This video clip is from Monday. I suspect this was non-convulsive seizure activity. He was like this for about 30 minutes. Notice the odd mouth movements and occassional twitching in his arm. It's heartbreaking when your normally super active toddler goes off into his own little world and you don't have a clue what's causing it.
This video is a couple months old. I was just cleaning old stuff off the camera card and had to share this. You know your toddler is far too accustom to taking meds when he tries to do it himself!
I accompanied Drake to his Early Intervention class this afternoon so I could drop of 4 Paws For Drake t-shirts for staff members and take some video footage for our 4 Paws video. For those that don't know, we'll be submitting a very lengthy, detailed video documenting our family's routines. It was really fun to watch how much he has progressed in the classroom setting since I started taking him to playgroup there last fall...he seems to really know the routine now and, at least today, did great transitioning between activities. I also caught a couple great examples of the seizures we're seeing most frequently right now. Watch the videos and see if you can spot the seizures. Then read below the videos for an explanation.
Think you know where the seizures are?? Scroll down to find out.
He's a couple seconds into a seizure as the first video begins. It ends at the 27 second mark. Then he goes into another at about the 1 min 54 sec mark in the first video - it's difficult to find the exact start since his back is to the camera. The second video starts off about 10 seconds after the first video ended...he's still in the seizure when this video begins - it ends around 22 seconds. I'm still not completely clear on what type of seizure these are...they are either absence seizures or partial seizures. And I suppose there's the chance they aren't seizures at all - but there's such a distinct change in behavior with them, and that blank look on his face, that I'm fairly confident they are. The fact that he's still semi responsive - looking towards movements/sounds throws me off a bit. Hopefully I'll remember to show these to the neurologist next week to get his take on them.
Well, we had the physical therapy evaluation this morning and it's official, Drake will begin PT on July 12th.
He has low muscle tone (seems odd, since the kid seems SO freaking strong). Mainly his core muscles and legs. She said he seems to use pure momentum for movement vs true muscle strength. So basically he makes fast jerky movements to accomplish things and this is why he seems so clumsy/uncoordinated. His hip muscles and ankles are weak and his right foot curves in a C shape. She's hopeful that he's young enough that they can strengthen his hips enough to resolve the problems throughout the rest of his legs - but there's a chance he may have to have orthodic devices (leg braces basically) to correct the issues with his feet and ankles if he doesn't make good progress with the hip strengthening.
The hard part is that he has a lot of sensory issues as well (as we learned with his occupational therapy evaluation), and without a good grasp of the sensory stuff (like where his body is in space, the strength of his own movements, ability to block out distractions, etc etc etc), he's going to struggle with the physical therapy; but without the physical therapy, he'll be slow to make progress with the occupational (sensory) therapy. This tells me it could be a long road before we start seeing good progress in either area.
And talking to the physical therapist today I'm realizing more and more just how much our older son, Kevin also needs at least OT, possibly PT as well. We've known he had significant motor delays for about a year now, but I kept hoping he'd catch up from the therapy he received in school (special ed preschool). That didn't happen, so we've decided to keep him in preschool one more year even though he turned 5 in March. I just don't know if I can handle hauling BOTH kids to therapy sessions multiple times a week. So for now, we're going to let Kevin just enjoy his summer, playing with friends and participating in some fun programs at the rec. But in the fall, I will probably speek with his pediatrician about getting him referred for evaluations as well (hopefully by then Drake will not be going to therapy quite as frequently. *fingers crossed*).
Took Drake to the hospital last week to have bloodwork drawn to test for Dravet Syndrome. It can take several weeks to get the results back, but I'm already driving myself nuts thinking about it. During the day I keep busy enough that I'm fine, but this time of night, when the house is quiet and I find myself avoiding housework by "playing" on the computer is when it gets rough. Some days I feel 100% sure Drake has Dravet's. Other days, I think the tests will surely come back negative and everyone will look at me like I'm crazy for ever thinking he could have it in the first place. I spend hours reading other Dravet Syndrome stories. Many of these kids are so much worse than Drake that it would seem impossible for him to be afflicted by the same condition. But then there are other stories that are eerily similar to ours. Children that had just vague signs that things weren't quite right when they were toddlers, but nothing that was easily pinpointed or labeled. They seemed perfectly normal to the outside world, but their parents weren't so sure and fought for answers. As these children grow older, the syndrome becomes more apparent...with clear autistic traits, significantly increased seizure activity (we're talking hundreds of seizures per DAY), etc. Each child with Dravet's is just so very unique that it makes it difficult to find another child with the exact same timing and manifestations as your own. It is quite madening trying to figure it all out. I hope, no matter what the results from his tests are, that I can accept it and move on. But I fear if the tests are negative, I will just be MORE driven to find a doctor that sees what I see...that though mild, Drake's symptoms seem to indic
He has low muscle tone (seems odd, since the kid seems SO freaking strong). Mainly his core muscles and legs. She said he seems to use pure momentum for movement vs true muscle strength. So basically he makes fast jerky movements to accomplish things and this is why he seems so clumsy/uncoordinated. His hip muscles and ankles are weak and his right foot curves in a C shape. She's hopeful that he's young enough that they can strengthen his hips enough to resolve the problems throughout the rest of his legs - but there's a chance he may have to have orthodic devices (leg braces basically) to correct the issues with his feet and ankles if he doesn't make good progress with the hip strengthening.
