In over my head 12 y.o. son with ADHD, Bipolar, CD and ICD/Intermittent Explosive Disorder (IED)

Discussion in 'General Parenting' started by Atmylimit, Feb 13, 2012.

  1. Atmylimit

    Atmylimit New Member

    This is my first time posting. I don't even know how I got here. I know most people who come to this site are feeling hopeless, I hope to hear from someone who has had any kind of success with their child. I am a stay at home mom with 4 children. My oldest is out of control. He has been in therapy with and without medication for 7 years now and so far nothing is working! I am so fed up. This morning I got a call from a bus aide and I could hear him in the background making these whooping noises and cussing the ladies out. He was standing on the seats, jumping from one seat to the next and just pouring filthy words from his mouth. He is in a behavioral school already and they just locked him in the time out room until he calmed down but this is at least 3 times a week he does it. We have had to begin again with medications since he has begun displaying tics and we can't figure out what it's from. He is now on Clonadine, Lexapro and Lamictal. We have tried almost everything there is that is "safe" for a child and nothing is working. Because of his bus antics this morning he is left with a mattress on the floor, clothes, deoderent, books, chapstick and tissues in his room. Short hospitalizations do nothing. He gives them what they want and then he is out a week later. He was released in November after a 9 week stent at another hospital but he is worse now that before he went in. I just don't know what else to do. My other children, daughters 10 and 4 and son 6 are suffering so much daily because of the attention he requires and appointments that I feel like a bad mom for not having enough hours in the day to help them all. My husband is in the military and just can't be here to help all the time. Any suggestions? Please....
  2. buddy

    buddy New Member

    Hello AML, I am so sorry you are going through this.

    He sounds behaviorally much like my son can get....also blurting out swear words etc. It sounds like he is in a pretty punitive kind of setting. To have that many lock ups... that says to me there is a problem with his interventions, do you feel that? I know they can argue what else can we do when he gets like that?? Well, it is their job to figure out something better... a positive behavioral plan. If they can't figure it out, you can ask for an independent functional assessment with an expert..... from outside of the school, at their expense...

    Have you had a neuropsychologist evaluation done? an Occupational Therapist (OT) evaluation for sensory integration issues? Are you sure the tics are medication related or could these behaviors be tics related to Tourette's... (including the swearing and jumping/running...!!!)

    Just throwing stuff out, not saying you haven't done enough or anything...most of us come here to have others who have been there and at the end of our ropes throw out ideas/brain storm...

    I totally get those days when you want to take every last thing away as a punishment. My son has no internet right now....

    It stops things temporarily, but I will be TOTALLY honest... it has NEVER, not one time...corrected his behaviors since they are neurologically driven and based on a lack of skills to do better....

    The only thing that has helped long term are therapies that focus on sensory integration, improved fine and gross motor development, improvement of social skills/communication, improvement of language processing, and avoiding triggers that we KNOW will make things worse (transitions, changes in schedules, too many noises to overload him, other kids making noises or saying words that he then says and does more frequently and louder and longer.....) It is a constant dance with him to keep things calm and I am in a struggle right now to find the right way to treat it. He will never go back to a place like he has been in the past where he was frequently locked in a room... it ended in a disastrous increase in behaviors. A year away from that and he was much much better...(he was with a teacher who was amazing at helping him to develop skills, they changed the program so she quit and the next year went back to yuck!)

    I can't even imagine having other kids to care for with my son....Can you apply to your county for PCA or behavioral support so they can take him out in the community and help him at home with behaviors...even three days at 4 hours each are amazing for me.

    Bless you and welcome to our group.

