buddy

New Member
Pass started out good. went to ranch and he rode really well. Got in car to go to my sister's and he fell sound asleep. so strange. When we got there she couldn't answer, something wrong with her phone. IT is a new place and no way to get to her and I tried email and text too...nothing. He started escalating. so went to nearby sister's . she had pumpkins and so he picked one out. (she was not home yet). HE kept asking the whole time about trick/treating tomorrow. Dr already told me no if not a therapeutic pass so I kept saying tha twe had to talk to dr tomorrow. HE always gets worked up for parties or holidays etc. I cant make them behavior contingent because he wont go anywhere. Just has to be OK, not terrible. so I was sitting and he asked again, gave same calm answer including that I woudl try my best and pow, punched me in the face. both of our eyes got huge, he jumped on my lap and started crying. He rubbed my cheek and said sorry a million times. we were both crying. I am not hurt it was not a super hard punch but just shocking. I said we had to go back now and he got his pumpkin and got in the car. My sister drove up and jumped in with us to make sure we got there ok. When we arrived he asked to talk to nurse first and he told her everything...super honest. said he just couldn't take it anymore....he was too nervous about the I dont Know's and just got soo upset. That is exactly what happened.
He had already told me (finally) he wanted to come home. I know he is sad and stressed. I can see he is really suffering. No matter what though, no trick/treating. I doubt I will even visit since I dont want to set him up for more upset. I know he will have a terrible day tomorrow because even under good circumstances he has issues on holidays.

Just really so sad, not my boy at all. Yes he hits but this is soooo different.
 

DammitJanet

Well-Known Member
Dee....my poor little Buddy. Im so sorry. I hope you are okay. I feel so guilty over this because I told you lamictal was a good medication for me. I wish I had told you it was horrible and then maybe you wouldnt have tried it then maybe all this wouldnt be happening.
 

keista

New Member
:sorrysmiley: For both of you. The good news is that you BOTH realize this was something really involuntary. The bad news is that this just absolutely hoovers to have to deal with. :sigh:
 

keista

New Member
Dee....my poor little Buddy. Im so sorry. I hope you are okay. I feel so guilty over this because I told you lamictal was a good medication for me. I wish I had told you it was horrible and then maybe you wouldnt have tried it then maybe all this wouldnt be happening.
Janet, you know better than that! ((((HUGS)))) anyway.
 

buddy

New Member
Janet, you know better than that! ((((HUGS)))) anyway.
Silly Janet.... YES! I hold you completely responsible...haha! I know everyone is different. Was just looking for experiences and hoping.

Called hospital. he is having an up and down evening....I am gonna play with my nieces and nephew....ta for now....Dee
 
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Liahona

Guest
Do they have all his medications back to normal now? Are they still getting into/out of his system? Sorry I don't have a head for medications. Can't remember what does what and who is on what. Just a stress reaction of mine. Info just doesn't stay in. Hope they get everything stable and get him stable soon. This has got to be hard on your relationship. Even if he doesn't mean it him hitting you hurts. I wish he was a toddler and you could wrap him up and rock him. That tends to help heal mama hearts.
 
aw. I'm sorry to hear this buddy. :( It sounds like you handled this really well and kept control of the situation. Our trick or treating is tonight and my son is really upset about missing it too. That doesn't mean they completely miss out tho. Today when we visited they were coloring pumpkins and will have a movie/popcorn night. Tomorrow their having their own little version of trick or treating and bobbing for apples and watching the eddie murphy movie haunted mansion. They're even allowing me to bring in difficult child's favorite pumpkin cupcakes for everyone. I'm sure there doing similar activities where your son is too. Does your son love trick or treating because of all the candy? or because of the costumes? either one you could recreate somewhat at the hospital during visits. For example the staff said it would be a good idea if I brought part of my sons candy bag for them to distribute to him when he earns it. So sorry this is so hard for the both of you.
 

DammitJanet

Well-Known Member
Dee...I just remembered you said he wanted to be a NASCAR driver for Halloween. I thought you would get a kick out of this. Keyana is my oldest granddaughter and she is my little race car buddy. She has watched racing since she was born with me. Last year she went as a Barbie Race Car driver. All pink. Cute as the dickens. I didnt get a picture though because it was too dark when she was out and I simply forgot. Made me so mad at myself...lol. I was trying to find a Danica Patrick one but we couldnt find one.

