Status Update: Long-Winded

Taking responsibility for Lydia’s health is an enormous task. Over the year, I have found that it has been easiest to divide the work into three areas: 1) seizure control, 2) therapy and 3) diagnosis. Everything was so confusing in the beginning and this is how it has begun to settle out for us. Aspiration (breathing her foods or liquids) is also an ongoing concern but so far no g-tube has been necessary. I have every doctor we encounter listen to her lungs, and we had a chest x-ray recently that turned up clean. So, on to the other issues:

Divide and Conquer Part 1: Seizure Control

I’ve said before that stopping her seizures is all about giving her a chance at development. But actually, when I think it through, whatever she can do during her life makes no difference to my deep love for her and even my willingness to care for her. I’ve thought a lot about the enormous weight of being the caretaker of, basically, a life-long infant. It is a lot. But accomplishable….I think. Actually sometimes I don’t think it is, at least not in the way she deserves. But that’s another post. Stopping her seizures is more of a gut reaction to the micro-blips of suffering that shrapnel her day. She’ll be so content, smiling, looking around, and then WHAM, sucked into a seizure. She gasps, stiffens up, makes the saddest face I’ve ever seen on any creature, animal or human, and then cries after the seizure passes. The whole thing only lasts about a minute but it is a heart wringer for sure. Happening about fifty times a day lately which is better than last winter but worse than when we started. She’s like a little scratched record, trying to play her song but constantly interrupted. I often mentally ask myself what I wouldn’t give to stop her seizures – right arm? Sure. A leg? Absolutely…anyway here’s what we can do:

  1. Medications – Trying different medications takes time. You have to titrate up to an optimum amount in the bloodstream (1 day to several weeks), have at least a 1-3 month trial, and then if it doesn’t work, wean off (2-4 weeks). And this is not including all the time spent getting bloodwork done and trying to hit the therapeutic range, which is basically just enough to have an effect without poisoning you. It can take 6 months to try a single drug. If we were only to try one drug at a time it would take us years, so we’ve often doubled or even tripled up on medications. So far nothing has worked. Not even helped actually. There are only a few mechanisms by which seizure medications work so if the first three or so don’t work, then your chances of any med working are considerably reduced. All the drugs are variations on the same thing. So although there are a dozen more drugs to try for Lydia, we’ve become discouraged and slowed things down. Now she is on just one drug. Below you can see my nerd chart of seizures per week and all the medications we’ve tried.

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  1. Brain Surgery: For people who just aren’t seeing enough results with medications, there is surgery. Kids who have an identifiable area in the brain where the seizures are coming from sometimes can have that area removed. Kids who have generalized seizures, like Lydia, can have a callosotomy, a severing of the tissue that connects the two halves of the brain. We are not ready for this and maybe never will be. We’d need to weigh up the risks and benefits more carefully.
  2. VNS Implant: A less invasive surgery option is to get a Vagus Nerve Stimulator. Although it also isn’t likely to control seizures and does require actual equipment to be placed inside your body. Since I happen to be a Portland Mama, I couldn’t help but wonder if the equipment was BPA free. But I didn’t actually ask anyone because it’s like worrying about one’s daisies during a hurricane. Anyway, her VNS is zapping away quietly in the background at a frequency of 30 seconds every 5 minutes. I swipe the magnet every so often when she’s having a cluster but it is difficult to say if it has made any difference at all. But the VNS is very new and they say it can take 6 months to notice any improvement.
  3. Medical Marijuana: This will be a post in itself…still coming.
  4. Other Hippie Stuff: Frankincense, Mozart, omega 3-6-9, holy basil, sure, we do that stuff…working? No. Helping? Maybe a little.

Divide and Conquer Part 2: Therapy

The goal of therapy is to encourage Lydia’s physical, visual and cognitive skills. There are a few approaches and theories on the best way to do this. Insurance covers a little bit but you get what you get. A public program (Early Intervention) covers a little too. But by and large it is a DIY project, as in you figure out which exercises to do and then you do the exercises as often as possible throughout the day and you track which exercises you are doing to make sure you are covering the range and while you’re at it track any progress… As if I’m not already exhausted enough. Can someone please help me with this? Honestly I don’t have my routine down at all. I’m lucky if we get a few hamstring stretches in for the day. I feel guilty. If I am honest I have this suspicion that no amount of therapy will help her. She’s like a newborn. Even that awesome head-lifting trick, you know, the one from her first birthday? Well I’ve been dreading telling you all this but she doesn’t do it anymore. Not since she took the Sabril medicine. Although we’ve weaned from the Sabril, it’s just gone. I feel so hopeless.