    (oh in case others dont mention it, lol, they will..... The Explosive Child by Ross Greene and What your Explosive Child is Trying to say to you by Doug Riley and Lost in School by Ross Greene are all great books for help with parenting our kids... My son was at one school that used these methods for his behavior plan and he did amazingly well... the psychiatric in charge had a baby and it all fell to pot the next year.. story of our lives!)
  3. TeDo

    TeDo Guest

    I am sorry you are going through all this. I am also a stay at home mom but I am also single....I know, you can relate. It IS really hard to make things fair with our kids but when you have a difficult child, it just cannot be done. I totally understand the frustration.

    I am going to simply tell you what has been my experience. difficult child 1 CANNOT take stimulants....they make him WORSE. We also found out (after 6 years of wrong diagnosES) that it wasn't just ADHD. Can I ask WHO diagnosed him? Does a psychiatrist manage the medications? Does your psychiatrist REALLY listen to you? Do you agree with every word the psychiatrist says?

    If I were you, I would find a neuropsychologist to do a THOROUGH evaluation as well as an Occupational Therapist (OT) and Speech Language Pathologist (SLP) to also do THOROUGH evaluations. Between all of those, you should get a very, very clear picture of what is really going on and you will be able to help him more.

    In the meantime, do what you can when you can. Take care of yourself. Make the most of the time you have with the other children...make it count. A lot of things are gong through my head about this right now but I don't want to overwhelm you ..... and......I might be totally off base.

    HUGS to all 5 of you!!
  4. Atmylimit

    Atmylimit New Member

    Not sure what a neuropsychologist evaluation entails. He has been tested through his psychiatric office for things and we are heading back to the neurologist Wed. for some EEG test results but that's about it. He gets so physically violent that all they can do is get him to the timeout room and let him cool off. I don't think any of it really works though. It only takes a look or a comment to set his over the edge at any time of day or night. The reason we had the EEG done was because of the tics. I was researching Tourettes myself to see if it fit. We head to his psychiatrist tomorrow and it's worth mentioning. The tics have gotten a little better since taking him off the Seroquel and Adderall and putting him on the Clonadine but they have no gone away completley and he now can't focus or stay seated or deal with any minute conflict since he isn't on anything to stabilize him. Can you let me know what a neuro evaluation is so that I can ask about it tomorrow and what kind of setting it's to be done in? I want very much for him to succeed in life and on this track it just can't happen. Thank you so much for your response.
  5. Atmylimit

    Atmylimit New Member

    Not sure what difficult child or psychiatrist means new to all of this. He sees everyone from an Licensed Clinical Social Worker (LCSW), M.S., a psychiatrist with her master and a psychologist (Psy.D.). He has a case worker through the school too. He was diagnosed with his psychiatrist and psychologist and the testing they did on him. They are both in the same group so they communicate with each other. I actually agree with very little of what she says and so after a year of her trying different medications (most of which made him more aggressive and violent) I have stepped in and told her my absolute opinions on some of them. She wanted to put him on Xanax. I think that is absurd and told her no. I am a full grown woman and Xanax knocks me out. I want a happy child not a zombie. Maybe I should let her be the Dr. and keep quiet but I can't seem him being happy when he can't stay awake to function. Somehow he made all B's on his report card this last semester and if he goes back to zombie child I can't see him even passing.
  6. buddy

    buddy New Member

    You are doing all the right things... you can only do so much so please realize we are only adding ideas, take what fits...

    The difference between a psychiatric evaluation and a neuropsychologist evaluation is that a neuropsychologist has additional training in neurology that allows them to look at behaviors/moods and relate them to how our brains work. They can sort through developmental challenges versus mental health diagnosis etc... and help sort thru the bigger picture. In addition, adding Occupational Therapist (OT) which will look at sensory integration challenges, subtle motor planning and execution issues, and also looking at a speech/language evaluation to see about any problems with language development and use/social communication skills/and processing skills--sounds,language,etc. will help you to see if there are any unaddressed issues that a psychologist would never be able to do on their own..(sometimes they want to think they can, but they can't I have worked with many and they are sometimes taught to believe they are the ones who get it all...they are humans with limitations like all of us--many great ones--just I would never rely on one to work every angle).

