wasn’t going to respond because of HIPPA restrictions but I wanted her to know I wasn’t happy about the quick careless response from Dr. Fried regarding aftercare. Then it occurred to me that Dr. Fried had responded only to the recovery time from surgery and not to the recovery time as it related to the seizures.

January wasn’t that far away … Gabriela was glad to be moving closer to her surgery.

On the other hand, I’m more than just a little frightened despite knowing that some 70% of the people that have undergone this surgery live a seizure free life and that 25% have vastly reduced seizure activity. It’s that small 5% that bothers me.

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Some Answers

September 23, 2013

After completing a functional MRI Gabriela and I were ready for the appointment with Dr. Stern and his wrap up of all the testing Gabriela had gone through over the last six months. First he checked to see how Gabriela was doing on Vimpat, the new medication she had started while in the hospital back in April. We told him that we had adjusted the times she took her medications because of nausea and he decided that a slight reduction in her morning Lamictal would probably provide some relief while not putting Gabriela at risk of break-through seizures.

Then he told us that the MEG MRI along with the neuropsychological testing and the functional MRI had not shown a conclusive surgical location, just a narrower vicinity of seizure origin.  All the indications were that origin was on the right side but it was difficult to see if it was coming from the temporal lobe or frontal lobe.  He cautioned us not to be discouraged.

Then Dr. Stern asked Gabriela’s permission to put her into phase II testing. This would consist of drilling 12 holes in her skull and he used his index finger and thumb to illustrate the size of each hole which would be about the size of a large blueberry. After that electrodes would be surgically inserted through the holes directly into Gabriela’s brain. Then she would go back into the telemetry unit where seizures would again be induced. Gabriela didn’t hesitate when she agree to continue.

Gabriela asked Dr. Stern if he would be involved in the actual surgery.  He smiled and said he would be planning the entire event and that he would manage the process and supervise every aspect of the procedure including where each of the electrodes was to be placed. He smiled and said he would be leaving the actual surgery to the day crew.  We all laughed.

More seriously he explained that in many cases even the depth electrodes don’t produce enough information for surgery, but there were options beyond that and at the end of all the testing even if surgery was ruled out there were other choices.

Gabriela asked, “Like a vagal nerve stimulator?”

I interrupted Dr. Stern as he started to answer, “Gabriela you’ll win a lot more points with Dr. Stern if you call it a vagus nerve stimulator.”

Dr. Stern looked surprised that I knew this was a pet peeve of his. I had been told by Dr. Young that it made him crazy when people called it “vagal” because there is no such nerve in our bodies, only a vagus nerve. Dr. Stern continued with a short explanation of a few of the many new promising devices on the horizon.

To wrap up the appointment Gabriela wanted to get a few topics cleared by Dr. Stern. First was alcohol; Gabriela felt she should be allowed to have an alcoholic drink, after all she is 24.  He told Gabriela that he believes that she should be able to live as close to a “normal” life as possible and that that would include drinking moderately.  I asked that he fully define “moderately”.  He smiled and explained that she could have one drink during an evening but no more and that she could have a maximum of three drinks in one week but not all in the same day and not on consecutive days.

The next topic for Gabriela was pot; could she smoke it? Dr. Stern told her that smoking pot was ok, but again cautioned her that she needed to be moderate in consumption. They discussed the recent news that pot could actually help seizure disorders but Dr. Stern pointed out that the most recent medical study on this had been done in the 1970’s and new studies were needed to validate the claim. He did, however, agree with Gabriela that stress is a trigger for many people with seizure disorders and that smoking pot could help with that.

Finally Dr. Stern scheduled a follow up appointment for when Gabriela would be back in the hospital on phase II.

We left feeling both excited and nervous…  we would be meeting with Dr. Fried on October 2, to discuss the electrodes I could feel Gabriela’s excitement at the possibility of a surgery that could reduce or even eliminate her seizures.  I just knew that along with that hope there was also a small chance that it could make her seizures worse.

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A Couple of Things

First I will continue to add updates to the blog as new events or news happens although it will be less frequently than the past.

