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
Sunday, December 9, 2012
Sunday, November 18, 2012
Quickest Ever
Melanie's infrequent seizures have followed a couple of patterns for at least a year: Either we hear and find her face-down in bed, full-blown tonic-clonic (grand mal), or if she's awake it would start slowly with the eyes and then generalize at some point. Well, Dravet doesn't like you to get too comfortable with any kind of pattern for too long.
Last night, as I was preparing dinner, Melanie was passing back and forth through the kitchen shaking maracas. Grandma Johnson and I were right near her, smiling at her as she passed through. Suddenly she fell back into a full tonic-clonic, thankfully with a bag of clothing right behind her and not a door frame. Nick laid her down, while I got the midazolam sprayed up her nose within a minute. The convulsions stopped within a minute, and she fought off the remnants of the seizure for a few more minutes.
Dad sat with her in front of a football game for over half an hour, while she rested. Within 10 minutes she was opening her eyes a bit, and within 20 minutes she was exclaiming at the game, "oh no! Woah!" She needed help with dinner, but boy oh boy, I've never seen her recover so fast! Today she was not showing significant lapses in motor, and her speech was just a bit sub par. Her nose is getting congested and she's cranky and edgy, so I'm thankful it was not a "random" seizure. Haven't had one without illness since February 2011. I'm still nervous that it may be the stomach bug I came down with Thursday night, but so far we're just seeing stuffiness. I'll take a head cold over a stomach thing any day! For myself of course, but especially for my little girl who needs to keep her meds in her body and who has never thrown up before...
It's like night and day, comparing this new rescue med to the worthless diastat we were using for years! No doubt, if we were still using that stuff, it would have lasted at least 20 minutes, we may have ended up in the ER, and she would be unable to even walk today.
Last night, as I was preparing dinner, Melanie was passing back and forth through the kitchen shaking maracas. Grandma Johnson and I were right near her, smiling at her as she passed through. Suddenly she fell back into a full tonic-clonic, thankfully with a bag of clothing right behind her and not a door frame. Nick laid her down, while I got the midazolam sprayed up her nose within a minute. The convulsions stopped within a minute, and she fought off the remnants of the seizure for a few more minutes.
Dad sat with her in front of a football game for over half an hour, while she rested. Within 10 minutes she was opening her eyes a bit, and within 20 minutes she was exclaiming at the game, "oh no! Woah!" She needed help with dinner, but boy oh boy, I've never seen her recover so fast! Today she was not showing significant lapses in motor, and her speech was just a bit sub par. Her nose is getting congested and she's cranky and edgy, so I'm thankful it was not a "random" seizure. Haven't had one without illness since February 2011. I'm still nervous that it may be the stomach bug I came down with Thursday night, but so far we're just seeing stuffiness. I'll take a head cold over a stomach thing any day! For myself of course, but especially for my little girl who needs to keep her meds in her body and who has never thrown up before...
It's like night and day, comparing this new rescue med to the worthless diastat we were using for years! No doubt, if we were still using that stuff, it would have lasted at least 20 minutes, we may have ended up in the ER, and she would be unable to even walk today.
Friday, November 2, 2012
Make November purple
October was breast cancer awareness month, and everything turned pink. Did you know that, on average, more people die in the US each year from epilepsy than from breast cancer? I've never been a really big "awareness" kind of person, but when you see your child and consequently your entire family suffer from such a terrible and unpredictable disease, it's hard not to be changed by that. I am saddened and angered by the lack of awareness of seizures and seizure disorders, but even more so by the lack of research and funding. There is so much more to be understood, and our loved ones need better treatment. It's out there, ready to be found, researched and utilized. We need to start with that ambiguous idea of "awareness," with all its oppressive email forwards, Facebook posts, colored apparel and accessories, bumper stickers, petitions, news articles, brochures, walk/runs... and for us, personal stories. And when enough of the public make enough noise -and raise many funds in the process- then we can start getting a lot more accomplished. For us, of course, we care most about Dravet syndrome, and that is why you will find me bugging you, at least twice each year, to donate to the fundraisers in which we participate for the Dravet Syndrome Foundation.
Segue...
You have one more day to shop Maddie's Mall at www.maddietischer.net. And while you're thinking of her, praise God for Maddie's birth five years ago on November 3rd. Though her light was stifled far too soon, her legacy is already beautiful and prosperous.
Remember to wear your purple-- put a button or ribbon on your coat, wear your dravetfoundation.org purple silicone bracelet... tell people about it. I told our service man and then our waitress today. Caught them off guard, but that's ok. :-) I'll be searching for good factoids, buttons, etc. and share them as I find them.
Start with this: http://cureepilepsy.org/aboutepilepsy/facts.asp about epilepsy in general. And of course the two Dravet sites at the top of this blog are amazing resources.
Segue...
You have one more day to shop Maddie's Mall at www.maddietischer.net. And while you're thinking of her, praise God for Maddie's birth five years ago on November 3rd. Though her light was stifled far too soon, her legacy is already beautiful and prosperous.
Remember to wear your purple-- put a button or ribbon on your coat, wear your dravetfoundation.org purple silicone bracelet... tell people about it. I told our service man and then our waitress today. Caught them off guard, but that's ok. :-) I'll be searching for good factoids, buttons, etc. and share them as I find them.
Start with this: http://cureepilepsy.org/aboutepilepsy/facts.asp about epilepsy in general. And of course the two Dravet sites at the top of this blog are amazing resources.
Monday, October 15, 2012
Holy powerful nose spray, Batman!
...This stuff really works! That's the good news. Bad news is, we had to use the new seizure rescue med for the second time last night. Praise God we haven't used it more than that. We've had this new stuff for a few months now, and it works almost immediately to stop the seizure. The rectal stuff we used for years never really did anything, which is how we kept having 20-80 minute seizures.... I wonder how much time and brain health lost could have been saved if we'd made the switch sooner.
