I was just taking a peak at the website traffic statistics and I noticed that there were nearly as many visitors to the site yesterday as there were the days following the Fox Toledo story...this is a HUGE jump in traffic from most normal days. So I'm curious ... what brought you all here yesterday?
Yesterday was a busy day. I had hoped to get the house clean and didn't get very far with that goal, however I did get two very important phone calls taken care of finally.
We've been waiting for a month now to find out if insurance will approve us taking Drake for PT/OT/ST - it's been recommended by the developmental pediatrician that diagnosed him with global developmental delays. Insurance has STILL not approved services, however, since we now have full BCMH (Bureau for Children with Medical Handicaps) coverage, we decided to let that pick up the initial evaluation. Once we have the evaluation done, we may have better luck getting our primary insurance to approve therapy appointments. So, Drake goes Thursday morning for a one hour evaluation appointment. We know from Help Me Grow evaluations that he was about a year delayed in most areas (as of April 2009), so it will be interesting to see how the private center evaluates him and how much (or little?) progress he's made in the last couple of months.
I also finally found the courage to call our neurologists office to ask several questions. I always feel such anxiety calling their office. I'm sure they mean well, but whenever I call I feel like everything I bring up is called into question; that they feel parents can't be trusted to know what their children need. But yesterday I stood my ground and it paid off. We've been seeing some possible side effects from the Topomax that had me really concerned heading into summer. For one thing, he's been rubbing his eyes A LOT and there are warnings in the drug literature about some serious eye problems, some that could be permanent so I wanted to know if we should take him in to get his eyes checked. He also is overheating more than ever. Topomax can cause patients to not sweat...he's never seemed to sweat much to be honest, but on the hot days we've had this summer, we noticed that he couldn't tolerate being outside for more than 10-20 minutes; he'd turn beat read and start acting a bit loopy - as if heat stroke or seizure activity were eminent. So, they decided it's time to back him off the Topomax and try a new drug. He'll still be on the Topomax for a while as we do a slow wean from it. But he's starting Depakote today. Really hope he tolerates this one better! For now, he'll be on three seizure meds: Keppra, Topomax and now Depakote.
I also asked about Dravet Syndrome testing. There is a genetic test that can be done. Not all children with Dravet have the gene mutation, but it's present in the majority of cases. When I asked about this, the nurse seemed quite surprised and questioned how I knew about Dravet and what made me want the testing. Once again I felt small and inadequate...but I pushed through. I don't even remember how I first learned of Dravet but I'm sure it was through researching epilepsy online, searching desperately for something that sounded like Drake. When I first started reading about Dravet I sat and cried for quite some time...it sounded so much like Drake to me. But I've been afraid to mention to our neurologist...I'm not sure if I was more afraid of learning he does indeed have Dravet or if it was concern that the neurologist would shoot down the possibility and then I'd have a huge fight on my hand to get someone to take me seriously. But with the recent media coverage of our story, I've been contacted by three different families that have children with Dravet and all questioned if Drake had been tested yet. That gave me the courage and strenght to push forward and ask for the testing - knowing that others were seeing something in Drake that had them thinking Dravet Syndrome as well. So after sharing much of this with the nurse, she called back and said the doctor had agreed to the testing. But she warned that insurance often won't cover testing like this and it can be very expensive. Today I will be calling insurance to try to find out whether it will be covered or not. I'm pretty sure they did cover our last round of genetic testing (minus deductible of course), but I have to go back and check on that - since that was done through the help me grow program, anything our insurance didn't pick up was donated by the lab/provider. It will probably be at least a few weeks before we go in for the bloodwork - there are only two labs in the US that do this particular test and the nurse wasn't sure which lab the hospital is currently using for it. And from what I've read on Dravet support sites, the results can sometimes take months to get back. Regardless, I'm glad to know we're making progress in getting this nagging question in my mind answered. Of couse, if this test comes back negative, there is still the possibility that he has Dravet...I'd just have to find a doctor that agrees and will give a clinical diagnosis. I certainly am not saying I WANT him to have Dravet...but if he does truly have it, I want to know. The nurse yesterday said that knowing would not change the course of treatment. Yet from all I've read, knowing could and should indeed have a bearing on treatment. And it would be nice to finally have some explanation for all this little boy has gone through in his short life.
On a happier note...we ordered wristbands yesterday! They are glow-in-the-dark purple. Purple is the color of epilepsy awareness. On one half they say "4 Paws For Drake!" with paw prints on each end and on the other side they say "epilepsy" with butterflies on each end. Butterflies are the symbol for epilepsy awareness. Inside, they have the address of Drake's website - it's different than the sight we are currently using, DC thought it would be better to have a short address that's easier to relay to people. A friend of his donated the domain registration and we will soon activate it with a mirror back to this site...so you can use either address in the near future. The bracelets won't arrive until June 25th though, just in time for the Team Jenny benefit race in Fremont! I only ordered 300 initially - so if you want one, I'd highly recommend going to the shopping tab here or e-mailing me to place your order soon! If you live close, you can pick them up, or I can meet you somewhere to deliver them...e-mail me if that's the case, as they will be a little cheaper than listed here on the site. For those not in the area, I've included the cost of postage in the on-line ordering section, so as soon as the shipment arrives, I'll begin mailing them out to those that ordered them. I'm not sure if we will order more or not once these run out.