Second the Introduction and Prologue posts are finally complete and at the front of the posts but you can get to them by clicking here.
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Epilogue

As of this writing it has been 1 year, 9 months, and 4 days since we entered The Eye of the Storm. That’s 925,920 minutes since Gabriela demanded that we went looking for a church and Holy water and I’ve endured every single one of them. Now that Gabriela is recovering from the psychological effects of being misdiagnosed and incorrectly medicated and is returning to me and to the world and knowing surgery might cure her epilepsy I finally feel like a normal life is possible for both of us. Gabriela and I can finally see light at the end of the long, long tunnel we’ve been through.

When I look back at everything that has happened I am amazed that Gabriela and I got through it in one piece. If I had to deal with it all over again I know I would make some different decisions but at the same time I know there were definitely things, regardless of the reality training I’ve been through, that would remain just as difficult and probably have the same outcome.

I have learned so much about medical professionals, insurance companies, mental health, social security, Medi-Cal, and independent living assistance. For example, regarding medical professionals and doctors specifically the most significant thing I learned is that doctors are not always right and they are not always engaged with their patients.

Finding a doctor who will actually serve their patients’ needs should be approached more like hunting for a mechanic for your car. As consumers we all have no problem in asking questions before selecting our auto mechanic, why then would we not ask questions before selecting a doctor?  Perhaps it’s because, in general, we are referred to doctors by other medical professionals so we assume they must be the right one and that is wrong.

But even more important in choosing the right doctor is to not assume that they are always right … the mystique of the doctor needs to be stripped away. I remember when Gabriela was just a baby, less than one year old, my ex-husband and I had picked our family doctor because he spoke Arabic (my ex- didn’t speak English at the time) and we had heard that this doctor was a good choice.

Well, it didn’t take long before I had to take Gabriela to the emergency room at Children’s Hospital because I had followed our doctors’ orders. He had advised me to keep her on a liquid diet for seven days in order to stop her diarrhea. Then, when we saw the ER doctor, he scolded me because he said I was starving my daughter.

Out of frustration I blew back at the doctor loud enough that the staff in the ER came out of their exam rooms to listen as I explained to him that I was following the directions given by Gabriela’s doctor and that doctors are perceived by their patients as “all knowing” who was I to think that our doctor didn’t know what he was talking about. Well, the answer was and is simple: I’m her mother, I’m the person who cares most about her in the world, and I’m the one that should make damn sure I pick the best doctor for her.

I have interviewed every person who has interacted with my daughter throughout her life from counselors, through ballet schools, swimming lessons, on and on but only once did Gabriela and I decide to interview a potential neurologist. Gabriela was in high school at the time and had been having seizures for three years or so and had been through just as many neurologists. We had been told by our insurance company that there was a neurologist in their program available to her, Gabriela decided that she wanted to make sure she liked their choice and would be interviewing the doctor before she would make any decision. Prior to the appointment Gabriela and I collaborated on a list of questions for the doctor, during the first appointment I remember the neurologist coming into the exam room, file in hand and greeting Gabriela as she read her name off the chart. She read further and began to ask Gabriela questions related to seizures when Gabriela interrupted her and explained that she wasn’t here for an exam but had a few questions to ask before she would make a decision on who her next neurologist would be.  The doctor was caught so off guard but respectfully answered each of Gabriela’s questions  and then told us that she would like to be Gabriela’s neurologist if that met with Gabriela’s approval and, if so, would like to see her again in one month.  In the end we didn’t pick that doctor because she did what many doctors do, she designed a treatment plan that very day without any more than a glance at the chart.

So how the heck did we ever end up picking Dr. Wreck?  She was brought to our attention by my sister and if people consider me picky about who interacts with my daughter they haven’t met my sister. I am dwarfed in pickiness by my sister who was a nurse and changed paths to become an attorney. We Googled Dr. Wreck and found no derogatory reviews only accolades and she headed the adult epilepsy program at her hospital. I will say that when we met her the first time I had asked what made her want to be a neurologist and an epileptologist specifically and her response wasn’t what I wanted to hear: “Because I showed an aptitude toward reading EEG’s”.  I had wanted her to say because it was fascinating or important work or she had a family member with epilepsy but to Dr. Wreck this was just a job.

