buddy
New Member
Q woke last night...middle of the night and he never just gets up and goes to the bathroom. At least i have him convinced he doesn't have to ask to go to the bathroom anymore, did that for years. but he still yells Goodnight mom, I love you and waits for a response so if I dont wake fully or answer he continues. One reason I am convinced that so much of this is neurological is that the very same things and situations can cause more anxiety at certain times/days and less on others. It is not all what he is thinking about.
So, he woke and asked me if he was going to die because of kidney and heart problems. i said no, why? (he has worried about cancer in the past too, when he puts non edibles in his mouth, especially if he swallows things). And he said because they checked his heart at the hospital (clearing him for the new medication,everything was great and I told him so) and they also have told him, so have I, that he needs to drink water or whatever he likes during the day and not to hold his pee if he has to go more. He was told that it will keep his kidneys healthy. So, I told him it wouldn't happen in one day anyway so we would always see it coming and be able to fix it right away. (not going to get into exceptions to that rule) Couldn't say nothing would happen because he maybe would not drink enough to test the theory. So, he said fine, and he went back to bed (and by the way, said I love you....i love it when he says it first). An hour later, he is up asking to get a glass of water so he doesn't die. Ok fine go get one... Then I reminded him again, there is nothing to worry about. It is my job to care for him and I would never let him be on something that would kill him. (yes, everyone, I know all medications have risks, but you see my dilema...he just needs so much reassurance, he will even tell me somtimes...mom just say all the bees are dead even though I know they are not, it will make me feel better). I asked if he wanted a clonidine to help his brain quiet down. He said no he promises he will sleep now. He is still asleep. i hope he will wake before 9 so we can get ready easily.
I am all set to go. Couldn't fall back to sleep so have been up since about 1:30. I have been feeling nauseated (like before) and it feels like when you get carsick. I ate well yesterday so it is not hunger. And it is hard to make myself eat when I feel that way. I am going to stay at the school all day and I will go online if I can (not sure of their blocks, but my phone will get through too).
I sent my update and the recommendations that the hospital. staff gave me in a group email to everyone and included the principal. I hope he reads it. i described the seizure pattern and reminded people that because he doesn't go unconscious, he will associate the feelings that are electrically triggered to whatever is happening at that time, so it looks like it is ABOUT that situation. i also said that getting angry at him for seizures wont help. He actually needs quiet directions and reassurance. it feels wrong at the time, but when you see the difference in the results then you see it is worth it. Does it mean no consequences since he does remember? no, only because all he knows is he felt it and he did it i want him to feel like he can gain control. So reasonable consequences that are logical not "natural". If he is in a place where he is not safe and his brain/body cant keep quiet then mom needs to help or he needs to go to his "office" or whatever the situation calls for.
It is only the ninty-thousandth time I have said such things, but one can hope...
I was just reading a post from a girl who finally was diagnosed with TLE after years of being treated for anxiety and possibly bi-polar. She knew it was different. She tried to describe the feelings and it is so hard even for adults to describe.
I pray so hard that today goes well. He did so great yesterday but I kept it very low key. I let him watch whatever he wanted on TV, and we went outside several times. Had his hb riding in the morning. Sure hope the stimulation is not too much today. And I hope kids and staff are going to be kind. He seems like such a little you know what, but if you know him inside and why the issues happen I just dont understand how they can't do better at times. I have never in my career yelled at a student. No matter their behavior to me. (to my kid, of course I have yelled, but not to another person's child) I will never understand it.
Feel free to send energy Q's way... everything helps.
oh yeah, he was asking if I told some of the nurses to be nice to him, and I said of course, i always take care of you.... And he said " you, and the devil". And he laughed his head off.... out of the mouth of babes. (it wasn not an evil possesed laugh, he has one of those, it was an, I am so funny laugh) by the way-he has such a basic total belief in God (and I am not super religious) but he will even pray when a nascar race is rained out that he fixes it so he can watch... so funny he thinks that will work. And he asks me to pray the same prayer he says, and I have to do it out loud so he is sure I really did it.... you never know.......................................
So, he woke and asked me if he was going to die because of kidney and heart problems. i said no, why? (he has worried about cancer in the past too, when he puts non edibles in his mouth, especially if he swallows things). And he said because they checked his heart at the hospital (clearing him for the new medication,everything was great and I told him so) and they also have told him, so have I, that he needs to drink water or whatever he likes during the day and not to hold his pee if he has to go more. He was told that it will keep his kidneys healthy. So, I told him it wouldn't happen in one day anyway so we would always see it coming and be able to fix it right away. (not going to get into exceptions to that rule) Couldn't say nothing would happen because he maybe would not drink enough to test the theory. So, he said fine, and he went back to bed (and by the way, said I love you....i love it when he says it first). An hour later, he is up asking to get a glass of water so he doesn't die. Ok fine go get one... Then I reminded him again, there is nothing to worry about. It is my job to care for him and I would never let him be on something that would kill him. (yes, everyone, I know all medications have risks, but you see my dilema...he just needs so much reassurance, he will even tell me somtimes...mom just say all the bees are dead even though I know they are not, it will make me feel better). I asked if he wanted a clonidine to help his brain quiet down. He said no he promises he will sleep now. He is still asleep. i hope he will wake before 9 so we can get ready easily.
I am all set to go. Couldn't fall back to sleep so have been up since about 1:30. I have been feeling nauseated (like before) and it feels like when you get carsick. I ate well yesterday so it is not hunger. And it is hard to make myself eat when I feel that way. I am going to stay at the school all day and I will go online if I can (not sure of their blocks, but my phone will get through too).
I sent my update and the recommendations that the hospital. staff gave me in a group email to everyone and included the principal. I hope he reads it. i described the seizure pattern and reminded people that because he doesn't go unconscious, he will associate the feelings that are electrically triggered to whatever is happening at that time, so it looks like it is ABOUT that situation. i also said that getting angry at him for seizures wont help. He actually needs quiet directions and reassurance. it feels wrong at the time, but when you see the difference in the results then you see it is worth it. Does it mean no consequences since he does remember? no, only because all he knows is he felt it and he did it i want him to feel like he can gain control. So reasonable consequences that are logical not "natural". If he is in a place where he is not safe and his brain/body cant keep quiet then mom needs to help or he needs to go to his "office" or whatever the situation calls for.
It is only the ninty-thousandth time I have said such things, but one can hope...
I was just reading a post from a girl who finally was diagnosed with TLE after years of being treated for anxiety and possibly bi-polar. She knew it was different. She tried to describe the feelings and it is so hard even for adults to describe.
I pray so hard that today goes well. He did so great yesterday but I kept it very low key. I let him watch whatever he wanted on TV, and we went outside several times. Had his hb riding in the morning. Sure hope the stimulation is not too much today. And I hope kids and staff are going to be kind. He seems like such a little you know what, but if you know him inside and why the issues happen I just dont understand how they can't do better at times. I have never in my career yelled at a student. No matter their behavior to me. (to my kid, of course I have yelled, but not to another person's child) I will never understand it.
Feel free to send energy Q's way... everything helps.
oh yeah, he was asking if I told some of the nurses to be nice to him, and I said of course, i always take care of you.... And he said " you, and the devil". And he laughed his head off.... out of the mouth of babes. (it wasn not an evil possesed laugh, he has one of those, it was an, I am so funny laugh) by the way-he has such a basic total belief in God (and I am not super religious) but he will even pray when a nascar race is rained out that he fixes it so he can watch... so funny he thinks that will work. And he asks me to pray the same prayer he says, and I have to do it out loud so he is sure I really did it.... you never know.......................................