  1. Kaiser Healthcare: Insurance covers 20 therapy visits a year which is already minimal but then you read the fine print and discover it is 20 visits to divide between all the therapists – speech, physical, occupational… They don’t even offer vision therapy. I did find out that your therapists could request 10 more visits. So we go every other week for an hour.
  2. Early Intervention: State run, federally mandated, someone comes to your house to offer therapy services. You get who you get but we are lucky with our gal. Her focus is physical therapy but she also does all sorts of ‘brain-building’ exercises and brings books, equipment, toys…she comes for 45 minutes each week and it’s a blessing.
  3. Vision Therapy: Lydia has CVI, or Cortical Vision Impairment. This means her eyes are healthy but her brain is bunk. Pretty much her whole story: super healthy kid but a bunk brain. Anyway some doctors believe you can improve CVI by teaching the brain to see. Unfortunately, it is mostly an east-coast belief – none of the doctors I’ve talked to out here have any clue. Luckily we got a vision therapist through Columbia Regional and she’s great. Except we only see her once a month, or even every other month.
  4. Private Therapy – $75 -$105/hr, not insurance covered of course, ‘alternative’ stuff like Feldenkrais/Anat Baniel, Children’s Intensive Therapy, hippotherapy, craniosacral. I’d like to do these things. Just not sure when. I mean you pay for an hour but there’s no way she’d last more than 20 minutes. Maybe when she’s older? Or will it be too late? If we try it now and it seems pointless will we ever try again? Sigh. Now you are seeing the true depths of conversations with myself.

Divide and Conquer Part 3: Diagnosis

Ah the elusive diagnosis. The unicorn part of Lydia. All the tests have come back negative or inconclusive. If we had a diagnosis we might have information about what has helped others cases, or we’d find others in the same situation, or maybe we’d get tapped into studies, medicine trials, funding, organizations…plus we’d get the added bonus of getting to actually SAY what our kiddo is effected by rather than just some general phrase like, “medically complicated,” or “neurological disorder.” Although if we ever get a named disease I imagine it will be so obscure we’ll still use the general terms anyway. I also tell people she has cerebral palsy, because this is as close to her symptoms as we can identify and because the community is both a) very welcoming b) right there with us on almost all the same issues. (To my CP peeps, THANK YOU!). And if we do ever get a diagnosis we’ll get all the predictions that come with it – super shortened lifespan and all that. At least we can still float around in happy obliviousness on that one.

  1. Dr. Dobyns – This is the geneticist-neurologist-pediatric-super-specialist at Seattle Children’s Hospital that we’ve been told to see since day one. Why has it not happened? Well, excuses, excuses. Diagnosis isn’t necessarily an urgent need and we had an insurance change and our new Kaiser geneticist said he wasn’t even going to try to get the referral in place (although he himself had ZERO guesses for us), and when I called Seattle Children’s they said we needed a referral…sigh. I WILL MAKE THIS HAPPEN, damnit.
  2. Boston Children’s Hospital – We just signed up for a study of Infantile Spasms where they will do a whole genome sequence on Lydia, Mark and myself. Uh, what? Yes! Seriously! If they find any answers we’ll know in about a year. They are still recruiting, if anyone out there is interested. You don’t need to go to Boston, it costs nothing, medically complicated ok. Ask me if you want contact info.
  3. Random Soliciting Package – Another option is to put together a summary of Lydia’s medical information and mail it out to doctor’s across the country who might have some ideas…

So you know, after all that I just try to actually enjoy my time with her. Also try to keep the house just above filthy and the food edible. Oh yes and I have an adorable and loving other child who happens to need parenting too. Oh and a husband. He’d probably like to see me look up from my gloom once and while. But really, seriously, I wouldn’t change a thing in my life. Well, okay, just one thing. Not even like, ‘make her perfectly normal,’ but just ‘stop the seizures, give her a chance.’ That’d do it for me. I’ve never really wanted to be famous or rich or patent a world-changing invention. I’ve always just wanted a simple quiet life with a healthy little family. Seems like not too much to ask no? Please?

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