The hard part is that he has a lot of sensory issues as well (as we learned with his occupational therapy evaluation), and without a good grasp of the sensory stuff (like where his body is in space, the strength of his own movements, ability to block out distractions, etc etc etc), he's going to struggle with the physical therapy; but without the physical therapy, he'll be slow to make progress with the occupational (sensory) therapy. This tells me it could be a long road before we start seeing good progress in either area.
And talking to the physical therapist today I'm realizing more and more just how much our older son, Kevin also needs at least OT, possibly PT as well. We've known he had significant motor delays for about a year now, but I kept hoping he'd catch up from the therapy he received in school (special ed preschool). That didn't happen, so we've decided to keep him in preschool one more year even though he turned 5 in March. I just don't know if I can handle hauling BOTH kids to therapy sessions multiple times a week. So for now, we're going to let Kevin just enjoy his summer, playing with friends and participating in some fun programs at the rec. But in the fall, I will probably speek with his pediatrician about getting him referred for evaluations as well (hopefully by then Drake will not be going to therapy quite as frequently. *fingers crossed*).
Took Drake to the hospital last week to have bloodwork drawn to test for Dravet Syndrome. It can take several weeks to get the results back, but I'm already driving myself nuts thinking about it. During the day I keep busy enough that I'm fine, but this time of night, when the house is quiet and I find myself avoiding housework by "playing" on the computer is when it gets rough. Some days I feel 100% sure Drake has Dravet's. Other days, I think the tests will surely come back negative and everyone will look at me like I'm crazy for ever thinking he could have it in the first place. I spend hours reading other Dravet Syndrome stories. Many of these kids are so much worse than Drake that it would seem impossible for him to be afflicted by the same condition. But then there are other stories that are eerily similar to ours. Children that had just vague signs that things weren't quite right when they were toddlers, but nothing that was easily pinpointed or labeled. They seemed perfectly normal to the outside world, but their parents weren't so sure and fought for answers. As these children grow older, the syndrome becomes more apparent...with clear autistic traits, significantly increased seizure activity (we're talking hundreds of seizures per DAY), etc. Each child with Dravet's is just so very unique that it makes it difficult to find another child with the exact same timing and manifestations as your own. It is quite madening trying to figure it all out. I hope, no matter what the results from his tests are, that I can accept it and move on. But I fear if the tests are negative, I will just be MORE driven to find a doctor that sees what I see...that though mild, Drake's symptoms seem to indic
Saturday was the big day. Team Jenny 5K run/walk and children's fun run in Fremont Ohio. The weather was perfect and there was a great turn-out. It was fabulous to meet Jenny Burroughs and her family. Jenny was in a terribly accident a few years ago and the community rallied behind her to raise money to help with medical expenses. Jenny decided to keep the spirit alive by continuing with an annual charity race to benefit others in the community facing a medical crisis. This year, Drake was selected as the beneficiary of the race. We haven't yet heard how much was raised on Saturday, but regardless of the amount, we are extremely thankful for Jenny and all those that participated! Drake did pretty well during the event, though we believe he did have several small absence and complex partial seizures - excitement tends to bring them on and it was definitely an exciting day for him. We hope to pay-it-forward by attending the race next year as participants, with his service dog in tow. :)
In other "news"... Drake began Occupational Therapy on Friday. They started the session by putting headphones on him with childrens music, then putting him in a therapy swing for several minutes. It's amazing what a difference this made in his temprament and ability to focus on tasks the remainder of the therapy session! We're thinking we need to get him a small mp3 player and headphones for home and outings now.
Today we go for his Physical Therapy evaluation. Several providers (Early Intervention teacher, Developmental Pediatrician, and Occupational Therapist) have noted that he has an unsteady gait and weak core muscle tone. He turns his feet in when walking intermittently, which results in him literally tripping over his own feet. It will be interesting to see what the Physical Therapist thinks. Everytime we go for an evaluation, I have this feeling that they are going to tell us he's right on target, nothing to worry about. I keep thinking I'm just being this over-reactive mom that worries too much and unnecessarily. Everytime I'm proven wrong and realize it's a good thing I've been listening to my "mommy instinct." Will today bear the same results?
