KatymomtoA
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Hi everyone, I thought it was time I post an update on how Andrew, now 6 yo, is doing. I visit here often to read, but because of my lack of experience with E myself, and my son newly diagnosed, I find I don't have alot of advice to offer. I'm hoping that changes with the more experience I (unfortunately) get. At least here in the nursery forum I hope to be able to offer other parents advice and support when needed.
Anyways- a quick overview, if you haven't followed our story from the beginning, just scroll down a bit and read my previous posts if you're interested. Andrew was diagnosed with BRE Feb 2. Total seizures that we are aware of is 6. 4 daytime-including 1 set of status epilepticus, starting as focal, then secondarily generalizing, lasting almost 90 min, and 2 while sleeping. He's on valproic acid. He's seen 2 increases, after seizures. Since his last increase about a month ago, he hasn't had anymore seizures. Hopefully this means they are controlled at least for now.
After his diagnosis, we put 2+2 together, and red flags started going off when we realized that we hadn't seen any real changes in his development in almost a year. Since about last summer-around the same time we witnessed his first seizure. So I talked to his kindergarten teacher, and speech pathologist. Both felt the same way. I then went ahead and had his gross and fine motor skills tested by a physio, and occupational therapists. He tested behind in muscle strength, coordination, balance, and all fine motor skills-just as we had suspected. All behind by 1 to over 2 years delay-mostly he tested as a 4 yo, not at the 6 yo level he should be at. I realize it could be worse, as his delays are really only now becoming noticable. His behavior is getting harder to control as well as he's very impulsive-dispite our being very firm with him. Something I've never seen in any of our my other kids. It's very heart breaking as a parent to spend hours upon hours, trying to get him to learn at least a few sight words for reading (a, and, they, the, them, he, she etc) and he's just can't seem to pick any of them up. He goes from being able to write his first name one day, to not being able to write it the next day, and then write it the next day, but with mixed up, and missing letters the following day, back to being able to write it again. It really is heartbreaking. I don't think I would go so far as to call it regression, but he's definitely not really progressing, if that makes any sense.
Our app't with the Pediatric Epileptolgist is finally happening this Wednesday. Even though it's only been about 2.5 months since I requested the referral-it seems like we been waiting for eternity. I'm hoping the Dr will run further testing on Andrew to see if we can find out why this is happening. If it's just a more severe form of Rolandic Epilepsy, or if maybe he has ESES. I'm thinking at this point it's not severe enough to be ESES, but I'd feel much more confident if the PE could confirm that after an overnight EEG, and any other testing he feels necessary.
So there you have it. Not exactly a quick update. Sorry! I'm always full of hot air! If any of you have any advice to offer me, especially with our upcoming specialist app't, I would really appreciate it. :hugs:
Anyways- a quick overview, if you haven't followed our story from the beginning, just scroll down a bit and read my previous posts if you're interested. Andrew was diagnosed with BRE Feb 2. Total seizures that we are aware of is 6. 4 daytime-including 1 set of status epilepticus, starting as focal, then secondarily generalizing, lasting almost 90 min, and 2 while sleeping. He's on valproic acid. He's seen 2 increases, after seizures. Since his last increase about a month ago, he hasn't had anymore seizures. Hopefully this means they are controlled at least for now.
After his diagnosis, we put 2+2 together, and red flags started going off when we realized that we hadn't seen any real changes in his development in almost a year. Since about last summer-around the same time we witnessed his first seizure. So I talked to his kindergarten teacher, and speech pathologist. Both felt the same way. I then went ahead and had his gross and fine motor skills tested by a physio, and occupational therapists. He tested behind in muscle strength, coordination, balance, and all fine motor skills-just as we had suspected. All behind by 1 to over 2 years delay-mostly he tested as a 4 yo, not at the 6 yo level he should be at. I realize it could be worse, as his delays are really only now becoming noticable. His behavior is getting harder to control as well as he's very impulsive-dispite our being very firm with him. Something I've never seen in any of our my other kids. It's very heart breaking as a parent to spend hours upon hours, trying to get him to learn at least a few sight words for reading (a, and, they, the, them, he, she etc) and he's just can't seem to pick any of them up. He goes from being able to write his first name one day, to not being able to write it the next day, and then write it the next day, but with mixed up, and missing letters the following day, back to being able to write it again. It really is heartbreaking. I don't think I would go so far as to call it regression, but he's definitely not really progressing, if that makes any sense.
Our app't with the Pediatric Epileptolgist is finally happening this Wednesday. Even though it's only been about 2.5 months since I requested the referral-it seems like we been waiting for eternity. I'm hoping the Dr will run further testing on Andrew to see if we can find out why this is happening. If it's just a more severe form of Rolandic Epilepsy, or if maybe he has ESES. I'm thinking at this point it's not severe enough to be ESES, but I'd feel much more confident if the PE could confirm that after an overnight EEG, and any other testing he feels necessary.
So there you have it. Not exactly a quick update. Sorry! I'm always full of hot air! If any of you have any advice to offer me, especially with our upcoming specialist app't, I would really appreciate it. :hugs: