Advice?

Discussion in 'General Parenting' started by MyHrt31, Jan 17, 2009.

  1. MyHrt31

    MyHrt31 New Member

    Hello everyone, I am new here to this place. I have never been apart of a support group but this place seems like a great place to share stories and offer advice. I don't know exactly where to begin so I'll start with introducing myself as MyHrt (MyHrt) stands for MyHeart which is my son because he is my heart :redface: He is 9 years old and he has been diagnosed with Aspergers, Bipolar Disorder, ADHD, Anxiety Disorder, and Conduct Disorder. I am a single parent with not much of a support system. The reason I am writing is because my son has been on medication since he was two years old. Nothing has seemed to work. He's been on pretty much everything and nothing has helped. He is currently on 450 mg of Lithium twice a day, 15mg of Abilify twice a day, and 30 mg of Vyvanse once a day. I also started giving him 1000 mg Omega 3 once a day last week (I know that it takes a while to build up in his system). The problem is that nothing seems to be helping. He's been on the Lithium/Abilify for two months now and it almost seems like he's worse. His psychiatrist is amazed that it hasn't calmed any of his aggressiveness or helped with his irritability. He seems more irritable than ever before. He's been to so many doctors and been on so many different types of medicine (Depakote, Trileptal, Risperdal, Clonodine, Ritalin, Metadate, Focalin, Adderall, Concerta, just to name a few) These were all used in combinations and nothing has ever seemed to help. Is it possible that medication just doesn't work on some children? The reason I am asking is because I hate seeing him take all of this medication only to have him get worse most of the time. He gets so frustrated that he starts to cry because he can't handle his emotions. I am working with him and a psychologist on behavioral plans but the medications just don't seem to be helping any. I just feel that if we could find the right combination, we could really work with him. Has anyone else has this problem or know of someone with this problem? Are there any additional test that we can do? Any advice would be greatly appreciated. Thank you all so much :D
     
  2. TerryJ2

    TerryJ2 Well-Known Member

    Hi Myhrt, welcome.

    Wow, you've been through the ringer. It's not for lacking of trying that you don't have good results!

    First off, I thought Conduct Disorder came later in life. Your son is only 9. You may want to look it up online and get more info, and questiong the dr who made the diagnosis.

    What is your family history? Any bipolar or anything? (If you could put a profile at the bottom of you posts, it would help. I am very forgetful. :) )

    Also, although bipolar and Asperger's often go together, I would (this is just me, and my son may still be bipolar) want to work on the Asperger's aspect more, because the medications could be masking other problems. He is so young to have all those dxes.

    Have you read The Explosive Child? Or the Manipulative Child? Have you changed your son's diet?

    I'm wondering about your son's underlying irritability. My son has that, too, but we have really, really changed our lifestyle so it is much less demanding on him and it has really helped a lot. That, and getting rid of gluten and dairy.

    So far, we haven't done any medications in combination until just lately. We've tried them one by one to make sure we knew how that exact drug affected our son. How would we know otherwise?

    Have you considered hospitalizing him to do a medwash and starting over? Just a thought.

    Others here, with-more experience with-those medications, will jump in. You will get lots of ideas here!
     
  3. klmno

    klmno Active Member

    Hi and welcome! I'm sorry you are going through this but you have found a great support group here. There is a lot of experience and many people who will understand your frustration. I looked into a study for kids with bipolar, which was made known to me by one of the board's members. I wonder if this might be an option for your son. They have several studies going on and I particularly liked oone that involved an inpatient stay and a medication-wash.

    Anyway, I think if I were in your shoes, I'd try to get an inpatient medication-wash for my son somehow. With all those diagnosis and medications, it sounds like the professionals really don't know what is going on with him and has symptoms that cross many lines of things. Has he had complete neuropsychological testing done in the past couple of years? If you could get him off all medications and have complete testing done, and maybe even evaluated by a neurologist on a Multi Disciplinary Team- with several types of professionals, it seems like it would be a good approach. That way, they could get him back to his baseline and see what they are dealing with there and put there heads together. That's just my opinion- start over.
     
  4. Ropefree

    Ropefree Banned

    MYhrt: Welcome! I feel confident that you have found a great place to unload and get some good idas from others .
     