So how should you select a doctor today? You should make sure your doctor is board certified, does he or she have a specialty, and if there have been any complaints filed about them. Each state handles complaint information and its availability about doctors differently. For instance, in California little information is available on-line but you may call the medical board at 916-263-2525 and make inquiries.

If you are satisfied with what you have found out up to that point then move on to a short interview with your prospective doctor and let them know it is an interview. Ask them who their typical patient is and what hospitals have they been and currently are affiliated with. Where did they receive their degree? Also remember that sometimes the nicest doctors can be incompetent while a rude doctor can be SO competent. You have to decide what you are willing to put up with.

Also be aware that if you feel restricted to providers offered by your insurance policy, there is the option to go “off list” and use a medical professional who you feel is a better fit by having your insurance company set up a “single case agreement”. In order to do this you may have to support your reason for making such a request.  I had Gabriela’s therapist, Perie Longo, set up in this way and the supportive reasoning I used was that she had provided therapeutic care during Gabriela’s stay at Tranquility which would help provide continuity of care. I know it sounds crazy for me to have agreed to any faculty member from Tranquility after what Gabriela experienced there but Perie was a rose among thorns. She had conducted only one therapeutic session per week at Tranquility but was Gabriela’s favorite. It has turned out Perie was and is still a great choice.

Looking for a mental health facility has its own set of hurdles. Again, if you have insurance you should start by calling the behavioral health department within your insurance company. If you do not have insurance then start by contacting your county’s managed healthcare department.

One of the complicating factors in locating a good behavioral health facility is that typically something has happened that created the necessity to place your loved one under care, so there’s usually not the luxury of time to spend preparing — the need is NOW! Unfortunately there is no comprehensive list of behavioral health facilities available that I have found and there are no wonderful nonprofit that will help you wade through the glossy pictures that you’ll find on-line.

You can call NAMI (National Alliance of Mental Illness) and they will truly try to help but social workers within behavioral hospitals seem to have more of a finger on the pulse of what’s available.

Once you have found a few facilities that might be a good fit be aware that for the most part they are private facilities and are a for-profit business and that the first person you usually wind up talking with is their sales person who is not concerned with the appropriateness of their facility for your needs; they will just want to close the deal.

I believe it is imperative that you schedule a tour of any facility that may be of interest and the tour should include not only the treatment facility but also the residential facilities. If you are given the line that they are not able to allow tours because of HIPPA (The Health Insurance Portability and Accountability Act) walk away. Any argument that HIPPA is the reason is nonsense because the act just protects the privacy of the patient by not allowing tours while clients are on premises and they can easily schedule tours of both the residence and treatment facility during hours when the clients are not there. You should also speak with the clinic director, the psychiatrist, and a few of the therapists just to get a sense of how they operate.

It is important to know how many clients they have in the residence and how many in the treatment facility, what the mix of male to female is, along with the mix of behavioral issues. You will want a facility that handles client who are similar in issues, for example, if depression is the issue you will want a facility that deals more with mood disorders.

If they say they combine and take all of these plus addicts, as Tranquility does, head for the hills because they will only have one set of rule for everyone and, as in the case of Tranquility, everyone gets treated like an addict whether they are or not, this would be like removing the gallbladder for everyone that goes into a hospital complaining of abdominal pain. It works wonders for those patients that have gallstones but doesn’t help the person with appendicitis.

How long does a typical client stay? What do they provide in the way of aftercare? Ask for referrals who would be willing to speak with you regarding their experience and contact as many as you can. Talk to them about what life was like in the residence and what was treatment like, and what they got out of it. Talk with their family and find out how inclusive it was for the family.

And again, remember you may always arrange a “single case agreement” if you find a great facility that may not be covered by your insurance.