Melanie started coming down with James voice-stealing chest cold Saturday afternoon. I was encouraged to see that she started an illness, even had a low fever, without a seizure. Usually the seizure comes first, out of the blue. But since she had symptoms first, we knew to keep our ears and eyes open and to start the antipyretics right away. Still got hot and seized around 10 last night, thankfully before we were asleep in bed. Not much noise to warn us... I REALLY need to work on getting our insurance to cover a pulse oximeter to put on her during the night to operate as a seizure monitor.
She's doing ok today, all things considered. She's full of gunk and without much of a voice, but she's in ok spirits. This sickness lasted a whole week for James, but I'm hoping Melanie might be spared such a long period of suffering. And of course praying she doesn't seize again. Though the rescue med works so quickly, she does suffer a long and miserable post-ictal period, when her faculties don't really work, she's uncomfortable- shivery and feverish, eyes are completely absent and she can't talk or swallow for a while. And today her motor skills are sub par. But I'm always thankful when she wakes up after a seizure and still has her speech and other skills. So many Dravet kids have lost so much to "that one seizure." Praise God she has always bounced back! And today she said the most amazingly clear 7-word sentence when she sweetly said, "Please James, I want to sit down." Sometimes she comes out even better on the other side, like the seizure hit the 'reset' button.
Melanie started coming down with James voice-stealing chest cold Saturday afternoon. I was encouraged to see that she started an illness, even had a low fever, without a seizure. Usually the seizure comes first, out of the blue. But since she had symptoms first, we knew to keep our ears and eyes open and to start the antipyretics right away. Still got hot and seized around 10 last night, thankfully before we were asleep in bed. Not much noise to warn us... I REALLY need to work on getting our insurance to cover a pulse oximeter to put on her during the night to operate as a seizure monitor.
She's doing ok today, all things considered. She's full of gunk and without much of a voice, but she's in ok spirits. This sickness lasted a whole week for James, but I'm hoping Melanie might be spared such a long period of suffering. And of course praying she doesn't seize again. Though the rescue med works so quickly, she does suffer a long and miserable post-ictal period, when her faculties don't really work, she's uncomfortable- shivery and feverish, eyes are completely absent and she can't talk or swallow for a while. And today her motor skills are sub par. But I'm always thankful when she wakes up after a seizure and still has her speech and other skills. So many Dravet kids have lost so much to "that one seizure." Praise God she has always bounced back! And today she said the most amazingly clear 7-word sentence when she sweetly said, "Please James, I want to sit down." Sometimes she comes out even better on the other side, like the seizure hit the 'reset' button.
Tuesday, August 28, 2012
She's in there!
It's strange how epiphanies in Melanie's treatment seem to rush upon me like a flood. In February we discussed with our neurologist tapering drug no. 2 a couple months after finishing a taper of drug no. 1. The first taper was successful. Then we waited to make sure our new rescue med would work before tapering drug no. 2. Well, the rescue med definitely works much better than the old one. But we found that out right after seeing the neurologist in July... When we had discussed completely weaning the tiny bit of drug no. 3 she's on. Well, I waited to start any tapering or weaning. Follow me so far? (I promise I'm sparing you the complicated details.) Oh, and we feel comfortable that drug no. 4 is her wonder drug and pulls most of the weight in her cocktail of seizure meds.
Then we went to the Dravet conference, where I got new and better ideas for the next steps in Melanie's care. After a pharmacology talk, I thought "hmm, maybe we can keep this small dose of no. 3, now that I kind of understand its mechanism. And maybe we want to do that taper of no. 2." As this thought was stewing in my head the week after the conference, all of a sudden there was talk in the online support group of the nasty side effects of drug no. 2 and how great people's kids are when they taper or wean it. "It's like someone turned on a light bulb inside."
There's the flood. Why did I wait? This is the drug I have felt uneasy about for a long time. It's the one that affects her appetite, weight, speech, gait, comprehension, mood, motor planning... And it depletes her carnitine levels so she needs a supplement that makes her urine smell like the penguins at the zoo, and it damages her liver so that she needs an expensive milk thistle supplement. Who knows, maybe it's even the main culprit in giving her reflux? I know all this from experience- our own and other parents', as well as the official reported side effects. Why did I wait? Why did I wait?
Last Thursday, five days ago, I decreased drug no. 2, which by the way goes by the name depakote, or valproic acid, or in other countries epilim. She's now on 5/6 of what she was taking before, and this Thursday it'll go down to 2/3 of the original dose. UMMMM...... 6+ new words within four days, some ending consonants on some words(!), multiple-word phrases, better appetite, better mood, slightly better motor planning, and... There it is.... The light bulb. It's still not as bright as it can be, but I'm going after that dimmer switch!
Praise the Lord! And I pray we can continue to decrease this drug safely. Our real Melanie is coming out, and I want to keep her.
Then we went to the Dravet conference, where I got new and better ideas for the next steps in Melanie's care. After a pharmacology talk, I thought "hmm, maybe we can keep this small dose of no. 3, now that I kind of understand its mechanism. And maybe we want to do that taper of no. 2." As this thought was stewing in my head the week after the conference, all of a sudden there was talk in the online support group of the nasty side effects of drug no. 2 and how great people's kids are when they taper or wean it. "It's like someone turned on a light bulb inside."
There's the flood. Why did I wait? This is the drug I have felt uneasy about for a long time. It's the one that affects her appetite, weight, speech, gait, comprehension, mood, motor planning... And it depletes her carnitine levels so she needs a supplement that makes her urine smell like the penguins at the zoo, and it damages her liver so that she needs an expensive milk thistle supplement. Who knows, maybe it's even the main culprit in giving her reflux? I know all this from experience- our own and other parents', as well as the official reported side effects. Why did I wait? Why did I wait?
