Tuesday, November 30, 2010

Monsters Everywhere


“There are monsters everywhere!”

These are the words that came from my son’s mouth last night as he appeared frightened beyond my own understanding. He quickly fell to the floor and covered his eyes to block out the scary world he saw around him. This all started after he came to me feeling so sad he was sobbing because he thought I didn’t love him anymore.

Sometimes, he wanted to get away from me, other times he begged for me to hold him. At one point, he began trying to fight back. But this wasn’t like a rage. His movements were lazy, lacking the fire we usually see. He was weak and it was easy to hold him down.

Following an episode of scary screams he began to sudden down. When I asked him what had happened, his demeanor changed as he responded with a half smile “I don’t know”. Then he started to laugh. When I asked him if something was funny, he said “I’m surprised how quickly that went by”. He laughs again and says, “I don’t know, I don’t even remember what that was.” When I explained that he looked at me and screamed, he said “Yeah, I don’t know why, it just happens.” When I asked what it is that he sees, he responds, “Monsters.” Then his whimpering begins again as he looks frightened and tries to cover his eyes as he pulls himself into the fetal position.

Then his mood shifts to sad and he begins to cry.

“I don’t know who I am anymore, I feel like you and Daddy died and I’m all alone.”

After he said this he would begin to cry, that is, until he saw another monster. Then I would hear his piercing scream and watch him fretfully cover his head and curl up his body.

“I feel too dizzy...”

This is what he would say every time he would try to stand up. The dizziness kept him on the ground for at least 1 1/2 hours. The dizziness became so overwhelming that he actually threw up.

Then as he started to relax, while lying on the floor, he said that he was seeing monsters. When I asked where they were. He said that there was one under the bed that he could see now. When I asked what it looked like, he said, “A white bunny”. He said that it had a pink scarf around it’s neck. When I asked if it was a nice bunny or a scary bunny, he said “scary”. When I asked if it was a cartoon or a fluffy real bunny, he said, “fluffy”. He said that the bunny was growling at him while holding a knife in one hand and it’s cut off ears, covered in blood, in the other.

Being concerned that the meds were making him sick, we had our neighbor who is a nurse come check out his heart rate to make sure it was regular. It was and we just let him relax until he fully recovered. Once he could stand, we gave him a bath. After that, he appeared like a new kid, smiling and joking with us as he ate dinner.

When I asked if he remembered what had happened, he said, “No, I only remember throwing up.”

I wish my concerns ended there, but this morning he called me into his room after his shower. I found him curled up in a towel crying. When I asked what was wrong, he said that he was having scary thoughts. He explained that he was thinking of the time when I accidently dropped a knife and the time when he grabbed a knife when he wanted to die (bad reaction to Seroquel). I then asked if he thought of hurting himself and he said, “Yes, stabbing a knife into my stomach.”

Within a few moments I was able to cheer him up and he was ready to go to school looking happy and excited about being the library helper today.

* * *

Right now,  I’m anxiously waiting to hear back from our doctors, I’ve left a ton of messages.

I’m sharing this with you because I’m desperate to find out what may be going wrong with my son. I wonder if his medications are causing all this, or if it’s his illness. His nurse has assured me that it’s not possible for the medications to make this reaction, but she’s not sure what is going on.

So for those who may have walked in these shoes, what can you share with me? What do you think is going on?

After this post, I’m going to continue my search for highly recommended doctors within our HMO, I know this may be a long process, but we need help and we need it now!


28 comments:

  1. It sounds like psychosis. Both J and GB have Bipolar I with psychotic features. If that is what it is, your DR can prescribe a fast acting atypical anti-psychotic to use when he gets caught in these episodes- it cuts them short in 15- 20 minutes. That said, it could also be a reaction to the medication. It is not common, but it does happen. I know how scary these episodes are. You need a dr who responds in a timely manner. {{{{Hugs}}}}

    Laurie

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  2. Is Risperdal the drug they use? Our nurse got back to us this afternoon and said that the doctor has recommended it. Though in our last appointment, she said that she would never put her own child on it.

