I should have caught this one...

Discussion in 'General Parenting' started by buddy, Nov 7, 2011.

  1. buddy

    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.......................................
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I hope all goes well today.

    by the way, what did Q think about the whole Kyle Busch thing this weekend? Did he understand it at all? I was wondering if he had an opinion.
  3. DDD

    DDD Well-Known Member

    Best of luck today. Hugs. DDD
  4. Ma Kettle

    Ma Kettle New Member

    Sending hugs and good vibes to you and Q. Will watch tonight for an update from you.

    Take care!

    Ma Kettle
  5. TerryJ2

    TerryJ2 Well-Known Member

    Fingers crossed!

    I get nauseated when I don't get enough sleep. Just saying ...

    I hope you feel better. I will check back.
  6. buddy

    buddy New Member

    Oh my gosh he was beside himself. he looked it up online etc. I couldn't fully understand what he was telling me about it but even today he was trying to explain it to me.

    Apparently he heard something else too, I didn't realize it was on his sports show, I always assume it will be more about sports but I have to be more careful now. Apparently some sports guy got in trouble for having sex with a teenager (staff said it was in newspapers etc.) I didn't watch anything so I didn't know, sigh. He told the school psychiatric that he (the psychiatric) is gonna get in trouble for having sex with a teenager. thought he was being funny. psychiatric just told him the conversation was over if he could not talk appropriately and he stopped.
  7. Crystal72

    Crystal72 New Member

    I want you to know that I am still here for you like everyone here. It's just I am running like a chicken without heads thru meetings and gathering info and meetings. Ok I mentioned meetings lol
    And difficult child got discharged from partial today. I was on the go from 7 till now and tell me about nauseated. I
    That! It's sleep deprived.
    Go easy there. I got your back!!
  8. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Ahhh, I know what Q is talking about. A coach from Penn State got caught having sex with minors. Now coaching what I dont know. I dont know if he is an active coach, retired coach or what. I just caught a blip on tv.

    Tell Q I am upset with kyle too. Kyle had done a pretty good job this year getting his "Rowdy Busch" personality under control but he sure blew that up this past weekend. However to be fair, Kyle isnt the only one who does these things. I can think of about a handful of other drivers I would like to run my race car into myself...lol.
  9. buddy

    buddy New Member

    You guys are right, I got a little nap and it did stop. Must have been that. Thank heaven. that was a crud feeling. All day I have felt a little anxious of course, hard to stop that when every single day for a couple of months has been one thing or another.... but I think we both did great.

    Hey Crystal, so is that it?? did they suggest anything? How about starting a thread and telling us how things went and how he is doing???? (I'm gonna get you in a new thread one way or another...LOL)

    I am so glad to have you on board and watching my back! I luv all of you so much and really appreciate everything.
  10. TerryJ2

    TerryJ2 Well-Known Member

    Ohhh, yes, I saw that, too. Didn't read the story. The headline said it all. :(
    Sorry about difficult child mentioning it at school.
  11. Steely

    Steely Active Member

    What does TLC stand for?
  12. buddy

    buddy New Member

    Tender Loving Care? Or the network The learning channel???

    OH, I am feeling stupid right now, are you asking about TLE??? Temporal Lobe Epilepsy I just went thru the posts and saw at the bottom (of course the last place I looked) where there was an acronym.... I bet that is what I put, sorry, should have spelled it out.

    If that is not it, then I dont know.... smile!
  13. Steely

    Steely Active Member

    Duh, now I am the one that felt stupid. I am like TLC - the learning channel??? HA. Sorry, I mis-read it. You meant TLE - OK epilepsy. Gotcha.

    I am hoping difficult child is doing OK tonight. <<HUGS>>
  14. buddy

    buddy New Member

    you know, Q is good at generalizing SOME things...and from the time he was very little he learned the concept of payback...and now it is how he thinks of revenge. He doesn't get the consequences that come from it. It is tough when I have to ask if he seeks revenge etc...it is all directly related to that. He also said last year before school started..... MOM, The new 2010 Q model is rolling out and is gonna be the best one yet in school. (didn't happen but that is true in nascar too right? some work, some dont) I really can't handle his not having his nascar, it is mostly positive. But a few things they do and say he latches on to and by now you know my boy so......
  15. buddy

    buddy New Member

    oh good Steely, I am glad I figured it out...

    yes, he is ok and we had a close call because he broke a rule (locked me out of the house, just joking with me but it is a huge rule for me because he has done it when he wouldn't let me back in- opened it when i did the if you dont open it in five seconds... he opened it and laughed). I usually have my keys for that very reason but the dog slipped out and.....
    So, I said well, you made a choice that is against the rules so no more outside. he said i hear my friends and i am going to go anyway (me=fear, shades of two weeks ago stirring) and i said, well that is not a choice anymore so if you dont listen then no watching the hockey game tonight. I reminded him we had a deal about that. Q stopped demanding and just said ok and went to his computer. My heart was beating a little stronger but I am just acting cool like of course you are going to follow my directions, nothing has changed....You can do this.... And he did. He is watching the game now.
  16. Steely

    Steely Active Member

    UGH....I don't miss that fear adrenaline "am I gonna have to have a stand off" feeling. Shoot, I still do have it at times. Bleck.
    Sounds like the Lithium is helping a bit. I will keep the good juju going your way.
  17. buddy

    buddy New Member

    will be truly appreciated, every single staff person saw him today at some point and they said something was very different. He was who he is, but that walking on egg shells thing was not there for any of them...
  18. Liahona

    Liahona Guest

    That is great. I hope it continues. :)
  19. Malika

    Malika Well-Known Member

    You are really so strong with this enforcement of consequences... no way I would implement this, I think (not through lack of desire or willingness but just lack of sheer steel). And I am sure it helps give your son stability and to operate in the world...
  20. DammitJanet

    DammitJanet Well-Known Member Staff Member

    We have to be proactive with our kids. Gold stars dont work with most of our kids or we wouldnt be on this board.

    Dee, you tell Q that while Nascar says that Boys will be Boys, they also have rules that have to be followed for the safety of everyone involved. Rules that everyone has to follow. Even the big and famous drivers get called into the office and get yelled at now and then.

    Who is his favorite driver? Never know when I might run into someone over here because I dont live but an hour from 3 major tracks.