On Being a Detective As an English and French Major

The whimsy of the picture belies the terror I feel at navigating the dark recesses of Sophie's brain. I am not a scientist.

Sophie's gotten four four-day treatments of IVIG, in September, October, November and December. She responded terribly in the weeks following her September and November treatments and very well after her October and now December treatments. The infusion is a blood product, and we work with a pharmacy that gets it from a pharmaceutical company. In early October, the pharmacy told us that the product they'd sent in September was "out of stock" and that they would be substituting an equivalent product. They assured me of the "equivalence." The same thing happened again in early November when the new product that we'd gotten in October was "out of stock," so we went back to the one we'd used in September.

Remember two things:

1. Sophie did not respond at all after her first infusions in September. In fact, she got worse over a few weeks. We attributed that to the viciousness of ESES and to the fact that having millions of antibodies infused into one's body was a significant thing, that her body would adjust, that it had worked before after a few times, that sometimes things get better after they get worse.
2. I am not a scientist or a doctor. I have a tiny little mother mind™ that sometimes doesn't kick in right away.

While in the hospital the other week, we learned that Sophie's ESES is still there, which wasn't surprising because -- well -- she was in the hospital and she had a terrible month. But while in the hospital, the pharmacy called me to set up the medicine to be delivered for the December infusion and told me, again, that the product we'd used in November was "in stock," but there was only a low supply of the stuff we'd used in October. While in the hospital, I wracked my tiny little mother mind™ over what the hell is going on with Sophie's brain, and it occurred to me that perhaps the product we used in October was the one that really helped Sophie so that we should try it again to see in our own little tiny little mother mind™ experiment whether it would help Sophie. I asked the pharmacist whether there was enough of that October product for Sophie, and she said there was more of the stuff that we'd used in September and November, but I insisted and she said okay. So that was that.

It's now a good week out from the December infusion with the same product as the October infusion, and do you know that Sophie seems to have turned another corner? I don't want to jinx it, but we have to make sure that we get that same product again. Here's my English and French Literature brain at work, because I'm not a scientist: Sophie's brain is exquisitely sensitive, and something about the particular combination of antibodies in the product she got in October and December relieved the ESES. Something about the particular combination of antibodies in the product she received in September and November worked negatively and plunged her into near-crisis. 

This is sort of a boring post, isn't it? I thought about providing a link to a news article I read recently regarding drug shortages and pharmaceutical companies, but I don't feel like looking for it right now. I'm living it -- what the article is about -- right now, along with living this other weird life of relentless vigilance. There's an article about that somewhere, too, and it's about some "groundbreaking" work or study on PTSD and parents of chronically ill children or those with complex medical needs. These articles make me sigh, at this point. I point out that there's no post in the trauma, that it's chronic traumatic stress disorder. It's why I walk around during some periods with a whimper in the back of my throat. I lighten the stress and dispel the whimper by conjuring my Italian grandmother who walked around the house in her latter days, dressed in black, with rosary beads, muttering pray that I die, pray that I die.

Anyway.

So, the terror that belies the whimsy is this: This is the way it is. The detective work. The constant vigilance. The inability to go with the flow. The grace of discovery, even when your brain is better suited to metaphysical poetry and words than the intricacies of the human brain and chemical compounds or blood. The fact that we are on our own is both intensely freeing and utterly terrifying.

48 Plus Hours In: Hospital Chronicles, Meta

There's something sort of meta about that photo, isn't there? What does meta mean, anyway? Among, with, after. Something like that, I think. Sophie's brainwaves, Sophie and then, beyond, Sophie. Her face fascinates me.

I'm not sure what those eyes are telling me, but the word implore comes to mind, and those eyes both sustain and torment me.

We're sprung from the hospital and home again. Sophie's ESES is still pretty bad, but she has no underlying infections or thyroid problem or lung issues and the results of the autoimmune panel are still pending. Teenage Neurologist asked whether we'd consider high dosage steroids (it's one of the standard treatments for ESES), and I said no not ready. The other two times Sophie had ESES, the IVIG worked, and we still have room for it to work. I'm also going to fiddle again with the CBD and the CBDA and we're going to get this thing beat.

If you have a thing for science and immunology, put your thinking cap on and tell me something I don't already know. Here are a few things to ponder:

1. Sophie began seizing within a couple of weeks of her initial infantile vaccinations, given to her to boost immunity and prevent disease.
2. When Sophie was given ACTH, a high dose steroid, she got worse, not better. But she also had TWO MORE VACCINATIONS during the steroid wean (we knew nothing about anything in 1995 so didn't blink when doctor ordered four and five month vaccines. The only one they held was the pertussis because back in those days it was the live cell pertussis or what we called the DTP.)
3. Whenever Sophie gets a high fever, she has NO SEIZURES. This is a phenomenon that has been noted in some studies and occurs in some people with autism as well. Fever is the body's protective immune response.
4. The only treatments that have ever helped Sophie for any period of time are intravenous immunoglobulin which basically floods the brain with bazillions of antibodies that dilute out the "bad" ones that have "leaked" through the blood-brain barrier and are attacking her brain (this one is hard to wrap your head around as it's sort of meta-seizure, but just go with the flow) and cannabis medicine (potent anti-inflammatory).