Last Thursday, five days ago, I decreased drug no. 2, which by the way goes by the name depakote, or valproic acid, or in other countries epilim. She's now on 5/6 of what she was taking before, and this Thursday it'll go down to 2/3 of the original dose. UMMMM...... 6+ new words within four days, some ending consonants on some words(!), multiple-word phrases, better appetite, better mood, slightly better motor planning, and... There it is.... The light bulb. It's still not as bright as it can be, but I'm going after that dimmer switch!
Praise the Lord! And I pray we can continue to decrease this drug safely. Our real Melanie is coming out, and I want to keep her.
Melanie and Mommy singing one of our favorites! (with backup)
Sunday, August 19, 2012
In all things God works for the good...
We just left our new family. We traveled up to Minneapolis for a three-day international Dravet conference, put on by Dravet.org. There were 200 families and many of the biggest names in Dravet there, including Dr. Dravet herself. I've never been with a group of people with whom I feel more connected. Every table of new faces we ate a meal with proved to be fruitful and an instant connection. Amazing... People from all over the world, different personalities, backgrounds, ages... All fiercely in love with their children and always searching for better things for their suffering, yet happy children.
It was heartbreaking to see the other Dravet kids there, especially the older ones. I feel hopeful for numerous reasons, but last night my heart ached so bad for my little girl that I curled up in bed with her... until she literally kicked me out. At this point, I'm actually feeling most concerned for her posture and gait, but that has also renewed my hope and passion for ABM. I told a lot of people about that method and saw many of them take a pen to their notebook, so hopefully more children will benefit from it. I also acted as a cheerleader for diamox, our wonder drug of the last year and a half.
We learned a lot about Dravet syndrome itself, and all things that go along with it, tools to deal with issues, financial and future planning.... All useful knowledge, but so densely packed into three days, that we are now physically, mentally and emotionally exhausted. Praying Nick will survive going back to work tomorrow and the rest of the week.
We made some great connections and new friends which I know will last and continue to be extremely valuable. I hope we can go to the next conference in two years.
Romans 8:28
deo gratia
It was heartbreaking to see the other Dravet kids there, especially the older ones. I feel hopeful for numerous reasons, but last night my heart ached so bad for my little girl that I curled up in bed with her... until she literally kicked me out. At this point, I'm actually feeling most concerned for her posture and gait, but that has also renewed my hope and passion for ABM. I told a lot of people about that method and saw many of them take a pen to their notebook, so hopefully more children will benefit from it. I also acted as a cheerleader for diamox, our wonder drug of the last year and a half.
We learned a lot about Dravet syndrome itself, and all things that go along with it, tools to deal with issues, financial and future planning.... All useful knowledge, but so densely packed into three days, that we are now physically, mentally and emotionally exhausted. Praying Nick will survive going back to work tomorrow and the rest of the week.
We made some great connections and new friends which I know will last and continue to be extremely valuable. I hope we can go to the next conference in two years.
Romans 8:28
deo gratia
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| With the family who live just 2 blocks from Nick's grandparents in smalltown, MN. |
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| Melanie and Luella. Melanie's got a fat lip and nose from having too much fun with Grandma earlier in the day... |
Sunday, July 29, 2012
Didn't want to see that sunrise
For the short version, see the "Recap" secton below.
We just had a successful trip to MN, to get a second opinion in orthopedics and for a neurology follow-up. While mom, dad and Melanie were at our first appointment, James was with Grandpa and got pretty sick, with fever. He was down for two days, and we even took him to a clinic for a strep test. Next morning he woke up, mysteriously, completely fine. That afternoon it looked like we'd have to take Melanie to the same clinic for a UTI. Thankfully, after some running around, that was averted with a home test strip and mysteriously vanishing symptoms.
We arrived home last night around dinner time, and all was uneventful. Mom had an inkling, so we gave Melanie a dose of ibuprofen in case she might be coming down with a fever. 3:45am I awake to alarming breathing sounds and rush up to find Melanie in a partial seizure and very hot. Since laying her down always encourages the seizure to generalize into a grand mal, I brought her downstairs and kept her upright. She was sitting on the couch, feverish and shaking while we got ibuprofen and tylenol in her, and some water. Then, it decided to come anyway. So I gave her her first-ever dose of our new rescue med, midazolam, which is sprayed up her nose. The convulsions stopped within a minute. Then I believe she was in a non-convulsive seizure, but ambiguously slipped into her sleepy post-ictal state after not too long. The midazolam has an extremely short half-life, so it was working out of her system pretty quickly-- unlike the 24+ hours of diastat. So we got to see how she shakes it off, without being drugged. Her eyes are always out of commission in this state, and her jaw is clenched and mouth doesn't work well. The rest of her body is limp, but all of this slowly improves (while she's still shaking from fever).
New this time, since she wasn't druggy, about 15 minutes into the post-ictal state we heard a tiny voice attempt a word. Then a few words... But her tongue and mouth weren't quite functioning yet. When Daddy stepped in the room, with her eyes still closed, she said "haa Daddy." As I watched, I sensed that 'coming out of anesthesia' feeling, when you just want to shake it off and get up and move around. She tried and tried: moving, talking and even singing it off. "ooooOOWEEEEEOOooooh!" If James had been awake, he would have been laughing at her. It was confusing, sad, cute and funny all at once. This started getting annoying the more she came-to, and I was almost lamenting the loss of the diastat stupor, because we used to be able to put her back to bed right away and let her sleep it off for a solid night and late morning. Wellll, she woke up around 7:30. So we all missed church and took turns sleeping... kinda. Still exhausted.
