Joseph's brothers held hate and malice in their hearts toward their favored brother. They threw him in a pit and planned to kill him. But just in time, some foreigners just "happened" to be passing by, and their greedy hearts led them to make money off of their brother instead, so they sold him as a slave. Thus, Joseph was thrown into a dreadful fate over which he had no control. Through a series of events (many of which looked like coincidences), Joseph became second in command under the king of Egypt. He saved the country from death and utter ruin in extreme famine. Ultimately, he saved his family- his very brothers who hated him and sinned against him in the worst way- from death and ruin. And because God put Joseph in this place of power, with a righteous heart full of love and forgiveness, his family was brought to Egypt to ride out the remainder of the famine and father the nation of Israel.
This is my favorite piece of bible history. There are so many lessons and reminders and promises woven throughout the story. The most obvious and comforting of these is that God will work all things to the good of those who love him. Joseph's brothers acted in malice and sin: God turned even that to an enormous blessing for Joseph and even his wicked brothers, and ultimately the nation of Israel, God's chosen people. It is an awesome lesson, reminder, and promise from God. I'm always blown away when I think of it.
Today I was reminded that the Lord does these works in even what seem like the minutia of our lives. Two days ago I utterly forgot to give Melanie her morning meds. It completely slipped out of my brain for the entire day, until the evening when I was cleaning and dealing with a wailing and limp Melanie in post-ictal pain. I told Nick to throw me in the bad-mommy dungeon. Of course he didn't, and instead comforted me, but I threw myself in there anyway. It was my bad.
This morning I called the neurologist's office to discuss a couple things, and I said in my message, "In the past, Melanie has been able to miss a dose of meds and be fine- no seizures. The fact that this caused her to seize tells me that her current med doses are near their minimum: right at the door of her seizure threshold. Maybe we could increase [wonder drug] before tapering [yucky drug] any more." We were due to taper yucky drug another step yesterday... Of course I have held off on that.
What does this have to do with Joseph?? Well, I realized this morning that God brought some good out of my forgetting M's meds on Wednesday- a rare oversight- so that I could have a clear sign that she was teetering pretty close to the bottom of therapeutic in her med levels. So now we can approach tapers and increases with more wisdom and knowledge. Even as I write this, it seems almost petty. We could have seen the same thing if we had just continued on our taper schedule... but, without going into the details and subtleties of what we know of Melanie and her seizurey brain... trust me, this was a much more definite, clear, and perhaps even less painful answer. God's good.
She is fine now. The seizure wasn't even discovered until after it was over- so it was short and self-ending. Nick didn't even recognize that she was post-ictal when she was hot, limp and wailing, with wet pants. She woke up chipper, sassy and defiant the next day. Her preschool teacher barely recognized her and even had to put her in a chair after too many No's. This is normal day-after behavior, so she was given much grace (but not too much!). I'm seeing more seizureyness lately, so I'm waiting to hear back from the neurology nurse, expecting her to tell us to increase diamox before a further taper of depakote. ...I am totally a Dravet M.D. (Mommy Doctor).
deo gratias
Friday, March 22, 2013
Thursday, February 21, 2013
Minnesota Nice
We had a successful trip to MN, with a happy report. I traveled with both kids and my dad up to the Twin Cities, for a neurology appointment and then an overnight EEG at Gillette Children's.
The neurologist was so pleased with how well Melanie is doing. She's growing and learning and developing, and she's only had four seizures since our last appointment, in July. She seemed quite interested in my report that after our last decrease in Yucky-Drug, before Christmas, I started to hear frequent pauses in her speech, along with lots of crankiness. She agreed with my hypothesis that she was having bursts of spikes in her brain (short seizures), and that those frequent blips would make her cranky. Well, what she found interesting was that those pauses improved when I added an extra 1/4 pill of Wonder-Drug in the mornings, and then they seemed to disappear when I bumped that up to an extra 1/2 pill. (I had made that change on my own, since she was out of town for the holidays.) So that tells us that Wonder-Drug has the capability to do the work of Yucky-Drug, without ANY apparent side effects. Yucky-Drug is yucky because it poisons just about everything: liver, cognition, appetite, growth, motor development, speech, mood.... did I miss anything? Yeah, it's pretty nasty. Oh, and too much of Wonder-Drug can make her blood too acidic, but her bicarb levels taken during our stay were almost better than normal, so we're safe there-- with room to go up if needed.
