I Guess I Jinxed Things

Because not long after posting my last post (on November 20th) things got very tiring with Pele. Of course that is more the norm than the exception. But for some reason, despite continued seizure control (which I'm very grateful for) and improved cognition (which I'm also grateful for), Pele has been supremely fussy, grumpy and stubborn.

It's a Herculean effort to get her to go anywhere--and I'm not just talking trips, I'm talking ANYWHERE. To the store for food...to a toy store, even! It's insane. I find myself feeling trapped and depressed a lot of the time. I've been brainstorming ways to break through this and I've tried numerous things, but nothing has helped so far.  When we do go it's just awful.

As with many things that involve Pele I often have to tough it out until she gets over it, because forcing through often makes things a hell of a lot worse. Oh well. No one said life was easy. I just feel like telling every young couple in America (or the world) to not have kids. Sometimes it doesn't seem worth it.

But...I know it is.

Love,
Hannah

A Good Couple of Months

So, two months almost exactly have passed since my last update, so I thought it wouldn't be a bad idea to go ahead and do a quick post, since the past couple of months have yielded a lot of good surprises.

How have the past couple of months progressed? Well, to be honest...not badly! I don't want to jinx anything (nevermind superstition anyway, eh?) but we have noticed a wide range of improvements in Pele.  From cognition gains to emotional control...we've been very pleased with what we've seen.

Since lowering her medication dose on September 26th for the last time in 2011 (beginning gradually again in early 2012) we have seen a dramatic increase in learning (including the beginnings of reading), and a general improvement in her cognition, attention and interaction. Pele is almost indistinguishable from most of her peers. Even though she has some minor language delays still (mostly due, I believe, to her still being on the medication) she is otherwise doing a lot better than she was.

This is not to say that things are 'normal' but they are closer to normal than I've ever seen them. If things continue along this path, then Pele probably will be considered neurotypical, and that makes me very happy. What also makes me happy is Pele's continued seizure control--almost two years now come January.

For now we're handling Pele's education at home. We're working on numbers and very early math, reading and writing, and other basic skills. I'll re-assess her situation as time goes by. With her special diet (no gluten, dairy/casein, soy, peanuts, etc) I don't feel like throwing her in a typical school with its glut of unhealthy, allergen-laden foods and also its 'lost in the shuffle' child syndrome.

I really want to get Pele going on our own before we throw her into the public school fray, if ever. My hope is that I'll either get into a good home school groove or that I'll find an affordable Waldorf school that I'd be comfortable sending her to, and where I'd know her dietary and supplement considerations would be honored.

This will work for now. I am just grateful things are going as well as they are. If that means having to homeschool her, then so be it. I know I'm lucky to be able to stay with her, even if I sometimes wish I had more time to myself, even if I sometimes wonder what I'm doing. But at least my efforts and my heart are in alignment, and I am working on doing what works for us.

In addition to these wonderful strides, we've also noted Pele's sleep stabilizing. She is sleeping a completely full night of sleep, in her room and in her own bed, for 10-11 hours a night! This is a far cry from what her sleep was like even as little as half a year ago. I know getting adequate rest is also essential to mental acuity and emotional stability. 

As the year winds down I'm mostly trying to integrate what we've learned so far, and make goals for Pele's future, in a way that's sensible and also conducive to a continued environment of growth. Pele will surprise us all, I know, with her tenacity, sweetness, spunk, humor and intelligence.

Love,
Holistic Hannah

An Encouraging Medication Update

We're most of the way through September so I thought I'd furnish an update on Pele since she's been in the process of lowering her meds for a good while now. So far, we've made a few adjustments. I have to admit, though I have noticed a few positive changes mostly I've been struggling with the difficult aspects of tapering, which are interrupted sleep, mood and behavior issues and other such things.

But, I have to say (with some surprise) that the last tapering, just about a week ago, has yielded more than either Jeremy or I expected it to. After hearing such glowing reports from her doctors about how wonderful it would be to lower her medications we were not too pleased with the mediocre and sometimes frustratingly slow results of any of the (sometimes hardcore) adjustments we made. 

This last set of changes sneaked up on us somehow. We noticed the same pattern of moodiness and broken sleep following the medication lowering that we had come to expect, but suddenly we started seeing and hearing some amazing things coming out of Pele. The most notable changes are in her verbal communication. Whereas before almost every sentence that she uttered was some sort of wacky sentence fragment, we now notice much tighter, more accurate sentence structures--almost spontaneously coming out of her.

This is something I first noticed, but only in brief spurts in the middle of the night, maybe a few months ago, following the B-12 injections which started at the end of March this year. After struggling to speak during the day, I would be puzzled by how much more clearly she could speak in the wee hours of the morning, when she'd inexplicably wake at 2, 3 or maybe 4 am. I would always lay there, dazed, wondering why she was able to do this but only in the middle of the night.

She still does what I described in the above paragraph, but now this ability is starting to permeate the daytime, too, which is an amazing thing. I am thinking now that it MUST be due to lowering the medication, though I can't be sure. I wish I had better examples to give you of this ability, but suffice to say it's very noticeable. Furthermore, she hears everything we say and is constantly interjecting her 2 cents, responding to conversations---where before she would tune out much of what we said, or hum and babble on her own. 

A funny example of this fledgling awareness happened a couple days ago. Jeremy and I were in the front seat of the car talking about a noise the car was making. I was trying to describe the noise and Jeremy said he wasn't sure what I was talking about and that he might hear something but he wasn't sure if it was the noise I was hearing. From the backseat we hear Pele saying (somewhat impatiently), 'Well I can hear the noise!' It was so funny we couldn't help but laugh.

