Girl Scout

Simon has a cold -- just a runny nose, a cough, and an occasional low-grade fever, nothing serious. Nonetheless, I am worried. The last time he was sick was in October (we've been reeeealllly lucky -- either that or those vitamin C-echinacea-zinc-gummi-vites acually work...). He'd had a virus, and when his fever reached a little over 102 he had a status seizure that lasted on and off for the better part of five hours. While we were in the hospital after that episode, the doctors told us that a status seizure is possible whenever Simon becomes ill (because a fever lowers the seizure threshold even while otherwise controlled with medication), and we should be prepared for it.


At the time, all I could think was "How the hell do you prepare for something like that!?," but, sure enough, I've learned to. Currently, Simon's bedroom is fitted with what I think of as the "mini ER,"  -- a suction machine, an oxygen tank, and a pulse oximeter he wears to sleep at night. We also have emergency medicine on hand, and a plan in place which dictates that, should he go into status again, we will take him directly to our preferred hospital (the one with all his doctors), rather than call an ambulance and lose time by being circumvented to our closest hospital first.


Those are the big things, the important things, covered as well as we can. I'd recommend those protocols for anyone in our situation, along with an anti-suffocation pillow and (coming soon!) a seizure response dog. I am still constantly on the lookout to find more ways to keep Simon safe and avert future crisis, as any parent would.


Strangely, though, I find that it is the little things -- the tiny comforts I have stashed, that bring me the greatest sense of inner calm. In my handbag I now routinely keep my headphones and charger, a notebook and pen, instant coffee packets, and extra toiletries for days' at the hospital uninterrupted by sleep or showering. At night, if I am really worried, I put Simon into bed with me and I sleep in my sweats. Within easy reach I keep one of Simon's favorite blankets and more appropriate "street clothes" for myself (because it is amazing how much more confident you can feel when you are wearing a proper bra and have shoes on that match). I've even been considering keeping a bag packed like I did during the final weeks of pregnancy.


At first, I was puzzled by how important these relatively unimportant things felt to me, but over time I have come to an understanding with my oddball self. True to my control-freak nature, I like them because they are the only things I actually have control over. I can't prevent a seizure, but I can make sure I have my phone charged to communicate with doctors, friends, and family. I can't avoid a PICU stay, but I can have the means to wash my face and make a cup of coffee to stay awake throughout it. I can't take this awful thing away from Simon, but I can wrap him in his favorite blanket and play him his favorite songs to comfort him. I can't change what is, but maybe, if I am a good scout, I can be prepared in mind and body to do the right thing at the right moment and we'll get through it together.


girl scout badges - 2/365, a photo by TrishSince1977 on Flickr.

Keep Calm and Carry On

My very favorite mug bears the British WW2 poster slogan "Keep Calm and Carry On," which was meant to be a last bit of encouragement from the monarchy, a reminder that life goes on even in the face of a potential invasion by the Nazis.

There are many reasons that I like this mug so much. It has a cool design (nice typography!), and I am both a history buff and a slight anglophile. But, most relevant is the fact that, speaking from a personal history perspective, this pretty much sums up a key "Laura" trait. When I'm under a lot of stress, my main defense mechanism is to become rather stoic -- whatever it is that has me twisted into knots -- I feel that there is no need to think about it, analyze it, or discuss it (or, in the case of this blog, write about it) -- I just get through it. By keeping my eyes ahead and my mouth shut I'm convinced I will see the light at the end of the tunnel that much sooner.

It is a strategy that has often worked for me, though there are times when I've way over-surpassed my capacity, and I do succumb to a melt-down. But even this I prefer to do privately, usually in the shower where no one can hear.

I had my last melt-down about 15 minutes ago after reading that the child of a fellow special-needs blogging parent died in his sleep due to a seizure. My heart broke for them, and for me. It is in the wake of this honest, cleansing cry that I finally feel like I am ready to write about what has been going on here - something my husband has been encouraging me to do for a few weeks now.