Well, the main reason I wanted this overnight EEG, besides the fact that she hasn't had even a short EEG in over a year and a half, was because I've been worried about nocturnal seizures. Most Dravet kids develop almost exclusively nocturnals at some point-- many develop them by this age. And I hear Melanie wake somewhat frequently through the night... Well, Dr. Wical came to talk with me in the morning, after reading her EEG (I think she's Superwoman- how did she read that whole thing so fast?). She walked in and said, "Her EEG looks rrrreeeally good!" She listed the few abnormalities/spikey bursts she saw, which were almost minuscule for a Dravet patient. And her nighttime waking is just that: plain old waking, not from seizures. Yay! That was the biggest comfort.
So Dr. W was definitely happy and ready to taper Yucky-Drug some more. We had already cut it down to half the dose she was on for so long, and now we have a schedule to cut it in half again over the next 6 weeks. Oh, I hope this is a fruitful and easy taper. I can live with a very low dose of Yucky-Drug if she seems to really need it, though I'd be thrilled to chuck it out the window. She's also on a teeny-tiny dose of Could-Be-Dangerous-Drug, and a smallish dose of Not-Sure-It's-Needed-Drug (which I continue to skimp on more each week or so-- trying to slowly nudge it out of the cocktail).
Dr. Wical is so impressed with how Wonder-Drug has been working for Melanie, that she said it will be her next Dravet treatment study. All because of Melanie! And she's ready to give Dr. Hecox in Milwaukee a huge pat on the back for his unconventional choice for Melanie two years ago. Wonder-Drug, by the way is acetezolamide (Diamox). Yucky-Drug is divalproex/valproic acid/epilim/Depakote.
Besides the drug taper, the plan is to add zinc and selenium to her daily supplements, and to continue with our trial of gluten-free. The jury's still out on that, but it takes a while for the gut to heal from gluten, so we're sticking with it for a while yet.
If there were a utopian hospital, I think it would be Gillette Children's in St. Paul. The people, amenities, everything... just superb. Almost hotel-like! And to top everything off, our morning nurse, Lance, did awesome Elmo and Tigger voices! Everyone loves to make Melanie smile and giggle.
The neurologist was so pleased with how well Melanie is doing. She's growing and learning and developing, and she's only had four seizures since our last appointment, in July. She seemed quite interested in my report that after our last decrease in Yucky-Drug, before Christmas, I started to hear frequent pauses in her speech, along with lots of crankiness. She agreed with my hypothesis that she was having bursts of spikes in her brain (short seizures), and that those frequent blips would make her cranky. Well, what she found interesting was that those pauses improved when I added an extra 1/4 pill of Wonder-Drug in the mornings, and then they seemed to disappear when I bumped that up to an extra 1/2 pill. (I had made that change on my own, since she was out of town for the holidays.) So that tells us that Wonder-Drug has the capability to do the work of Yucky-Drug, without ANY apparent side effects. Yucky-Drug is yucky because it poisons just about everything: liver, cognition, appetite, growth, motor development, speech, mood.... did I miss anything? Yeah, it's pretty nasty. Oh, and too much of Wonder-Drug can make her blood too acidic, but her bicarb levels taken during our stay were almost better than normal, so we're safe there-- with room to go up if needed.
Well, the main reason I wanted this overnight EEG, besides the fact that she hasn't had even a short EEG in over a year and a half, was because I've been worried about nocturnal seizures. Most Dravet kids develop almost exclusively nocturnals at some point-- many develop them by this age. And I hear Melanie wake somewhat frequently through the night... Well, Dr. Wical came to talk with me in the morning, after reading her EEG (I think she's Superwoman- how did she read that whole thing so fast?). She walked in and said, "Her EEG looks rrrreeeally good!" She listed the few abnormalities/spikey bursts she saw, which were almost minuscule for a Dravet patient. And her nighttime waking is just that: plain old waking, not from seizures. Yay! That was the biggest comfort.
