With Dravet Syndrome, nocturnal seizures become the norm as things progress. We aren't there yet, but it could happen at any time. We've decided to try to get an Emfit Movement Monitor to help us sleep a bit better at night. The monitor is a thin pad that goes under the mattress and then will alarm when movement parameters are met. Unfortunately, the alarm has not yet been FDA approved, therefore it's yet another expense that insurance won't cover; they aren't cheep. A coworker of DC's set up an online fundraiser to help us purchase the monitor. We're VERY close to meeting our goal. Even a $1 donation would be a great help! You can donate here: http://goo.gl/x4LiV.
But we desperately need your help! We received an invoice today for the first three months of this medication, and it is 1,080 euros. That's roughly $1550! Insurance will hopefully reimburse us at some point, but it could take months, or even years, to run the appeal gauntlet to get coverage. In the mean time, we must pay out of pocket.
Stiripentol is the only drug currently designed specifically for Dravet Syndrome. The drug is not FDA approved, but does have "orphan drug" status; meaning we can get the drug from France, but most insurances will not cover it. Drake's neurologist had been holding off on prescribing it based on the cost factor. However, after the last few seizures, he recommended it was time to give this one a shot; we had no idea what the initial cost would be until after the drugs were already on their way to us (other than knowing it would not be cheap). Drake has now been on various combinations of eight different seizure medications. He's currently on four different meds. Nothing has given us good control. Stiripentol has been very effective for many (but not all) of the children we know that have DS. We are very hopeful that the same will be true for Drake; it will take several months to determine its effectiveness.
At this time, any paypal donations that we receive (through the Wish List page) will go directly toward the costs of Stiripentol unless otherwise specified in the donation notes. We thank all that are able to help, even in the smallest way.
Stiripentol is the only drug currently designed specifically for Dravet Syndrome. The drug is not FDA approved, but does have "orphan drug" status; meaning we can get the drug from France, but most insurances will not cover it. Drake's neurologist had been holding off on prescribing it based on the cost factor. However, after the last few seizures, he recommended it was time to give this one a shot; we had no idea what the initial cost would be until after the drugs were already on their way to us (other than knowing it would not be cheap). Drake has now been on various combinations of eight different seizure medications. He's currently on four different meds. Nothing has given us good control. Stiripentol has been very effective for many (but not all) of the children we know that have DS. We are very hopeful that the same will be true for Drake; it will take several months to determine its effectiveness.
At this time, any paypal donations that we receive (through the Wish List page) will go directly toward the costs of Stiripentol unless otherwise specified in the donation notes. We thank all that are able to help, even in the smallest way.
The last couple weeks have been unbelievably busy in the Current household. On top of all our routine appointments that keep us running (therapy three times a week, school, etc), I had a final project and final exams for school, we were approved for Medicaid Waiver (more in a minute on that), the boys had well-check appointments, DC has been working overtime and is on a quest to fix up as much as he can around the house. We're exhausted.
As taxing as it is to get services initiated, the Medicaid Waiver is going to be a HUGE relief when we get things up and running. This means that Drake not only has full Medicaid coverage now, but he qualifies for in-home nursing care. Twelve hours a day, seven days a week! That means we need several nurses, so we've been interviewing nurses from a local agency for nearly three weeks. After ruling out a few duds, we think we've finally got a pretty good group. The first nurse started Friday evening; it was crazy trying to not only do our routine stuff with the kids, but also training a new nurse and orienting her to everything she needs to know about Drake and our home. She'll return Monday night, along with another nurse - so another stressful day of trying to get staff up to speed. But once these two are onboard, we'll be able to step back a bit - the nurses will train each other. The nurses' primary responsibility is to monitor Drake for seizure activity; but they'll also take care of as much/as little of his routine daily needs as we want them to. Meds, meals, bathtime, dressing, diaper changes, and working on developmental goals through play. Finally we'll be able to give Kevin some one on one time, spend time playing with Drake instead of every moment being about the tedious things that have to be done, keep the house clean, get projects done around the house, and maybe DC and I will even have the opportunity to get out on our own from time to time!! Life changing.
We have two fundraisers going right now. The first is to raise funds to get an Emfit movement monitor for Drake. The Emfit alarm is a thin pad that slips under the mattress and will alarm if Drake's movements/breathing fall outside the set parameters. It won't pick up all of his seizure types, but it will alert us to many of them. It is one more measure to help us sleep better at night. The alarm is not FDA approved, therefore insurance will not cover them. They cost around $600. If you'd like to help, please click here.