Lastly, independent living assistance … this is a crap shoot.  This is just as hard as trying to find a great child care provider. As with childcare the provider you’re looking for will be unmonitored during their work day and generally people who require assistance in living have challenges that prevent them from fully understanding when a caregiver’s behavior is inadequate or inappropriate.

Gabriela and I are still working our way through this one because after her departure from Tranquility we were assigned an agency rather than being allowed to interview and select one. The experience we had with that first agency was a series of hard lessons learned over nearly a year.

Despite the fact that the case manager had assured us that she and the staff would be taking over management of everything from doctor appointments, Social Security, housing, Medi-Cal, public transportation, and more they failed to honor their commitments. Finally, after ten months of working with Gabriela, that provider dropped her without even providing reasonable transitional care to the next agency and gave less than the required 30 day notice which forced me to take over all caregiver responsibilities for Gabriela.

That was when I discovered her Social Security income was being lowered, her place on the housing assistance list had been cancelled, her Medi-Cal primary doctor had never been contracted, she had no “life-line” home phone installed, and she still hadn’t received a disability bus pass.

This was despite that fact that I continuously monitored Gabriela’s living conditions.  I visited Gabriela at her apartment as often as I could and I tried to make these visits appear as casual as possible. I always checked out her fridge (usually when Gabriela was out of the room for a while) to make sure food was stored safely, nothing was past its expiration date, and if the food was fresh. After throwing away anything that was not OK I could clearly see if there was enough food. This was a key indicator as to whether the caregivers were doing their job.

I also cleaned Gabriela’s apartment not just because I was a helpful mom but because it allowed me to see what was not getting done and let me look in every nook and cranny.  I would also ask  Gabriela about what she had done during the days when I hadn’t seen her, encouraging her to give me as much detail as possible about who the staff was, where they went, how they got there, and what was discussed.

This was how I eventually found out that the staff and case manager needed a tremendous amount of direction because it turned out that they were just “hanging out” and Gabriela wasn’t learning how to live a truly independent life. As a result I produced a weekly schedule assigning tasks to each staff that needed to be accomplished with Gabriela during their shift. This included meal planning, laundry, cleaning specific rooms, and cooking.

We felt that Gabriela’s first case manager was poorly trained in how to handle a client with her medical condition and the developmental delays it had caused so we looked for a more professional agency with better-trained management team and staff.

We started interviewing candidate providers to see if we and the provider fully understood each other’s concerns and requirements. We also wanted to know what type of training each of the staff was required to complete. What was the availability of the management should there be a situation that arose the required attention? What was their process of dispute resolution between staff and client or case manager and clients? How were medications handled? How were doctors’ appointments handled? Who dealt with housing concerns, social security, and Medi-Cal?

I know it sounds overwhelming but in reality it’s actually very achievable. Gabriela now is almost completely self-maintaining. She still has a few issues like staying on a budget but that’s pretty normal for a 24-year old. She lives in an apartment with a roommate, participates in her community, and is just about to finish school.

It’s been a rough couple of years for both of us and I’m often asked what made me stick to it so relentlessly.  My answer is simple; Gabriela would have done the same for me.

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79: Let the Seizures Roll

November 2012 to April 26, 2013

November through January was quiet. Gabriela and I enjoyed the holidays and the lack of rules and restrictions we had struggled with over the last year. Gabriela worked hard on learning how to enjoy life and I worked just as hard at trying to step back and let her learn how to do it on her own being careful to lend support only when she needed it.

In February we had our scheduled appointment with Dr. Stern, Gabriela’s neurologist, to discuss the results of the 72 hour mobile EEG monitor Gabriela had back in October. Dr. Stern told us the results indicated slightly pronounced activity on the right side of Gabriela’s brain which supported Gabriela’s previous EEG results and Dr. Stern’s belief that Gabriela might have been misdiagnosed as having primary generalized epilepsy, which means her seizures have no specific point of origin, when she might have focal seizures, which have a specific starting point in the brain.