So Dr. W was definitely happy and ready to taper Yucky-Drug some more. We had already cut it down to half the dose she was on for so long, and now we have a schedule to cut it in half again over the next 6 weeks. Oh, I hope this is a fruitful and easy taper. I can live with a very low dose of Yucky-Drug if she seems to really need it, though I'd be thrilled to chuck it out the window. She's also on a teeny-tiny dose of Could-Be-Dangerous-Drug, and a smallish dose of Not-Sure-It's-Needed-Drug (which I continue to skimp on more each week or so-- trying to slowly nudge it out of the cocktail).
Dr. Wical is so impressed with how Wonder-Drug has been working for Melanie, that she said it will be her next Dravet treatment study. All because of Melanie! And she's ready to give Dr. Hecox in Milwaukee a huge pat on the back for his unconventional choice for Melanie two years ago. Wonder-Drug, by the way is acetezolamide (Diamox). Yucky-Drug is divalproex/valproic acid/epilim/Depakote.
Besides the drug taper, the plan is to add zinc and selenium to her daily supplements, and to continue with our trial of gluten-free. The jury's still out on that, but it takes a while for the gut to heal from gluten, so we're sticking with it for a while yet.
If there were a utopian hospital, I think it would be Gillette Children's in St. Paul. The people, amenities, everything... just superb. Almost hotel-like! And to top everything off, our morning nurse, Lance, did awesome Elmo and Tigger voices! Everyone loves to make Melanie smile and giggle.
 |
| Rawr! The EEG Lion! |
Thursday, February 7, 2013
Hello Dairy
Melanie went without dairy for about four weeks. The first three of those weeks were hard to decipher because she got a cold. That always knocks her back at least 2.5 weeks. Her lightbulb clicked back on last Tuesday, and she's been super chatty and a bucket of bubbles since then. I also choose to believe that her seizure in the wee hours on Friday, January 25 helped hit the "reset" button, so we've seen the usual language explosion after she recovered.
Combing through all the swings she's gone through in those weeks, we never really saw a measurable difference in her when she was casein free. Since casein should be completely out of the system in at least three weeks (probably more like some days), I figured we were seeing a pretty pure picture, once she had recovered from the cold. We gave her a "challenge" with a serving of cheese last Saturday, and waited and watched for three days. No changes whatsoever. So yay!! She can have dairy again! Whew-- I was getting sick of that. Milk is surprisingly hard to avoid on ingredient lists. Plus, I never really knew what exactly I was feeding her with the few dairy substitutions we tried. I may still try avoiding too much dairy in the evening. She might have been sleeping better when we first weaned it in the evenings.
She has been gluten free for a few weeks now, and we're still unsure of any changes with that. Gluten can take much longer to completely leave the system, so this trial might take a bit longer. It really has not been very hard at all. Thanks to Karen for sharing her all-purpose flour mix with me: it really was the kick-start I needed. Melanie loves Karen's bread recipe, the chicken nuggets I made were delicious!, and it's pretty easy to find suitable GF snacks. I've purchased a few boxed/bagged snacks, but mostly it's forcing us to go more simple, natural and healthy. I'm making popcorn regularly, she loves Beanitos chips, guacamole, nuts, seeds, carrots (she could eat a whole bag in one sitting), and now she can have the occasional string cheese. GF pasta is super easy, tacos and tonight's turkey burgers are easy- she never ate them in tortillas or buns anyway. I'm going to try a GF pizza crust some night... So many people are gluten free now, that it's not so hard to do at all. Labeling is convenient, finding entire aisles devoted to GF is common, and I wonder if some companies have just decided it's more profitable to remove any traces of gluten their products uses to have, because enough people would stop buying them otherwise. If we need to keep gluten out of Melanie's diet (and maybe mom will try it too?), I think it will be very doable. I know birthdays and such may be an issue, but I already have a plan for those.