  5. goldenguru

    goldenguru New Member

    Welcome myhrt -

    medications by themselves are rarely effective. Many people don't understand that a multifaceted approach to behavior problems is a must. Having a psychologist is a good start. A social worker may also help to address some of the other approaches to helping you and your son.

    Sadly, there is a number of people who are considered 'medication resistant'. (My husband has been 'titled' as such.) At 9, I certainly wouldn't throw in the towel on medications yet. I do think that a medication wash might be a good thing - since your son's body chemistry has certainly changed a great deal since he was a toddler. Something to discuss with his psychiatrist for sure.
     
  6. DaisyFace

    DaisyFace Love me...Love me not

    Just wanted to say Hello and Welcome!
     
  7. MyHrt31

    MyHrt31 New Member

    Wow, you guys are quick, lol. I didn't expect so many replies so fast :D We do not have a family history of mental illness. My son's father committed suicide but he was never diagnosed with any mental illness. As far as his diet goes, I have tried eliminating caffeine and sugar from his diet. He is such a picky eater at this point, I am having trouble getting him to eat anything that is healthy. I slip veggies into his chili and spaghetti and I finally got him to eat baked Tiliapia and baked chicken tenders as apart of his "healthy diet" lol.

    What is a medication wash? He is on Medicaid so I am not sure if that is covered. Is that something that is done in a hospital? Sorry for all of the questions :redface:
     
  8. MyHrt31

    MyHrt31 New Member

    I forgot to say thanks for all the warm welcomes! I wish I would have found this place a long time ago. Sometimes I just feel so alone :anxious:
     
  9. compassion

    compassion Member

    Welcome!!! My difficult child has similar rx and 15 abilify and 100 Lactimal mood stabilizer is helping a lot. I am really getting a lot out of the RAINBOW approach advocated by Mani Pavuluri in What Workd for Bipolar Kids:
    R is for strict rountine. I write this down and have difficult child sign it. It helps a lot.
    A is for affect (mood) regulation. I started the chart today with these colors: Blue sad, red, angry/explosive, brown crabby/irratablle, yellow+ happy, oragne+silly, green = fair/neutral, and purple+worried. I am trying to have difficult child be in touch with her moods but if she is not, I am colring them in. I have chart on firg. It is morning, afternoom and evening.
    I is for I can do it: saying positve self statment to build self esteem.

    N is for no negative thoughts. Reinforce focus on positve and constructive thoughts. Reinforce living in the now.

    B Be a good freind and live ablance lifestyle. Teach skills to make and keep friends. This fosters self worth and connectedness.

    O Optimal problem solving Engage in colloborative problem solving. Do nota ttmept during rage!!! PEP TALKS ARE THE KEY TO INFLUENCING BIPOLAR CHILDREN.

    W "Ways to Get Support" Have child drawe a support tree and write names of people they could reach out to and are close to them. This shows there are connections and support available to nurturte them when in need.

    I just knwo it takes a lto of pateince and keeping helpful and positive. Hang int here!!!!
    Compassion
     
  10. susiestar

    susiestar Roll With It

    Welcome! I am so glad you found us, but sorry you need us, Know what I mean???

    anyway, my first question is have you read The Bipolar Child by Papalous? It is considered the "bible" for children with bipolar or other mood disorders.

    One thing that stands out is that he is on Abilify, Lithium and Vyvanse. Many times children with bipolar cannot handle stimulants such as vyvanse. The American Academy of Child and Adolescent Psychiatrists has a protocol for treating children with bipolar. Sadly, many docs forget about it or don't know it.

    the protocol calls for using a mood stabilizer FIRST. Sometimes a second mood stabilizer must be added. Once moods are stable, then other things can be addressed very slowly. Often an atypical antipsychotic like Abilify is used with the mood stabilizers because the aggression and violence our kids can show.

    After moods are stable and aggression dealt with, THEN if ADHD symptoms or anxiety symptoms are there they can be addressed. But often even very small doses of stimulants (like vyvanse, ritalin, adderall, concerta, etc...) will send the child cycling. So sometimes antidepressants like strattera are used (strattera is effective on ADHD but is an antidepressant). Often this also sends the child cycling. Many children with bipolar cannot tolerate antidepressants either.