Then we looked at the seizure calendar I had asked Gabriela’s staff to maintain and I explained to Dr. Stern how to read the notes. When I told him all myoclonus mentioned were facial unless otherwise indicated he interrupted me and said that he had assumed Gabriela’s myoclonus were more in her trunk. Looking shocked at the possibility he had misunderstood, he waited eagerly for either of us to answer. “No” we said almost in unison.

Bingo!

With all the excitement that a neurologist is capable of expressing he asked Gabriela if she would be willing to go into the hospital for about seven days. He wanted her in the Telemetry Unit for monitoring because facial twitches, myoclonus, or grimaces were additional indicators of focal seizures and if there was a definite point of origin then surgery that could reduce or even stop Gabriela’s seizures was, so to speak, on the table. This was huge!

On Gabriela’s first day in the telemetry unit she was hooked up to an EEG, blood tests were run, and she had an intravenous port inserted in case of any emergencies. Once she was situated Dr. Mosley, the neurologist in charge, came in for introductions and to collect some seizure history. He also explained what to expect during Gabriela’s stay.

He told us that each morning a team would gather to discuss and review all of Gabriela’s recorded data from the prior day. Then, after meeting, they would join us in Gabriela’s room and fill us in on whatever they had found and let us know of any changes to her routine they wanted.

On the second day, at about 9am, a crowd of doctors and nurses filed into Gabriela’s room. After they introduced themselves Dr. Mosley told us the previous day’s monitoring had recorded many examples of Gabriela’s myoclonus, which are abnormalities in brain waves that never truly rise to the level of a full seizure. He said that now they needed examples of both absence seizures, which are more commonly known as “petit mal” and usually consist of a few seconds of blankly staring into space, and tonic-clonic seizures, also known as “grand mal”, in order to have a more complete picture of Gabriela’s epilepsy. To achieve this they were going to start rapid reductions of Gabriela’s anti-seizure medications in order to produce more seizure activity.

First they would eliminate the Depakote and reduce the Onfi by half. The next day they planned to eliminate the Onfi completely and reduce the evening dose of Lamictal by half. Then, if needed, the fourth day they would completely stop the Lamictal which meant that all anti-seizure medications would be stopped.  Dr. Mosley also told us that if there was not enough seizure activity by the end of the second day they would start a variety of other approaches to produce the needed seizures.

This was Gabriela’s third hospitalization in a monitoring unit. She had been observed by Dr. Wreck twice back in 2008 and 2011, and the difference between UCLA’s unit and the one run by Dr. Wreck was night and day.  We had been instructed by Dr. Wreck that Gabriela would undergo the same medication reductions and process of inducing seizures but in reality Gabriela had merely been hooked up to an EEG and watched on a video without seizures being induced at all and there never was a “team” approach to treatment; Dr. Wreck was a solo performer. The outcomes of both monitoring stays under Dr. Wreck’s supervision were simple dosage changes to the same old medications.

UCLA had a different approach; they wanted to strip down Gabriela’s medication in order to produce seizures which would help them diagnose and develop a treatment plan specifically for her. Despite the fact that Gabriela and I both knew this was going to be emotionally rough we were ready for it.

In the morning Doctor’s meeting on the third day they told us that the prior day’s seizure activity had been uneventful. They had just seen more myoclonus so they were going to have Gabriela perform hyperventilative breathing (that’s breathing in short, quick, shallow breaths for five minutes) every hour and she would not be allowed to sleep during the day or until after 10 pm when she would be allowed to sleep for only four hours.

For this hospitalization Gabriela was confined to her room so she could be continuously recorded on video while she was plugged into the EEG. She was dressed in a light weight seizure vest which strapped her to the bed which had padded railings on the sides. She was only allowed out of bed if she needed to use the bathroom or for her daily walk round the ward, both which were only allowed with assistance.

For ten years my job had been to prevent Gabriela from having seizures but now I had to sit by and watch as seizures happened and all I could do was make sure that Gabriela was as comfortable as possible during the ordeal. I even had to speak out to the video monitors when I noticed any unusual seizure activity so they could mark the time and date of each event on the video.