I'm looking forward to any answers we may get in a couple weeks when we travel to MN for a neurology appointment and then overnight EEG. I'm suspicious of possible subclinical and nocturnal things happening. But if I'm right, please pray that we won't let that scare us into bumping up her meds more and losing the great strides she's been making lately in her development. If anything, we need to lower them more so she can come alive even more!
Combing through all the swings she's gone through in those weeks, we never really saw a measurable difference in her when she was casein free. Since casein should be completely out of the system in at least three weeks (probably more like some days), I figured we were seeing a pretty pure picture, once she had recovered from the cold. We gave her a "challenge" with a serving of cheese last Saturday, and waited and watched for three days. No changes whatsoever. So yay!! She can have dairy again! Whew-- I was getting sick of that. Milk is surprisingly hard to avoid on ingredient lists. Plus, I never really knew what exactly I was feeding her with the few dairy substitutions we tried. I may still try avoiding too much dairy in the evening. She might have been sleeping better when we first weaned it in the evenings.
She has been gluten free for a few weeks now, and we're still unsure of any changes with that. Gluten can take much longer to completely leave the system, so this trial might take a bit longer. It really has not been very hard at all. Thanks to Karen for sharing her all-purpose flour mix with me: it really was the kick-start I needed. Melanie loves Karen's bread recipe, the chicken nuggets I made were delicious!, and it's pretty easy to find suitable GF snacks. I've purchased a few boxed/bagged snacks, but mostly it's forcing us to go more simple, natural and healthy. I'm making popcorn regularly, she loves Beanitos chips, guacamole, nuts, seeds, carrots (she could eat a whole bag in one sitting), and now she can have the occasional string cheese. GF pasta is super easy, tacos and tonight's turkey burgers are easy- she never ate them in tortillas or buns anyway. I'm going to try a GF pizza crust some night... So many people are gluten free now, that it's not so hard to do at all. Labeling is convenient, finding entire aisles devoted to GF is common, and I wonder if some companies have just decided it's more profitable to remove any traces of gluten their products uses to have, because enough people would stop buying them otherwise. If we need to keep gluten out of Melanie's diet (and maybe mom will try it too?), I think it will be very doable. I know birthdays and such may be an issue, but I already have a plan for those.
I'm looking forward to any answers we may get in a couple weeks when we travel to MN for a neurology appointment and then overnight EEG. I'm suspicious of possible subclinical and nocturnal things happening. But if I'm right, please pray that we won't let that scare us into bumping up her meds more and losing the great strides she's been making lately in her development. If anything, we need to lower them more so she can come alive even more!
Monday, January 28, 2013
Does its job
Well, the pulse-ox machine works for its intended purpose. Nick and I were repeatedly awoken by the alarm in the wee hours Friday. So, Nick went up a few times to untangle or fiddle with it to make it stop false-alarming. (that's his job, since I can't fall right back asleep after running upstairs) Well, it kept going off, so I went up to try it and to offer her water, since her sinuses are still draining from this cold. She was warm and trembling. Sight fever, so I gave ibuprofen and kept asking if she was ok. "Yes." do you feel sick? "no." I went down and got back in bed, and not two minutes later the alarm goes off again, I look on the monitor and see her arm outstretched and shaking...
Got the midazolam in quick and convulsions were soon over. Her eyes were goofy for a while, and she was barely responsive, so I gave the rest of the syringe at 8 minutes from the start. There was a whimpered moan with that, so I think she was coming out of it.
She didn't wake up to try and shake it off right away- just slipped into (finally) a deep, restful sleep. I lay down to sleep with her, but after an hour I realized I would never be able to sleep. I roused her and she responded, recovered, so I went back to my bed.
She's been ok since then. Unlike most Dravet parents, we get to ask "why?" Most DS kids have random seizures all the time, but for two years Melanie has only had them with sickness. She'd been through the worst of the cold already, so why now? Well, she had a fever so I thought it might be sinusitis, but there are no signs of that. In the morning I discovered that she had missed a dose of meds, which I'm thinking, combined with still suffering from the lingering cold symptoms, brought her threshold down. The fever could have been a result of seizure activity. Maybe the restlessness and trembling before the "big show" was like an aura, which is actually seizure activity itself.
