Just as we had suspected, we've seen no changes in Melanie since our gluten challenge. We waited a few days, then gave her a little more, and now we're basically just done with the GF diet. She never really showed many signs of gluten intolerance to begin with, but we wanted to see if we might see improvement in mental clarity and cognition. She seems to be just as happy and forward-moving in her development, as she was during and before the diet.
It was worth the try, and I'm thinking of doing a little GF trial for myself, now that I know how to do it. I could do with less fatigue and brain fog.... Besides, somebody's got to eat all this GF pasta and such in our pantry.
What will remain from this GFCF trial is our avoidance of artificial colors, sweeteners, etc. Do you know how much of that stuff is banned in Europe? Those things are poison. Also, I believe our family's gluten intake will remain lower than it used to be. I also have a better understanding of how to watch for food sensitivities and how to feed our family healthier, more whole foods. This experience exposed me to a lot of reading, discussing and learning, for which I am grateful. Can't wait for our CSA to start!
Monday, May 13, 2013
Wednesday, May 8, 2013
The Gluten Challenge
Tonight was our first gluten "challenge" for Melanie. It can take about three months for gluten to leave the system and for any needed gut healing to be completed. We removed gluten in January, but about a month into it there was a woopsey which kind of hit the reset button on the whole experiment. So tonight was the night I decided to give it a try. She had about one serving of my sister's whole wheat sourdough bread. I wanted the challenge to be a quality, whole grain food. But she did also have about half of the bakery cookie that grandma bought her yesterday (sorry mom, I ate half of it-- it was for Melanie's good...).
Please pray that we see clearly in the next couple days if she has any negative reactions to the gluten. We doubt that we have seen any improvement attributable to going GF, but hopefully this challenge will make it clear to us.
James was excited about the fun plastic wine cups I just bought, so he decided it would be fun to have a "Cup Day." All of our food today was served in cups: Dinner was eggs, chicken sausage and French toast sticks. Lunch was James's sandwich cut in strips, with cups of berries and veggies. Mom and Melanie shared guacamole. I don't think this was our last Cup Day. :-)
Please pray that we see clearly in the next couple days if she has any negative reactions to the gluten. We doubt that we have seen any improvement attributable to going GF, but hopefully this challenge will make it clear to us.
James was excited about the fun plastic wine cups I just bought, so he decided it would be fun to have a "Cup Day." All of our food today was served in cups: Dinner was eggs, chicken sausage and French toast sticks. Lunch was James's sandwich cut in strips, with cups of berries and veggies. Mom and Melanie shared guacamole. I don't think this was our last Cup Day. :-)
Saturday, April 27, 2013
Nighttime Scares and Laughs
Melanie came in from playing outside yesterday afternoon, acting a little subdued. She had a temperature around 100. I gave her ibuprofen and let her chill in the rocking chair in front of the tv while she slowly ate some supper, asking for more "apposhauce" and home-made GF "shicken nuggets." She had a bath and seemed fine, but I guess we should have given her more fever-reducers before bed.
At 2am, Nick and I awoke to the alarm on the pulse-ox. I looked at the monitor, said "uh-oh," and Nick shot out of bed quick as a flash. I came upstairs with the midazolam and sprayed it right away. The convulsions stopped within a couple minutes. Then there was a long period of ambiguity, as her eyes were fixed, pupils constricted, and she shivered and shook violently, seemingly from fever. She was not responsive enough to swallow ibuprofen or water from a syringe through her fixed jaw.
In those questionable moments, a number of thoughts run through my head. "Oh golly, I'm so tired and I can't keep my eyes open. I'm going to be dead tomorrow. What plans will need to be canceled now? How can we tell if this will settle down? What would the EMTs do for her? What would they accomplish in the ER? Do we call 911? Oh, that would wake up the neighbors and boy, we don't need that ambulance bill. Or do we wake up James so we can all drive to the ER, which would be 10x faster. Or could one of us drive her there- could she stay upright in her carseat? Oh Lord, please help my baby. Make this stop. Show us that she is coming out of whatever this is. Oh God, I just want to hug her and drink in her freshly-washed skin and make her giggle. Where is that smile she's always wearing?" Yes, the thoughts come in that order: the selfish ones come first. Because this is routine for us. We're used to seeing her in this terrible state. We do our thing, I think about logistics... Then, as I wait, watching my baby suffer, not seeing the smiley lover-bug I tucked in to bed just hours ago, that's when it hurts and gets scary.
