Thursday morning, March 9 Melanie woke up seeming fine. Momtuition told me to feel her forehead and then take her temperature. It was around 101. Long story short, she'd been exposed to strep at home and school, so I took her to the clinic right away. Eventually learned her strep tests were negative, but.... Just after getting home from the clinic, she'd quickly gone downhill. Before I could get ibuprofen in her, she had a seizure. So her streak ended at 378 days.
She wound up missing a little more than three days of school. I brought her back a little late on Tuesday, and when we walked into the room, her aide was so excited, and her teacher stopped their lesson and said, "look who's here!" All the kids were so excited to have her back. Mom walked back out of the building with a warm heart and a smile on my face.
Melanie got sick again over the weekend at dad's. As I sat in church this morning, right after pastor prayed for the many physical ailments in the church, I got a text that Melanie just had a seizure. Looks like a new illness, because she had been healthy all last week since Tuesday.
Please pray for her, of course that she would become healthy quickly and have no more seizures. Also, I've had two kids home sick quite a bit this month, which takes a huge hit to my income. I can't always reschedule the lessons I have to cancel, so our already tight budget is getting pretty squeezed right now. I know God always provides, in my experience even sometimes rather mysteriously. But it's still a stressor and a need we need to bring before the Lord in prayer.
Sunday, March 19, 2017
Friday, February 24, 2017
ONE YEAR of Seizure Freedom!
This is the first time in Melanie's 8+ years she has been seizure-free for an entire year! That's almost unheard of in the world of Dravet. So what's the secret? God's smiling providence. I'm just so thankful that we've had this lengthy period of fantastic health and growth. We've had lots of changes in the past few years, moving homes and schools twice since late 2014. And now a new family, since Mommy got married in July. James and Melanie have gained three teenage step-siblings, a step-dad, two dogs and three acres. And dad got married in 2015.
This year, she is in second grade at an amazing school, where she has awesome teachers. She had great teachers last year too, but the combination of brain health, low med doses, happy and stable home, and the perfect school situation for her has caused her to shoot beyond anything I ever expected! She reads a new book every day, has about 50 sight words, is taking spelling tests, knows her calendar, can tell time, do basic math, write all letters and numbers on her own, sound out words...
And she is the funniest, silliest, happiest little goof-ball. Always singing and dancing and wiggling. She makes everyone fall in love with her. Earlier this week I took her to a clinic for a strep test, and when the doctor lifted her shirt to listen to her heart, she said, "Do you see the fish in my bellay buttawn?" He told her she could come back and visit him anytime...
Mommy made purple frosted butterfly cookies for Melanie to bring to school today, so her friends and teachers got to celebrate with her. Thanks for rejoicing with us! All glory to God!!
This year, she is in second grade at an amazing school, where she has awesome teachers. She had great teachers last year too, but the combination of brain health, low med doses, happy and stable home, and the perfect school situation for her has caused her to shoot beyond anything I ever expected! She reads a new book every day, has about 50 sight words, is taking spelling tests, knows her calendar, can tell time, do basic math, write all letters and numbers on her own, sound out words...
And she is the funniest, silliest, happiest little goof-ball. Always singing and dancing and wiggling. She makes everyone fall in love with her. Earlier this week I took her to a clinic for a strep test, and when the doctor lifted her shirt to listen to her heart, she said, "Do you see the fish in my bellay buttawn?" He told her she could come back and visit him anytime...
Mommy made purple frosted butterfly cookies for Melanie to bring to school today, so her friends and teachers got to celebrate with her. Thanks for rejoicing with us! All glory to God!!
Wednesday, May 28, 2014
Doing Well
What a difference two years can make. At age three, Melanie couldn't even say "pink toe," and a typical seizure lasted at least 40 minutes; she was weak and wobbly, a frail and over-drugged waif. Now at age five, she can sit at the lunch table and tell me all about our trip to the zoo; last Friday's seizure lasted two minutes and required no rescue med; she's strong and alert, eats like a champ and wanders around the front yard picking dandelions, counting them in French. Most of her drug doses are half of what they were two years ago, and now we seem to have the hope of cannabis treatment close on the horizon.
I love to see her become more independent, developing new skills and language all the time: learning, growing and understanding more and more. She can play outside in the sun and wind (with polarized sunglasses) without being plagued by absence seizures. She can put on her own shoes and most of her own clothes. She's constantly singing, dancing and galloping around the house.
There has been an increase in some unwanted behaviors and defiance. She beats up her brother a lot, especially with weapons (like play spoons and drum sticks), and I hear lots and lots of whining.
We're working on finding the right school placement for her next year, and I'm looking forward to the daily social time for my little social butterfly. She will benefit from the structured time of learning, growth and play, and James will benefit from the break from the beatings. The kids love each other very much, but poor James just needs a little space.
I thank the Lord daily for her health and safety and development, and I pray she is spared the regressions typical of Dravet, or worse, "The" seizure that always seems to come out of nowhere to steal away skills or even life.
Praise God with me for the gifts and blessings in her life and the joy and blessings she brings to the lives of everyone around her.
I love to see her become more independent, developing new skills and language all the time: learning, growing and understanding more and more. She can play outside in the sun and wind (with polarized sunglasses) without being plagued by absence seizures. She can put on her own shoes and most of her own clothes. She's constantly singing, dancing and galloping around the house.
There has been an increase in some unwanted behaviors and defiance. She beats up her brother a lot, especially with weapons (like play spoons and drum sticks), and I hear lots and lots of whining.
We're working on finding the right school placement for her next year, and I'm looking forward to the daily social time for my little social butterfly. She will benefit from the structured time of learning, growth and play, and James will benefit from the break from the beatings. The kids love each other very much, but poor James just needs a little space.
I thank the Lord daily for her health and safety and development, and I pray she is spared the regressions typical of Dravet, or worse, "The" seizure that always seems to come out of nowhere to steal away skills or even life.
Praise God with me for the gifts and blessings in her life and the joy and blessings she brings to the lives of everyone around her.
Tuesday, March 4, 2014
HELP!! Big hope for Melanie!!
LISTEN UP!! BIG NEWS!!
I realize many of you do not live in WI, but please read this and share with ANYONE you know in WI, and keep an eye out for movements in your own state.
(If you know about why we want medical cannabis for Melanie, you may skip down to the paragraph marked with **)
In states all over the US, there are movements towards legalization of medical marijuana- or cannabis. Many of these movements and bills being authored, sponsored and passed are being spear-headed and fueled by parents of kids with Dravet Syndrome, just like our little Melanie.
The inspirational family and the poster child for this movement, particularly in the world of Dravet and severe seizure disorders, is the Figi family in CO. Namely, 6-y-o Charlotte, who has a cannabis plant named after her, Charlotte's Web. If you don't know her story: see this CNN documentary, called "WEED" https://www.youtube.com/watch?
Many of you know the basic gist, but for those who don't, know that Melanie would receive this medicine in an oil form, produced from a plant like Charlotte's Web in another state, and it would be mailed to our prescribing doctor in WI and dispensed to us from their office. This plant is bred to be extremely high in CBD, the medicinal element, and extremely low in THC, the psychotropic element. These kids do not get even a remote high. She would take it from a syringe, like her other liquid meds. There is tremendous potential for efficacy here, and a promising possibility of drastically tapering or even eliminating the dangerous meds she's on now.
**So, you're wondering what I was talking about, getting this oil from a WI doctor... first you've heard of this? Well, THIS is the point of this email, and the reason it is targeted to our WI friends. There is a bill in the state legislature right now, which was passed strongly through committee, with bi-partisan support, which would legalize the use of CBD oil for the treatment of seizures in WI! This is not the blanket medical marijuana bill: this is very specific and has much more traction and support.
