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