If Teenage Neurologist can be one, so can you. Remember what meta means: 

Among, with, after

Purple Day, In Case You Missed It, and My Ongoing Problem with Authority

via marijuana.com

I know you know I've got this great writing gig over at marijuana.com. What you might not know is that Saturday (two days ago) was Purple Day. I'm not so into these days when we mark whatever hell is closest to our doors, but I do feel you can never be too aware of the effects of epilepsy, so I wrote a little personal piece for the website.

I'm no good at raising money anymore and am too mouthy to be much of a lobbyist. I have a problem with authority, to tell you the truth. In fact, even this past Saturday night, I had a deep and involved conversation with a developmental pediatrician who was compassionate, enlightened and a bit of a mansplainer, all rolled into one. I have to tell you, though, that despite my sharing Sophie's success with cannabis, he didn't ask me a single question about it. In lieu of doing anything constructive about this or perhaps admitting that the fault lies with me (I must sound dumb or offensive or crazy or something), I've decided that this is a rule and not an exception. His eyes didn't exactly glaze over, but he made more effort to disagree with me about my assertion that it's unethical to prescribe five drugs for a child with a seizure disorder that's already failed nine. When I told him that I've probably met or know of thousands of children with refractory epilepsy and have yet to meet one whose seizures stopped with the fourteenth or fifteenth drug, he disagreed and claimed to know some. To be fair, he admitted that it was often "the honeymoon effect," and his eyes flickered when I told him that Sophie had never been on a honeymoon so I was pretty certain that the cannabis wasn't working because of this phenomenon but was actually working, like, for real! I won't even mention the glaze his eyes took over when I casually dropped the little bomb that Sophie's seizures began after her initial vaccinations and worsened when she was vaccinated again while being treated with steroids.

Sigh.

The kind doctor is doing beautiful work with the disadvantaged and foster children -- and I'm cognizant of the fact that perhaps the fault lies with me and my ability to be persuasive and diplomatic and sensitive. Oh, and to be careful with that edgy, angry thing I do. I admit that when he declared his alliances with Various and Important Associations and Pediatric Monoliths, my own eyes glazed over.

The rift is enormous, you see, and I've no interest in vindication.

In any case, I can tell a story, can't I? My ability to do so is probably the only remnant of my sanity left after these twenty-one years.

Here's the link. Show it some love and share it if you think others might benefit.

Purple Day

Sunday Inference

I spoke with a woman last week whose baby recently had been given phenobarbital as a first-line defense when the baby developed seizures. Twenty one years ago, I stood in the hallway of a New York City hospital and expressed concern about the effects of phenobarbital on the developing brain of my own baby. What's a couple points drop in IQ? the doctor said, and that was that.

I spoke with a woman a couple of weeks ago whose baby recently had been given keppra as a first-line defense when he developed seizures. The doctor said that a small percentage of people taking the drug get very angry and irritable, she said. Yes, it's called "keppra rage," I told her. About ten years in to her diagnosis and shortly before it was approved for use, Sophie took keppra. It did nothing for her seizures, I told the woman,  but she never developed any rage.  Last night, the woman texted me that the baby had another seizure. He has a cold, the mother told me. I had hoped the medicine would work. I said, Viruses are notorious for precipitating seizures. All bets are off.

My friend Allison has been treating her son with cannabis from the get-go. Would I have done so had I been presented with the option? Did I feel resentful of nineteen years, wasted? No more I am not a doctor, but...

Yes, she said. Yes, I would. Yes.

The SIT-U-AH-SEE-ON

If I were French, I might call our current situation with Sophie -- the hives, the CBD, the THC, the Vimpat and the Onfi -- LA  SIT U AH SEE ON. There's something about the supercilious accent that helps me cut through the fear and cope. Writing it down here also helps me to impose some order, however illusionary or delusionary because, let's face it, after twenty years, the main thing I know is that refractory epilepsy is a big, dark hole and no one, absolutely no one, knows what the hell is going on.*

I had a conversation with The Neurologist this afternoon about Sophie's hives, and she suggested that I cut Sophie's dose of Vimpat in half. My initial response is Whoa. Any of you regular readers know that weaning anti-epileptic drugs, like weaning drugs for depression or anxiety, is serious business, and that the slower you do it, the better. I also carry around a veritable salt lick when it comes to neurologists' opinions and directives about drugs -- the titration schedules, the weaning schedules and the side effects. It's been my experience that neurologists, in general, over-prescribe, ramp up too quickly, take down too quickly and dismiss side effects. That being said, I see the hives, I have the tiniest gut feeling that they might be related to the Vimpat, and therefore, the Vimpat must go. I really like and respect The Neurologist, and she made the call.  That being said, what if it isn't the Vimpat? Ripping off the Vimpat quickly will inevitably cause some withdrawal, including increased seizures and discomfort, but not taking it away could cause some serious shit. I've gotten good advice today from my comrades in seizurology and from my dearest friends. Christy of Calvin's Story (if you haven't read her writing, yet, you need to), said the most profound thing to me after she'd listened to LA SIT U AH SEE ON.

She told me that she has learned to never make a decision based on fear.

We chewed on that for some minutes, laughing at times over the impossibility of it all, how if we really sat down and thought about it, we'd have some kind of fear over all this shit we've faced and continue to face raising our children. We also acknowledged how our gut feelings are generally right -- maybe not even generally, but always. The trouble comes when you don't have a real gut feeling or it's occluded by -- yes -- fear.

So, here's the thing. I'm plain afraid of weaning Vimpat so quickly. I'm afraid that Sophie will go into status or will go insane. I'm afraid not to wean Vimpat because of the possibility of a serious allergic reaction or something brewing. While Vimpat has never really helped her, she's been on it for over seven years, so I'm banking on its relative uselessness as a seizure medicine as far as taking her off it. I have THC and CBD to help during withdrawal, and I have Diastat in the cupboard (currently expired because we haven't had to use it once in the nearly two years she's been on CBD) if there's a real emergency. On the plus side, we were going to wean Vimpat eventually, as soon as we had finished the Onfi wean.

When I lay out my fears and allow my gut to breathe, I think the Vimpat has to go. LA SIT U AH SEE On calls for it.

I think.










*If you have any ideas about what's going on or have a SIT U AH SEE ON of your own to share, please feel free to do so in the comments, especially if you're acquainted with epilepsy and drugs. I'm all ears -- fear and ears.

Landing on Comets

Today I learned that a space craft has landed on a comet for the first time. That's a photo of the event. Meanwhile back on earth, we got a sort of explanation, possibly, for Sophie's "drop foot" or increasingly strange gait pattern. Yesterday was the Quarterly Trip to the Neurologist, and despite Sophie's recent digestion troubles, she was in fine form, alert, smiling, seizure-free and fairly animated. The Neurologist was delighted and suggested that the prolonged use of the particular anti-epileptics have probably, over time, caused the problems. She informed me that both Vimpat and Onfi are troublesome, and she really, really wants us to continue to wean the Onfi. This can only spell improved efficacy with the cannabis, as most reports indicate those off of benzos in particular see the best results. She was delighted as well that the cannabis was helping her so much, remarked on how good she looked and agreed that more testing -- an EEG -- wasn't necessary. We made a plan to begin another wean this week and will keep it at that level for a month before moving to the next. I have written out on a piece of paper four months worth of weans (1 teensy tinesy bit, hopefully, a month) which is a start but not complete. The Neurologist told the grim story of one of her patients who got into too much trouble at the end and continues to take a tiny bit. She suggested that this might be the case for Sophie, too, given how long she's been on the drug and how much she's taken. Lovely. Maybe I'll get a chance to ride a comet in celebration of The Removal of the Benzo. The Neurologist also threw some alarming fact about bone marrow and one of the drugs into the conversation which I filed away to mull over later. Lovelier. I told her about the weird stepping motion Sophie makes and how I'd wondered whether she had Parkinson's or Multiple Sclerosis, two of the diseases that I saw on the internets that correlated with drop foot. I asked her this question in my best casual, yet rueful and ironic way (because -- really -- I wouldn't be entirely surprised to learn of some new catastrophe and when your child is nonverbal, who the hell knows ever what's going on? That spacecraft that landed on the Comet is called Rosetta, which makes me think of those language programs which then makes me think of how we can't figure out what someone like Sophie is thinking or feeling and wouldn't that be wonderful if there could be a Rosetta for the nonverbal?

Anyhoo.

The Neurologist, after observing Sophie walk believes it to be just plain old weakness, exacerbated by her constant crossing legs and a possible injury around the knee. She wrote me a prescription for physical therapy, so next on the agenda is perhaps a fracas with the insurance company over whether this is absolutely medically necessary (can't she just use the wheelchair? I imagine the agent asking over the telephone). Before I do that, though, I'll take her to the private physical therapist for a little assessment that will cost me about three trillion dollars and get some advice from her on where to go In the Healthnet Network for regular physical therapy. Remember you conservative and anti-Affordable Care Act freaks and repealers: You don't want no government coming between you and your doctor!

Anyhoo.


All in all, it was a good visit to the place of CONQUEST (see my post about irony, written years ago) -- surely not as spectacular as a spacecraft landing on a comet, but who am I to think our little problemos have a speck of significance in this grand universe?

Diastat Days

photo by Jennifer W.

I woke up this morning at just after 4:00 to Sophie howling in her bed, not a croon but a howl, the seizure slicing through her throat, air pressed out. She had two more like that, I dithered about Diastat for the thousandth time should I wait should I do it should I wait no do it no wait just do it. I snapped off the plastic top and tore the foil envelope of lubricant, inserted the tip into foil and then into Sophie. Eventually, her eyes fluttered, her hands, in claws at her ears, relaxed. I lay beside her. There is no one to call, I told Suzy, as I wandered the grocery aisles, picking up flour, sugar, eggs, butter, the bad stuff for the five dozen cupcakes I will make this evening. There's nothing to do, sometimes, but endure, I thought, and pushed the for what away. Later, I leaped off the no white food cliff, smeared Brillat Savarin on a baguette, ate it in my car while Astrud Gilberto sang to me.