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  3. Risperdal is very commonly used and effective. It was beyond irresponsible for the nurse to say she would not put her own child on it and for her to say that she knows medication is not contributing to what is happening.

    I'm so sorry for what you are going through. Please try to keep up your strength, and keep searching for a doctor who you can count on to be on your team.
    Betsy

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  4. Hello, Mama Bear. We haven't talked in awhile.

    Months ago, when you asked about psychosis on "Ask A Bipolar", I wrote to you about my history, and how it progressed. What he is going through certainly sounds like the same thing is happening.

    Above all else, you need to understand that he truly sees those monsters. They are as real as the palm of your hand or the sheet on your bed to him. He can hear them (if they talk), feel them, and see them in glaring detail. To him, they are real. Trying to talk him out of it, or comfort him with those words, most likely will not help.

    Think of it this way:

    A man with a knife is threatening to mug you. You can see him, hear him, and you are terrified. You scream, you try to run, and of course, you try to fight back. You are scared for your life; you think you're going to die; you can't believe this happening. You cry. You yell. You plead.

    And then, imagine somebody - somebody you know very well - sees this happening and stops. On their face, you see confusion. You beg for their help, point out the man with the knife, and yet they do nothing. He has his weapon to your throat, and they do nothing.

    Except, however, tell you there's no reason to be afraid and the man isn't real. They rub your arm, give you a hug; but assure you he isn't real.

    Though his do not in any way seem that violent, the same fear is there. You need to remember, no matter how frustrating and scary it is, that trying to talk him out of what he is literally seeing won't help. I know that can be hard, however, and there is no need to anger if you slip every now and then.

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  5. We use a fast acting form of Risperidal that dissolves under her tongue. Long term use of Risperidal requires regular blood tests, but as a PRN, it has been a blessing.

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  6. You are also right to notice that the violence caused by psychosis is extremely different than that of a rage. As the name tells, a rage is fueled by emotions of uncontrollable rage, irritation, anger, impatience, and such emotions (which I wrote about: http://www.askabipolar.com/dealing-with-rages/). Psychotic violence, however, is usually related to one of two things:

    1. Command hallucinations. This is when a hallucination is literally commanding the person to do something. My description of it was:

    "Then she began commanding me to hurt others, and when I am in these states, one might think I am psychopathic. My whole expression, tone of voice, and emotions go eerily flat. She’ll give the command. There have been times where I will look someone dead in the eye, and say in a mono-tone voice, “She wants me to strangle you.” In a desperate attempt to resist, I will begin biting myself, biting other things, pounding my fists against something, all with no expression or emotion (though a lot of fear, guilt and self-hate afterward). I could be telling she wanted me to slit your throat one minute, and the next be back from it. None of these outbursts were driven by rage, such as those from the mood disorder experience, just that command from someone who could hurt me. When the flat affective came on, I learned this was a sign she was more in control, and that I was more in her world than ours."

    Often times, there is a threat to the person's life if they don't follow through.

    2. Survival Instinct.
    This seems more like what is going on with your son, and is a lot easier for a healthier person to imagine.

    As I said earlier, these monsters, to him, are real, and they are very threatening. If they say they want to hurt him or not, it is implied. It is just known. The terror is beyond description. Tired, sick, and scared, you don't really have the energy to defeat them; but you try anyways. In that state, the fighting will be directed at anybody - loved one, monster, or not. It's not thought through. All that I knew was that something wanted to hurt me, and I would panic. Scream. Thrash. Flail my arms, even though I had no energy to do so. It was a certain desperate hopelessness: I felt so weak under their power. They were so much stronger.

    To put shortly, your son is essentially fighting for his life. There is no easy way to deal with this, as psychosis twists the very sense of reality. Sitting there with him him makes a big difference, if nothing else but to keep him safe. Some kids respond if you try to bring the hallucination into reality; as in, ask if you can fight the monsters too, or if you can cage/catch the monster. For those that respond to it, it helps give them back control.

