Rylan's seizures seem to be getting more frequent while on a low dose of meds :-( It's so stressful. . .because while i want his neuro to up his meds i am scared to at the same time, because of his last reaction. I wish i could just take it all away from him so he doesn't have to go through this. I see friends and family having healthy kids all the time so I sometimes wonder why my son has to go through this. It's very hard to accept it sometimes. But, there is a reason God wanted to put Rylan with me and I know we can all get through this. He is a strong little guy and so far these seizures have not kept him down. There are some days that are harder than others but he always has a smile at some point in the day. Mommy loves you little man ♥
And I have posted a video of what rylan's seizures look like
http://www.youtube.com/watch?v=BV44CErEN1s&feature=g-upl&context=G20d8027AUAAAAAAAAAA
Tuesday, February 28, 2012
Wednesday, February 15, 2012
Somebody Please Wake Me Up :/
A lot has happened since my last post a few weeks ago. First, the last post I have on here was about taking him to E.R. for strange behavior. . .well a week or so after that we took Rylan to the doctor because he was doing the exact same thing and he started vomiting (sorry tmi). He looked horrible and he was just so tired had no energy and the nurse right away knew this wasn't good. She looked very concerned about him. So dr. chen came in and looked him over and seemed very concerned as well, I had told her my concerns that i thought it could be his meds causing it and right away she agreed with me. So she sent us over to the e.r. so they can get his levels checked right away because he was getting sicker. They checked his levels and it was within normal range. Well they explained to me that some kids are more sensitive to medications than the average kid (which is what the results were based off) so they said that was what is going on with my son, and they drove him in an ambulance to Cardinal Glennon and kept an eye on him over night. He was fine again the next day so they said it was the meds causing it and kept him off it and sent us home.
A couple days later we are back in the same hospital because we had a scheduled 72 hour video eeg. It was pretty uneventful except maybe two seizures, and one weird eye rolling episode when he was watching a movie with flashing lights. The first seizure i marked down they checked it on the EEG and came back in and said it didn't register as a seizure, so the rest of the time we were there i had it in my head that these episodes were not seizures after all. So i started thinking what else it could be and decided maybe it's an eye thing, and that when we got the test results back that were going to be normal i was going to get him into see an eye doctor. . .well it took two full weeks for them to get the results back to his neurologist. I had called earlier that week and his nurse told me that so far from what she gathered his EEG was reading normal, but she couldn't officially say until he got the results back. Well last Friday I get a call from Rylan's Neurologist himself (Never a good thing) and when i heard his voice my heart sank because i knew it wasn't going to be what i was expecting and what i was told previously. . .He preceded to tell me that my son was in fact dealing with seizures. He was concerned that these could turn into the convulsing type of seizures and wanted to get him back and meds right away. He even told me that in parts of the EEG there were seizure tendency's ( where they could have turned into seizures but did not). I felt so numb. I know i have to be strong for my son but hearing these results just tore me up. I am more worried now because i don't want him to have to deal with this, and I was hoping that for once my mommy instincts were wrong, but they weren't. So if you are a mother please listen to your mommy instincts when it comes to your child because we know our children best ♥♥
A couple days later we are back in the same hospital because we had a scheduled 72 hour video eeg. It was pretty uneventful except maybe two seizures, and one weird eye rolling episode when he was watching a movie with flashing lights. The first seizure i marked down they checked it on the EEG and came back in and said it didn't register as a seizure, so the rest of the time we were there i had it in my head that these episodes were not seizures after all. So i started thinking what else it could be and decided maybe it's an eye thing, and that when we got the test results back that were going to be normal i was going to get him into see an eye doctor. . .well it took two full weeks for them to get the results back to his neurologist. I had called earlier that week and his nurse told me that so far from what she gathered his EEG was reading normal, but she couldn't officially say until he got the results back. Well last Friday I get a call from Rylan's Neurologist himself (Never a good thing) and when i heard his voice my heart sank because i knew it wasn't going to be what i was expecting and what i was told previously. . .He preceded to tell me that my son was in fact dealing with seizures. He was concerned that these could turn into the convulsing type of seizures and wanted to get him back and meds right away. He even told me that in parts of the EEG there were seizure tendency's ( where they could have turned into seizures but did not). I felt so numb. I know i have to be strong for my son but hearing these results just tore me up. I am more worried now because i don't want him to have to deal with this, and I was hoping that for once my mommy instincts were wrong, but they weren't. So if you are a mother please listen to your mommy instincts when it comes to your child because we know our children best ♥♥
Subscribe to:
Posts (Atom)