Recap: Took a family trip to see the grandparents in MN for the week, beginning with an orthopedic appointment, then neurology. Both appointments went well. James was sick Tuesday and Wednesday with a relentless fever, but woke up completely fine Thursday. We got home Saturday night, and it seems Melanie may have caught that bug, and began with a seizure this morning at 4am. Our first trial of the new rescue med, which sprays up the nose, seemed to go well. The whole seizure, including the ambiguous ending and coming-to was much quicker than usual. Since the new drug has a 30-min half-life, she's looking pretty good today, just more wobbley and fighting off an illness. Mom and Dad lost a lot of sleep and we had to miss church this morning. We got back in bed after the sun rose.
We made it nearly four months without a seizure!
We just had a successful trip to MN, to get a second opinion in orthopedics and for a neurology follow-up. While mom, dad and Melanie were at our first appointment, James was with Grandpa and got pretty sick, with fever. He was down for two days, and we even took him to a clinic for a strep test. Next morning he woke up, mysteriously, completely fine. That afternoon it looked like we'd have to take Melanie to the same clinic for a UTI. Thankfully, after some running around, that was averted with a home test strip and mysteriously vanishing symptoms.
We arrived home last night around dinner time, and all was uneventful. Mom had an inkling, so we gave Melanie a dose of ibuprofen in case she might be coming down with a fever. 3:45am I awake to alarming breathing sounds and rush up to find Melanie in a partial seizure and very hot. Since laying her down always encourages the seizure to generalize into a grand mal, I brought her downstairs and kept her upright. She was sitting on the couch, feverish and shaking while we got ibuprofen and tylenol in her, and some water. Then, it decided to come anyway. So I gave her her first-ever dose of our new rescue med, midazolam, which is sprayed up her nose. The convulsions stopped within a minute. Then I believe she was in a non-convulsive seizure, but ambiguously slipped into her sleepy post-ictal state after not too long. The midazolam has an extremely short half-life, so it was working out of her system pretty quickly-- unlike the 24+ hours of diastat. So we got to see how she shakes it off, without being drugged. Her eyes are always out of commission in this state, and her jaw is clenched and mouth doesn't work well. The rest of her body is limp, but all of this slowly improves (while she's still shaking from fever).
New this time, since she wasn't druggy, about 15 minutes into the post-ictal state we heard a tiny voice attempt a word. Then a few words... But her tongue and mouth weren't quite functioning yet. When Daddy stepped in the room, with her eyes still closed, she said "haa Daddy." As I watched, I sensed that 'coming out of anesthesia' feeling, when you just want to shake it off and get up and move around. She tried and tried: moving, talking and even singing it off. "ooooOOWEEEEEOOooooh!" If James had been awake, he would have been laughing at her. It was confusing, sad, cute and funny all at once. This started getting annoying the more she came-to, and I was almost lamenting the loss of the diastat stupor, because we used to be able to put her back to bed right away and let her sleep it off for a solid night and late morning. Wellll, she woke up around 7:30. So we all missed church and took turns sleeping... kinda. Still exhausted.
Recap: Took a family trip to see the grandparents in MN for the week, beginning with an orthopedic appointment, then neurology. Both appointments went well. James was sick Tuesday and Wednesday with a relentless fever, but woke up completely fine Thursday. We got home Saturday night, and it seems Melanie may have caught that bug, and began with a seizure this morning at 4am. Our first trial of the new rescue med, which sprays up the nose, seemed to go well. The whole seizure, including the ambiguous ending and coming-to was much quicker than usual. Since the new drug has a 30-min half-life, she's looking pretty good today, just more wobbley and fighting off an illness. Mom and Dad lost a lot of sleep and we had to miss church this morning. We got back in bed after the sun rose.
We made it nearly four months without a seizure!
Tuesday, July 17, 2012
Real Help from Professionals
After three evaluation appointments with a neurophsychologist, we sat down with the doctor for the results last week. We pretty much heard what I was expecting: Melanie tested to be around 2-2.5 years old cognitively. Her strength is in social skills, where she's more like 3+ years. Again, I knew all of this, but the doctor had some good thoughts and advice for how to use this information to try and give her the best education. I'm now looking for a part-time group/classroom-type setting for her during the school year. I don't want to go back to public school and IEP's, but she needs some social time with other kids around her developmental age. If you have any suggestions or know of a good place, please let me know.
Also last week, on Friday we took a half-day trip down to Chicago to have two lessons with a master ABM teacher. She's practically at the same mastery level as Anat Baniel herself (and therefore the same pay grade...). Melanie cooperated better than I had expected, and the timing of our day worked out much better than I'd expected. Marcy did a lot with Melanie in the short 40-min lessons, starting immediately once she was on the table. I saw a lot of rocking of Melanie's pelvis, working with her neck and shoulders, moving her legs...
In my opinion, I believe the most valuable thing we got from this time came from our short conversations after the lessons. I have the contact info for a world-class pediatric podiatrist, who will evaluate a video of Melanie's walking for free. I also have info for a fabulous speech therapist, from whom we may be able to get some advice via Skype. Marcy used to be a voice teacher (we're talking Metropolitan Opera), so she noticed a certain quality to Melanie's voice which needs to be addressed. I feel really good and hopeful about these gems from our conversations.
Next week, we see more professionals in St. Paul. First will be a second opinion in orthopedics, and then we see my most favorite doctor ever for a follow-up: Melanie's neurologist.
And by the way, Melanie is getting cuter by the day, and she's finally in a big girl bed!
Also last week, on Friday we took a half-day trip down to Chicago to have two lessons with a master ABM teacher. She's practically at the same mastery level as Anat Baniel herself (and therefore the same pay grade...). Melanie cooperated better than I had expected, and the timing of our day worked out much better than I'd expected. Marcy did a lot with Melanie in the short 40-min lessons, starting immediately once she was on the table. I saw a lot of rocking of Melanie's pelvis, working with her neck and shoulders, moving her legs...