    All of this is in the Bipolar Child book. It is explained very well in there, but you will want to read the book a bit at a time, it can get very technical.

    From what we learned when my son was younger, you address teh Bipolar first because so many medications (including cold medications) can send the child cycling. Then, once the child is stable you address the Aspergers, ADHD (which often can disappear if the child is stable - mania can look like ADHD as can mixed states and ultra rapid cyclers).

    I would ask his doctor about removing the vyvanse and adding a second mood stabilizer. You may find that is helpful. But I am NOT a doctor, so don't make medication changes based on what I am saying!!!!

    The Explosive Child is an Excellent book - it really helps you look at parenting in a new way, a way that works better with our children.

    A medication wash is where they slowly wean the child off ALL medications to see what is really going on versus what is a side effect of a medication or of medications interacting. I TOTALLY recommend trying to have this done in the hospital, many kids have real problems while the medications work their way out of their system.

    Not sure if medicaid will cover it, but I do know that when we were on the state medicaid for kids it covered a LOT more than our private insurance does, including a 4 month psychiatric hospital stay for my son that didn't cost us anything!

    Sending gentle hugs, and with any advice you get here, take what works for you and ignore the rest.

    Susie
     
  11. klmno

    klmno Active Member

    Well, it's probably relatively safe to assume that the father at least suffered from depression. In any case, yes, we are referring to having your son go into a child/adolescent psychiatric ward of a hospital. (We refer to that as "psychiatric hospital" here.) It sounds worse than it is. My son is in one right now. Anyway, I'm not sure how long a typical stay would be for a medication-wash- others can probably tell you that. But, if the psychiatrist recommends it, I would think medicaid would pay for it. If your regular psychiatrist (psychiatrist) won't recommend it, switch psychiatrists and you'll probably have better luck.

    Actually, you might check and see if there's a Children's hospital or teaching hospital (a hospital connected with a university that teaches medicine) and see if you can get an appointment with a psychiatrist for a second opinion. Then, explain all this history and tell him/her you'd like a medication-wash and Multi-disciplinary evaluation, with coomplete neuropsychological testing. This would be your best bet in narrowing down what is going on with him and getting adequate treatment and supports. Also, this will help get him on an IEP at school, if he's not already on one.

    I also recommend reading The Explosive Child.

    If you want to follow that route, let us know what state you are in and at least one person here can probably PM (private message) you a nearby place to start looking. If you don't want to make your state public knowledge, maybe look around on the board for a Moderator in a state near you and PM them. The mopderators have all been here a while and keep the board members on track LOL! I'm sure if you explain that you're a new member and would like to know of a nearby facility that might be able to do a medication-wash and MDE, that they will help you out.

    In the meantime, feel free to ask questions or vent or just let us know any specific problem you'd like some opinions about.
     
  12. Nancy423

    Nancy423 do I have to be the mom?

    Wanted to say hi and welcome!! My difficult child never did any better on medications so we completely took them out of the picture (leaving just the asthma and allergy stuff) but that took 5 years to finally have me throw in the towel. I guess I was looking for a miracle pill. What we did was go the non medicinal route and put her in a brain stimulation program. Took her 2 years (twice the average) to "graduate" but we see so much improvement. It also cost us a TON of money out of pocket.

    When we were on state medicaid we also got quite a bit of behavioral health benefits. I know calling case workers isnt' always fun, but you might want to check with them to verify what the state covers. I've never had any problems with- Children's Hosptial but that was back in '01-03 and a lot of state budgets have been cut since then.

    I wish you luck!
     
  13. Sheila

    Sheila Moderator

    I didn't read the threads above, so this may be a repeat.

    I'm wondering if difficult child's bipolar was stabilized before introducing the ADHD medications? If not, that may be at least part of the problem.

    Have you read The Bipolar Child by Papolos? It's an excellent resource for parents.

    Welcome to the site.!
     