    Clonidine has helped my son greatly but what made the difference was using a patch form (catapres, now generic but they are huge and break down skin so we request the name brand and his insurance approves it) ...they are changed weekly and so even first thing in the morning we have less issues. We have tabs for booster doses during the day.

    here are some sites for neuropsychologist, if they are resistant, do not ask, just say you want a referral (if your insurance needs one) prepared for a wait but a well worth it option!
  7. TeDo

    TeDo Guest

    difficult child is stands for gift from god said totally tongue in cheek. psychiatrist stands for psychiatrist. neuropsychologist is a neuropsychologist. Theylook at how the brain (the EEG will help) and his behavior are connected.
    Good for you. I made the mistake of putting MY doubts aside and letting the doctor be the doctor and difficult child 1 paid a dear price for it. LISTEN TO YOUR MOMMY GUT!!!
    If something is not working TELL her. I TOLD my psychiatrist we were stopping a medication because it was making difficult child 1 aggressive and the psychiatrist had never heard of that before and instead wanted to keep upping the dosage. I FINALLY spoke up and told him I wanted difficult child 1 OFF that medication.

    If the diagnosis is wrong or there is more going on, the wrong medications can do a lot of damage. Also, for difficult child 1, our SD was pushing (literally trying to force me) to put difficult child 1 into a behavioral school. I am sooooo glad I listened to my mommy gut because what you are describing (the time-out room) would have pushed difficult child 1 WAY farther over the edge than he already was and let me tell you he was at the edge to begin with. Being treated the wrong way can also do major damage to some of our kids....depending on the REAL issues.

    You really need to try to figure out WHY he's behaving this way. Along with the evaluations, there are some books you really should read and implement. The first one is The Explosive Child by Ross Greene. It was reading that book and inplementing those ideas (difficult child was 12) that showed me a VERY clear picture where many of the problems really came from. The other is What Your Explosive Child Is Trying To Tell You by Dr. Doug Riley. That will also show you some alternative ways to look at behavior. They might help you a lot and with the evaluations, you should KNOW which way to to speak.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I have not read all the responses, so forgive me if I repeat any of their suggestions or ideas. I'm so sorry that you are going through this with your child.

    Can you please give us a history on this child? How was he as an infant and toddler? Any early red flags or delays? Any odd behavior? Has he gone through any early disruptions in his life? Any divorce or being passed from caregiver to caregiver? Are there any neurological or psychiatric or substance abuse problems on either side of his genetic family tree? Any "strange" relatives? I ask because of lot of things are inherited. You can't elude DNA, just dodge some bullets. Does he live with dad and mom? Any illnesses? How does he socialize with his same age peers?

    The more we know about his early years up until now, the better advice/support we can give.

    I agree that a neuropsychologist is the way to go for a diagnosis. I would want a fresh pair of eyes and neuropsychs are in my opinion the best diagnosticians of all. They do a tremendous amount of worthwhile testing and evaluating in all areas of function. I do not like it when kids are medicated randomly with medications thrown at them to see what sticks. I like to know exactly what is wrong first. If the medications do not work, I don't want my child on them. As an adult who has taken medications for years, I know first hand that medications are as apt to make things worse as better. Beware of doctors who want your child on too many drugs, as that can make one cognitively dulled and chronically unable to function. Been there too and, as an adult, had to tell the doctor, "Sorry, I don't like feeling like a zombie." He said "You look fine." I said "I feel like a zombie." So I decided what helped me and what didn't based on how I felt I was doing, but a child can't always explain things like that. medications cause rages more often than people like to think, even in adults. It took me ten years to find medication that helped me instead of making me only half ok or, worse, making me even less functional (I have a serious mood disorder, anxeity, panic attacks, the works) :) Good luck.
  9. Atmylimit