I'll be sure to update again as we are lowering the meds slightly again tonight. We are not completely removing them yet but we're encouraged by her improvements and continued seizure control. I just wanted to share that with you all.

Love,

Hannah

A Brief Photo Essay of Pele's Personality

Pele in her bike gear as she returns from a bike ride.

Pele displaying one of her zany, colorful and fun outfits.

Pele as 'Mr. Bat Man'

With an invention of hers called 'The Tickler!'

Tiring Topics of Interest: Moodiness and Other Difficulties of Parenting Pele

See that smiling face? That could change in a split second.

Something that I don't like to deal with, talk about or even think about, is the day to day struggles I have with Pele's moods, behavior, sensory issues and side effects.  I don't quite know what to do with my feelings on this matter. If I complain about them to friends and family I feel whiny. The well meaning friend or family member will either try to comfort me, or say things aren't that bad, or maybe not understand the magnitude of how bad it is. Either way, I find myself not feeling any better about any of it on any given day. There are some topics which help me to talk about them--apparently this isn't one of them. Or if it is, I haven't figured out how to talk about it in a way that makes me feel better. I keep trying things to help--consulting experts, but none of it goes that far toward helping.

It's just one of those drudgery things. Does it bother me when Pele gets overstimulated after going to one place, yelling or hitting or losing it in public on a daily basis? Yes...it does. Does knowing that discipline and the traditional things aren't helping my particular situation--does this hurt me and make me feel ineffectual? Yes. Does knowing that the medications she's on to control her seizures are simply exacerbating these neurological symptoms help? Not really. There's nothing I can do about that. We're very gradually reducing her medications (which causes side effects in and of itself) but in the meantime, and perhaps indefinitely, there are yet more side effects, mood, behavior and sleep problems to contend with.

To top this off...I would not count patience among one of my virtues, and it hasn't seemed to have grown that much in recent years. If anything my weariness has grown more than my ability to handle stress. I'm not sure I buy into the adage that what doesn't break you will make you stronger. It's more like you kind of come to expect that things won't go well, and you adjust your output accordingly. You don't function better, you just shift your functioning around to accommodate whatever the problem is. It's like multi-tasking. There's no such thing as multi-tasking. It's just doing multiple things badly, or not as well as if you're focusing on one. I feel like that's what is happening. My energy is all going into this, but at the same time, it frustrates me because I feel like it's going nowhere.

Yes, somewhere down the line I may look back and see this as a temporary sacrifice. But temporary can be a period of years...decades, even. And at present, I have to find things that make me happier, because I really can only take so much drudgery, side effects, stress and boredom. To me, that's no way for anyone to live. I am realizing I can't just focus on this. I need to find another way of functioning, as Pele very slowly, very gradually learns to function better on her own.

There is a certain sadness to me realizing this isn't going to be easy and may never be very smooth with Pele. I keep hoping something will change that. It may or may not. I need to redefine my idea of success in this matter--knowing my limitations and understanding what I need to feel more whole.

Love,
Holistic Hannah

Medication Tapering Update

The reluctant princess (left) versus the Volcano Princess (right)

I decided I should post since I hadn't written anything to y'all about Pele's initial response to the very gradual tapering of her medications.

On July 26th we started to lower Pele's medications, taking .5ml from each of the two medications. At first, I'll be honest, I was not happy with the increased moodiness and disturbed sleep, but as that week drew to a close her mood began to settle down and her sleep went (mostly) back to normal. In addition, I noticed some new cognitive gains, especially in the areas of speech and interaction.

Now, we're doing a smaller adjustment, maybe half the amount of the last titration, that we started yesterday morning. Again, I noted some increased hyperactivity and Pele waking up too early, but despite that, she has shown a remarkable ability to adapt.

Having said that, we intend to take this slowly, then hold at a certain level for several months rather than remove the medications entirely.

Love,
Holistic Hannah

Christmas in July: Lowering the Medications

Yesterday we had an appointment with the integrative psychiatrist to talk to to him about (slowly) titrating Pele down from the two anti-seizure medications she is on. This is a big deal.

Now, this is not a process we're taking on willy-nilly. In fact, our tentative plan is to take it down by .5 ml per medicine and leave it there for a month, then see how she's doing and do it again. Then when she's on a lower dose (but not entirely off the medication) we'll hold for several months. At each stage we'll reassess to see how we should proceed.

If there's any sign of trouble or seizure activity we'll go back on the meds right away. We're hoping that she's been seizure-free a sufficient amount of time and that we've identified some of the main triggers such as the B-12 and B-6 deficiencies, and are also watching her diet, stress level and other factors.

I'll be honest and say that I'm incredibly nervous about this. Half the problem is not just whether she'll have seizure again, but in not worrying about it. Once you've been through something like this it becomes very difficult not to clench up constantly, thinking that at any moment she could have a grand mal seizure. That is where we were just under two years ago. I just don't want us to go back there this fall, so I'm trying to be especially cautious about our efforts now.

She continues to avoid her IgG food allergies, as well as a modified yeast diet to keep yeast growth at bay. She took the anti-fungal course for 10 days and that ended several days ago, and now she's avoiding added sweeteners and is only allowed a certain (small) amount of grains and fruit a day. It wasn't easy, especially at first, but I'm starting to get used to it, although going out to eat is next to impossible. Even so, the important thing is always Pele's health.

There are many things that could go wrong, and no one can tell us what will happen, and I cannot tell you how many hundreds of stories I've read about folks who have stopped medications and stopped having seizures for a certain amount of time (sometimes months, sometimes years, sometimes even decades) only to have a severe, life-threatening seizure.

I know that I owe it to Pele to try to remove or at least dramatically lower her medications, so that she can grow and thrive as she deserves to.

Wish us luck.

Love,
Holistic Hannah