First, let me get some things straight -- life hasn't been all bad, in fact much of it has been great. Brian started the graduate program he was hoping to get into, and he loves it. I've been very busy with all good projects (which is a huge feat for a self-employed gal like myself), and my semester has started off well. Olivia is enjoying both 3rd grade and her first team sport -- field hockey! And, best of all (for this mommy), Simon has been doing really well in kindergarten. Both his teacher and his aid are incredibly wonderful and supportive, and they are truly invested in making his experience both pleasant and successful. With all the anxiety I felt over the kindergarten transition, it is more than I could have hoped for (expect a post later more about school and what I think is making our inclusion setting work).

So, what am I freaking out about? Well, aside from having enough going on to make our little family truly crazy busy (my calendar is a mess, I have to color-code it), and aside from the stress of two very over-worked parents, there has also been enough "really scary bad" thrown in to tip my coping scales into a stoic silence.

 You see, I've been terrified of losing Simon.

A few months ago, after seven months of being well-controlled, Simon started having break-through seizures and frequent bouts of sudden vomiting. After LOTS of blood work came back inconclusive, we tried increases in medication. So far, they haven't help the seizures (though the vomiting stopped).

Within this, I noticed an alarming pattern; Simon's partial seizures were happening while he was sleeping and they always included him vomiting. Though we have a video monitor on him at night, the partial seizures only involve facial movements and are virtually silent. Even the vomiting is silent, it just pours from him without any of the normal retching you'd expect. I feared that he would have one of these seizures at a time when we were all too deeply asleep to catch the slight noises on the monitor, and that we would wake to find that we had lost Simon due to asphyxiation.

As soon as I realized this, I contacted every doctor and medical professional I knew to help me find a way to protect him. I thought that there MUST be something to detect a night-time seizure and/or distress.

At the same time, I began researching like crazy on my own and I came up with some rather striking disoveries. I learned that there are syndromes within epilepsy, and that one of these syndromes seems to fit the variety of seizures Simon has -- including the vomiting, which, as it turned out, could likely be a form of autonomic seizure activity occurring in the occipital lobe.

I also discovered that I am not the only parent worried about losing their child due to a seizure at night. I found many stories, personal ones told on list-serves I belong to, a foundation in the name of a child that died -- the Danny Did Foundation in Chicago -- and some major news articles including this article from the NY times and this article from Newsweek talking about "Sudden Death in Epilepsy" also known as SUDEP. Mainly the articles focused on how little is being done to understand epilepsy, how SUDEP is virtually undiscussed by the medical community (in fact, there is a stigma against discussing it with parents and patients, thinking the anxiety the knowledge can cause will lessen the quality of the patients' life), and how, especially in the United States, there are no real options available for the detection of nocturnal seizures and, thereby, prevention of death either due to a prolonged status seizure (with can cause renal or heart failure, as well as brain damage), or due to suffocation or asphyxiation occurring while seizing.

I emailed our Neurologist with my findings. She agreed with my diagnosis on the vomiting and the relation to occipital seizure activity (I'll be sending her a bill for my time and expertise later). She also (somewhat sheepishly) acknowledged that yes, SUDEP is an issue, and no, she had not discussed it with us because there was nothing we could do about it and she didn't like to upset parents. She compared it to SIDS, in that the deaths are a bit of a mystery and there is a limit to what prevention can do, if anything.

I admit that I was sorely tempted to throw a complete raging fit. WHAT DO YOU MEAN MY SON COULD DIE AND YOU DIDN'T TELL ME AND THERE ISN'T ANYTHING THAT CAN BE DONE ABOUT IT? Instead, I kept calm and reasoned with her. In the case of SIDS, I said, parents are made aware and there ARE both preventative recommendations and things like apnea monitors for parents to make use of. Shouldn't a similar protocol be in effect in this situation?

She didn't disagree with me, but she did say that no such protocol existed. There are no recommendations. There are no monitors. All she could offer was to tell me that other parents in this situation find it similarly stressful, but that we have to learn to live with it.

All of the other doctors and medical professionals that I knew agreed with her. There was no one to help me. I deeply sensed the reality of an impending unthinkable disaster.

Well, F#@& THAT. This momma is going to carry on. (Okay, so I did give myself over to one or two fits of hysterical crying in the shower. It was necessary.)