In my opinion, I believe the most valuable thing we got from this time came from our short conversations after the lessons. I have the contact info for a world-class pediatric podiatrist, who will evaluate a video of Melanie's walking for free. I also have info for a fabulous speech therapist, from whom we may be able to get some advice via Skype. Marcy used to be a voice teacher (we're talking Metropolitan Opera), so she noticed a certain quality to Melanie's voice which needs to be addressed. I feel really good and hopeful about these gems from our conversations.
Next week, we see more professionals in St. Paul. First will be a second opinion in orthopedics, and then we see my most favorite doctor ever for a follow-up: Melanie's neurologist.
And by the way, Melanie is getting cuter by the day, and she's finally in a big girl bed!
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| Melanie just had to leave the house in style, with her best bud. |
Wednesday, July 4, 2012
More colors and numbers
I haven't posted in a while, because we haven't had much to report. No news is good news!
So here is another update on her development.
Melanie can now help me count to ten. She will count to 3 on her own (or maybe 5, but skipping 4). But if I count with her and pause at each number, most of the time she can say the next one on her own. And she's starting to count on her fingers. This all really took off when I discovered what is apparently the MOST entertaining tub game, with our two Ernie toys counting with each other and jumping into the tub at various numbers. Apparently it's a hoot, and Melanie would be happy if it went on until the water got ice cold.
Melanie also has more colors on her pallete. Now we have blue, green, pink, yellow, and maybe red. Still not very consistent, mostly because she struggles with focusing her eyes on a task. She'll tell me something's pink, without even looking at it. If she looked, she would know it's really blue...
We have not seen much improvement in movement in a while. We're hoping to see some great results next week, when we travel down to Chicago to see a master ABM teacher. Some days I have taped her ankles in hopes it may help stability and keep her ankles from rolling inward (pronating). I think it helps a bit-- my mom said today she's not lurching so much when she walks. Pati has been working on her feet, legs and pelvis in ABM lessons, and in our last session we saw some really great things! Toes flexed instead of always curled, pelvis tucking towards chest which gave her a stronger voice, etc.
Well, we've had this atrocious heat wave for too long now, keeping Melanie inside most of the time. She doesn't sweat at all, so we need to keep her cool. I'm pretty sure we'll be needing a cooling vest soon. Thankfully, she loves water and can handle it just fine without seizures. She has gotten too warm a few times, but no seizures, so I still feel really great about her seizure control right now.
In my next update(s), I'll let you know about our results from her neuropsychology evaluation and our time in Chicago working with Marcy.
Melanie can now help me count to ten. She will count to 3 on her own (or maybe 5, but skipping 4). But if I count with her and pause at each number, most of the time she can say the next one on her own. And she's starting to count on her fingers. This all really took off when I discovered what is apparently the MOST entertaining tub game, with our two Ernie toys counting with each other and jumping into the tub at various numbers. Apparently it's a hoot, and Melanie would be happy if it went on until the water got ice cold.
Melanie also has more colors on her pallete. Now we have blue, green, pink, yellow, and maybe red. Still not very consistent, mostly because she struggles with focusing her eyes on a task. She'll tell me something's pink, without even looking at it. If she looked, she would know it's really blue...
We have not seen much improvement in movement in a while. We're hoping to see some great results next week, when we travel down to Chicago to see a master ABM teacher. Some days I have taped her ankles in hopes it may help stability and keep her ankles from rolling inward (pronating). I think it helps a bit-- my mom said today she's not lurching so much when she walks. Pati has been working on her feet, legs and pelvis in ABM lessons, and in our last session we saw some really great things! Toes flexed instead of always curled, pelvis tucking towards chest which gave her a stronger voice, etc.
Well, we've had this atrocious heat wave for too long now, keeping Melanie inside most of the time. She doesn't sweat at all, so we need to keep her cool. I'm pretty sure we'll be needing a cooling vest soon. Thankfully, she loves water and can handle it just fine without seizures. She has gotten too warm a few times, but no seizures, so I still feel really great about her seizure control right now.
In my next update(s), I'll let you know about our results from her neuropsychology evaluation and our time in Chicago working with Marcy.
Sunday, May 20, 2012
Emerging from the "Blue Period"
Yesterday, when I brought Melanie down from her nap and changed her shirt, I asked her what color her shirt was. Normally, everything is blue. She knows there are different colors, and can identify many of them, but the one word that always answers the question, "What color is that?" is "bwue."
When I asked Melanie what color her shirt was, her exact response was, "Geen!" I bubbily asked her again, and she said, "Gween!"
I painted her (and my) toenails green about a week ago, and since then we've been talking about our green toes constantly. Well, I think I unintentionally discovered the perfect way to teach her her colors!
So, be watching our toes this summer... you'll see what color we're currently working on.
P.S. Her shirt was actually blue/turquoise, but I don't care.
When I asked Melanie what color her shirt was, her exact response was, "Geen!" I bubbily asked her again, and she said, "Gween!"
I painted her (and my) toenails green about a week ago, and since then we've been talking about our green toes constantly. Well, I think I unintentionally discovered the perfect way to teach her her colors!
So, be watching our toes this summer... you'll see what color we're currently working on.
P.S. Her shirt was actually blue/turquoise, but I don't care.
All the best treatments are hard to get
The rescue med we've been using for years has never been very effective in cutting short Melanie's long seizures. After our last experience, it's clear that it does nothing but make her druggy for days afterward. So we got a script for a different one: midazolam. This one comes in the IV form, but we need to spray it up her nose with an atomizer (sprays a mist from a syringe). A lot of other dravet families use it, because diastat seems not to work so well for most of these kids.
Well, what'dya know, there's a national shortage of this drug right now. Walgreens couldn't get it until May 15, so I filled it at the pharmacy at CHW. Now, where to get the special atomizers? The neurology nurse told me to ask other parents for advice on that... I did, and once again, they came through and turned out, indeed, to be the real experts. Most of the pharmacy techs didn't even know how to spell atomizer, so I can't just get it from them. Without going into all the details, we have some now, prefilled and ready to use. And I just want to thank Heather in Luverne for helping me tremendously! Praise God, we haven't had the chance to try it out yet, but I'm hopeful it will work better than Diastat (which is not a tall order).