    Atmylimit New Member

    As a toddler he was difficult. I don't mean normal difficult either. Kicked out of daycare at 3 for trying to stab a teacher with a pencil. He struggled a little but the first day of Kinder he ended up charging a teacher and trying to knock over a bookshelf because he didn't want to hear her sing. That's when we began therapy. He has been suspended more times than I can count over the years. No delay in motor skills or speech. He lives with his step father, myself and 3 siblings. He didn't know that my husband wasn't his bio dad until 2 years ago. He has never seen or spoken to his bio father. In my divorce the judge said he was allowed no contact or visitation. He is in federal prison until my son will be 24 years old. He does have a psychiatric history but I don't know any of it. It was disabling enough for him to collect disability from the state. That's all I know. The violent rages and erratic behavior are him to a T. Not saying my MH has been any better over the years. I have been hospitalized and in therapy for ADHD, Bipolar, anxiety and Obsessive Compulsive Disorder (OCD) since I was 15. He tries to make friends but can't keep any for very long. We move every 4 years or so with the military but have been put in a special status due to his health care needs that states we won't have to move anymore. I think I answered it all. He has had some significant deaths in the family in the past few years. He flip flops between being depressed but still climbing the walls feeling hopeless to erratic joyful inappropriate behavior. Hope with some history you may be able to better direct me or at least suggest some things. I can't than you or the others enough for giving me some tips.
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Nothing new to add but wanted to throw out a welcome. So glad you found us. You must be overwhelmed with so much going on. Do you ever get time to have some "me" time? Easier said than done, I know, yet so very important. (((hugs)))
  11. TeDo

    TeDo Guest

    Can you get him evaluated by a neuropsychologist? That would be a huge plus. Also, please read those books. Your poor little guy is struggling worse than you are and he's being punished for things he may not even be able to control. I think you need fresh eyes to look into his situation. I also HIGHLY recommend you seek out Occupational Therapist (OT) and Speech Language Pathologist (SLP) evaluations asap. Your comment about him trying to stab a teacher at 3 years old because he "didn't want to hear her sing" is a HUGE red flag for sensory issues. You need to have them looked into sooner rather than later.
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Well, sounds like biology is against him as his biol father, in spite of not being in his life, is part of his DNA. However, I would get a neuropsychologist evaluation and try to give him help, a diagnosis that can be worked with, and coping skills that your ex never had. I can't emphasis enough how much I believe that a neuropsychologist can find what others miss and how that CAN be a turning point for your child.

    Please consider it. There are usually long waiting lists for neuropsychs (because they are so good), but the wait is worth it. You can find neuropsychs at university and children's hospitals.

    There is hope. I always like the phrase Keep the Faith. Just never give up and keep on looking for answers. There is more that can be done for him than what is happening now.

    Big hugs and hope to hear from you soon! Keep posting, regardless of what choices you make for your precious child. And don't forget to take time to baby yourself (bubble baths with fragrant candles and a good book is my favorite means of relaxation). Maybe husband can watch them while you steal a little bit of time to baby yourself :)
  13. InsaneCdn

    InsaneCdn Well-Known Member

    Occupational Therapist (OT) and Speech Language Pathologist (SLP) evaluations are not normally done by psychiatrists - not usually even as part of neuropsychologist evaluations - but if these are already done, other evaluators WILL make use of them. We were told to get these done first.

    Occupational Therapist (OT) evaluation should cover both sensory issues and motor skills (fine and gross).
    Speech Language Pathologist (SLP) should dover hearing, language processing, and auditory processing, including lessor-known APDs such as auditory figure ground (difficulty "catching" what is being said, or any other 'important" sound, in the presence of background noise).
  14. Atmylimit