  14. MyHrt31

    MyHrt31 New Member

    He was on Vyvanse and Risperdal for awhile and that didn't seem too bad but he was still constantly getting in trouble at school which meant I was getting called at work to go and get him (not good for a single parent with no other support system). I brought him to a new psychiatrist (she's supposed to be the best in this area) and she's the one who gave him all the below diagnoses. She switched his medications to Lithium, Abilify, and kept the Vyvanse. She tried to increase the Vyvanse but he said that it felt like his heart was beating out of his chest and it made him even more hyper (weird, I know). So she increased his Lithium and Abilify and kept his Vyvanse at the dosage he's been at for the past 4 months. It seems like he's more irritable since he's started the Lithium and Abilify? Or maybe since he's gone off the Risperdal? He's been off the Risperdal for about 3 months now so I don't know if he would all of a sudden be getting really irritable because of that. Its just so confusing! Is it wise to say the state I live in here in the message board or would it be better to PM someone? I can say I live way down south ;)and I enjoy my food spicy, lol. That doesn't necessarily give too much away right? My son's school is going to call his psychiatrist with their observations in his behvavior since starting the medication so maybe we can get another appointment earlier to see her. I know I can't completely rely on medication but its hard to work with him because he's so fidgety and irritable (even without the medication). Thanks for all the advice, I am writing this all down and I am going to the library to check out these books sometime this week. You guys are my angels :redface:
     
  15. klmno

    klmno Active Member

    Most of us feel comfortable saying the state we live in, but that is up to you- no pressure here. :) You can look at the upper right corner of people's posts and it will tell you if they list their state. I am in Virginia. We have a couple of members in Florida, NC, SC, and a few scattered around the area. There are others in the south that aren't so far toward the east- all the way to Texas and CA.
     
  16. MyHrt31

    MyHrt31 New Member

    I am in south central Louisiana. There aren't any pediatric inpatient

    hospitals here for mental issues (at least not in this area). There may be

    some in the New Orleans area or in Alexandria. Neither of those are a far

    drive for me. If my son were to go inpatient, I would worry about how he

    would react. He sleeps in the bed with me (I know thats not good)

    because he is always scared and he doesn't sleep well. Even with the

    medication he is on, he never sleeps really well. He sits up in bed and

    argues with people (usually his classmates or his teachers) and he kicks

    and fights in his sleep. I know I am being a worry wart but I just can't

    help it. He's never been away from me before and I worry that it would

    scare him more than it would help him. Sorry for pouring all my anxieties

    out here, its so nice to talk to other guardian angels who understand :D
     
  17. klmno

    klmno Active Member

    Ok- let me think, how's the best way to see if we have a member around that area....I think you need a new thread that has LA in the topic/title so everyone can see it. Are you comfortable doing that? I'll do it if you aren't and you want someone else to.

    As far as him sleeping with you, I understand what you're saying and I know how easily the habit can be formed, but at his age, I think you need to start getting him to sleep in his own bed. I know it's hard- mine slept with me until around 6 yo and it was a hard habit for him to break, it took several sleepless nights to change it. But at 9yo, you definitely need to get that changed because hormones and puberty are going to be there soon. If it's because of anxiety, I doubt it will get better by continuing on this path.
     
  18. Andy

    Andy Active Member

    Welcome!
    .
    I would like to address your anxiety over leaving your child at a psychiatric hospital. I completely understand! My difficult child was 11 years old and only one time in his entire life did he sleep overnight without mom or dad in the home. Our situation is a little different in that he begged to be hospitalized making it easier but he still went through those very strong separation homesick feelings.

    psychiatric hospital were new to us. When staff told us that I would only be allowed contact during visiting hours, the look of total fright that came to his face was haunting. I knew his thoughts were, "No, I changed my mind. I can not do this." My panic was right there with him but I reminded him (and myself) that he had stated he would do ANYTHING to get rid of these feelings of self harm. He COULD do this. The psychiatric hospital was one hour from home and so he requested that I stay overnight in that town. He knew he could not contact me but if he knew I was close by, it would be easier for him. So, I did stay at hotels every night for almost the entire two weeks. I don't know that I would have been able to be home knowing he wasn't in his bed. I would get up in the morning and drive home to work all day and then back to visit him every night.

    I tell you, I cried all the way home that afternoon to get him a change of clothes. I called the school and talked to the church secretary to ask that she tell his teacher and also one of the pastors. I received a call from another friend and cried my heart out to her also. I feared telling husband. This was so unexpected. All husband asked was if difficult child wanted this. I think it really upset him. But I didn't care, I knew that this was best for difficult child.