I spoke with a mom who is helping to fuel this action, Sally Schaeffer. She lives in Burlington, and her daughter doesn't have Dravet, but a chromosome disorder which causes 80% of her sleep to be plagued by seizures. They were featured in a story on Channel 4 News recently, which can be found here: http://lovinglydia.com/ She told me she knows of at least two state legislators who have changed their minds on this issue BECAUSE OF ALL THE LETTERS they have recieved from constituents. There is a time crunch now, as the legilative session ends very soon. So PLEASE help us out, and make some noise! Especially in northern WI- we need more voices up there! Share this with friends and neighbors!!
I have attached a form letter which you are more than welcome to use and share with anyone and everyone you can think of in the state. Also, here is a link to find your state legislators: http://legis.wisconsin.gov/
Please write your representative, senator and Gov. Walker. This is of utmost importance to Melanie and many other suffering kids in WI!
Dear ____,
I am writing to you as a constituent regarding AB 726 which would allow for the legalization of CBD oil, which is extracted from a medicinal cannabis plant, for the treatment of seizures. This oil is intentionally non-psychotropic with extremely low levels of THC and has proven to be successful in stopping or drastically decreasing epileptic seizures in children. I am asking you please to consider thoroughly reviewing and supporting this bill as it moves forward in this legislative session.
I am a friend to Milwaukee parent Claire Johnson, a devoted mother of a 5-year-old special needs child, Melanie. Melanie has Dravet Syndrome, like many other children in the US whose seizures are being treated successfully using CBD oil. Paige Figi, of Colorado, came to Wisconsin to testify before the committee of Children and Families last month, regarding AB 726. Her daughter, Charlotte has Dravet just like Melanie, and her story is the inspiration of so many parents fighting for this treatment to save their children’s lives. Please take 18 minutes to view a well-delivered, informative and touching explanation of the case for treating seizures with CBD, focusing on the miraculous story of Charlotte Figi: https://www.youtube.com/watch?v=ciQ4ErmhO7g (Josh Stanley, TEDxBoulder). Like many other severe epilepsies, the seizures in Dravet syndrome typically respond very poorly to most drugs on the market, and the side effects are dangerous, detrimental to development and even deadly. The seizures themselves are most certainly dangerous, detrimental to development and too often deadly. High-CBD cannabis plants like Charlotte’s Web are highly effective, carefully tested and without side effects.
I understand that the committee of Children and Families voted yes on this bill on February 26th at their executive meeting, which will move this bill forward. I urge you to vote in favor of this bill for the sake of the children who could benefit so greatly from treatment with CBD. Many parents are out of options or will be very soon. Many young and precious lives are hanging in the balance. I cannot imagine a more urgent item for this legislative session than to see to it that these children can have legal access to something which can help them.
Thank you for your consideration. I look forward to hearing from you about your support for AB 726.
Sincerely,
Your name Address, phone & email
I am writing to you as a constituent regarding AB 726 which would allow for the legalization of CBD oil, which is extracted from a medicinal cannabis plant, for the treatment of seizures. This oil is intentionally non-psychotropic with extremely low levels of THC and has proven to be successful in stopping or drastically decreasing epileptic seizures in children. I am asking you please to consider thoroughly reviewing and supporting this bill as it moves forward in this legislative session.
I am a friend to Milwaukee parent Claire Johnson, a devoted mother of a 5-year-old special needs child, Melanie. Melanie has Dravet Syndrome, like many other children in the US whose seizures are being treated successfully using CBD oil. Paige Figi, of Colorado, came to Wisconsin to testify before the committee of Children and Families last month, regarding AB 726. Her daughter, Charlotte has Dravet just like Melanie, and her story is the inspiration of so many parents fighting for this treatment to save their children’s lives. Please take 18 minutes to view a well-delivered, informative and touching explanation of the case for treating seizures with CBD, focusing on the miraculous story of Charlotte Figi: https://www.youtube.com/watch?v=ciQ4ErmhO7g (Josh Stanley, TEDxBoulder). Like many other severe epilepsies, the seizures in Dravet syndrome typically respond very poorly to most drugs on the market, and the side effects are dangerous, detrimental to development and even deadly. The seizures themselves are most certainly dangerous, detrimental to development and too often deadly. High-CBD cannabis plants like Charlotte’s Web are highly effective, carefully tested and without side effects.