    Atmylimit New Member

    Getting ready to go to his psychiatrist now. I am going to inquire about the Occupational Therapist (OT), Speech Language Pathologist (SLP) and neuropsychologist evaluations and see what she says about how to go about getting the referrals needed. With our insurance you need a referral for everything. Neurologist appointment tomorrow at the children's hospital, going to ask about the MRI they said he may need after I get EEG test results. Thanks so much for the feedback from everyone. I don't really think at this point I have the option to pick and choose what testing to have done on him, only that he needs every advantage he can get. Looking at every angle possible that may or may not lead to an answer. Praying they find something in the EEG or MRI so at least they can say, "we know what it is now let's treat him the correct way"! It's a horrible feeling wanting docs to find something wrong with your childs' brain. My poor baby. I need to get on top of things with my 6 y.o. as soon as things cool down with him because he is behaving much the same. Not so much physically but the outbursts and can't sit down. Taking a deep breath today and going to relax as much as I can. Fingers crossed for no phone calls from school today. Got 5 yesterday, that's enough for the week, right?!
  15. TeDo

    TeDo Guest

    Just an FYI coming from personal experience.....TELL them you want the referrals, don't ask. If you ask, they are probably going to talk you out of it. You don't even need to explain anything to them. Just simply say "I need referrals for Occupational Therapist (OT), Speech, and Neuropsychological evaluations." If the psychiatrist won't, tell your family doctor/pediatrician. You also need to have the names of the agency or person you want to do the evaluations. Do NOT leave it up to the psychiatrist to find one for you. YOU pick who YOU want to do them.

    Good Luck!!!
  16. Atmylimit

    Atmylimit New Member

    So I got the referrals I needed today. They increased his Lamictal thinking he needed more mood stabilizer but kept the Lexapro the same. Also changed him from Clonadine to Kapvay (another form of Clonadine but extended release). I don't think I will ever use it but she thinks he needs Thorazine. I took the script but just don't know. We are off to the neurologist tomorrow. I am going to demand the MRI. Here's hoping something changes for the better.
  17. buddy

    buddy New Member

    For a couple of reasons I would say go with your gut on the Thorazine.....

    Not sure of your full medication history but for one thing, I wonder why a heavy hitter anti-psychotic/major tranquilizer instead of one of the newer ones??? I am no medical person, just seems so interesting to me....

    Most importantly to me.... unless an emergency I believe strongly in changing only one thing at a time for any person.... that even means if a certain kind of therapy is starting, or a new medication or an increase or decrease in a medication... etc.

    If not done that way then there is no way to tell what is affecting what. You are really on a roll... for sure stick to what you are doing now... you had two medication changes though if the dosing on the Kapvay is equivalent to the Clonidine then that one may not be so big.... the Lamictal change is enough for now.... (in my humble opinion of course, you do what feels good to you):warriorsmiley:
  18. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I can't imagine why the doctor would even consider throrazine. Please don't put him on it. Why does he need so many medications?

    in my opinion get another opinion ASAP. Doctors never consider that maybe the medication dose is too HIGH. They always want to jack it up. Often, the dose IS too high. Often there are too many drugs and they are not working well together too. Research everything yourself before you agree to it.

    I hope you get a second opinion and a great psychiatrist as well as a neuropsychologist evaluation. Huggggggggggggggz!
  19. TeDo

    TeDo Guest

    Atmylimit, I am so glad you got the referrals you needed. You are finally on the right road. I think you might be amazed at the results. Way To Go Warrior Mom!!!

    As for the Thorazine....absolutely my humble opinion. Even as a last resort, I would not do that to my son. Uh Uh. No way.

    Your new mantra: "TRUST MY MOMMY GUT!!" It will be right 99% of the time.
  20. Atmylimit

    Atmylimit New Member

    So the neurodoc is leaning to the thinking he has Tourette's Syndrome. We head to his psychiatrist again tomorrow to discuss this as well as him going to his therapy session. He is already on one of the medications that is used to reduce these symptoms so maybe a dose adjustment is all that is needed. I want to give it a few weeks since she just changed him to the extended release form on Monday. Time will tell.