If you care to read on, I'll explain some of the other great treatments and why they are completely or largely out of our reach.
Melanie's newest drug (clobazam) is one of the biggies for Dravet, and we had to get it from Canada, because it was only recently approved by our FDA and is now also manufactured in the US. We will continue to pay out of pocket for it from Canada, because that is cheaper than getting it through our insurance in the US.
Another one in the "Dravet trio" (which includes depakote and clobazam- both of which Melanie's on) is stiripentol (STP). This drug is only available in Europe and is extremely expensive ($ hundreds or $ thousands/month). Many families go through long battles with their insurance company, and sometimes they'll get it partly covered. It is very effective for many kids. Thankfully, Melanie is controlled enough that we don't need to look down that road right now.
Another treatment that has proven to be very useful in managing seizures in Dravet patients, in other countries, is the use of bromides. If you've been around for a while, you might remember bromides being used in OTC sedatives and headache medicines (Bromo-Seltzer) until the mid-70's. It's easy to overuse them to the point of toxicity, so they've been outlawed in the US, except for controlling seizures in pets. Welll... Turns out this old drug (the first one ever used to treat epilepsy) works fantastically for a lot of people in other countries. A group of doctors in Belguim have- I think all of their Dravet patients- well-controlled with a certain low-dose cocktail of meds, including bromides. Many other parents report great success as well... outside of the US.
There is one treatment which is perhaps the most effective and least harmful of all treatments for epilepsy, specifically Dravet, as well as a host of other ailments. If we gave it to Melanie, we could take her off of the pharmaceuticals which attack her organs and cause some pretty nasty side effects which impede her learning and development. We could give her a natural and safe herb, in the form of a tincture from a little bottle. But if we gave it to her, we would probably go to prison. Because the government labels marijuana as a dangerous gateway drug, we are unable to use the non-psychoactive form (CBD) to treat our daughter's life-threatening disorder. If you're interested, here is a clip of a CA Dravet father on a TV show, deciding to give his son CBD. http://dsc.discovery.com/videos/weed-wars-seeking-a-solution.html Jason is a part of our facebook support group, and here is a report of his son's progress from April: " He is down from 22 pills a day down to 7 pills a day. Down from 4 meds to 2 meds and seizures are down 80% and he is improving in everything and he is not a zombie anymore he has personality and happy. Not crying in pain all day anymore. Thank God." And he is finally speaking, at the age of 5. I don't think I've heard any negative stories from any of the CBD-using families (mostly in Canada or US states where it has been legalized).
Other treatments for seizures, organ health, learning and development can be cost-prohibitive, and since they're not "traditional," insurance companies won't touch them with a 10ft pole. This includes supplements, diets and alternative therapies (such as Melanie's ABM lessons).
I am so thankful for our community of parents who share their research and experiences and offer support to each other in all of our trials. And I can't wait to meet so many of them and learn so much more at the Dravet conference in MN in August! We'll even meet Dr. Dravet herself!
Well, what'dya know, there's a national shortage of this drug right now. Walgreens couldn't get it until May 15, so I filled it at the pharmacy at CHW. Now, where to get the special atomizers? The neurology nurse told me to ask other parents for advice on that... I did, and once again, they came through and turned out, indeed, to be the real experts. Most of the pharmacy techs didn't even know how to spell atomizer, so I can't just get it from them. Without going into all the details, we have some now, prefilled and ready to use. And I just want to thank Heather in Luverne for helping me tremendously! Praise God, we haven't had the chance to try it out yet, but I'm hopeful it will work better than Diastat (which is not a tall order).
If you care to read on, I'll explain some of the other great treatments and why they are completely or largely out of our reach.
Melanie's newest drug (clobazam) is one of the biggies for Dravet, and we had to get it from Canada, because it was only recently approved by our FDA and is now also manufactured in the US. We will continue to pay out of pocket for it from Canada, because that is cheaper than getting it through our insurance in the US.
Another one in the "Dravet trio" (which includes depakote and clobazam- both of which Melanie's on) is stiripentol (STP). This drug is only available in Europe and is extremely expensive ($ hundreds or $ thousands/month). Many families go through long battles with their insurance company, and sometimes they'll get it partly covered. It is very effective for many kids. Thankfully, Melanie is controlled enough that we don't need to look down that road right now.
Another treatment that has proven to be very useful in managing seizures in Dravet patients, in other countries, is the use of bromides. If you've been around for a while, you might remember bromides being used in OTC sedatives and headache medicines (Bromo-Seltzer) until the mid-70's. It's easy to overuse them to the point of toxicity, so they've been outlawed in the US, except for controlling seizures in pets. Welll... Turns out this old drug (the first one ever used to treat epilepsy) works fantastically for a lot of people in other countries. A group of doctors in Belguim have- I think all of their Dravet patients- well-controlled with a certain low-dose cocktail of meds, including bromides. Many other parents report great success as well... outside of the US.
There is one treatment which is perhaps the most effective and least harmful of all treatments for epilepsy, specifically Dravet, as well as a host of other ailments. If we gave it to Melanie, we could take her off of the pharmaceuticals which attack her organs and cause some pretty nasty side effects which impede her learning and development. We could give her a natural and safe herb, in the form of a tincture from a little bottle. But if we gave it to her, we would probably go to prison. Because the government labels marijuana as a dangerous gateway drug, we are unable to use the non-psychoactive form (CBD) to treat our daughter's life-threatening disorder. If you're interested, here is a clip of a CA Dravet father on a TV show, deciding to give his son CBD. http://dsc.discovery.com/videos/weed-wars-seeking-a-solution.html Jason is a part of our facebook support group, and here is a report of his son's progress from April: " He is down from 22 pills a day down to 7 pills a day. Down from 4 meds to 2 meds and seizures are down 80% and he is improving in everything and he is not a zombie anymore he has personality and happy. Not crying in pain all day anymore. Thank God." And he is finally speaking, at the age of 5. I don't think I've heard any negative stories from any of the CBD-using families (mostly in Canada or US states where it has been legalized).