Last Mother's Day I took her and her older brother to the race at Darlington and she LOVED it! I dressed her all up in Kyle Busch gear because that is her favorite driver. I have some pics from that and I will send them to you if you think he would like to see them. Does he like Joey Lagano? I have a picture of her with Joey. I have some of her and her brother in front of a car that are really good and some of them in the stands when the cars are going around.
 

buddy

New Member
liahona, the in pt doctor says that lamicatl can hang on for a loooong time but he was not on a high dose so I am hoping this will eventually stop. They took the first blood levels for the lithium today. Not sure of the results yet. doctor is supposed to call tomorrow to say what to do. Yeah, I miss the days of putting the blanket around him like a "hotdog" and calming him with squeezes. I used to bounce him on a big exercise ball too. three years, every night till he went to sleep.
zoo keeper, yes I think they are doing similar. He just likes a party. never never wants to miss out. Hates the thought of his routine changing and this year for the first time ever kids in the neighborhood asked him to join them...he was so excited. He was begging me...look mom there are houses by the hospital, how about just a little bit over there??? He told his nurse today he cant take the i dont know thing anymore. that used to work beautifully but guess that is over. Problem is, I know what a for sure NO means so I am gonna have to do some thinking. NOt that I never say no...just these big obsessive issues can be so intense for him. especially when he asks for weeks ahead of time sometimes.

thanks guys...really strange being at my sisters. all my nieces and nephews are here, singing, teasing, being crude at times...normal kids stuff...kind of sweet
 

Hound dog

Nana's are Beautiful
Aww geez ((((hugs)))))

Holidays were hard with Travis. He got keyed up waaaaaaay beforehand. So I learned. I found creative outlets for his excitement. Holidays such as Easter were a bit tougher as there isn't a ton you can really do. Halloween......we'd make paper bag masks, I'd buy construction paper and they'd make the house decorations, I bought all the cartoon specials I could and set up movie nights with popcorn. That way it wasn't all about the T or T stuff. And it was fun too.

And no, holiday activities NEVER depended on behavior. Otherwise, Travis would never have been included in any holiday activities. Because to some extent he honestly could not control it when the excitement mounted and normal daily schedule got altered. And yeah, holidays were still rough. I also learned to watch for any and all triggers and to avoid them at all cost, when I couldn't avoid them.....I took it in stride. I never expected a single holiday to be absent of difficult child behavior, I knew it would be present in one form or another to one degree or another. I mentally prepared myself for every darn holiday.

Now that I made our holidays sound like torture.....lol........honestly, they weren't. Because of activities to defuse the excitement, we formed many family traditions that still stand today.......and we wound up getting much more out of the holidays in just being together than many other people I know, which also is still present today. We've found it to be helpful to defuse the holiday excitement of easy child kids as well as difficult child ones.

I want to ask how difficult child was before he started medications? Have they actually done him good in any real sense of the word? And yeah I know that different folks react differently ect. I'm not against medications. I'm just asking because I don't know his history that well yet. And I DO know that medications made Travis violent as all get out, when my son is normally the most docile kid in the world for the most part. And your difficult child and Travis are similar in so many ways. Travis also has a Traumatic Brain Injury (TBI), his is birth trauma as well as a stroke at 18. I decided to forget medications with him because it wasn't worth the off the wall violent behavior they triggered hoping to find something that helped. Travis did far better off medications than on them. There were still a ton of issues, of course given his dxes, but yeah. So we stuck to his carbatrol which was his seizure medication and dropped everything else.

I thought I'd ask now while he's in patient because if there is a chance that not just the lamictal that could be causing some of the over the top issues he's having, in hospital is the place to find that out by doing a medication wash. Or just weaning him off and seeing if his behavior really is worse without them. Know what I mean??

Like I said, not at all anti medication, just wondering if they're possibly having the same effect on him as they did Travis.

((hugs))
 

Steely

Active Member
Ohhhh..........your post made me cry. Wow. I am so sorry. SO sorry :( It is horrible to see your kid in this much pain. I know all too well.

If it helps - Matt did really, really well on Lithium. It takes awhile to titrate up though - a couple of weeks maybe? However Matt did excellent on this medication, and nothing was working before we started it.

HUGS.:sigh:
 
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Liahona

Guest
How about telling difficult child "I'm not ready to talk about that now. I need time to think. I can talk about it ... " Then tell him a time (6:30) or a place (when we get home and get inside the house) or an event (after dinner dishes). Somewhere or sometime you can be better equipped to handle the meltdown. You might use this also when the answer is yes as well so he doesn't figure out its a stalling tactic for a no answer.

Good luck.
 

buddy

New Member
liahona, I like that answer....I have used it a couple of times by accident but you brought it to the forefront so i am going to actually purposely try to word it like that. Thanks

Steely, it is great to know. so after it was up to a good blood level how long after that did you see it change behavior/mood or did it help as soon as it was at the right level for him? they took the first draw this morning so we will see.

Hounddog it is really validating to hear other families who get it .... I just dont think holidays are a time to punish them for not really having the skills to deal with that level of stress and change in routine so I do the same, just push thru and I use what works, prepping ahead for him etc.