I understand that the committee of Children and Families voted yes on this bill on February 26th at their executive meeting, which will move this bill forward. I urge you to vote in favor of this bill for the sake of the children who could benefit so greatly from treatment with CBD. Many parents are out of options or will be very soon. Many young and precious lives are hanging in the balance. I cannot imagine a more urgent item for this legislative session than to see to it that these children can have legal access to something which can help them.
Thank you for your consideration. I look forward to hearing from you about your support for AB 726.
Sincerely,
Your name Address, phone & email
Tuesday, December 31, 2013
Closing the year on a high note
We've made some treatment changes since our last appointment in November. First on my list was weaning the benzodiazepine. She was on a tiny dose because she suffered horrible side effects when we tried bringing it higher, and I doubted that it ever did anything productive. It's supposed to be one of the "magic three" for Dravet. It's also a very dangerous drug with horrid withdrawal symptoms, calling for a very slow weaning schedule. It took us about a month to wean her tiny dose, and she was a bit of a monster at times and had a few seizures because of it. I could tell she felt awful.
Well, about five days after her final dose, she was alert, sweet, obedient and exploding with language. Suddenly, I see her recognizing that her words don't sound quite right and she doesn't use the right grammar, and she is making a careful effort to fix that. She's also getting better at the phonics game we play ("let's think of words that start with mmm...").
We also began a daily dose of N-Acetylcysteine (NAC). This is a vitamin which has been discussed quite a bit recently in the Dravet support group. A number of kids have done well with it, improving mood and seizure control. Even though we're supposed to make one change at a time, I was anxious to start it and hopefully give her a little extra protection while weaning the benzo. I'm wondering how much of her recent "awakening" is because of NAC, and also if it has been boosting her immune system. She may be fighting something right now, but so far she's been healthy all season, avoiding many bugs around us.
We've been having a great Christmas break, spending time with both sides of the family. Melanie got some presents which will help us a lot in school, as we learn to read and write. I'm super excited about the felt boards made by Grandma Johnson!
The Lord has blessed us richly in 2013, and I know that whatever 2014 holds is in his sovereign plan and is for the good of us who love him, who have been called according to his purpose.
Happy new year, everyone, and thanks for following Melanie's progress! I know many have been praying for our little Rose. Please remember in your prayers the families of the 13 children who lost their lives to Dravet in 2013.
Well, about five days after her final dose, she was alert, sweet, obedient and exploding with language. Suddenly, I see her recognizing that her words don't sound quite right and she doesn't use the right grammar, and she is making a careful effort to fix that. She's also getting better at the phonics game we play ("let's think of words that start with mmm...").
We also began a daily dose of N-Acetylcysteine (NAC). This is a vitamin which has been discussed quite a bit recently in the Dravet support group. A number of kids have done well with it, improving mood and seizure control. Even though we're supposed to make one change at a time, I was anxious to start it and hopefully give her a little extra protection while weaning the benzo. I'm wondering how much of her recent "awakening" is because of NAC, and also if it has been boosting her immune system. She may be fighting something right now, but so far she's been healthy all season, avoiding many bugs around us.
We've been having a great Christmas break, spending time with both sides of the family. Melanie got some presents which will help us a lot in school, as we learn to read and write. I'm super excited about the felt boards made by Grandma Johnson!
The Lord has blessed us richly in 2013, and I know that whatever 2014 holds is in his sovereign plan and is for the good of us who love him, who have been called according to his purpose.
Happy new year, everyone, and thanks for following Melanie's progress! I know many have been praying for our little Rose. Please remember in your prayers the families of the 13 children who lost their lives to Dravet in 2013.
Saturday, November 16, 2013
Productive Appointment
Whenever we get packed up and hit the road for our 6-hour+ car trip for a neurology checkup, I always question, "is this really worth it? Can't we find a suitable doctor closer to home?" I mean, I know she's a Dravet expert and I really trust and like her, but dude- this is a big trip....