Well, Drake is finally up and calling me to come get him. Wishing you all a wonderful day!
We've been waiting for a month now to find out if insurance will approve us taking Drake for PT/OT/ST - it's been recommended by the developmental pediatrician that diagnosed him with global developmental delays. Insurance has STILL not approved services, however, since we now have full BCMH (Bureau for Children with Medical Handicaps) coverage, we decided to let that pick up the initial evaluation. Once we have the evaluation done, we may have better luck getting our primary insurance to approve therapy appointments. So, Drake goes Thursday morning for a one hour evaluation appointment. We know from Help Me Grow evaluations that he was about a year delayed in most areas (as of April 2009), so it will be interesting to see how the private center evaluates him and how much (or little?) progress he's made in the last couple of months.
I also finally found the courage to call our neurologists office to ask several questions. I always feel such anxiety calling their office. I'm sure they mean well, but whenever I call I feel like everything I bring up is called into question; that they feel parents can't be trusted to know what their children need. But yesterday I stood my ground and it paid off. We've been seeing some possible side effects from the Topomax that had me really concerned heading into summer. For one thing, he's been rubbing his eyes A LOT and there are warnings in the drug literature about some serious eye problems, some that could be permanent so I wanted to know if we should take him in to get his eyes checked. He also is overheating more than ever. Topomax can cause patients to not sweat...he's never seemed to sweat much to be honest, but on the hot days we've had this summer, we noticed that he couldn't tolerate being outside for more than 10-20 minutes; he'd turn beat read and start acting a bit loopy - as if heat stroke or seizure activity were eminent. So, they decided it's time to back him off the Topomax and try a new drug. He'll still be on the Topomax for a while as we do a slow wean from it. But he's starting Depakote today. Really hope he tolerates this one better! For now, he'll be on three seizure meds: Keppra, Topomax and now Depakote.
I also asked about Dravet Syndrome testing. There is a genetic test that can be done. Not all children with Dravet have the gene mutation, but it's present in the majority of cases. When I asked about this, the nurse seemed quite surprised and questioned how I knew about Dravet and what made me want the testing. Once again I felt small and inadequate...but I pushed through. I don't even remember how I first learned of Dravet but I'm sure it was through researching epilepsy online, searching desperately for something that sounded like Drake. When I first started reading about Dravet I sat and cried for quite some time...it sounded so much like Drake to me. But I've been afraid to mention to our neurologist...I'm not sure if I was more afraid of learning he does indeed have Dravet or if it was concern that the neurologist would shoot down the possibility and then I'd have a huge fight on my hand to get someone to take me seriously. But with the recent media coverage of our story, I've been contacted by three different families that have children with Dravet and all questioned if Drake had been tested yet. That gave me the courage and strenght to push forward and ask for the testing - knowing that others were seeing something in Drake that had them thinking Dravet Syndrome as well. So after sharing much of this with the nurse, she called back and said the doctor had agreed to the testing. But she warned that insurance often won't cover testing like this and it can be very expensive. Today I will be calling insurance to try to find out whether it will be covered or not. I'm pretty sure they did cover our last round of genetic testing (minus deductible of course), but I have to go back and check on that - since that was done through the help me grow program, anything our insurance didn't pick up was donated by the lab/provider. It will probably be at least a few weeks before we go in for the bloodwork - there are only two labs in the US that do this particular test and the nurse wasn't sure which lab the hospital is currently using for it. And from what I've read on Dravet support sites, the results can sometimes take months to get back. Regardless, I'm glad to know we're making progress in getting this nagging question in my mind answered. Of couse, if this test comes back negative, there is still the possibility that he has Dravet...I'd just have to find a doctor that agrees and will give a clinical diagnosis. I certainly am not saying I WANT him to have Dravet...but if he does truly have it, I want to know. The nurse yesterday said that knowing would not change the course of treatment. Yet from all I've read, knowing could and should indeed have a bearing on treatment. And it would be nice to finally have some explanation for all this little boy has gone through in his short life.
On a happier note...we ordered wristbands yesterday! They are glow-in-the-dark purple. Purple is the color of epilepsy awareness. On one half they say "4 Paws For Drake!" with paw prints on each end and on the other side they say "epilepsy" with butterflies on each end. Butterflies are the symbol for epilepsy awareness. Inside, they have the address of Drake's website - it's different than the sight we are currently using, DC thought it would be better to have a short address that's easier to relay to people. A friend of his donated the domain registration and we will soon activate it with a mirror back to this site...so you can use either address in the near future. The bracelets won't arrive until June 25th though, just in time for the Team Jenny benefit race in Fremont! I only ordered 300 initially - so if you want one, I'd highly recommend going to the shopping tab here or e-mailing me to place your order soon! If you live close, you can pick them up, or I can meet you somewhere to deliver them...e-mail me if that's the case, as they will be a little cheaper than listed here on the site. For those not in the area, I've included the cost of postage in the on-line ordering section, so as soon as the shipment arrives, I'll begin mailing them out to those that ordered them. I'm not sure if we will order more or not once these run out.