As far as no medications? We have had several medication errors or times when insurance goofed and we had no medications for a day or two to kind of test the theory for each one...and I realize it is not the same as it really being out of their system...but even before the Concerta, (and we did try others before settling on concerta) there was not ONE minute of his cooperating in school. jsut running around in the back of the room. At home he was aggressive the first day he was home. In fact in the hotel the first night I had him we were swimming and he bit my shoulder. His fmom had told me she used to tell him to get a slipper and she would whack his hands when he pinched and scratched her. (nice huh?) The very first day on ritalin I got a call from ecse and I thought oh god...he threw another block at a kid and kid is in hospital...nope. difficult child sat in circle and listened to the story! Truly a different child and we could go for walks outside, he could try to ride a bike, he started to learn to talk, etc. Really beyond the improvement you see in adhd kids (I'm sure you know the difference, smile). the only neg. was it was not as easy for him to have fun..just didn't seem as happy. He was never really a silly fun kind of kid but it was a change. medication error days always confirm that he needs the medications because something serious always happens. this is true since he was five years old. days I forgot to give him medications... now we are SO routine bound that doesn't happen at home but school forgot second dose once and evening with an Integrated Listening Systems (ILS) worker...I get a call that the teen center is kicking him out and they want to call police...then school nurse calls and says she jsut got a flash that she forgot his medications (we had dr. appointment and screwed up the schedule). So, I definately think he could be a notch down if off the concerta...but I dont think the aggression would go away. He was on clonidine for aggression long before the Concerta started. He was on phenobarbitol then several others...tegretol, depakote, keppra for seizures. after he didn't have seizures for several years we stopped seizure medications. but then the "fake" feelings started. they thought it was anxiety...so tried different medications...put him on prozac. I do think that one can stop. It was not from anxiety and I dont think prozac helped with the anxiety at all. But he changed how he related to me...he became cuddly and smiled more and it was just different. So we kept it. Lyrica was given to help the seizures that he "fake" ended up being.

Problem now he is at such high doses of Concerta and Clonidine (though how much is metabolized is a big question so probably not as dangerous as it seems on paper, that's why those docs who know have just been careful to monitor him...heart, blood presure etc. ) and he is growing....so what can do what those things do but not be dangerous. Last year when medications started nto seeming as effective, we bumped both doses (not at the same time, one then the other) and all was good int eh world. This is all an effort because we are at a limit on those medications.

so the test they did yesterday was to see how much of an effect teh Concerta has and if is causes tics at all. the first night he was there he had a meltdown and was in teh time out room nothing since, no extra prn medications....one week later they hold the concerta PLUS screwed up the dose so he was only on 1/3 the dose...he was in the time out room 6 or 7 times...twice locked. He has big scratches on his forehead that he did to himself. head banging and kicking etc...stuff he doesn't do normally. so wow...I am thinking not a good idea to stop ever again??? He would not survive it. We did lower the dose before all of this (concerta in the pm) and the plan was to reduce slowly to see if it is activating him now that he gets older. His regular psychiatrist says that as kids get older what was calming becomes stimulating. My nephew in fact just had to go down to 36 mg concerta after being in the 70's. he is doing great now. it is interesting.

I remember when difficult child was young that neuro. said he may be seizure free for a while but it is unlikely when puberty hits that he will remain so. I am afraid that is a big part of this picture.

so much to sort thru. I think they need to do a walking eeg for a couple of days on the unit. I am going to ask. he has a 1:1 on the unit anyway...(crazy huh?) so they could push the button and record info on behaviors.

I dont even know what I just wrote so sorry if it makes no sense. It stunk to have him hit me like that. I was glad he was immediately scared and sorry. he tried to call me but they couldn't hear my voice and he never called back.

I was sitting here and the whole thing finally sunk in...I can't believe I blocked out what happened when we got up to get our stuff. He ran out on the balcony (split level home with a deck above the garage) and kept saying I am going to hurt myself and kill myself just jumping off this deck. I just said to get his stuff so we could go. some of the words were clearly new psychiatric words that he used and true he maybe had the feelings before and now just had words but it seemed more like he was saying he was really really upset and using his new words to let me know. I sure as heck hope the lithium isn't making him more depressed. that will s**k.
 

Steely

Active Member
Steely, it is great to know. so after it was up to a good blood level how long after that did you see it change behavior/mood or did it help as soon as it was at the right level for him? they took the first draw this morning so we will see.
It was about 2 weeks before I could see a difference, and maybe another 6 weeks before we got to the right blood level.
 
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Liahona

Guest
I block out really big things all the time. Can't ever tell someone everything I'm going through. I'll just forget something. And its big things I forget to tell them. I can't focus on everything because then i'll freeze up and not be able to get anything done.

difficult child 1 talks like that as well. If I took him to phos every time he made a suicide threat we'd be living there. If I give attention to his threats it just makes it worse. I don't know with your difficult child if ignoring it is the answer though. He seems to get stuck on ideas more than my difficult children do.
 

buddy

New Member
It was about 2 weeks before I could see a difference, and maybe another 6 weeks before we got to the right blood level.

did you do that at home or psychiatric hospital. I am afraid they are not going to let him out of the hospital.
 
S

Signorina

Guest
Hi Buddy - I will be thinking of you and your son. I know it must have been difficult to see your time together end so badly. I admire your spirit - your love for your son shines thru every post. I hope they find a way to re-balance his medications successfully soon. {{hugs}}
 

buddy

New Member
oh thank you kindly....yes signorina, i surely do love him with all of my heart. I miss my boy.

Hi Buddy - I will be thinking of you and your son. I know it must have been difficult to see your time together end so badly. I admire your spirit - your love for your son shines thru every post. I hope they find a way to re-balance his medications successfully soon. {{hugs}}
 
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