I'm anxious to see her get over this cold, so we can see if the diet is helping at all. She's been totally GFCF for over a week, but we see no change yet. Keep the germs away! We need a healthy girl!
Got the midazolam in quick and convulsions were soon over. Her eyes were goofy for a while, and she was barely responsive, so I gave the rest of the syringe at 8 minutes from the start. There was a whimpered moan with that, so I think she was coming out of it.
She didn't wake up to try and shake it off right away- just slipped into (finally) a deep, restful sleep. I lay down to sleep with her, but after an hour I realized I would never be able to sleep. I roused her and she responded, recovered, so I went back to my bed.
She's been ok since then. Unlike most Dravet parents, we get to ask "why?" Most DS kids have random seizures all the time, but for two years Melanie has only had them with sickness. She'd been through the worst of the cold already, so why now? Well, she had a fever so I thought it might be sinusitis, but there are no signs of that. In the morning I discovered that she had missed a dose of meds, which I'm thinking, combined with still suffering from the lingering cold symptoms, brought her threshold down. The fever could have been a result of seizure activity. Maybe the restlessness and trembling before the "big show" was like an aura, which is actually seizure activity itself.
I'm anxious to see her get over this cold, so we can see if the diet is helping at all. She's been totally GFCF for over a week, but we see no change yet. Keep the germs away! We need a healthy girl!
Sunday, January 20, 2013
New diet
We are fully into the GFCF diet now. We removed dairy a couple weeks ago, and planned to stick with just that for three weeks. Melanie got sick about a week into it, so it was hard to decipher if cutting out dairy has made any difference. The first week of it, she seemed a bit more moody and easy to tantrums- a possible withdrawal symptom. But then again, perhaps she was just starting to get sick. And of course, when she is ill, all of her skills and overall wellness take a step back for a couple weeks.
I decided that it wasn't really worth waiting to start removing gluten. So I believe Friday was her first completely gluten-free day. We haven't seen any changes, and she is still under the weather. Feeding her hasn't really been much of an issue. I haven't even purchased special flours or baked anything, I haven't stocked up on GF pretzels or any of those substitute foods. She's been snacking on nuts, seeds, veggies, veggie chips, guacamole, popcorn from the family farm... She still asks for string cheese and crackers, but it hasn't been too hard to redirect her so far. She likes almond milk (lots of calcium) and even the disgusting "cheese" I've melted on corn chips and put on her taco bowl tonight. Blech. I'm thankful she's not picky.
Once she is fully recovered from this cold, we should start seeing if the diet is making any sort of impact on her in any ways.
I decided that it wasn't really worth waiting to start removing gluten. So I believe Friday was her first completely gluten-free day. We haven't seen any changes, and she is still under the weather. Feeding her hasn't really been much of an issue. I haven't even purchased special flours or baked anything, I haven't stocked up on GF pretzels or any of those substitute foods. She's been snacking on nuts, seeds, veggies, veggie chips, guacamole, popcorn from the family farm... She still asks for string cheese and crackers, but it hasn't been too hard to redirect her so far. She likes almond milk (lots of calcium) and even the disgusting "cheese" I've melted on corn chips and put on her taco bowl tonight. Blech. I'm thankful she's not picky.
Once she is fully recovered from this cold, we should start seeing if the diet is making any sort of impact on her in any ways.
Sunday, January 6, 2013
Jumping into a new diet, and Mommy plays doctor
We had a good holiday break. For a couple weeks before Christmas, Melanie had become quite screamy and moody, with frequent tantrums. I noticed that she would have frequent pauses mid-word while she was talking. She talks a lot, so I noticed it a lot. The only possible explanation I can think of is increased seizure spikes in her brain. This could explain the change in her mood and behavior: Imagine having a brain blip every 10 seconds or so throughout your day, every day. When someone is talking to you, you would miss a word or two each time that happened. If you're moving or doing a task, somehow your hand just made it from your mouth all the way down to the table in a split second- but you don't remember it actually traveling down. You know that was what you intended to do, but how did it just suddenly get there? When I know that sort of thing is going on, I try to cut down on sudden movements, which might confuse her, and I give her extra time to register things.