Living Well With and the Living Hell of Epilepsy

For many, many years, efforts to remove the stigma that epilepsy carries focused on a "living well with epilepsy" approach. "Normal" people who also "happened" to have seizures but who otherwise lived "normal" and productive lives were paraded out in advertisements and marketing materials, and while this helped to dispel myths about epilepsy, the approach neglected a significant number of people whose lives were severely affected by the disease. What happened because of that is a woeful under-funding for research into the causes of and cures for the epilepsies, and, equally as important, a lack of knowledge and awareness of just how serious the disease can be, including a higher incidence of death than breast cancer. The mental health aspects of the disease -- for both the person suffering the seizures and the parents and siblings of that person -- are often unacknowledged despite grim statistics, and the work I've done recently with national groups trying to remedy the inadequacies of the healthcare system have only just pecked at the surface. I call that number -- the nearly 30% of people with epilepsy whose seizures are not controlled and whose lives are significantly impacted by the diseases as those who are experiencing The Living Hell That is Epilepsy.

With that in mind, the Los Angeles affiliate of the Epilepsy Foundation of America produced the following video that they showed at their most recent fundraiser. I think it deserves to be seen and shared and would appreciate you doing so if you have a moment.

Headlines you don't want to miss (an extremely black humored post)

Vintage portrait of an Amazigh woman, immaculately dressed and adorned.

the following is dedicated to my fellow Parents from the Land of Epilepsy 

or other Disorders 

and all those who love me and whom I love

So, I'm wondering what to do about the following headlines that came through my email box this afternoon:

Leading Causes for Epilepsy in African Children & Adults

Preventing SUDEP

Next Week Do Not Miss:

• Valproic acid lowers IQ in kids to age 6
• Valproic acid is linked to decrease in brain volume

Just so you know, I haven't clicked on the top headline although I have an idea that it's about a strange bacteria or even a  kind of tapeworm. I  know this because about eight years ago, I spent a whole night and several hours of the morning -- the darkest hours before dawn -- Googling seizures, weight loss, fleas, dogs and tapeworms and discovered that there's a tapeworm that makes its way to the brain and causes seizures. Even though this generally happens in Latin America and Africa, I thought at the time that I had discovered something new, that Sophie had been bitten by or swallowed a flea from our new dog at the time, and that said flea had laid eggs, a tapeworm had grown and made its way to her brain and was causing severe weight loss and even more seizures than she had before. I was so convinced of this that when the sun rose, I called our pediatrician and insisted that we do a fecal test to which he happily complied (bless his doctor heart). When it came back negative, I think I only sighed and thought onward.*

The second headline is about SUDEP, or Sudden Unexplained Death in Epilepsy Patients, a sort of SIDS for the epileptic set. It's something to be terrified about and something that has finally, after eons, taken hold in this country as a topic to research and talk about. I've even heard it described as a hot topic in the same tone that some in the epilepsy community use when they lament the fact that autism gets far more publicity and dollars than epilepsy despite the fact that it affects far fewer people. I did not click on the SUDEP title, either, because I'm certain I already do all the things one can possibly do to prevent it outside of being born again and claiming Jesus as my savior. If someone has direct proof (through a double-blind study) that doing so prevents SUDEP, let me know because I'd be all over it.**

The third headline is so enticing, no? A sort of teaser, something tantalizing, held out of reach and done so in order to make the drudgery of our days pass more quickly. Valproic acid or Depakote, is an old-line drug for seizure disorders, and Sophie took it back in the dark ages -- the 1990s! -- when she was not even six months old. She took two forms of it for a few months and despite warnings of stomach ulcers, I am not sure we were aware of its effects on IQ nor the volume of her infant brain. Evidently there have been advancements. Good to know. But we have to wait until NEXT WEEK to read about it.***



So, that's it for today. Next time you read the paper or the headlines and grow insanely confused about what to eat and what not to eat, what will make you fat and what will make you thin or what will give you cancer and what won't, add the above facts to your getting addled brain. Then mull on them for the next few decades, feed a dog and plan a trip to the dark continent, drink a Diet Coke and eat a slice of pizza with extra cheese. Adorn yourself with African jewelry, knit a blanket of sorrows and smoke a shitload of cigarettes while lying on your back on the plain.

*For any of you seizure parents out there who might run to your computers and Google seizure inducing tapeworms, here's the link to the headline that I posted above. Don't tell me what the article says.

**To read more about SUDEP and perhaps check your list of how to prevent it, go here. Again, don't tell me what it says.

***Check back next week.

Seizures, the universe, humor, grace and God

God, Blessing the Seventh Day - William Blake, c. 1805

My last post got many kind comments, some nearly over the top in praise of both my writing and miracle-creating abilities. I'm so thankful for this incredibly supportive community, and while I'll admit to being a kind of comment whore, I am, most decidedly, not a holy person with a direct connection to God and miracles. I'm not sure I even believe in miracles -- other than those tiny moments of grace when despair and worry and trial lift, effortlessly, and leave peace and humor and relief in their wake. I've experienced many such moments of grace and feel it's my duty, in a way, to be open to them, to acknowledge them, to give them attribution, and while I hesitate to use the word God in these over-religious, political (as opposed to spiritual) times, I am deeply grateful to what is, apparently, an abundant universe, where divine love always balances out its opposite.