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  7. I'm so sorry you're all going through this. I do think finding a doc that truly cares for your welfare and your son's welfare will help tremendously.

    My son is on Risperdal. Of course it's not what I want or any other parent wants for their child, but if that's what it takes for their benefit, that's what it takes. Don't listen to people like that nurse. They aren't you. They don't know what it's like to be you or your son (no one else does either).

    We found my son's new pdoc through the CABF professional resources guide. We LOVE him and I think he will truly be a help for us.

    Hugs to you!

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  8. That definitely sounds like psychosis and major rapid cycling. You need help and you need it fast! Especially with the suicidal thinking and plans on how to carry it out. As hard as it is, you may need to consider an inpatient stay to stabilize him. In the meantime, keep a 24/7 line of sight on him if at all possible. I am sooooo sorry! Will be praying for you tonight.

    Risperdal has been a really good atypical for my daughter. It has caused weight gain, but has made a big difference in her. Also something to consider is a mood stabilizer to stop the cycling if he is not already on one? If he is on one, you may need to consider finding a different one. Lamictal worked well for us for quite a while. Lithium is also good as it has been shown to be brain protective and help protect against suicidal thinking.

    Keep us posted!

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  9. I have heard of mood stabilizers causing psychosis but I think it's kind of rare. More likely the Trileptal isn't strong enough to keep the psychosis away and you need an AP. Try the Risperdal - it may be a life saver for him. I have very mixed feelings about Seroquel but it really helps my son when he needs it.

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  10. Thanks for your feedback, it's a lot to take in.

    For kids that are unstable like this, do they go from psychosis to acting normal? We've seen this type of behavior 3xs in the past 2 weeks. I don't know if it will get worse and he'll stay in a psychotic state and need to be admitted or if it will be on and off like it is.

    If he's suicidal, will he show signs of it prior? I told him to tell me any bad thoughts he may be having and keep checking with him to make sure they haven't returned.

    Should he be going to school? He seems fine most of the day, he has only shown this type of behavior at the end of the day.

    Thank you everyone for your wisdom, I really need all the input I can get since I can't get an appointment to discuss it with my doctor. I was told to research the drug and talk it over with my husband and let them know if we wanted it.

    I feel overwhelmed.

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  11. I have Bipolar Type 1 and I go through psychosis like your son does. It is an unfortunate part to being bipolar. You just have to maintain the routine and let him go to school. I will see things at home but never when I am at work and my mind is preoccupied with other things. I started to watch movies at night to keep my mind busy. Otherwise I would lie in bed watching the shadows. I take medication and it minimizes the problem. I do not hear things anymore.

    Anyhow, I don't know if what I said helps at all. I just want you to know what is happening is not uncommon with bipolar and as he gets older he will be able to cope with what he sees and hears better. Maybe an anti anxiety med in the evening will help calm his brain down. I am so sorry he has to go through this. (hugs to you both)

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  12. He IS showing signs of being suicidal... he told you he is thinking about stabbing himself in the stomach with a knife and keeps thinking about knives. That is the same type of behavior that landed my daughter in the phosp this last time. She would be fine one minute and then I would walk into the kitchen and find her with a butter knife held to her thumb. The fact that it was a butter knife and it was to her thumb was lack of knowledge and know-how, not intent to follow through. So, yes, they can be psychotic one minute and fine the next.

    It seems like these episodes are lasting longer each time? If not captured, it will get worse. At least that is what we have found. The longer it goes on without stopping the cycling, the harder it is to bring it under control.

    As far as school goes, you definitely need to make them aware of what you are seeing at home. Hopefully you can work out a good plan with them so that if one of these episodes occurs at school, they will know how to keep him safe and keep those around him safe as well. It could be that all the stimulation from school is triggering some of the meltdowns? Again, that is something that we are learning the hard way... stimulation when they are cycling can make things so much worse. Even good things that they enjoy can be a system overload to them. Maybe the school would work with you and let you have him there a partial day for a while until this has passed?

