The other shoe has flown

Discussion in 'General Parenting' started by crazymama30, Nov 13, 2008.

  1. crazymama30

    crazymama30 Active Member

    ok, weird title. There was a post earlier about how when a difficult child is doing really well, we get suspicious and wait for the other shoe to drop. It dropped. The little bugger took his patch off at school this morning. He was so out of control this afternoon at dismissal time the teacher had to have him wait in the hallway (he walks home so it isn't like he will miss the bus).

    When he walked in the door after school I knew something was up. He was loud, annoying, and started arguing about everything. Was on the verge of tears. I asked him if his patch was on. He said yeah. I said let me see? He said he just took it off. I said don't lie. He said it was barely on at school and he flushed it. He was just off the wall all evening. I left to go study, poor husband is stuck with him. Just as well, husband just ignores him. Not much else to do in this case.

    The positive? The higher dose of daytrana is helping, no lets just hope it keeps helping for awhile. I want those aliens back, or they can take his attitude back. I am flexible, I will take either. lol
  2. Marguerite

    Marguerite Active Member

    Did he say WHY he took the patch off? Because unless he can be compliant, then he will keep doing this because he can.

    So often our kids can't see any difference in themselves on/off medications, they just have to take other people's word for it.

    We went through this at times mostly with difficult child 1 and sometimes easy child 2/difficult child 2. When they both complained that THEy don't have a problem but when they're off their medications it's everybody else who is mean, horrible and unreasonable, I used plain logic (making sure they were medicated when we talked about it!) and said, "What are the odds that absolutely EVERYBODY is being mean, even people who haven't talked to other people about you and who therefore haven't been 'primed' to be mean? Think about it - most unlikely. So how about the possibility that you are unaware of just how belligerent and difficult you can be when off your medications, and that you are unwittingly antagonising the people around you, including people who don't know you? MUCH more likely.

    And regardless of why, if people are only horrible to you when you're off your medications - then TAKE YOUR medications!!

    I'd be finding out why he has a problem. If it's purely defiance against authority and being 'made' to wear the patch, then you need to find a way to motivate him to want the patch on. The child has to be motivated. You really need to listen to his reasons, and HE needs to be open and honest with you about his reasons.

    Reasons to listen to and try to help with - "I don't like how it makes me feel." "I don't like everyone saying I'm on drugs." "It itches, my skin goes red where the patch is."

    You need to help him find answers, but if the alternative is to take medications orally and he has been non-compliant, then point this out - "How can we give them to you orally, when you either forget to take them or you spit them out? It's worse than no medications at all, to only have them sometimes and unpredictably." Maybe if you engage him in finding a solution, then together you can sort out a better alternative.

  3. crazymama30

    crazymama30 Active Member

    Marg, we have talked about it. This time he said it was almost off, so he pulled it off the rest of the way. I told him to leave them on from now on. He does not realize he has a problem, but if I tell him your idea of does everybody else have a problem? He will say yes. He has no awareness (gaining a little) of his own behavior. He blames everyone else for his problems. He is making progress here too, but it is very little. It is much better when he is medicated. He then is reasonable, but it is very hard to try to reason with an unreasonable bouncing off the walls kid. He cannot concentrate on one thing more than a millisecond He is to start therapy next week, and maybe that will help with acceptance of a probem.

    Sometimes the patch does make his skin pink (not red) when it is removed. Goes away within 45minutes to an hour. He has a hard time tolerating the oral medications, as they dump so much medication in his system at one time that the side effects are just too much. With many time release medication they dump 50% of the medication right away (or other amount) and the other 50% 4-6 hrs later. That is just too much for him. The patch releases in a more controlled manner, and we don't get the side effects, the rebound, and the appetite loss is not as severe. We really have to watch that difficult child eats enough, as he is pretty small.

    I would love it if difficult child would be open about his feelings, I would love it if he would be honest period. Again, baby steps. He did admit to me he took the patch off and why. I think some of the why is that it makes him feel different to have to wear the patch, and I think some of it may have been that it was falling off, does happen, but it did stay on in the bathtub yesterday. On the other had he does not want to take pills. He takes so many (supplements) already that he hates them.

    That is a statement I like.

    You know Marg, what is hardest is that when I need to talk to him about taking his patch off is when he took it off, but those are the times that it really would not do any good, as he is so off the wall.
  4. TerryJ2

    TerryJ2 Well-Known Member

    I know what you mean about being able to handle one of the other but not both.
    Frankly, I'd prefer the hyperactivity and can do with-o anger. Period.
    I hope he listens today about keeping the patch on. Sigh.
  5. Jena

    Jena New Member

    I'm sorry to hear that he pulled the patch off, and than the behavior got rough. I agree with Marg in regards to finding out why he pulled it. I know it can also be difficult when they are not verbal with their emotions, we just see the "meltdowns" and have to play with the puzzle to figure them out.