    Kids who are struggling usually do super well in phosps. They quickly learn the structure and that structure helps them feel safe. Rules and consequences are clear and immediate. Staff do not have the emotional ties that confuse the consequences as parents sometimes do. The kids can concentrate on their struggles. The focus is always on their behavior.

    Yes, it is super hard to leave your child with people you do not know. You have to trust that they have your child's best interest in mind. They will work with your child and give him coping skills.

    When my difficult child returned after two weeks, he felt homesick for the psychiatric hospital so we implemented the bedtime structure at home.

    Another cool thing for us was that after a week difficult child was on a pass with me and asked, "Mom, do you know what I hate most about being here?" "I hate that you are missing out on watching me grow up!" He was gaining so much strength and coping skills that he really felt like he was growing up (which he was). I told him that I can see the changes and I am still able to watch him while he grows up during this hospitalization.

    On a side note, if you do make the decision to have your son hospitalized, make sure that the passes are clearly defined for you. I was told my difficult child was going to have a pass and I did not understand it was for the entire day. I thought it was only to take him off grounds during visiting hours. So, if you are offered a pass, ask, "What hours are the pass good for?"

    Think about how you want to continue. Do you need a drastic change? Will anything be better than what you are going through now? You are in a nightmare that is getting worse and worse. I think a psychiatric hospital can help.
     
  19. susiestar

    susiestar Roll With It

    I will second what Adrianne said about kids who are struggling usually do quite well with the structure of a psychiatric hospital. It is kind of surprising. There will be separation anxiety, on both your parts, and you can expect to cry after you leave him. My difficult child was 12 the first time he went to a psychiatric hospital and I cried all the way home! husband and I had to stop at a park because he was crying also.

    BUT Wiz adapted quite well to the structure there. Most of our kiddos do. For us the closest psychiatric hospital is an hour and a half away. Many people have to drive even farther. We actually have to drive that far for doctor appts!

    It sounds like your son has never had a chance to be on just the mood stabilizers for a few months to get his moods stable. I strongly recommend you get a copy of The Bipolar Child, read about medications, adn then talk with the psychiatrist.

    I think if you have your son on the lithium and maybe another mood stabilizer for a few months, then add an antipsychotic like abilify, you may see huge changes.

    You also need to do SOMETHING about his sleep. This will be crucial for BOTH of you. Being sleep deprived can have serious consequences. It can even cause behavior that looks like ADHD. I learned this from the doctor who did my sleep study. You child might benefit from a sleep study. At the very least, a medication to help him sleep should be considered. Just be SURE that they don't suggest a medication that is an antidepressant. Many docs use trazadone, which is an older antidepressant, to help kids sleep. But for bipolar children it can cause them to cycle, which defeats the entire purpose.

    Hugs,

    Susie
     
  20. totoro

    totoro Mom? What's a GFG?

    Hi and welcome to a wonderful place!
    We ended up doing a medication wash last year, because we had no idea what medication was helping what, hurting her more? What was at it's right dose?
    We had a psychiatrist that moved way too fast and had added medications to fast before K was stable on the first one.
    So now we have a new psychiatrist and we say what medication she goes on and how fast we titrate up, with help and direction from our psychiatrist of course.
    But we always have final say in any of the choices.
    We just chose to back off of her medication that she is on due to weight gain and tics.
    She will start another but not until we are ready. We are doing her Neuro-psychiatric testing first.

    After having her on way too many medications, we will only go one medication at a time. Get it up to Therapeutic levels and then see what symptoms are left. Then maybe choose another medication if needed.

    I agree with the others about sleep and the books. I am huge fan of Dr. Pavuluri's husband and I both follow her Rainbow method.
    We had a very hard time with sleep for our kids. But we have tried very hard to keep it in their beds, even if it mean we spend a lot of time in their beds.
    Slowly decreasing the amount. For K if she is hypo or manic we allow her to read or listen to music. If it is really bad she can play her DIDJ (leapster).
    Me or husband will read to her, rub her back and then leave her with one of these things.
    It has really helped her.

    Good luck
     
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