Finally, after three full days of waiting, Gabriela was having very pronounced myoclonus, similar to the ones she had had in July the previous year when she had had her last tonic-clonic seizure so it was clear to me on the fourth day the doctors would be getting what they needed, I was sure she would have a seizure for them today.

After my description to Dr. Stern of Gabriela’s last tonic-clonic seizure he explained that the progressively worsening myoclonus may be Gabriela’s “aura”. Every other doctor that had seen Gabriela had asked if she had any forewarning or “aura” but they all had explained it as an unusual smell or taste prior to a seizure. It wasn’t until Dr. Stern explained that an “aura” could take many forms including depression, irritability, nausea, or even a tic that we realized that the myoclonus that had preceded Gabriela’s tonic-clonic seizures was, her aura. Because the worsening myoclonus typically stretched over several hours and because it was hard to watch without being able to medicate Gabriela in order to stop it, I needed to go for a short walk outside.

When I returned about half an hour later Gabriela’s myoclonic jerks and loud, uncontrolled groans were very close together so I knew a seizure was going to happen soon.

The attending doctor, Dr. Eliashiv, came into Gabriela’s room, warmly greeted us, then watched as Gabriela erupted in a combination of jerks and groans. When it was clear that Gabriela was done for the moment, Dr. Eliashiv said, “It will be any minute now.”

She was right and it wasn’t more than a few minutes after she left that Gabriela had a full tonic-clonic seizure. It was rough for me to just watch while Gabriela endured this but the doctors needed all the information the seizures would provide.

Gabriela never remembers having a seizure so I have always had to explain to her what happened and then we go through an assessment of how she feels physically. After that seizure she was hungry and because we ordered her dinner prior to her seizure it had arrived just after she recovered.  While she sat up in bed eating she started to have more myoclonic jerks which caused her to toss food from her silverware and choke as she ate.  This time there was no slow build up to the second seizure, she just went directly into another tonic-clonic. Even more alarming, food became lodged in her airway so she wasn’t able to breath but thankfully the nurses appeared within seconds and took care of the situation.

After that I asked that they give Gabriela Lorazepam to prevent any more seizures that day. Having had two major seizures she really needed some recovery time.

Gabriela produced her last  tonic-clonic and two absence seizures over the next few days then, on Gabriela’s birthday and after nine days of observation, three tonic-clonic seizures, hundreds of myoclonus, and a few absence seizures, the doctors felt they had enough data and allowed her to go home.

While she was in the Telemetry Unit Gabriela had had four tests; the MRI which was normal, a PET scan which was also normal, an EEG which was not normal and supported right temporal lobe epilepsy, and a video monitor which also supported right temporal lobe epilepsy.  The results were not conclusive but that wasn’t an uncommon outcome, it just meant more tests were required. On the other hand they did get enough new information to warrant a new medication, Vimpat which they started Gabriela on before she was discharged.

Gabriela was completely surprised when I told her she had been in the Telemetry Unit for nine days; she thought she had been there for just three days. She also didn’t remember most of the hospital staff but she said she didn’t mind donating a few brain cells for such a good cause.

In late April we met with Dr. Stern to review the results of Gabriela’s monitoring and find out what the next steps would be. The first step,  neuropsychological testing to be performed in May,  which asks very odd-sounding but specific questions the answers  can help pin-point a possible origin of seizures. Following that there was be a MEG-MRI in June. This is a technique of brain-mapping using electrical currents within the brain which also helps to determine the origins of seizures.

Gabriela is now on phase one of determining the possibility of surgically improving or even completely resolving her epilepsy.  We’re on pins and needles waiting to find out if she will ultimately have surgery and if it will help to wash away all we have been through as a result of her years of epilepsy and misdiagnosis.

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78: Becoming Independent

August 2012 to October 2012

Gabriela hadn’t sailed out of Tranquility to never have a problem again. For the next couple of months things were difficult and it seemed like life was mostly two steps back and one step forward.

July had been chaos having to find an apartment while Gabriela was busy making our home as Tranquility-like as possible. Then came another hospitalization because Dr. Tipash, Tranquility’s doctor, once again showing his incompetence and had completely stopped one of Gabriela’s medications that Dr. Stern, her neurologist, had given him specific directions to lower slowly. After that there was moving Gabriela into her new place and getting it set up.

By August, Gabriela and her new independent living provider’s case manager, Lisa, and staff were trying to get to know each other. Unfortunately Gabriela still had half her mind stuck at Tranquility which meant that she had no tolerance for her perceived independent living inadequacies.

The staff was also having a hard time figuring out how to handle Gabriela because she looked and acted normal or what they refer to as “high functioning” in the business. In my view one of the worst things the staff did regularly was to call Gabriela “high functioning” to her face which just pointed out to her that she wasn’t “normal”.

Gabriela’s apartment was furnished beautifully from the moment she moved in and she was excited to invite friends from Tranquility over. She felt their impression of her apartment would be an indication to them of her success.

The first evening Gabriela had a guest over from Tranquility she had what I refer to as her “Britney Spears moment.” She had been left alone by her staff for 30 minutes prior to her guest’s arrival and during that short period Gabriela became so anxious she gave herself a haircut; a very “Britney” style cut. While, unlike Ms. Spears she didn’t shave her head, it was clear when I saw her bedroom the following day she had frantically chopped at her hair, leaving clumps strewn around her room and resulting in what was a very, very short pixie cut for her that looked awful but Gabriela had no Idea how bad it was.

Gabriela had also been moved up slightly on her new medication, Onfi, which created some immediate mood issues that I quickly detected after a phone conversation with her. As a result the medication was lowered but not before Gabriela had scraped a small patch of skin on her hand, an act that was considered “self-harm”.  As a result Lisa, Gabriela’s case manager, was legally required to take her to Santa Barbara’s Cottage Hospital for psychological evaluation.

After the evaluation Gabriela was given a choice of being put on another 5150 or self-admitting. Gabriela initially chose a 5150 which indicated to everyone just how poor her decision-making abilities were at that time. I immediately changed her decision to a “self-admit” to “psych-lite” as the hospital staff called it.

Within a few days the doctors at Cottage Hospital felt Gabriela would be better served by transferring to UCLA where she would have the advantage of working with Dr. Stern and the UCLA psych department.

When Gabriela was evaluated by a psych doctor at UCLA he didn’t feel that she needed to be admitted. As he examined her Gabriela read the doctor’s name tag and asked if he was Jewish and did he speak Hebrew. He nodded to each question. I switched to Hebrew so I could talk with the doctor without worrying about hurting my daughter’s feelings. I wanted him to understand the importance of his decision and explained that the last time we had tried to get help for my daughter at UCLA they had looked at her, much like he had just done, and decided she wasn’t bad enough to admit her. Then, a few days later, she was hospitalized with a psychotic break that lasted more than 18 days. I urged him to not send my daughter away again.

Much to my relief the doctor changed his mind and Gabriela was admitted to UCLA and remained there for nearly a week. She was finally discharged and her diagnosis was changed to borderline personality disorder.  Both Gabriela and I felt that this diagnosis seemed to be a much better fit for her because she exhibited many of the indicators of BPD like; over-spending, suicidal thoughts, mood swings, short intense episodes of anxiety or depression, impulsivity, feeling alone, and self-hate. Gabriela had every one of the symptoms.

I arranged a meeting with Lisa and the rest of Gabriela’s staff while Gabriela was in the psych ward. I wanted them to understand more fully what was required to support Gabriela’s independent life. During that meeting we worked on a daily calendar and mapped out a schedule for her.

The meeting also gave the staff an opportunity to ask questions and speak openly about Gabriela’s care.  I remember specifically warning Breanna, who was Gabriela’s overnight and predominant caregiver, that her performance was going to be under a microscope because she was taking on a job that I had held for years.

After Gabriela was released from UCLA she had some emotional ups and downs but because of her behavioral history they were viewed by Lisa as either manias or depression which was usually an overstatement on her part.  I always got a sense that Lisa used more impactful words when describing Gabriela’s moods in some bizarre attempt to feel as if she was effectively handling such a complex case.