    You are such a good mom!!! I am going to tell you something that our pdoc told us last spring just prior to having to hospitalize our daughter for the first time... because you are such a good mom and you have developed a high tolerance for dealing with these behaviors. We are the type of people who say that if things keep getting worse then we will have to put her in the hospital. The doctor really had to drill it into our head, that it is not whether the situation gets worse, but instead it is if the situation stays the same. It is not whether it continues to escalate until they are psychotic all the time or making actual suicide attempts. Rather it is if you don't see improvement, you need to seek help. Now having said all that, our phosp experience left a lot to be desired. It was beyond frustrating to turn her over to someone else's care and we often felt that we did a better job at home of managing her symptoms. But looking back, it really did help her and we are glad that we did it. Feel free to email me if you want more detailed info on all of that...

    Hugs to you today!!!

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  13. Wow. I am stunned by all you are going through lately and sending lots of hugs your way. I can't imagine living with these intense hallucinations on a regular basis.

    That said, we are having good luck with risperdal and haven't seen any side effects, except for an increase in appetite and a bit of a weight gain. I was told it doesn't build up in your system, so if you decide you don't like it, you won't have to wean off it like other drugs.

    I can't believe your doctor/nurse would bash the use of a drug they are recommending, and one that seems to have great success with bipolar. That's just irresponsible. (I believe I've mentioned how much I hate Kaiser before, right?) UGH.

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  14. HUGS HUGS HUGS...Anything I can do, just call me anytime!

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  15. I know that the obtacles of finding a new doctor when dealing with an hmo can be overwhelming. But is seems clear that your son needs a thorough assessement that your doc is not willing or able to do. His worsening symptoms could be the progression of his disorder. Or it could be a reaction to his recent med changes. Or something else. But further treatment will not be effective without this piece. If your doctor is not giving you an immediate emergency appointment, he is not adequately assessing your son's situation.

    I'm thinking of you...
    Betsy

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  16. I just came across your blog now as I was once again researching information on what my son may have. We have had issues since...well since birth really. However, at the age of 4 we were told we probably wanted to seek professional help. My son is my only child and I am a single mother. I knew we had issues but really needed someone to tell me it was more than just stages to really know what to do. My son attended a therapeutic day program for a year and a half. The normal stay is three to sixth months. We left to move back west so I could get some help with him as it all just became too overwhelming. He of course is still in therapy and still sees a pyschiatrist but is in public school. We tried many medications even though no one has ever been able to tell us what it was. But when a 4 1/2 year old child comes to you and tells you they just want help and they don't like who they are, you just want something to work. My son had hallucinations off of Adderall. He woke up in the night and was screaming that there were spiders and bugs all over his room. Then he went and laid on the dogs bed and said that the ceiling was falling down. When I called the doctor, they told me it was a very very rare side effect and we should stay away from stimulants for him. He has been on Abilify for a year now (still with no actual diagnosis) and it was working very well for a long time. Recently we've been having problems again with the mood swings and anger issues directed at certain kids at school. I write all of this to tell you that hallucinations are sometimes a side effect of medication and sometimes when they are extremely rare, are not reported on the listing from the pharmacy. You said that you've seen this behavior which appears to be new in the last couple of weeks. I haven't had a chance to read too many of your entries (but I will) but have you recently switched meds for him? Also, most of these medications do have suicidal tendencies as a side effect and if he hasn't displayed that behavior previously, I am curious if this too is a side effect. I can soooo sympathize with not being able to get the attention that you need from the doctor. Our first pychiatrist probably said it best for me in how it is dealing with doctors for children with these types of problems. He said that the science and research on these type of disorders is very young compared to other diseases and in many cases, we just don't know what it looks like in children. I get so frustrated medicating my son without a true diagnosis and often hope my son grows up to invent some sort of scanning machine that will tell you instantly what you are dealing with. Hang in there and I have to tell you, you aren't alone. I know I often feel like I am, especially when family and friends really don't quite get what I deal with day to day. Hang in there and you will get there.
    Take care and you are in my thoughts.
    Carly

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  17. Carly,
    Thanks for all your feedback. You bring some good insight! I have also wondered if it was his medication Trileptal causing it, though I've been told twice that it isn't. But I was also wondering if this is his illness getting worse. The reason I wonder is that his hallucinations occurred during a period of rapid cycling. He was sad, seeing monsters, laughing, sad again, more monsters etc. With all the changes he went through in a single hour, it seems like it may have been rapid cycling brought on by illness, not medication. That's just my uneducated guess. What do you all think?