The only way I know to carry on is to do more research. A lot more. I came across an article on Epilepsy.com "Nighttime Siezure Activity: Will your family every sleep peacefully again? " (the answer is "no," by the way), that talked about what we are dealing with. While the motion monitor in the article won't help us with Simons' still-bodied partial siezures (yes, I called the manufacturer to check), it got me thinking about re-purposing other kinds of alarms. To help narrow my search, I spoke with a nurse at Kennedy Krieger about what physically happens to a person during a seizure, and (light bulb moment!) the heart rate goes up abnormally and, if in distress, the blood oxygen level would go down abnormally. What I needed was a pulse oximeter with an alarm. Eureka!

So, I called the neurologist and pediatrician and asked them to direct me to one. Once again, no help. They said that there was nothing that was FDA approved for the use I intended to put it towards. They suggested I try ebay. Or amazon. They offered to write me a script if I found anything to help with insurance costs.

Again, carry on.

I searched and, to be honest, last week I just ordered my THIRD device (anybody want a slightly used pulse oximeter?). In this quest I was on my own, and therefore a bit reliant on trial and error. The first two devices were more made for adults and Simon's tiny finger was too small to get a reading. We visited the Neuro in person last week, and this time, when I dumped my useless gadgets on her exam table and looked her directly in the eye, telling her I refused to lose my son this way, she had a harder time brushing me off. She wants to try an apnea monitor used for sleep studies, and we are currently trying to go through insurance to get it.

In the meantime, I had been watching Simon's video monitor like a hawk. Sleeping at all had been hard, and it was wearing on me. My anxiety was ratcheting to what I knew were unhealthy levels, but I could not shake the feeling that something bad was going to happen.

 And then it did.

Wednesday, Simon had a slight fever, which we know lowers the seizure threshold. After I gave him his medicine and put him to bed, I placed the monitor on my desk while I went back to work. About 20 minutes after he fell asleep, he had a seizure. I heard the little chewing noise, saw his open eyes on the monitor, and I ran upstairs. By the time I had yelled for Brian and vaulted the steps, he had already vomited. He was lying on his back and choking.

Thank god I am a neurotic, persistent, pain in the ass. After his first seizure I had demanded a script for a suction machine (reluctantly given by the pediatrician since it is not seizure protocol), because I was afraid of just this scenario. We keep it set up in his room and we were therefore immediately able to suction his airway clear (though we later found out he had aspirated enough to lead to aspiration pneumonia). We timed the seizure and because it went past 5 minutes, we administered the emergency Diastat and called the paramedics.

To make what is already a ludicrously long story shorter (sorry, brevity is not one of my strengths), I will summarize what happened over the next few days. Simon's seizure became another status episode and he seized for over two hours. Once again he needed to be in intensive care to monitor him after the massive dose of drugs administered to stop the seizure to prevent it from killing him. And, once again, I am profoundly grateful that he has come out of it okay and is now resting and recovering at home.

Despite the disturbing sense of déja vu, I am also grateful that this time I am better educated. Last time, everyone panicked. The emergency room doctor, in her desperation to stop the seizure, gave him so much phenobarbital that it nearly killed him. I remember standing beside the gurney with tears pouring down my face, helplessly thinking I had lost my son. This time, I was calm and in complete control. I was able to prevent the prolonged medical coma he was in last time by directing the emergency medical team on specifically what medications they should and should not give him, and I made sure to get our neuro team immediately involved and had him transferred to their care.

While at our world-class "home" hospital, I used the opportunity to grill EVERY SINGLE medical professional I came into contact with about what I can do to prevent a recurrence in the future and have come up empty handed. Some doctors apologized and told me that they knew the situation sucked. One coldly told me that there needs to be "more of a market to warrant developing such a device." Everyone told me that I was doing the best I could and that I should, over time, learn to live with it.

I am living with it. I know that this is going to happen again. And again. I will keep calm, BUT, I refuse to believe that there is nothing I can do. I will not let this go without one hell of a fight.

The third pulse oximeter I ordered just came yesterday. The only devices specifically for kids are clip-ons and we are trying to find a way to make sure it does not come off of his hand at night. At least this one gets an accurate reading. That is something.

Carry on.