Other treatments for seizures, organ health, learning and development can be cost-prohibitive, and since they're not "traditional," insurance companies won't touch them with a 10ft pole. This includes supplements, diets and alternative therapies (such as Melanie's ABM lessons).
I am so thankful for our community of parents who share their research and experiences and offer support to each other in all of our trials. And I can't wait to meet so many of them and learn so much more at the Dravet conference in MN in August! We'll even meet Dr. Dravet herself!
Thursday, April 19, 2012
More improvements with ABM
So, one week after Melanie's 80-minute seizure, she was still not quite herself. She was not talking very much, and her mood was rather deflated. She was still sort of weak, wobbley and tremory... Then Nick took her for her next ABM lesson. When she came back in the house from her 30-minute lesson, I instantly saw our usual happy, chatty Melanie. No doubt it was the ABM that caused that instantaneous change. For the rest of the week, she was chatting up a storm non-stop, in a great mood and moving a little stronger.
She's still healthy and doing well. Nothing much to report, which is always nice. :-)
Last week during spring break, we had an opportunity to travel a couple hours north to a book festival, where we heard Anat Baniel give a book talk on her new book about ABM for special needs children. We met her, had her sign our two books, and got a picture with her. Melanie was low on sleep and beyond her melting point, so in the picture she looks rather bleary. James was tired of being there, so his face shows exactly how he felt about being there so long...
I'm so thankful we had that experience, and her new book is fantastic! I highly recommend it! http://www.amazon.com/Kids-Beyond-Limits-Awakening-Transforming/dp/0399537368/ref=sr_1_1?ie=UTF8&qid=1334859870&sr=8-1
She's still healthy and doing well. Nothing much to report, which is always nice. :-)
Last week during spring break, we had an opportunity to travel a couple hours north to a book festival, where we heard Anat Baniel give a book talk on her new book about ABM for special needs children. We met her, had her sign our two books, and got a picture with her. Melanie was low on sleep and beyond her melting point, so in the picture she looks rather bleary. James was tired of being there, so his face shows exactly how he felt about being there so long...
Wednesday, April 4, 2012
Looking Good
We started amoxicillin last night, and she's still not really showing symptoms. Mom can detect some pain somewhere in the head, and she has been leaning to her right a lot (right ear is infected). But so far it looks like we may be on the road to curbing this infection before it gets a footing. She has not had a fever today.
Still extremely wobbly and drunk on diastat. It'll take at least another day or so to get out of her system.
I should hear from the neurologist tomorrow, when she gets back from vacation. We'll have to discuss the keppra taper and finding a new rescue med.
Still extremely wobbly and drunk on diastat. It'll take at least another day or so to get out of her system.
I should hear from the neurologist tomorrow, when she gets back from vacation. We'll have to discuss the keppra taper and finding a new rescue med.
Tuesday, April 3, 2012
Back in ER
(Warning: lots of details... for the sake of our family who I'm sure long to be thoroughly updated.)
This was our first time back in the ER since sometime in 2010, I believe.
Melanie gave a few clues during the day that something was brewing. She asked for a nap 2 hours earlier than usual and then slept for about 3.5 hours. She woke up a bit cranky and 'off.' And for a few days she's had an itchy nose and ouchy sneezes, and Mom has noticed a slight decline in overall wellness. So I wasn't too shocked when she had a seizure yesterday.
I opened the back door to go pick up James from school, and Melanie just stood there, looking at the ground. When I nudged her forward, her legs buckled and I caught her. I had a friend bring James home, as I attended to Melanie on the dining room floor. Convulsions lasted about 20 minutes. This was our first time using the two small-dose "boosters" of diastat, her rescue med. Well, it's rather apparent to me now that diastat likely does nothing to stop her seizures. I've suspected it all along, but now I'm sure, after she had 5mg more than her normal 7.5mg, and this was the longest one she's had since our scare two years ago, when a nearly lethal combination of drugs in the ER landed her in the PICU with a breathing tube. We might have been facing a similar situation this time, if we hadn't waited an hour before taking her in. By the time we got to our local ER and they had her hooked up, she had ambiguously slipped into her post-ictal state of occasional voluntary movements.
I'd guess that the entire seizure was roughly 80 minutes, the last hour of which was NCSE (non-convulsive status epilepticus): in that stage she is limp, unconscious, jaw tightly fixed, and her eyes "dance," usually with dilated pupils. Unfortunatly, her post-ictal (post seizure) state looks very similar to that, but with slight voluntary movements and her eyes, though vacant, aren't as 'dancey' and pupils are reactive. Even still, we're still playing the guessing game nearly every time-- even after more than 3 years experience.
We had a very good and understanding ER doctor. It was clear to him right away that we knew what we were doing, and I made a comment early on which I could see in his face clearly communicated that we won't be "told" what to do if we know it's not best for Melanie. Call it a quick "flash of the Tiger Mom claw." I had to flash it again when 3 different NICU nurses tried unsuccessfully for too long to find a vein to draw blood, and at the same time her other nurses were messing with her bad IV. One nurse went out to ask the doc what he wanted them to do, and I spoke up to say that she needs to be left alone completely. If she doesn't get a chance to sleep and then wake on her own, she'll never shake it off. Well, what do you know, it worked. After 20 min or so of uninterrupted sleep, she stirred on her own for the first time and drank some water. This went on a bit longer, until the doc came in and asked if we'd like to go home. He never tried to play any games with us, which is SO refreshing.