That kind of constant spike activity can really be a detriment to learning, as I recall hearing in a lecture at the Dravet conference. That would also explain why, after the initial boost in speech and cognition after our last depakote decrease, she seemed to be plateauing again. So, with the doctor out of town for the holidays, I decided to play neurologist myself, and added just an extra 1/4 pill of diamox (our favorite drug) in the mornings. Instant change! Part of it was the happiness and excitement of Christmas and traveling to MN which boosted her spirits, but it was clear that she was happier and calmer in her brain. The pauses decreased, and speech started exploding again! I think we could safely boost it to an extra 1/2 pill, to help even more. I'm sure this set-back happened because of the tapering of depakote, but I refuse to go back up on that awful drug....especially after seeing that diamox can effectively take its place.
Two big news items for Melanie, besides what you just read: On Thursday night (1/3/13), Melanie jumped, with both feet off the floor, for the first time ever! She seemed to reach both hands between her legs to pull herself up by the butt to do it-- it was cute. And she did it more than once, and more times the next morning. Of course it's not consistent, but she can do it!
The other news is her new diet. We're starting the GFCF diet for her, to see what sort of brain-clearing improvements we may be able to get from it. We're starting by cutting out casein (dairy) for at least three weeks, and then we'll cut out gluten for three weeks. Perhaps then we'll try adding back casein to figure out which, if any of those things actually makes a difference. I'm kind of thinking already that dairy has been affecting her sleep. She has slept a little better and woken up happier without dairy at night. She's still had a little during the past few days, as we sort of ease into it, but I've tried avoiding it in the evenings. I will be taking careful notes.
James and mom start school again tomorrow, so I have been saving Melanie's Christmas presents so that she has brand new activities to do during school. We all need routine again after the break.
That kind of constant spike activity can really be a detriment to learning, as I recall hearing in a lecture at the Dravet conference. That would also explain why, after the initial boost in speech and cognition after our last depakote decrease, she seemed to be plateauing again. So, with the doctor out of town for the holidays, I decided to play neurologist myself, and added just an extra 1/4 pill of diamox (our favorite drug) in the mornings. Instant change! Part of it was the happiness and excitement of Christmas and traveling to MN which boosted her spirits, but it was clear that she was happier and calmer in her brain. The pauses decreased, and speech started exploding again! I think we could safely boost it to an extra 1/2 pill, to help even more. I'm sure this set-back happened because of the tapering of depakote, but I refuse to go back up on that awful drug....especially after seeing that diamox can effectively take its place.
Two big news items for Melanie, besides what you just read: On Thursday night (1/3/13), Melanie jumped, with both feet off the floor, for the first time ever! She seemed to reach both hands between her legs to pull herself up by the butt to do it-- it was cute. And she did it more than once, and more times the next morning. Of course it's not consistent, but she can do it!
The other news is her new diet. We're starting the GFCF diet for her, to see what sort of brain-clearing improvements we may be able to get from it. We're starting by cutting out casein (dairy) for at least three weeks, and then we'll cut out gluten for three weeks. Perhaps then we'll try adding back casein to figure out which, if any of those things actually makes a difference. I'm kind of thinking already that dairy has been affecting her sleep. She has slept a little better and woken up happier without dairy at night. She's still had a little during the past few days, as we sort of ease into it, but I've tried avoiding it in the evenings. I will be taking careful notes.
James and mom start school again tomorrow, so I have been saving Melanie's Christmas presents so that she has brand new activities to do during school. We all need routine again after the break.