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  18. In the Pink-
    Thanks for your feedback from your own experience, it helps me a lot! It was interesting to read that for you, psychosis happens at home and not in public.

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  19. Thank you so much everyone for your thoughtful feedback, it has been incredible the response that I've gotten from this community. There has been so much wisdom shared, many I have read more than once. Hugs to you all!!!!

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  20. By the way Eri- I got your emails, but didn't see it posted on this feedback section, do you want me to copy and paste it here so others can read your feedback, or shall I keep it private? I just wasn't sure if there was a technical error.

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  21. Hey there Mama Bear. I know I've been told repeatedly that as my son gets older, other symptoms of the disorder will definitely appear. Evidently they grow in to their disorders as their bodies grow. It's so difficult trying to figure out what you are seeing, whether it be the disorder or medication. I can tell you that I have seen through reasearch that hallucinations are a possibility on Trileptal, although, again very rare. The link I found is http://epilepsy.emedtv.com/trileptal/trileptal-side-effects.html
    A note as well on there is nervousness, confusion and memory loss. Hard to say though since the cycling is definitely a symptom of bipolar disorder as well.
    Take care and hang in there. Kids like ours are given to us for a reason.
    Carly

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  22. Just another quick note...I know the site is for epilepsy which evidently Tripetal is also used to treat, which I have a feeling you already know.
    Carly

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  23. Hey Carly,
    Thanks for the link. Reading this just makes me so mad at his psychiatrist. She has told me twice that there is no way that hallucinations can be caused by Trileptal, but this link you gave me discusses low sodium levels in the blood (caused by Trileptal) can cause hallucinations, muscle weakness, confusion, vomiting. All which he had during his rapid cycling. So could it be a possible that his sodium is too low. Couldn't that be dangerous, that it would require blood work?
    Grrrr...

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  24. Also, I wonder that if it was low sodium levels in the blood, wouldn't he continue to be sick, instead of recovering and after a bath acting normal like my son did? Maybe that is why they ruled out this possibility. I need to ask about this.

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  25. Definitely knowing the full possible side effects that have occurred is very important and I am often bothered that we don't get all of that information from the doctor as they know they are very rare. I guess their point would be if they told us everything, we would be in their office for hours. But even the pharmacy doesn't give us everything on their print out. It is possible that it is linked to the medication, especially if the symptoms weren't their prior to the medication. I am definitely not a doctor though. Not sure how long your son has been on Trileptal but it sounds like if they are saying the hallucinations are due to the disorder, the medication isn't working at this point. Trileptal is one of those meds that takes a little time to work fully though, so if it is newly added, it could just be a matter of letting the meds take effect. How often do you get blood work done for your son? I know with Abilify for my son, we get the blood work done every 6 months due to some possible issues with long term use (ugh, hate that). You know your son best. Always go with your instincts and if the doctors aren't answering your questions to your satisfaction, keep on them. It's their resposibility to not only treat our children but educate us to what we should be watching for. I think a lot of doctors forget that. Hopefully the last couple of days have been better for you. I know it is so troubling each day with not knowing quite what you'll see today. Take care.
    Carly

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  26. Hi Carly,
    Our son gets the blood work around every 6 months too. He started Trileptal back in March, so it's been about 8 months, but we only recently hit his max does. You're right about trusting our instincts!

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  27. sorry to say but his hallucinations and mood swings are side affects from meds mama bear ,some people are just too sensitive to meds even antibiotics,especially kids at that age.

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  28. Then why did he get better when we increased his medications. We also had this result when he heard voices. Once we increased the medication, the voices went away. If it was the medication, he would get worse not better if the medication was increased.

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