When I interfered with Sophie's seizure, I was really only practicing the advice given in one of my own bibles, a book called Epilepsy: A New Approach by Adrienne Richard and Joel Ritter, M.D. I bought this book in the late 1990s and believe there's a newer edition, but its subtitle - What Medicine Can Do, What You Can Do For Yourself explains its initial appeal to me when I was just beginning the godforsaken journey of uncontrolled seizures, when Sophie was a bitty baby, drugged out of her mind quite literally, and I began to realize that my daughter's brain was perhaps as dark a space as the heavens, before God made some order, and that it might, perhaps, be up to me to create a bit of light. That book, along with Anthony Weill's Spontaneous Healing wasn't handed over to me like tablets, but rather appeared on a pitiful shelf of books in the Alternative Medicine section of the Barnes and Noble on 86th Street in New York City. Yes, it was a moment of grace, and I'm deeply grateful to Richard, Ritter and Weill for opening my eyes and helping to set me on a path that perhaps afforded more potential to Sophie than were I to follow the traditional one.

Here's the passage:

STARTLE-AND-SHAKE

A team of researchers from the University of Utah Medical School set out to test the possibility of stopping seizures in a population of developmentally delayed schoolchildren. In almost every case, the children had no more seizures.

The method the researchers used was startle-and-shake. It requires the existence of an observable preliminary behavior: staring at a flat surface, raising the arms, a strange tone of voice, hyperactivity, and so on. The support person acts to interrupt the sequence by following these steps:

1. Shout "NO!" loudly and sharply to draw attention outward.
2. Grasp the person by the shoulders and shake him or her once. This changes the body's preseizure mode.
3. Give a little reward, a hug, an excited "You stopped it!" Offer any sort of praise or love for arresting the seizure. Let the good feeling, not candy or whatever, be the reward.

As for Oliver calling me a miracle-maker, it was said with great irony and therefore another moment of grace -- that my children can rise up and up and up and find humor even in the darkest moments is a wonder, something I am so grateful for that I'd venture to say it sustains me.

Zip-line

Yesterday, I took my three kids to our local Epilepsy Foundation Family Picnic. To tell you the truth, I dreaded going, particularly after Sophie had her usual morning seizure and remained clammy and drooly for a couple of hours afterward. I felt obligated, though -- obligated because I had told the foundation that I'd be there, and they have so many good people in that organization. I have taken  a sort of sabbatical from all things epilepsy during the last year, giving up my positions on the boards of these organizations and limiting my work as a writer and advocate to only paid contracts. I didn't even participate in last fall's epilepsy walk, and aside from some private counseling for new families, I've steered away from formal activities, fund-raising and even the mustering of excitement when new drugs and therapies are announced.

I'm burnt, to put it mildly. Burnt and jaded and profoundly cynical and certainly not optimistic that Sophie's seizures will ever abate through traditional means.

Yesterday, I met some new families, wonderful parents and children who are all struggling with this terrible disease. Despite advances in treatment, though, and all different modalities, including diet, drugs and surgery, I didn't talk to one parent that wasn't overwhelmed and one child that didn't appear drugged, drowsy or just plain out of it. I have no idea what the answer is, and the older I get and the more years of doing it, the less engaged I become. I imagine it's a survival mechanism -- a means of living day to day when a more appropriate response might be a continual wailing and gnashing of one's teeth and perhaps some homicidal thoughts toward the drug industry, the callous doctors, the ineffectual systems in place, and those systems that are completely lacking. When you throw in the relative indifference of the political system and the culture in general to the plight of the disabled and the strength and perseverance it takes to continually advocate and fight for a better life for your child, yourself and your family -- well -- there is, if not a breaking point, then certainly a point of surrender when you can't think about or do it anymore.

Yesterday, I sat and had a slow, labored conversation with a very sweet young girl who had started seizing when she was five years old, out of the blue and for no reason. She was eleven now and according to her mother had been on thirteen drugs, been through brain surgery, wore a vagal nerve stimulator and was just initiating the ketogenic diet. She was also on two anti-epileptic drugs that, along with the seizures, made her speech and reasoning slow and her eyes dull. I also spoke to an adult who had a stroke during her second pregnancy twenty years before. As a result, she had epilepsy that was difficult to control and was on several medications, and while she was cheerful and active, there was also something off about her, something I couldn't put my finger on, a missing filter, perhaps. She told me that the new drug that she was taking, Vimpat, made her feel terrible -- nauseous, irritable, dizzy and headachey. Sophie takes the same drug, and while it helps her seizures somewhat -- I think -- I agonize over the side effects and wonder just how shitty Sophie might feel.

Depressing post, right? I'm just getting it out, plucking the words, attached to vague and nauseating feelings that I, and apparently most, parents of children with uncontrolled seizure disorders and other disabilities probably share.