Then we go to our appointment.... Yes. It is worth it. This doctor is worth it; this facility is worth it. (Besides, we get to stay with grandma and grandpa and see lots of other friends and family.)
Yesterday we had a check-up with the neurologist. She is pleased with Melanie's continued progress. We discussed her recent increase in seizure frequency, and how mood and behavior issues have ramped up along with that. I know some Dravet families accept some breakthrough seizures with lowered medication, in order not to interfere with development, cognition, etc. Unfortunately, seizure activity itself messes with Melanie, so we need to increase meds to keep her moving forward. Fortunately, she doesn't currently need toxic doses to control most of those seizures. She has been gaining weight, while not increasing- or at times even decreasing all her meds. According to body weight, she is on 1/2, 1/3, or less of the doses she was on a year or two ago. This is great news for her body! Fewer dangerous pharmaceuticals= healthier, freer body and brain.
That said, we will hopefully be increasing her (virtually no-side-effect) Wonder Drug, if her labs say it's safe. We discussed other options as well. We plan to add a supplement which has improved seizure control for many other Dravet kids recently. And we have started to wean her newest drug, which can be a dangerous one and probably hasn't done much to help her anyway.
I asked the doctor for her thoughts on medical cannabis, and she gave a very honest answer. Essentially, she admitted the lack of controlled studies, but did not discount the mountains of anecdotal evidences. She said if it were on the ballot in her state, she would vote yes and would support any family who would want to try it. She said she'd rather take mmj than depakote, but she'd rather take Keppra than mmj. Personally, I'd rather take mmj than anything sold by Big Pharma, but I'm coming from a different perspective and experience.
The doctor once again commented on Melanie's hyper-flexibility and her pronating feet and in-toeing. Basically, at age 5, she's still saying, "We'll have to watch that."
Overall, it was a very good and productive appointment. We have many plans for next steps and possible next steps, and I feel good about them. I am hopeful that we can help Melanie with some safer, natural supplements, rather than going on to new drugs or more drugs. I pray she continues to respond well to these less extreme treatments! This is not the norm for Dravet kids. Praise God.
Then we go to our appointment.... Yes. It is worth it. This doctor is worth it; this facility is worth it. (Besides, we get to stay with grandma and grandpa and see lots of other friends and family.)
Yesterday we had a check-up with the neurologist. She is pleased with Melanie's continued progress. We discussed her recent increase in seizure frequency, and how mood and behavior issues have ramped up along with that. I know some Dravet families accept some breakthrough seizures with lowered medication, in order not to interfere with development, cognition, etc. Unfortunately, seizure activity itself messes with Melanie, so we need to increase meds to keep her moving forward. Fortunately, she doesn't currently need toxic doses to control most of those seizures. She has been gaining weight, while not increasing- or at times even decreasing all her meds. According to body weight, she is on 1/2, 1/3, or less of the doses she was on a year or two ago. This is great news for her body! Fewer dangerous pharmaceuticals= healthier, freer body and brain.
That said, we will hopefully be increasing her (virtually no-side-effect) Wonder Drug, if her labs say it's safe. We discussed other options as well. We plan to add a supplement which has improved seizure control for many other Dravet kids recently. And we have started to wean her newest drug, which can be a dangerous one and probably hasn't done much to help her anyway.
I asked the doctor for her thoughts on medical cannabis, and she gave a very honest answer. Essentially, she admitted the lack of controlled studies, but did not discount the mountains of anecdotal evidences. She said if it were on the ballot in her state, she would vote yes and would support any family who would want to try it. She said she'd rather take mmj than depakote, but she'd rather take Keppra than mmj. Personally, I'd rather take mmj than anything sold by Big Pharma, but I'm coming from a different perspective and experience.
The doctor once again commented on Melanie's hyper-flexibility and her pronating feet and in-toeing. Basically, at age 5, she's still saying, "We'll have to watch that."