The daily schedule I had worked out with the staff during our meeting was poorly executed from the beginning and eventually dropped. It should have been a red light to me that Gabriela’s staff wasn’t up to the job they claimed to be capable of doing.

In September Gabriela celebrated going back to College. I recommended she start with a light schedule just to put her toe in the water but instead she signed up for four classes in addition to the tutoring she was receiving to fill in the gaps of her high school education.  One by one the college classes were dropped until there were none by the end of the semester.  There was no need for us to discuss this because she knew I had urged her not to jump in and I knew she was disappointed that she felt she couldn’t keep up with the rest of her class.

But by October Gabriela had become a completely different person. It was as if the sun had finally come out for her. Having read about Zonisamide I was concerned each day she was on that medication that the psychosis would become permanent but the opposite happened.  It had been 90 days since the Zonisamide had been stopped and Gabriela turned a corner. No more psychosis just manageable ups and downs.

Now much clearer-headed, Gabriela started working harder on understanding everything that it took to be an adult. It also meant that she was no longer tolerant of staff just showing up to “hang out.” Gabriela wanted to get stuff done yet it seemed that the only one on the staff with any focus at all was Breanna. Gabriela and I had been told that anytime we felt a staff member needed to be replaced for any reason just to let Lisa know and they would be replaced so one by one each of the original staff was replaced except Breanna.

As part of the aftercare protocol UCLA had specified Gabriela was assigned a new psychiatrist who started making adjustments to her medications. First he lowered her dose of Cymbalta back to the level it had been at when Gabriela first entered Tranquility. The result was amazing! All of the throwing up and nausea that Gabriela had suffered from since January 2012, when the Cymbalta which had been increased by Dr. Tipash, magically stopped!

Then there was a reduction in her anti-psychotic medication, Seroquel. By January Gabriela was down to one low dose of Seroquel only if she needed it for sleeping and the lowest dose of Cymbalta available.

For the first time in years I was able to make plans to attend an out of town event, a one day seminar about epilepsy at Stanford, where several doctors spoke on a variety of topics related to epilepsy.

I got a lot of information from this event the most useful was having the staff keep a calendar recording seizure activity, myoclonus, and anything else they felt was unusual behavior during the day. Despite the staffs failure to do other aspects of caring for Gabriela, Breanna managed to keep after her fellow staff members resulting in a fairly decent log which would be useful for Dr. Stern.

Non Epileptic Seizures (NES) were another topic at the seminar. The difference between epileptic seizures and NES is that EEG’s show normal patterns of brain activity during NES and their cause is generally psychiatric. Because of Gabriela’s history of anxiety we felt that NES should be ruled out as a possible cause of some of Gabriela’s seizures, so Dr. Stern prescribed a traveling EEG monitor for 72 hours.  This involved Gabriela having her head fully wired as with a traditional EEG setup and attached to that was a small battery pack which sat atop her head. This was all wrapped in white gaze and ace bandages then covered by a beanie cap and the wires were plugged into a small purse sized case that she carried with her.

The problem with this type of monitoring is that it takes a long time for the results to be determined. We would wait three whole months before we got a diagnosis.

Gabriela enjoyed outings around town during the 72 hours she wore this apparatus because she got such a variety of responses … from sympathetic people thinking she must have some horribly dreadful disease to others who couldn’t make eye contact. She even went out one evening for dinner and it wound up costing her nothing because of the kindness of people who felt she was so courageous.

Gabriela was doing so much better by late October that we had decided to limit our visits in order to allow her to “grow” on her own. We decided that seeing each other every couple of weeks and talking or texting regularly would be our loosely structured visitation and communication schedule.

Despite our best intentions, this plan didn’t always work. There were days when I just felt I had to drop what I was doing and drive up to visit or when Gabriela was exhausted by the daily intrusion of her staff and needed to have a break. Then there were some days when she just needed to be with me. One thing that Tranquility had, thankfully, failed to do, despite their best efforts, was break our family bond.

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