I suppose it's good to be in a beautiful park, a camp setting, with your family and many other families who share your life in some respects. I didn't know, though, whether to feel camaraderie or incredible isolation. I guess I felt both. Sophie couldn't do most of the activities but loved walking in a giant field of grass.

A little later after this picture was taken, I was encouraged to let her experience a zip-line, and while she seemed to enjoy it (her intake of breath and startled expression told me) -- I felt more like downing a shot of liquor, straight-up, watching her.

Henry and Oliver participated in the teen activities, mingling with other siblings and older children with seizure disorders. Their dare-deviltry included climbing walls and other acrobatic feats -- and while Oliver froze at the top of a very, very high structure and had to be coaxed and talked down by two heroic young men who firmly talked him out of a rising hysteria, I never felt anxious watching him.

I'm grateful for that.

Henry scrambled up all the structures like the athlete that he has become. My stomach lurched, once or twice, when he yelled for me to LOOK! but otherwise, I felt only pride at what my boys have made of their short lives.

I have no idea where this post is going other than to describe a day where I held both anger and lassitude, fear and content, despair and hope, resentment and gratitude all at once, in balance, in either hand, a lifetime shortened to five hours in a verdant park in an inchoate city on one tiny, spinning planet in a vast universe.

There must be a better title for this Medscape article

Here are the newly published articles in your area(s) of interest for June 29, 2012: Epilepsy Reason for Optimism in Epilepsy? Medscape Neurology   ADD MORE TOPICS »   And for those of you who take things quite literally, I'm aware that there might be a treatment on the horizon that gives those who deal with the scourge hope, but as a minor wordsmith and lover of the embellished, I'd rather the title of the academic paper was: Reason for Not Killing Yourself Over Your Child's Refractory Epilepsy.

Epilepsy and My Child

Looking forward to the webinar on December 13th, I wrote a brief essay in this month's Epilepsy and My Child Newsletter. You can read it by clicking HERE and scrolling down. My piece is titled Adolescence: The Developmental Milestone That Came on Time. The other articles are of interest, too, and we hope you'll register for the free webinar!

What I've Been Working On --

Forgive the repetitious posting of this flyer, but I am hoping to encourage many people to sign up for the December 13th webinar that I and my friend and colleague Jennifer have been working on along with Project Access and the Epilepsy Foundation. The webinar is FREE; you only need to register by clicking on the link in the flyer. Also, the webinar will be relevant to all children with special healthcare needs facing puberty and adolescence, so I'd appreciate you sending the information to your friends or anyone else who might be interested.

I hope to "see" you there!

Strategies for Success:

Communicating with Your Developmentally Disabled Child

During Adolescence and Puberty

Parents of children with severe epilepsies not only deal with the issues associated with epilepsy as a condition, but they may also face challenges with their child being unable to communicate verbally or having cognitive and developmental issues. Despite having a severe form of epilepsy, children continue to grow and will enter puberty and adolescence as any child would. Parents may be unsure how they are going to handle this stage of their children’s lives. Two parents, Elizabeth and Jennifer, will share their stories and our certified expert, Courtney, will provide helpful information for parents and youth on ways to communicate effectively during the pubescent stages and adolescent years. Also, the latest addition is Dr. Janelle Wagner, a psychologist who will provide information and data on the effects of epilepsy and relative conditions in adolescents and young adults.

Moderator: Elizabeth Aquino, Parent

Presenter: Jennifer Bertram, Parent

Featured Speaker: Courtney Kowalczyk, M.Ed.

Scientific Expert Dr. Janelle Wagner, PhD (Just Added)

Some topics that will be addressed:

Communicating with your child about his/her body changes

Social appropriateness and private behaviors

Assisting your pre-teen/teen with proper hygiene and care

.

If you are a parent who has questions or concerns about your child, please join us for this very informative webinar.

Link to register: http://ncpawebinar1.eventbrite.com/   

At the end of the webinar there will be an extended live Q & A session on the Epilepsy Foundation's eCommunities website.

Have questions? Submit your questions to the Forum before the webinar. Selected questions will be answered during the live event.

The information presented during this webinar is not intended as a substitute for medical advice. Please consult your physician about all clinical care and treatment decisions.

Hosted by the National Center for Project Access of the Epilepsy Foundation. This event is funded by the Health Re-sources and Services Administration’s Maternal and Child Health Bureau under grant # U23MC08582.

Sophie's next seizure treatment?

An evidence-based medicine approach to therapeutics requires scientific demonstration of a drug's efficacy as well as knowledge of short- and long-term adverse events that must be balanced against the drug's potential benefits. All of this information is lacking regarding the effects of smoking marijuana in the treatment of epilepsy. More research is needed before patients should consider marijuana for seizure relief, particularly because this represents criminal activity under US federal law and may be accompanied by adverse medical (and legal) events.

Andrew N. Wilner, M.D.

 in an article on MedScape titled Marijuana: A Viable Epilepsy Therapy?: Conclusions

Damn. I was hoping that this might be an option for us.