Overall, it was a very good and productive appointment. We have many plans for next steps and possible next steps, and I feel good about them. I am hopeful that we can help Melanie with some safer, natural supplements, rather than going on to new drugs or more drugs. I pray she continues to respond well to these less extreme treatments! This is not the norm for Dravet kids. Praise God.
Saturday, November 2, 2013
DS stands for Don't Settle (down)!
When Melanie was diagnosed with Dravet Syndrome, we were all diagnosed with a lifetime of excitement and change! Can't get too comfortable for too long. One of Daddy's catch phrases, since I've known him has been, "If you're not scared, you're not living." Well heck, I'm livin' every day!
So, what's the change? Well, it's layered. Obviously we're out of our two-year stint of no non-febrile generalized clonic seizures (which began when we added WonderDrug, Diamox). Wwwhhhaat? Sorry, my vocabulary has changed since becoming Melanie's mom. This is what that sentence meant:
Feb. 2011: Dr. H put Melanie on diamox, an unorthodox choice, as it is an old diuretic, mostly used for mountain sickness. He thought it might help with seizures and ataxia.
*cha-ching* jackpot struck
Feb. 2011 - June 2013: Melanie only ever had a (big) seizure with illness: usually, but not always coinciding with the initial immune response (i.e. before symptoms).
June 2013 - Present: Five seizures not triggered by illness.
I'm also noticing poor behaviors in the days leading up to a seizure. But today I gave this some serious "momtuition" thought. If bad behaviors coincide with seizure activity, and she has actually been exhibiting these behaviors non-stop (or slowly worsening) for at least a few weeks, and seizures are coming more and more randomly.... Ok, when I list it all out like that, I feel dumb for not seeing it before. She needs a med change. But wait! I'm not so dumb after all: All of her seizures (now and in years past) happen in the late afternoon/evening. Annnd, she is always chipper in the morning, but becomes increasingly squealy and ill-behaved as the day wears on. *lightbulb* She needs something midday. So, since I've been successful at it in the past, I'm going to play neurologist again tomorrow and go ahead and add a 1/4 pill of diamox at lunch tomorrow.
Will let you know how our cute little ginea pig fares.
P.S. Melanie had her first day of horseback therapy today! She had so much fun, and we are so excited to keep doing this. Praying for better strength, muscle tone and posture so she can suck in that low-tone little belly!
So, what's the change? Well, it's layered. Obviously we're out of our two-year stint of no non-febrile generalized clonic seizures (which began when we added WonderDrug, Diamox). Wwwhhhaat? Sorry, my vocabulary has changed since becoming Melanie's mom. This is what that sentence meant:
Feb. 2011: Dr. H put Melanie on diamox, an unorthodox choice, as it is an old diuretic, mostly used for mountain sickness. He thought it might help with seizures and ataxia.
*cha-ching* jackpot struck
Feb. 2011 - June 2013: Melanie only ever had a (big) seizure with illness: usually, but not always coinciding with the initial immune response (i.e. before symptoms).
June 2013 - Present: Five seizures not triggered by illness.
I'm also noticing poor behaviors in the days leading up to a seizure. But today I gave this some serious "momtuition" thought. If bad behaviors coincide with seizure activity, and she has actually been exhibiting these behaviors non-stop (or slowly worsening) for at least a few weeks, and seizures are coming more and more randomly.... Ok, when I list it all out like that, I feel dumb for not seeing it before. She needs a med change. But wait! I'm not so dumb after all: All of her seizures (now and in years past) happen in the late afternoon/evening. Annnd, she is always chipper in the morning, but becomes increasingly squealy and ill-behaved as the day wears on. *lightbulb* She needs something midday. So, since I've been successful at it in the past, I'm going to play neurologist again tomorrow and go ahead and add a 1/4 pill of diamox at lunch tomorrow.
Will let you know how our cute little ginea pig fares.
P.S. Melanie had her first day of horseback therapy today! She had so much fun, and we are so excited to keep doing this. Praying for better strength, muscle tone and posture so she can suck in that low-tone little belly!
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| All the horses wore costumes today. Melanie's was a hula dancer. |
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