Well, Drake is finally up and calling me to come get him. Wishing you all a wonderful day!
I had totally forgot about the blog I was doing last year. Since the majority of that blog revolves around Drake's medical crisis of '09, I thought it fitting to share the link here. People often state that they are awed by DC's and my strength through all we deal with day to day with the boys...well, after what we went through a little over a year ago, the daily battles seem so trivial; we are just thankful to still have our little boy with us and do our best to live each day to its fullest potential. Of course it's also a lot easier to have the strength to get through the bad days when you have such wonderful friends and family to support you through it all!
http://kristencurrent.blogspot.com/
http://kristencurrent.blogspot.com/
Thanks to the media coverage we received yesterday, I was contacted by a local foundation that I had never heard of before. Parkers Purpose provides financial grants to families with disabilities and illnesses in need of financial assistance for medical expenses. Thank you for contacting me Mr. Drusback. The application has been submitted!
Since we started this journey for a Service Dog over a month ago, I have been wanting to put up a website to make it easier for people to find us and as an easy place to keep everyone updated on what's happening not only in our quest to receive a service dog but also on how Drake is doing. Today, I finally got it going!
It happened on a great day too, since we received a phone call out of the blue today from Michelle Zepeda of Fox News. She came out this afternoon to interview me (DC had already left for a trip to Geek Squad City in Kentucky) and take a little video footage of the boys. The segment, highlighting information about Thursday's fundraiser at Max and Erma's will air this evening at 6:30 and 10. I was a nervous wreck and didn't talk about 4 Paws For Ability as much as I should have, but all in all I still think it went pretty well. We never watch TV though, so it's going to be a struggle for me to remember to turn the tv on and actually watch it! lol If anyone is able to record it and would be willing to send us a copy that would be wonderful.
Five minutes after Michelle left this afternoon, Drake had a small atypical absence seizure. These are what we're seeing the most these days. The are hard to catch - we have to watch him constantly to spot them. There's nothing we can or need to do for him during these seizures, but it's important to know how many he is having so the doctor can monitor and adjust his meds accordingly. I suspect we are missing a lot of them.
Drake also had an episode this weekend while we were up at our family's cottage at Lake Erie. I'm pretty sure this was a new seizure type, but there's no way for us to be sure unless we see more of them. We were out on my dad's little Boston Whaler and Drake suddenly flopped forward off the seat. He didn't try to catch himself in anyway...he just landed face first on the boat deck and a second later began screaming. When I got him up off the floor I saw he had a bloody mouth, but thankfully no broken or loose teeth or worse injury than that. Drop seizures such as this can be some of the scariest for families to deal with and the children often have to wear helmets most of the day to be protected from injury. I really hope this isn't the path we are now headed down!
Kevin (Drake's 5 year old brother) is currently begging me to take him to Once Upon A Child (resale shop) to look for a bike, so I suppose I better sign out for now. :)
It happened on a great day too, since we received a phone call out of the blue today from Michelle Zepeda of Fox News. She came out this afternoon to interview me (DC had already left for a trip to Geek Squad City in Kentucky) and take a little video footage of the boys. The segment, highlighting information about Thursday's fundraiser at Max and Erma's will air this evening at 6:30 and 10. I was a nervous wreck and didn't talk about 4 Paws For Ability as much as I should have, but all in all I still think it went pretty well. We never watch TV though, so it's going to be a struggle for me to remember to turn the tv on and actually watch it! lol If anyone is able to record it and would be willing to send us a copy that would be wonderful.
Five minutes after Michelle left this afternoon, Drake had a small atypical absence seizure. These are what we're seeing the most these days. The are hard to catch - we have to watch him constantly to spot them. There's nothing we can or need to do for him during these seizures, but it's important to know how many he is having so the doctor can monitor and adjust his meds accordingly. I suspect we are missing a lot of them.
Drake also had an episode this weekend while we were up at our family's cottage at Lake Erie. I'm pretty sure this was a new seizure type, but there's no way for us to be sure unless we see more of them. We were out on my dad's little Boston Whaler and Drake suddenly flopped forward off the seat. He didn't try to catch himself in anyway...he just landed face first on the boat deck and a second later began screaming. When I got him up off the floor I saw he had a bloody mouth, but thankfully no broken or loose teeth or worse injury than that. Drop seizures such as this can be some of the scariest for families to deal with and the children often have to wear helmets most of the day to be protected from injury. I really hope this isn't the path we are now headed down!
Kevin (Drake's 5 year old brother) is currently begging me to take him to Once Upon A Child (resale shop) to look for a bike, so I suppose I better sign out for now. :)