Number 140

I'm back from New York and will post about it later (maybe) -- lots of walking the streets, a benefit that did pretty well for the cause, the creepy Joker photo of Bernie Madoff leering down from every newsstand in New York City, the incessant talk of said Madoff and my growing impatience with this story because I think it distracts from the tens of thousands more who've lost jobs and retirements, etc. and I'm also tired of hearing how nervous the really, really rich people are.

Anyway, I'm done posting about New York.

I talked to The Neurologist in the airport as I waited for my bags to come around the carousel at JFK. Even though I'd flown over three thousand miles to get away, some conversations just have to happen. I asked her whether the increase in "big" seizures and decrease in "little" seizures was acceptable. I told her that I hated ambiguity in antiepileptics -- that if a drug works, it works, right? Seizures stop and the stopping is dramatic.

That hasn't happened.

The Neurologist and I discussed the possiblity that the drug was helping with the little seizures but that the brain was thinking up new ways to have big seizures. Hmmm. She felt that we should give it more time. I acknowledged that the positive changes -- the lilt in Sophie's step, the alertness in her eyes, the reduction in the constant daily clusters of spasms -- made me hopeful.

We're giving it a few more weeks and then we'll reassess. In the meantime, I've made another appointment to see The Homeopath in Arizona at the end of the month. I'll tell you about that later.

Now I have a joke. I was rereading a medical paper titled "Rufinamide for generalized seizures associated with Lennox-Gastaut syndrome" (fun reading, right?) and understood the study was done on 139 persons. The study was done in Cleveland and the average age of those studied was around 12. Since we put Sophie on rufinamide, I've visited numerous epilepsy/seizure disorder websites and posted enquiries about it, asking whether anyone had a child on it or whether anyone had tried it.

I haven't received a single reply.

I am now wondering whether Sophie is Patient Number 140.

Just wondering. And that's a picture of a guinea pig up there.

Off To a Beloved City

I'm leaving in the morning for New York City, my favorite place in the world (except, maybe Florence, Italy) and won't be blogging for a few days. I'm going to the People Against Childhood Epilepsy gala on Thursday night. I helped found this organization many years ago -- you can read more about it by clicking here.

I've packed my bags, stacked up the old New Yorkers to catch up on and somehow micro-managed my kids' various activities so that The Husband doesn't go too nuts trying to do it all. I placed a call to The Neurologist and wrote her an email asking for some advice and clarification about this new drug that Sophie has been taking for a few weeks. I haven't heard from her, yet.

This is what I think: I DON'T KNOW.

Sophie has been having fewer and less intense seizures of a certain kind and more of another. She walks with a quicker step and looks pretty bright-eyed. But those big seizures, occurring 1-3 times per day just kill me. All of us. We're throwing those little pink pills in her mouth faithfully, but it feels more like this:



The dart appears to have completely missed the board.

Maybe it's too early to tell?

It's a crap shoot -- the anti epileptic drug game, and we've played it before.



Let's hope we raise some money on Thursday night to refine the game.

Tiger, Tiger

Comparing oneself to a tiger is trite stuff, but I'm going to do it. I am a tiger and not the sexy kind. This morning, Sophie woke up and had her usual bout of seizures. I felt angry about it, really angry. Ferocious, actually. I've yelled and screamed before, even while Sophie has been seizing. I'm always alone, of course, wild and free. It doesn't feel good at all, though, this unfettered energy. It's not a release. It's as if I'm a beast, a woman with only primitive urges. I hate the way I feel afterward. Sorry and ashamed in all my humanity.

I've been rereading Barbara Gill's Changed by a Child - Companion Notes for Parents of a Child with a Disability, and wouldn't you know I'd open it to this page:

Tiger Mothers

...We hear, see and feel things others don't even notice. Our experience -- with its pain, vigilance, and hard work -- has heightened our senses when it comes to our child. It is as if we have developed extra nerve endings. We are tiger mothers -- ever watchful, ever ready -- tireless to protect, provide, defend.
Sometimes we sense that others are wary of us. They feel -- and fear -- the great power within us, the fire burning in our eyes. We are tuned in to something extra, something they don't hear.

You might think that I'm proud of or happy to be a tiger. And I think most mothers have it in them to be tigers -- whether it's ever unleashed or not is beside the point. But what struck me about that passage was the sentence "Sometimes we sense that others are wary of us. They feel -- and fear -- the great power within us, the fire burning in our eyes." I am sad, sometimes, that I have become this tiger because in becoming full of fire and strength I have lost someone else. I am out of balance, my yin overcome by yang.

My fears and worries about Sophie are eclipsed by love, though, and this love is unreasonable, in a way. It's unreasonable to experience these things for over thirteen years, so unreasonable that it must be love that carries me forward.

I studied William Blake, the poet, in college and learned a lot about him from a dear person I knew a long time ago. But to round out the tiger cliche, I find it fitting to include Blake's famous poem here:

Tiger Tiger. burning bright,
In the forests of the night;
What immortal hand or eye.
Could frame thy fearful symmetry?

In what distant deeps or skies.
Burnt the fire of thine eyes?
On what wings dare he aspire?
What the hand, dare seize the fire?

And what shoulder, & what art,
Could twist the sinews of thy heart?
And when thy heart began to beat.
What dread hand? & what dread feet?