Sunday, December 9, 2012
More sleep, less poison, more words... no cheese
We recently acquired a new piece of equipment which has been such a blessing already in peace of mind. After a long, exhausting battle with the insurance company, we now have a pulse oximeter in Melanie's room. It's just a small machine attached to a glowing sensor wrapped around her toe whenever she sleeps, monitoring her oxygen saturation and heart rate. We have it set to alarm if her O2 drops below 88%, indicating a possible seizure. In my mind, I also think of the higher risk of SUDEP (sudden unexplained death in epilepsy) in Dravet kids. One of my biggest fears, besides not waking to the sounds of a seizure in the middle of the night, is waking up to find Melanie has slipped away while I slept. I know this pulse ox won't save her life if an organ decides to shut down, but I can't even explain the peace it brings me to know that she will never simply slip away without our knowing it. Of course the main reason for having this machine is to be alerted to nocturnal seizures. The few times I have awoken to the seizure breathing sounds it he middle of the night, I have run up to her room to find her face-down and blue. Now with this machine, I don't have to worry that I might not wake up to those faint sounds next time. I can sleep so much better now!
Melanie's last seizure was the Saturday before Thanksgiving. As usual, she regressed in speech, mood, behavior, etc. after the seizure. It usually takes at least two weeks for her to get back to baseline. This was the shortest tonic clonic (grand mal) ever, because of the wonder-rescue-med, but it took two and a half weeks for her to recover. On Wednesday of last week, I saw something click in her, and she became brighter, happier and better. During that post-seizure slump she may not lose a whole lot of words or anything too severe, but her forward progress definitely halts for a time. When she snapped out of it this week, we instantly started hearing new words and speech sounds, and her cognition/understanding started improving again. I'm not sure how much this has to do with it, but at that same time we tapered her ickiest medication. We've been slowly bringing down her depakote, since it messes with... everything: liver, appetite, metabolism, behavior, cognition, speech.... It's poison. Every time I request a decrease, it makes our neurologist "nervous," but of course she always leaves it up to us. It doesn't make mom nervous, though. I would just love to cut this one out of her cocktail completely! I see Melanie emerge more and more with each decrease.
We are planning on trying a special diet in the new year. It's gluten-free, casein(dairy)-free, and it is touted mainly for treating autism and ADHD. We're hoping to see improvement in Melanie's cognition and sleep and overall wellness. I'm doing research right now, trying to get as much planning as possible done before we get into it. It will be hard, but I know we can do it. If it helps her, it will be more than worth the work.
Sometimes I just can't believe how great Melanie's seizure control is right now. We continue to lower med doses (I've even been skimping on her keppra more and more each week), and there is no visible increase in seizure activity. We only see positive improvements in everything else. Only one answer for that: God's amazing protection and the many and constant prayers of those who love us.
Deo gratia
Melanie's last seizure was the Saturday before Thanksgiving. As usual, she regressed in speech, mood, behavior, etc. after the seizure. It usually takes at least two weeks for her to get back to baseline. This was the shortest tonic clonic (grand mal) ever, because of the wonder-rescue-med, but it took two and a half weeks for her to recover. On Wednesday of last week, I saw something click in her, and she became brighter, happier and better. During that post-seizure slump she may not lose a whole lot of words or anything too severe, but her forward progress definitely halts for a time. When she snapped out of it this week, we instantly started hearing new words and speech sounds, and her cognition/understanding started improving again. I'm not sure how much this has to do with it, but at that same time we tapered her ickiest medication. We've been slowly bringing down her depakote, since it messes with... everything: liver, appetite, metabolism, behavior, cognition, speech.... It's poison. Every time I request a decrease, it makes our neurologist "nervous," but of course she always leaves it up to us. It doesn't make mom nervous, though. I would just love to cut this one out of her cocktail completely! I see Melanie emerge more and more with each decrease.
We are planning on trying a special diet in the new year. It's gluten-free, casein(dairy)-free, and it is touted mainly for treating autism and ADHD. We're hoping to see improvement in Melanie's cognition and sleep and overall wellness. I'm doing research right now, trying to get as much planning as possible done before we get into it. It will be hard, but I know we can do it. If it helps her, it will be more than worth the work.
Sometimes I just can't believe how great Melanie's seizure control is right now. We continue to lower med doses (I've even been skimping on her keppra more and more each week), and there is no visible increase in seizure activity. We only see positive improvements in everything else. Only one answer for that: God's amazing protection and the many and constant prayers of those who love us.
Deo gratia
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