We got out of the ER in 3.5 hours, which is record time for us (probably for most people). The doctor sent us home with a script for amoxicillin for the ear infection he detected. We haven't filled it yet. Nick is more anxious to start it right away than I am. I want to spare her the regression and loss of two weeks of her life, but I hate to give her yet ANOTHER round of antibiotics and risk long-term harm... We'll make the decision today.
We got the green light on Friday to start tapering Melanie's depakote. I'm so thankful that I have providentially forgotten, for three days, to lower her morning dose. If I had, I would definitely be wondering now if that were the reason for this extra-long seizure. As it is, we are wondering if our keppra taper had anything to do with it; but she has been at her current dose for a week and a half now, so I'm not too sure that has much to do with it. I'll be in contact with our neurologist about it.
Today so far, she woke up cheery yet extremely wobbley. The diastat stays in her system at least 24 hours, so she'll be druggy for the rest of the day at least- especially with the extra 5mg she got. She watched Pooh (of course) and munched some pretzels and drank half a Pediasure. She's sleeping again now, and won't be as cheery the rest of the day. Tomorrow is when the real crankies will come, and the sickies will show up.
James was with us during our whole ER ordeal. He and Dad left for a while to get dinner, change and retrieve things from home. James later told me that he had prayed two times for Melanie, on his own. I praised him for his tender heart and for turning to God on behalf of his beloved sister. Then, as we were packing up to leave the ER, I turned around to see him standing at the foot of her bed with his eyes squeezed closed, praying for her again. That sweet boy has a way of melting his mama's heart.
This was our first time back in the ER since sometime in 2010, I believe.
Melanie gave a few clues during the day that something was brewing. She asked for a nap 2 hours earlier than usual and then slept for about 3.5 hours. She woke up a bit cranky and 'off.' And for a few days she's had an itchy nose and ouchy sneezes, and Mom has noticed a slight decline in overall wellness. So I wasn't too shocked when she had a seizure yesterday.
I opened the back door to go pick up James from school, and Melanie just stood there, looking at the ground. When I nudged her forward, her legs buckled and I caught her. I had a friend bring James home, as I attended to Melanie on the dining room floor. Convulsions lasted about 20 minutes. This was our first time using the two small-dose "boosters" of diastat, her rescue med. Well, it's rather apparent to me now that diastat likely does nothing to stop her seizures. I've suspected it all along, but now I'm sure, after she had 5mg more than her normal 7.5mg, and this was the longest one she's had since our scare two years ago, when a nearly lethal combination of drugs in the ER landed her in the PICU with a breathing tube. We might have been facing a similar situation this time, if we hadn't waited an hour before taking her in. By the time we got to our local ER and they had her hooked up, she had ambiguously slipped into her post-ictal state of occasional voluntary movements.
I'd guess that the entire seizure was roughly 80 minutes, the last hour of which was NCSE (non-convulsive status epilepticus): in that stage she is limp, unconscious, jaw tightly fixed, and her eyes "dance," usually with dilated pupils. Unfortunatly, her post-ictal (post seizure) state looks very similar to that, but with slight voluntary movements and her eyes, though vacant, aren't as 'dancey' and pupils are reactive. Even still, we're still playing the guessing game nearly every time-- even after more than 3 years experience.
We had a very good and understanding ER doctor. It was clear to him right away that we knew what we were doing, and I made a comment early on which I could see in his face clearly communicated that we won't be "told" what to do if we know it's not best for Melanie. Call it a quick "flash of the Tiger Mom claw." I had to flash it again when 3 different NICU nurses tried unsuccessfully for too long to find a vein to draw blood, and at the same time her other nurses were messing with her bad IV. One nurse went out to ask the doc what he wanted them to do, and I spoke up to say that she needs to be left alone completely. If she doesn't get a chance to sleep and then wake on her own, she'll never shake it off. Well, what do you know, it worked. After 20 min or so of uninterrupted sleep, she stirred on her own for the first time and drank some water. This went on a bit longer, until the doc came in and asked if we'd like to go home. He never tried to play any games with us, which is SO refreshing.
We got out of the ER in 3.5 hours, which is record time for us (probably for most people). The doctor sent us home with a script for amoxicillin for the ear infection he detected. We haven't filled it yet. Nick is more anxious to start it right away than I am. I want to spare her the regression and loss of two weeks of her life, but I hate to give her yet ANOTHER round of antibiotics and risk long-term harm... We'll make the decision today.
We got the green light on Friday to start tapering Melanie's depakote. I'm so thankful that I have providentially forgotten, for three days, to lower her morning dose. If I had, I would definitely be wondering now if that were the reason for this extra-long seizure. As it is, we are wondering if our keppra taper had anything to do with it; but she has been at her current dose for a week and a half now, so I'm not too sure that has much to do with it. I'll be in contact with our neurologist about it.
Today so far, she woke up cheery yet extremely wobbley. The diastat stays in her system at least 24 hours, so she'll be druggy for the rest of the day at least- especially with the extra 5mg she got. She watched Pooh (of course) and munched some pretzels and drank half a Pediasure. She's sleeping again now, and won't be as cheery the rest of the day. Tomorrow is when the real crankies will come, and the sickies will show up.
James was with us during our whole ER ordeal. He and Dad left for a while to get dinner, change and retrieve things from home. James later told me that he had prayed two times for Melanie, on his own. I praised him for his tender heart and for turning to God on behalf of his beloved sister. Then, as we were packing up to leave the ER, I turned around to see him standing at the foot of her bed with his eyes squeezed closed, praying for her again. That sweet boy has a way of melting his mama's heart.
Thursday, March 22, 2012
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.
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.
Tuesday, March 6, 2012
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
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
Thursday, March 1, 2012
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:
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:
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.
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