    I was wondering is he in any type of therapy? I had my difficult child in for years, yet wasn't the right therapist. Now we found someone with whom is certainly rough around the edges with me yet so far is allowing difficult child to really spill her stuff. Which helps them.

    My difficult child often struggles with "why do I need medications", "why am I not normal" etc. she hates being "different". I am hoping that this will be an issue tackled in therapy.

    I wish you luck.
  6. trinityroyal

    trinityroyal Well-Known Member

    CM30, is it possible to put the patch on somewhere that difficult child can't reach it?
    Between the shoulder blades, for example?

    (I don't know a lot about the Daytrana patch (or medications patches in general), so if there are requirements about where you're supposed to put it...never mind...)
  7. crazymama30

    crazymama30 Active Member

    I think that the patch is supposed to be on the hip area, but I remember smallworld(I think) posting that they put the patch inbetween her son's shoulderblades. I am not sure about doing that, as I am afraid that then difficult child would fixate on it and it would come off all the time as he would do anything in his power to get it off. He keeps the patch on most of the time, and I would rather have the benefit of his medicated self most of the time, than with oral medications when all I see is the before and after, neither of which is any good. We may talk to psychiatrist about that.
  8. Marguerite

    Marguerite Active Member

    I do hear you about trying to talk to him when unmedicated - I totally agree, it is a pointless time. difficult child 1 when unmedicated is belligerent, aggressive, scary in fact. And totally unreasonable. He HAS learned that what we see is not what he sees, in terms of his moods. There have also been too many times when I have stopped talking to him mid-sentence and said, "You haven't had your medications yet, have you?" and been right. So he has learned - I must be noticing SOMETHING. When he was in high school (your junior high) he did try to "do without" his medications and would not take them and lie about it. He would also have caffeine in various forms (because he wanted to fit in and be like all the other kids). He finally had to accept that life was miserable when he was drinking cola/eating guarana bars/skipping medications and JUST MAYBE it would be easier to cope with life, if he tried it my way. There were times, especially on weekends when it mattered less, when I let him do it his way and bought him some cola and let him drink it.

    We didn't have a video recording of him but believe me, I did consider it! It would have been part of a scientific experiment with him. With hindsight, I really wish we had set up video cameras. Many, many times I wish we had it.

    Being logical and discussing all this WHEN HE IS MEDICATED is a good start.
    What we did with difficult child 1 - we set an appointment with him to discuss things, just as if we had an appointment with his psychiatrist. We chose a time on the weekend when he was medicated but also not in a rush to go anywhere and we gave him advance notice so if he DID say, "This had better not take long, I have to go over to see Johnny," we could remind him that we DID have an appointment which had to take priority.
    We also kept it short - knowing he has a short attention span. We also took obvious notes, minuting our meeting. A mind map is a good way to do this.
    And we listened to his concerns/complaints and also made it clear we were taking them seriously (even if we felt they were rubbish) and we took pains to ensure ALL concerns were not only discussed, but were explored.

    Us: We are concerned that you either haven't been taking your medications properly, or something is interfering with your absorption of medications. Or the dosage is too low. Have you noticed anything? Have you been properly compliant?

    difficult child 1: (getting VERY defensive) I take my medications in the morning like I'm supposed to. I NEVER forget! And I NEVER drink cola. I know better than to eat those energy bars. Why do you think there is a problem?

    Us: (staying calm) What we see, and what we're told, is what we have seen in the past when we know your medications aren't on board for whatever reason. So if you are fully compliant, then maybe we need to have your dose increased. But we must be SURE that all your current dose is getting on board, before we take this step, that's why we must ask you these questions.

    difficult child 1: (now realising that we could be making him take even more, perhaps not a good idea if he isn't being truthful) Well, there have been a few days when I forgot. And Brett offered me some of his cola the last few days, I didn't want to offend him...

    US: OK, so maybe that had an effect. So what do you think we need to do? What do YOU want?

    difficult child 1: I really hate having to take medications. I hate being different! I want to be normal! I hate it when kids call me a freak, or a druggie. I hate it when the teacher asks me in front of everybody if I've taken my medications.

    Us: That's understandable. We all want to fit in. Why do you hate taking pills? Is it because you're taking medications in general, or is there something else?

    (at this point he could say that he hates how it makes him feel - there could be a reaction you may not have been aware of. Or he could simply say he hates the IDEA of having to take medications all the time).
    We've given him the example of a person with diabetes, or epilepsy. As long as they take their medications as directed, they can be symptom-free. But missing their medications can be really dangerous for them.

    Another possible direction things could take -

    difficult child 1: I really don't think energy bars make a darn difference. I don't think cola does, either. Maybe I don't need such a high dose after all. I just want to find out if this is true...

    Us: That is actually very sensible, it's a good idea to find out. However, you shouldn't experiment on yourself without having an independent observer. In the past we used to take you off your medications (with the doctor's approval) without telling the teachers, to see if they noticed. What you need is something similarly controlled, where someone else can report honestly. How should we do this?

    difficult child 1:We could ask the teachers again...

    Us: No, not in high school. You don't have the same teacher all day every day, so you don't have enough observation from the same person over a period of time. Too many teachers, too little time, too many variables.

    So after some discussion to and fro, we work out a compromise - we will observe difficult child 1 ourselves, maybe using video cameras to record what we see so difficult child 1 can view the footage himself later on while medicated. At the same time we will make our own recordings in a diary, so we can show it to him also. And our part of it - we will do this at home on a weekend, but we will buy him cola, we will buy him the guarana energy bars and we will also hold back his medications - over three different weekends. We will do it as a scientific experiment and he has an important part in writing up and conducting the experiment. It is HIS research as much as ours. We then put the data together and show it to the psychiatrist at the next appointment.

    The important thing - keep this discussion short, maybe break it up into successive sessions if you need to. Keep difficult child fully in the loop, give him some control of the process as well as ownership of it. Work as a team to help everybody understand as much as possible.


    Making an appointment to do this is important. An agenda can also help - he will feel important and he WON'T feel ambushed, if he knows ahead what is to be discussed. Take minutes, keep it all impartial as if you are having a business meeting. Any shouting - make sure it's only difficult child and ignore the emotion and just listen to the words.

    We did something like this when we had to put difficult child 3 on a very restricted 'elimination diet" - we HAD to have difficult child 3 on board which meant he had to understand why as well as how, and to also approve it. He hated it, but he was VERY cooperative and motivated because he realised that the better he cooperated, the sooner he could go back onto a normal diet once we all had the data we needed.

    Your difficult child is very smart, which makes it even more likely that he will value this process and feel more in control and therefore more cooperative.

    Good luck!

  9. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm sorry the other shoe dropped. When my difficult child used to wear the Clonidine patch he would always pull it off. It drove him crazy-the itching or just the uncomfortableness of it. There was no where we could put it where he couldn't get it off. Even by the shoulder blades he would just rub his back against the wall til he could get it off.

    Even though the patch would have more evenly spread out difficult child's medications we ended up switching to the pill version of Clonidine. Do they offer that in the medication he is taking?
  10. crazymama30

    crazymama30 Active Member

    Marg, what you just outlined is similiar to a conversation I am planning to have. I just have to figure out when. I also wanted to wait untill after the IEP meeting on Monday, as I am not sure if the medications are working as well at school as they are at home, and I should get lots of info there.

    wiped out, there is medication with the same ingredient available orally, but my concern is that by the time he gets home from school it will be almost out of his system and we won't get any of the good effect of the medication at home.
  11. luvmyottb

    luvmyottb Guest

    My difficult child does the Daytrana patch also. She went through a period of pulling it off. It has been the best alternative for her after being on Strattera, Concerta, Vyvanse and Adderall.

    She has earned the nickname "Ralphie" around the house because the other oral medications would cause such stomach upset, but the patch does not. I would get calls from school 3 to 4 times a week about the vomit queen.

    She is keeping it on for now. But we did have to sit down and talk with her about not pulling it off more than a couple of times when she was medicated. She has just recently begun to understand she has a lot more energy than most everyone in her classroom and is beginning to see why she needs it. She turned 11 in September and is becoming a little more emotionally mature. Granted, it is very little, but a hint. She is repeating 4th grade this year and emotionally is still most comfortable with kids younger than her. Her biggest complaint with the patch is the itching. At night, sometimes I will dab some diaper rash creme on her inflamed area and it will calm right down.

    Perhaps if he gets some small reward for keeping his patch on all day would help?? I have to see her take the patch off so I know it has been on all day. We roled played with how other kids see her when she is patchless to drive the point home. She doesn't want to be seen as the super excitable wild child which she is, but impulse control is not her best friend so patch stays on. She is still wild child with the patch, but it helps.

    I could not have this conversation last year with her, but now it is sinking in. You know, tomorrow my difficult child could be ripping it off again. Sigh..hope you find a solution to your patch issues.
  12. svengandhi

    svengandhi Well-Known Member

    My mother in law's neighbor, an adult, was medication compliant because she would take the pills for awhile and then decide she was OK and stop. Several years ago, her doctors put her on a time released injection. She gets it once a month. She is supposed to go to the clinic but if she doesn't show up, a visiting nurse goes to her house to administer it. She only failed to show once and that was because a snow storm made it difficult for her to get there.

    Maybe a once monthly injection might work for your son? This lady is schizophrenic but I have heard that they might have shots now for other disorders.