The other fundraiser is for Center for Courageous Kids. We attended a Dravet family weekend there last year and it was wonderful! Not only does the camp cater to children with special needs, but we were surrounded by other families that walk in the same shoes as us. While the camp tries to provide everything at no cost to campers, they have asked that the Dravet families try to fundraise $300 each this year to help offset costs (we're such a rare syndrome group, that they don't get much outside funding to sponsor our group). To do our part, we're doing a Thirty One catalog party. Fifty percent of the consultant's (another Dravet mom) commission will go to CCK in honor of Drake and his friend Kaylynn. Take a peak at the catalog. Thirty One offers a fabulous selection of totes, purses and accessories at great prices. You can order on-line (click on the link to my "party", or if you're local, I can meet up with you to go through the catalog and show you a few sample products. Everyone who places an order will be placed in a drawing to win one of six great free products (one with custom embroidery!).
I'm having trouble adding links right now, so I'll just include the addresses here for now and try to come back and fix later.
Information on Emfit: http://www.emfit.com/
fundraising page: http://apps.facebook.com/fundrazr/activity/1b0d23dfd0c849cdb70854a119dd0686
information on Center for Courageous Kids: http://www.thecenterforcourageouskids.org
Thirty One: http://www.mythirtyone.com/45971/
Happy Mother's Day to all you great moms out there! My little munchkin just crawled out of bed, so time for me to run
As taxing as it is to get services initiated, the Medicaid Waiver is going to be a HUGE relief when we get things up and running. This means that Drake not only has full Medicaid coverage now, but he qualifies for in-home nursing care. Twelve hours a day, seven days a week! That means we need several nurses, so we've been interviewing nurses from a local agency for nearly three weeks. After ruling out a few duds, we think we've finally got a pretty good group. The first nurse started Friday evening; it was crazy trying to not only do our routine stuff with the kids, but also training a new nurse and orienting her to everything she needs to know about Drake and our home. She'll return Monday night, along with another nurse - so another stressful day of trying to get staff up to speed. But once these two are onboard, we'll be able to step back a bit - the nurses will train each other. The nurses' primary responsibility is to monitor Drake for seizure activity; but they'll also take care of as much/as little of his routine daily needs as we want them to. Meds, meals, bathtime, dressing, diaper changes, and working on developmental goals through play. Finally we'll be able to give Kevin some one on one time, spend time playing with Drake instead of every moment being about the tedious things that have to be done, keep the house clean, get projects done around the house, and maybe DC and I will even have the opportunity to get out on our own from time to time!! Life changing.
We have two fundraisers going right now. The first is to raise funds to get an Emfit movement monitor for Drake. The Emfit alarm is a thin pad that slips under the mattress and will alarm if Drake's movements/breathing fall outside the set parameters. It won't pick up all of his seizure types, but it will alert us to many of them. It is one more measure to help us sleep better at night. The alarm is not FDA approved, therefore insurance will not cover them. They cost around $600. If you'd like to help, please click here.
The other fundraiser is for Center for Courageous Kids. We attended a Dravet family weekend there last year and it was wonderful! Not only does the camp cater to children with special needs, but we were surrounded by other families that walk in the same shoes as us. While the camp tries to provide everything at no cost to campers, they have asked that the Dravet families try to fundraise $300 each this year to help offset costs (we're such a rare syndrome group, that they don't get much outside funding to sponsor our group). To do our part, we're doing a Thirty One catalog party. Fifty percent of the consultant's (another Dravet mom) commission will go to CCK in honor of Drake and his friend Kaylynn. Take a peak at the catalog. Thirty One offers a fabulous selection of totes, purses and accessories at great prices. You can order on-line (click on the link to my "party", or if you're local, I can meet up with you to go through the catalog and show you a few sample products. Everyone who places an order will be placed in a drawing to win one of six great free products (one with custom embroidery!).
I'm having trouble adding links right now, so I'll just include the addresses here for now and try to come back and fix later.
Information on Emfit: http://www.emfit.com/
fundraising page: http://apps.facebook.com/fundrazr/activity/1b0d23dfd0c849cdb70854a119dd0686
information on Center for Courageous Kids: http://www.thecenterforcourageouskids.org
Thirty One: http://www.mythirtyone.com/45971/
Happy Mother's Day to all you great moms out there! My little munchkin just crawled out of bed, so time for me to run