Doing Well

Melanie has been doing very well lately. The rest of us have been suffering from long-lasting colds and sinusitis and bronchitis.  Through it all, Melanie was 100% and still is! We got sick while she was still on antibiotics, which really worked to get her well again.

We have been slowly tapering one of her meds since February. The drug is keppra, and she went on it a couple years ago when she was having tons of myoclonic jerks every day. These are the same type of jerk that most people experience at times when falling asleep, except for Melanie most of them were seizures. They're actually the type that her syndrome was formally named after: SMEI = Severe Myoclonic Epilepsy in Infancy.  When Melanie started keppra, these myoclonics nearly disappeared. Because of that, we don't know if that drug is still protecting her against those seizures, so we don't want to wean it completely. The reason for the taper is because she's simply on too many medications, and my mama gut tells me she doesn't need them. Plus, we have some side effects to try and resolve. Keppra is notorious for mood and behavior issues. Since starting the taper, we've seen Melanie become sweeter. The tantrums she would throw were apparently keppra tantrums-- we haven't seen those in a while. We're also seeing her talk more and repeat/attempt more words (often successfully). She seems brighter in mood and cognition, as seen in her language development and better understanding and interaction. I'd say she's grown up a few months in just the last month.  This of course is GREAT news!  It would be tough, though, if we saw these improvements in her well-being but a decrease in seizure control. Well... I have not seen any change on that front!  She still has small "seizurey" eye things going on multiple times a day, especially due to her pattern and photo sensitivity: I think some of that activity might be myoclonic.  So I have been watching that especially closely, but I see no increase-- in fact, possibly even a decrease.  If this taper continues to go so well, we will stay at a lower dose while we try tapering her depakote. That one is bad for the liver, and we suspect it may be affecting her appetite. Please pray both of these tapers go smoothly, so more of Melanie can come out and she can learn and grow even more!

We just completed our second intensive week of ABM. I see a pattern now in the way she handles these weeks: Day 1 is novel, Day 2 is awful b/c she just wants to be done, Day 3 is a bit better but still not in the groove, Day 4 is when it clicks... we didn't do a Day 5 this time, but that would have gone well too. So, now we will be going once a week for a few weeks, then another intensive week w/ a modified schedule to fit Melanie's pattern: 3 days of 1-a-day, then 2 days of 2-a-day. Save her energy and our time and money. ;-)  I feel more comfrotable with the whole ABM thing now, and with her teacher (who has a very different personality and lifestyle than I do). And now I have more things to do with her and ways to encourage her to move at home.

This coming Monday, March 26 is Global Purple Day for Epilepsy. Remember to wear PURPLE for Melanie and any other loved ones of yours with epilepsy. And wear your Melanie button if you have one.

Sinusitis... again

Melanie caught a cold from her brother, and that has once again turned into sinusitis. She started getting sick last Monday at Gma and Gpa Johnson's house, woke up next morning blotchy and sickie for her neurology appointment, then had a seizure in the car just as we were dropping off Grandma Corinne at her house. The Lord protected us from an uncomfortable/precarious situation, with the seizure starting in their driveway, rather than on the interstate on our way home at night with just Mommy and James in the car. This one was about 20 minutes total, plus another 40 minutes of post-ictal shivers, discomfort and quasi-sleep. Though I'm never glad to see her seize, I was thankful that this one followed the same pattern as all her other ones, but with much clearer boundaries between each phase.  All of Melanie's episodes are rather ambiguous, and though we are seasoned in this, Nick and I still find ourselves most of the time saying to each other, "Is it over? Is this just post-ictal? Look at her eyes..."  After last week, I think I will be more prepared to distinguish between non-convulsive seizure and post-ictal sleepiness in the future.
I don't like this new trend of Melanie's illnesses turning into sinusitis, but today the doctor gave me some tips for avoiding this in the future. She's been mostly miserable since Thursday at least. We're all tired of the goup and the squeals and screams.

It recently occured to me that Melanie's seizure trigger now is not actually a fever. She did not have a fever Monday night, but she did Friday night-- with no seizure. This is the usual pattern: seize first, then show symptoms and get fevers later without seizing. So the trigger must be an immune response, right as her body's coming down with something. I posted this idea in our parent support group and found other parents who witness the same pattern. There has been some study on inflammation triggering seizures, and apparently there is a doctor who is interested in researching this connection further. Some parents said they've been told that the sodium channels are involved in immune responses. (Mutations in the sodium channel genes: i.e. SCN1-A are the main cause of Dravet Syndrome.)

I'll post again later with a summary of our neurology follow-up last week.
Also, I know some of you may not feel the need to read all of these details, but I'm including them for the benefit of our long-distance family members who I'm sure are happy to have them. :-)

~Claire

Anat Baniel Method

Melanie finished a 5-day intensive week of Anat Baniel Method (ABM) on February 18th.  The week started on Valentine's Day, and we traveled roughly 25 minutes north to Glendale each day for two 40-minute lessons with Pati (pronounced Patty), an ABM pracitioner.  We had about an hour and a half between lessons to rest. We went to the Brown Deer library for story time, or to a coffee shop to eat and hang out during our break. Melanie was tired at the end of each day because it was nap time, but she did not show signs of fatigue! But one hour-and-a-half morning at school wipes her out. This is pretty significant.

This body work is hard to describe, but this website should explain it better than I could. http://www.anatbanielmethod.com/  Essentially, this method recognizes the incredible plasticity of the brain and the ability to "teach" it to learn through movement. This won't teach her brain or body things it doesn't know, but it will help her access what is already there, as well as help her brain to learn more effectively. Pati discovered on the first day that there is a large portion of Melanie's back that is very rigid. Somewhere along the way, as Melanie was developing and learning to move, with the ataxia she suffers from Dravet and from the meds, her brain decided "I wobble and fall down a lot when I move like that, so I'll stiffen my back to stay upright." But that stiffness gets in the way of all her movements. It hinders her body-brain communication, and she's not really "feeling" her legs, feet, etc.  Pati is helping her to feel her body more, and we have already seen some small improvements. By the way, this should- and already has done- benefit her speech and mood. It's like a release of her abilities. Below are the posts I put up in our Dravet support group:

Anat Baniel Method is WORKING! Melanie is moving with more purpose and fewer wobbles and tremors. Wednesday was the big "learning switch" for her. I saw it in the bathtub last night. Organized, precise movements-- with BOTH hands. Other people might not notice, but I about fell off my stool when I saw how she was playing in the tub. And her legs are moving more softly. I saw her walking today- even in her shoes- with a bit of a roll step, instead of stomps. After just 4 days....

Here are the basic/main concepts we've gleaned from it: Instead of traditional therapies, which impose goals onto the kid and push them perhaps beyond what they're ready for, this starts from within the kid and what they/their body can do. I remember our teacher saying, "If I try to move her leg over here, but she doesn't like that, I don't push. I move it over here and work back to that place. Those slow movements create new pathways to get to that new place." (Something like that.) Basically, this involves lots of gentle touching and slow movements: teaching the brain to function and learn through movement. She keeps talking about the "learning switch," which I have actually *seen* happen in these lessons. When Melanie quiets down and you can actually see her listen to her body and maybe move in a new way.

 She is using her left hand more-- very often her LH sits in her lap while her RH works b/c she needs stability and it's what's comfortable. Today, coming home from her last lesson, she stepped down a step with her left foot: she never does that. Stepping down is very precarious for her and she almost always goes right first. She's already saying and attempting more words. I've seen her back and neck curl in a way I've never seen before. I see a small roll step most of the time when she walks now. These are all still small changes- probably too small for friends to really notice- but they're there.