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.
Sunday, May 20, 2012
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!
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