What the hammer? what the chain,
In what furnace was thy brain?
What the anvil? what dread grasp.
Dare its deadly terrors clasp?

When the stars threw down their spears
And watered heaven with their tears:
Did he smile His work to see?
Did he who made the lamb make thee?

Tiger Tiger burning bright,
In the forests of the night:
What immortal hand or eye,
Dare frame thy fearful symmetry?

Relief

I ran into an old friend the other day when I was wandering, dazed, through a local outdoor shopping mall. I hate to admit it but aside from eating really, really good food (often cooked by The Husband, who is a chef) I actually get a lot of comfort from shopping. I don't buy a lot but I do like looking around. So, I was wandering around and heard behind me a very distinctive voice and when I turned, there she was. I hadn't seen her in years but had thought of her often. Her boy and Sophie had gone to preschool together almost ten years before. Her son had died, though, about seven or so years ago and while I can still remember the exact, horrible moment when I learned what had happened and then went to his funeral and stayed in close touch with her for a while, there came a time when I think she rightfully withdrew. She and her husband adopted two children and I thought about them all, often, and I thought, too of this cord connecting the two of us, a cord that really never broke. It just sort of stretched thin as we walked it, on our separate paths.

We hugged each other long that afternoon, and she told me that she was an avid reader of this blog. I feel that seeing her was symbolic because she reminded me of what is best in this often absurd world of parenting a special needs child. The bonds are so intense that they are really almost never broken and the ties that bind are stronger than personality and even, sometimes, culture. It is a blessed thing to know another whose path, if not similar to yours, at least understands it, completely. Hearing her voice, seeing her, after such a long time, gave me a renewed strength, but I'm not completely sure why.

She emailed me this in response to one of my recent posts:

The tight rope always extended and ready for you to take a walk. One side has to be the end to it all. There must be an end to it all. Not another drug or hormones or the wind blowing the wrong way. Not another night of sleeplessness and yearning for just one day free of seizures.
The quiet soul released of noisy seizures and daily anxieties.
And then, the moment you are yanked back with full force into the absurd, into the long future...

So beautiful, those words. It makes me think of the present and how those of us who meditate, those of us who spend time doing yoga or reading about mindfulness are intent or inclining ourselves, ever, to the present. And how difficult this is. To stay in the present. To live in the present. With my boys I remind myself to be present, to savor each moment, because it flees and they will grow up and beyond and I know that one day I will rue the moments that I wanted to pass. This is good. With Sophie, though, I live each day, trying not to think of the next, and the next and the next. Because that will bring worry and the future and who the hell knows what else. The present is not really the present, at least the present the moment that I experience with my boys.

I wonder if this is true for all of us who have our Sophies, our Roberts, our Omies, our Schuylers, our Morgans and Helenes and Luezas and Jakes and Indias and Micheles and Evans and all the other wondrous children in our tribe.

My friend wrote: I always felt like I was living in a bipolar world where no one really understands what it is like to live only in the moment and never venture even for a minute to tomorrow.

The title of this post is Relief. Sophie has had some relief the past two days. She has woken up with light in her eyes and dry palms. She has a bit of spring, again, in her step and a smile for us.

Today is good, I think. All over again.

Holy Humanity

Our morning wasn't so good. The boys were already at school, and Sophie was sleeping so peacefully on her back, mouth wide open, that I didn't want to wake her (long ago, we decided that Cardinal Rule No. 1 is never wake a sleeping Sophie), and she slept like that until 10ish when she finally woke up and had her customary bout of morning seizures. They go on for what seems like forever and I just NEVER GET USED TO IT. I finally drove her to school around noon and wandered around town in a daze before treating myself to some peanut noodles at my favorite local restaurant. I'm actually tired of writing about the seizures, though, and really only wanted to post a poem and a photo. And they're antithetical -- one an exaltation of human life and the other of nature.

Here's the poem, pulled from a recent issue of Spirituality and Health Magazine:

ALLELUIA
by Andrew Glaze

As I walk mornings down Bleecker Street,
I meet ten saints with filthy demands.
The tenements shout with holiness,
God reels by or sleeps on the curb,
at home everywhere in the wrecks and bars,
in the stale tobacco and business,
and everything that's wild and absurd,
like madness with madness and holding hands.

I had rather ten faces than ten birds.
I don't sense deliverance in a tree.
There is no impossible in lakes,
there is more miracle in a crowd
than in a Rocky Mountain or me.
There is more holiness in an eye
than in a scroll of holy words.
God's here, thank God, in the market place!
Viva the Signor of warts and turds!

And here's the picture:



Remember the blanket of yellow blossoms on my yard? After it dropped all those flowers, the blossom clusters turned bright pink, then brown and then they shed. And now, the leaves, in a crazy, Los Angeles delayed fall kind of thing are changing from green to yellow. And it's just glorious, really, this tree in my front yard. I don't look on it as a harbinger of anything, really, fall overlapping winter, a blaze of yellow against the blue sky and somewhat ludicrous in front of my tiny house. "I don't sense deliverance in a tree," the poem says. The skeleton that will be left there, when the last bit of yellow falls is probably only weeks away.