My 4-month old was just diagnosed with epilepsy this past Tuesday. He had his first seizure on Saturday, but it was so fast I wasn't sure. Then it happened again on Sunday, at which time I took him to the ER, where he was later admitted for several days. He had an EEG, and MRI and a lumbar puncture, plus countless needle sticks for blood and 3 IV's (because they had a hard time finding his little veins.)
He's on medication right now (trileptal), but it doesn't seem to be helping. In fact, the seizures are worse and more often. The neurologists tell us it will take some time to find the right dose and even then, it will be changing as he continues to grow. I trust our team, but at the same time, I feel like we need to get this at least somewhat under control. Right now, even on the trileptal, he's having seizures about every 2 hours, for about 2-3 minutes, with 2-4 "aftershocks" which last about 4-7 seconds each.
I'm just finding it really difficult to see my beautiful little guy having these seizures over and over again, and worse. I mean, to see this and not be able to do anything at all is just totally brutal.
Does anyone else have an infant or have you been through this, and what medication worked for your little one? Do you have any tips for dealing with this or most importantly, how to help him?
Right now he's an infant who is too little to even sit, much less stand or walk, but are the seizures going to be even worse once he does? (Meaning, is he going to start falling over?)
Ugh. I have so many questions. But, I just have to do something to help my little guy. He does not deserve to be going through this at such a young age. Sweet baby.
Any advice, suggestions, or resources are very welcome. Thanks!
He's on medication right now (trileptal), but it doesn't seem to be helping. In fact, the seizures are worse and more often. The neurologists tell us it will take some time to find the right dose and even then, it will be changing as he continues to grow. I trust our team, but at the same time, I feel like we need to get this at least somewhat under control. Right now, even on the trileptal, he's having seizures about every 2 hours, for about 2-3 minutes, with 2-4 "aftershocks" which last about 4-7 seconds each.
I'm just finding it really difficult to see my beautiful little guy having these seizures over and over again, and worse. I mean, to see this and not be able to do anything at all is just totally brutal.
Does anyone else have an infant or have you been through this, and what medication worked for your little one? Do you have any tips for dealing with this or most importantly, how to help him?
Right now he's an infant who is too little to even sit, much less stand or walk, but are the seizures going to be even worse once he does? (Meaning, is he going to start falling over?)
Ugh. I have so many questions. But, I just have to do something to help my little guy. He does not deserve to be going through this at such a young age. Sweet baby.
Any advice, suggestions, or resources are very welcome. Thanks!