Today was one of those days that really reinforced my drive to get our fundraising goal met so Drake can receive his service dog as soon as possible. Nothing would make him happy from the time he woke up this morning. He did have an hour period that he was happy while he played in the pool as Kevin had his swim lessons in another area. Of course, he kept trying to run through the pool which resulted in falling and going under, so it was still very nerve-wracking for mom. This afternoon he had school - thankfully he LOVES getting on the bus. But when he got home we had a note that he had three complex partial seizures while there. And he was crabbier than ever as I tried to prepare dinner - banging his head as hard as he could on the kitchen floor and throwing (and shattering to smitherings) a glass bowl. Fun times. :/ There isn't much the dog can do for seizures like he had today - other than alerting caregivers during them, in the event he wasn't being watched closely. But OMG would the behavior disruption techniques have been wonderful today!
Yesterday we went and played with new friends. The Horner's youngest daughter Kaylynn has Dravet Syndrome and received a service dog from 4 Paws about a year ago. The boys had a great time playing with Kaylynn and her big sister Maddy and I thoroughly enjoyed spending more time with mom, Danielle, who truly understands everything we are going through with Drake and everything involved with obtaining and having a service dog. It's a huge bonus that they only live about 2-3 miles from us. Such a small world!
For those that haven't checked out the updated Fundraising Events page...we will be at First Fridays event in Downtown Perrysburg on July 2 (5-9pm) selling t-shirts and awareness bracelets.
Yesterday we went and played with new friends. The Horner's youngest daughter Kaylynn has Dravet Syndrome and received a service dog from 4 Paws about a year ago. The boys had a great time playing with Kaylynn and her big sister Maddy and I thoroughly enjoyed spending more time with mom, Danielle, who truly understands everything we are going through with Drake and everything involved with obtaining and having a service dog. It's a huge bonus that they only live about 2-3 miles from us. Such a small world!
For those that haven't checked out the updated Fundraising Events page...we will be at First Fridays event in Downtown Perrysburg on July 2 (5-9pm) selling t-shirts and awareness bracelets.
Wishing all you dads out there a wonderful Father's Day! We celebrated this evening with a barbeque dinner at my parents' house. I can't begin to express how thankful I am for having family so close by and all the support they provide. Watching my boys go back and forth between their father and my own father filled me with so much joy today!
Sadly the day also involved a small blow to our hopes that Drake was on the road to being seizure free. While playing outside this afternoon, he had a brief seizure. Anyone that didn't know what to look for would never have even recognized it as a seizure. He was standing on the porch looking out over the yard and babbling to the birdies when all of a sudden his head jerked to the right as if he were looking over his shoulder and his eyes rolled up and to the right so far you could barely see the color of his iris anymore. It only lasted a second or two, but afterwards he was very quiet and just looked out over the yard seeming a bit dazed. It took about 5 minutes for him to return to smiling and babbling. And with this small seizure, the 13 day streak of being seizure free ended. As I entered the seizure in our seizure tracker I noticed that this was the 75th logged seizure. But because so many of his seizures are fast and minor, such as today's, we suspect there are many more that we never see and I'd guess he's now well over 100 seizures since this all started February 17, 2009. Tomorrow we begin the "seizure-free" countdown again.
Sadly the day also involved a small blow to our hopes that Drake was on the road to being seizure free. While playing outside this afternoon, he had a brief seizure. Anyone that didn't know what to look for would never have even recognized it as a seizure. He was standing on the porch looking out over the yard and babbling to the birdies when all of a sudden his head jerked to the right as if he were looking over his shoulder and his eyes rolled up and to the right so far you could barely see the color of his iris anymore. It only lasted a second or two, but afterwards he was very quiet and just looked out over the yard seeming a bit dazed. It took about 5 minutes for him to return to smiling and babbling. And with this small seizure, the 13 day streak of being seizure free ended. As I entered the seizure in our seizure tracker I noticed that this was the 75th logged seizure. But because so many of his seizures are fast and minor, such as today's, we suspect there are many more that we never see and I'd guess he's now well over 100 seizures since this all started February 17, 2009. Tomorrow we begin the "seizure-free" countdown again.
Last night I attended the Parker's Purpose Foundation's annual benefit dinner along with my mother, her cousin, my sister and her kids. DC stayed home with the boys since we knew it would be a late night and Drake has to be in bed no later than 8 (typically he's in bed closer to 6:30), otherwise he's uncontrollable the next day and very likely to have seizures. If you've not heard of Parker's Purpose, I highly encourage you to visit their website to learn about this phenomenal organization. After dinner and an incredible speech by Chris Spielman, I was awarded a $1,000 check for Drake's service dog! I felt a bit guilty that I was the only past/present recipient family in attendance that did not speak...but public speaking has always been something I avoid at all costs! I just hope that the organization and their donors realize just how much that gift means to our family! That gift pushes us over $3,000 raised...$10,000 left to go. That still seems like such an overwhelming figure. But with the events in the works in the next month, I'm confident we'll get there very soon. We had to leave the event a bit early because we were receiving reports that the weather was getting very bad back in Perrysburg; while it was storming as we came into town and still raining when I arrived home, thankfully that's about as long as the storms lasted. Nothing like the storms we had a few weeks ago!
Today the boys and I attended a special one year old's birthday party. We arrived a bit late since I had to wait for Drake to finish napping before we could leave. But we had a great time playing outside with all the other kiddos. Sadly, we had to cut out a few minutes early as well because Drake was beginning to overheat. Even after being in the van with A/C for 15 minutes, he was still beat red by the time we arrived home. Thankfully no seizures (we're now 10 days seizure free!!), but he was asking to go to bed shortly after we arrived home (before 6pm)! Drake has never really sweat much, but ever since he's been on Topomax he overheats super easily and does not sweat at all. We're in the process of starting a new med so we can get him off the Topomax. I really hope that wean can be completed before the summer is over and that it improves this condition...otherwise we're going to have to spend most of the summer shut up inside with the A/C going full blast.
For those in Northwest Ohio, please consider attending the Team Jenny race in Fremont one week from today. Proceeds will go to Drake! We will also be debuting our 4 Paws For Drake t-shirts and bracelets on that day, so if you are attending, be sure to bring a little extra cash or your checkbook! ;)
Today the boys and I attended a special one year old's birthday party. We arrived a bit late since I had to wait for Drake to finish napping before we could leave. But we had a great time playing outside with all the other kiddos. Sadly, we had to cut out a few minutes early as well because Drake was beginning to overheat. Even after being in the van with A/C for 15 minutes, he was still beat red by the time we arrived home. Thankfully no seizures (we're now 10 days seizure free!!), but he was asking to go to bed shortly after we arrived home (before 6pm)! Drake has never really sweat much, but ever since he's been on Topomax he overheats super easily and does not sweat at all. We're in the process of starting a new med so we can get him off the Topomax. I really hope that wean can be completed before the summer is over and that it improves this condition...otherwise we're going to have to spend most of the summer shut up inside with the A/C going full blast.
For those in Northwest Ohio, please consider attending the Team Jenny race in Fremont one week from today. Proceeds will go to Drake! We will also be debuting our 4 Paws For Drake t-shirts and bracelets on that day, so if you are attending, be sure to bring a little extra cash or your checkbook! ;)
We took Drake for an Occupational Therapy evaluation today. He's been evaluated before through Help Me Grow (he attends classes twice a week through HMG), and had been referred for additional private therapies by his developmental pediatrician...we knew he was delayed, yet I still had this slim hope in the back of my mind that we'd be told today that he was developing right on track and didn't need their help. Instead, we were advised that he should begin OT once a week as soon as possible. Due to the center's overwhelming caseload however, they weren't able to get him in to start until June 25th and he'll only be able to go every other week for a while until they have more openings. It was apparent during his evaluation that he has a lot of sensory stuff going on. I don't know why that came as a pretty big surprise to me. We've suspected Sensory Processing Disorder for quite some time now with our older son, Kevin. They boys react to things so differently that I guess I just never really recognized that Drake just seems to be on the opposite end of the spectrum in many regards.
He's also scheduled for a physical therapy evaluation on June 28th and we are on a wait list for a speech evaluation - they said that could be another 3-4 weeks. If anyone out there is a pediatric therapist, Rehab Dynamics in Toledo is in desperate need of additional therapists!
I'm glad Drake will be getting the extra help that he needs. But I can't say I'm looking forward to driving to Toledo several times a week (once the other inevitable therapy sessions are recommended).
He's also scheduled for a physical therapy evaluation on June 28th and we are on a wait list for a speech evaluation - they said that could be another 3-4 weeks. If anyone out there is a pediatric therapist, Rehab Dynamics in Toledo is in desperate need of additional therapists!
I'm glad Drake will be getting the extra help that he needs. But I can't say I'm looking forward to driving to Toledo several times a week (once the other inevitable therapy sessions are recommended).
Took the boys to the zoo today since Elmo was visiting. We met up with a few friends and their kiddos and had a wonderful morning. PNC Bank had a tent set up with some fun interactive things for the kids to do, including dressing up in a career choice outfit for a unique photo opportunity. It took kevin a split second to opt for the astranaut outfit...he is fascinated with outer space and often asks how he can be an astranaut when he grows up. First, he says, he'll be an "army man." He's been stuck on this for over a year now. It will be really interesting to see what he follows this path when he gets older! Drake, fittingly, was dressed as a doctor.