She started waking enough to slowly get some meds and water into her, and she really tried to talk, though no part of her body was functioning too well. As I held her, she kept mumbling "sorry" and a bunch of other stuff we couldn't make out. Perhaps she was trying to describe what she was feeling? Feeling another seizure come on.... She stopped talking, eyes started flickering upwards and she was thrown into another clonic seizure- this one looking more intense, oxygen dropping down into the 50's. I tried another small spritz of midazolam, since technically her dosage was recently increased. This one only lasted about a minute, I think. I hated that one. I told her, "Let's not get into the typical Dravet habit of clustering seizures, honey!" Thankfully that was the last one. But that darned fever never went down far enough. She did sleep safely through the rest of the night and woke up looking bleary but happy and chatty as usual.
Now, let's end with a smile. That cute little smiley, giggley Miss Personality was the first thing to emerge as she came out of all of this. Through her sluggish mouth with her lolling tongue, she was saying things like, "Ahwuuuh rea' book." And when I pointed out how silly it was that there was a pot of water in her bed (for dipping hands and feet), she made the cutest attempt at a laugh. When daddy started reading to her, she started whining and mumbling, "No daaee rea' book!" I asked if she wanted mommy to read instead, and she looked at me through tiny slits in her eyelids and said with her usual adultish inflection one of her most common phrases, "Oh! Sure!" She had us practically cracking up, at 3:45 in the morning.
She's the strongest person I know. A mountain; a fearless tiger cub; my superhero.
At 2am, Nick and I awoke to the alarm on the pulse-ox. I looked at the monitor, said "uh-oh," and Nick shot out of bed quick as a flash. I came upstairs with the midazolam and sprayed it right away. The convulsions stopped within a couple minutes. Then there was a long period of ambiguity, as her eyes were fixed, pupils constricted, and she shivered and shook violently, seemingly from fever. She was not responsive enough to swallow ibuprofen or water from a syringe through her fixed jaw.
In those questionable moments, a number of thoughts run through my head. "Oh golly, I'm so tired and I can't keep my eyes open. I'm going to be dead tomorrow. What plans will need to be canceled now? How can we tell if this will settle down? What would the EMTs do for her? What would they accomplish in the ER? Do we call 911? Oh, that would wake up the neighbors and boy, we don't need that ambulance bill. Or do we wake up James so we can all drive to the ER, which would be 10x faster. Or could one of us drive her there- could she stay upright in her carseat? Oh Lord, please help my baby. Make this stop. Show us that she is coming out of whatever this is. Oh God, I just want to hug her and drink in her freshly-washed skin and make her giggle. Where is that smile she's always wearing?" Yes, the thoughts come in that order: the selfish ones come first. Because this is routine for us. We're used to seeing her in this terrible state. We do our thing, I think about logistics... Then, as I wait, watching my baby suffer, not seeing the smiley lover-bug I tucked in to bed just hours ago, that's when it hurts and gets scary.
She started waking enough to slowly get some meds and water into her, and she really tried to talk, though no part of her body was functioning too well. As I held her, she kept mumbling "sorry" and a bunch of other stuff we couldn't make out. Perhaps she was trying to describe what she was feeling? Feeling another seizure come on.... She stopped talking, eyes started flickering upwards and she was thrown into another clonic seizure- this one looking more intense, oxygen dropping down into the 50's. I tried another small spritz of midazolam, since technically her dosage was recently increased. This one only lasted about a minute, I think. I hated that one. I told her, "Let's not get into the typical Dravet habit of clustering seizures, honey!" Thankfully that was the last one. But that darned fever never went down far enough. She did sleep safely through the rest of the night and woke up looking bleary but happy and chatty as usual.
Now, let's end with a smile. That cute little smiley, giggley Miss Personality was the first thing to emerge as she came out of all of this. Through her sluggish mouth with her lolling tongue, she was saying things like, "Ahwuuuh rea' book." And when I pointed out how silly it was that there was a pot of water in her bed (for dipping hands and feet), she made the cutest attempt at a laugh. When daddy started reading to her, she started whining and mumbling, "No daaee rea' book!" I asked if she wanted mommy to read instead, and she looked at me through tiny slits in her eyelids and said with her usual adultish inflection one of her most common phrases, "Oh! Sure!" She had us practically cracking up, at 3:45 in the morning.
She's the strongest person I know. A mountain; a fearless tiger cub; my superhero.
Carrying on per usual the next day.
This scene never would have happened in the days of diastat.
Once again thanking God for the safer, more convenient, and way more effective midazolam.
Friday, March 22, 2013
My Bad: God's Good.
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
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
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!
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