Tired of talking to people who do not understand!!!

Discussion in 'General Parenting' started by april222999, Jan 14, 2011.

  1. april222999

    april222999 New Member

    I found this site searching for information on risperdal. My son takes that and has gained weight he can't stop eating and he can't sleep. I want to take him off of it but I am not sure of the risks and benefits. He also takes concerta and zoloft. I honestly want to take him off everything and start from scratch but I know I can't do that without the doctors help. I am not even sure what he is clearly diagnosed with because they throw different things out I think they just toy with ideas since they don't have answers. It started with bipolar because his dad is but now they are saying hes p.d.d with adhd with mood disorder I don't believe a word they say anymore. We just moved and he is going to start at a new place I hope they can listen to me and possibly give me some answers. I tried to get him in Special Education where we were but because he is very smart I get ignored even though he clearly is having problems at school. Also hoping here that things will change the school called me on his first day asking what was going on and what they could do to help :-( anyway anyone that has some input similar children experience whatever it would be greatly appreciated.
  2. slsh

    slsh member since 1999

    Hi April and welcome. So glad you found us!

    I think it's a very hopeful sign that the school has contacted you. Well, hopeful at least in terms of getting some supportive services in place. I still cringe when I get calls from schools, and my difficult child isn't even in school anymore, LOL. Has the new school started the process of evaluating him for a possible IEP?

    My son was diagnosed with just about everything at some point during his childhood. It was incredibly frustrating and my take on it finally was I don't care *what* they call it, can we just work on helping him to become functional??? Obviously, interventions will differ if we're talking Pervasive Developmental Disorder (PDD) versus a mood disorder versus a combination of them both, but... it sounds like this move may have been a good thing in terms of starting over and getting a new set of professionals to take a look at what's going on.

    Risperdal was a miracle drug for my son. It made a huge difference in the frequency and severity of his raging. He did have significant weight gain on it, but it boiled down to the lesser of 2 evils. He was on it from age 8 until he hit 18 (when he stopped all medications), with a vacation from it for about a year and a half somewhere in there. Unfortunately, in my experience medication management is much more art than science. There's no way to predict what medications will work, what medications will be useless, and what medications will have negative side effects. I think it's important to try to find a psychiatrist who really hears you and who has a light touch with medication management, though I know sometimes it can be really hard to find the right dr. Obviously, I think getting your son reevaluated so that your team has an idea of what you're dealing with is going to be your best first step.

    Anyway - welcome and I'm so glad you found us!
  3. Bunny

    Bunny Guest

    I think that if the school is calling you to find out what they can do to help you then you need to take them up on that offer. See if they can evaluate him for any learning disabilities. If you have a diagnosis of Pervasive Developmental Disorder (PDD) with ADHD they may be able to put some type of IEP in place to help him. Just because he's a smart kid doesn't mean he doesn't need help along the way. If they can help you that's one step ion the right direction. What kinds of problems is he having in school?

    My son just started taking Risperdal right before Christmas and I can see a significant change in him already. Do you think that the medications that he is on are not helping him? Is the psychiatrist monitoring his weight gain? Is the weight gain making your son unhappy or is he getting teased about it? Talk to the psychiatrist about your concerns for the medications and ask him about taking him off everything and starting over if you feel that what he is taking is not helping his situation, or if they are making it worse. Our difficult child started on Celexa and we took him off it after about two months because it was making him more aggressive than he already was. That was when we started the Rsiperdal.

    You have found a great place here.

  4. DaisyFace

    DaisyFace Love me...Love me not

    Hello and Welcome--

    My child, too has been diagnosis with "alphabet soup" over the years....but regardless of the label - there's a problem!

    If the school is contacting you with an offer to help - grab that with two hands! Many schools try to deny a problem even exists....so if you are finding teachers who are willing to work with your child, take advantage.

    And I agree with SLSH, many times - we have to choose the lesser of two evils when it comes to medications. Hopefully you can find a doctor who is willing to help you...

    Welcome to the group. We definitely understand...
  5. smallworld

    smallworld Moderator

    Hi April, welcome!

    Risperdal typically causes sedation so there's a chance that it's either the Concerta or Zoloft that's keeping him awake. What doses of each medication is he taking? When does he take his medications? What behaviors are you seeing that concern you?

    Again, welcome! I'm glad you found us.
  6. TerryJ2

    TerryJ2 Well-Known Member

    Hi April222999, welcome.
    You have definitely come to the right place.
    And I hate to say it, but even when you get the right diagnosis, you still doubt it! It's a lifetime of learning.
    Meanwhile, it's great that the school called. You may be able to have some productive mtngs.
    I'm sorry about the weight gain. That's a tough one.
    I thought that Zoloft and Concerta were not good medications for bipolar, although maybe the Risperdal balances them out. Then again, maybe not. I see where you're going with this ...
    Switch doctors?
    Are you seeing a pediatric psychiatrist or a pediatrician? Definitely use a specialist. That's all I can offer.
  7. HaoZi

    HaoZi Guest

    Hi April. My daughter started with an ADHD diagnosis, anxiety and ODD got tacked on, then bi-polar. One of things I'm looking into now is some form of Pervasive Developmental Disorder (PDD) (my personal suspicion is Asperger's). Mine is also quite bright about a lot of things, and she also has a talent for anger (my nice way to put her chair and shoe throwing tantrums).
  8. My difficult child is just considered "mood disorder -- not otherwise specified" since they don't really don't what to call him. We wen through many drugs. Risperdal was a flipping nightmare in our house. Lamictal has worked well for him. If you've just moved, then your difficult child is dealing with extra stress, too. Are you still seeing the same doctors? They should be able to explain why this particular drug mix was chosen. There's a lot of trial and error. If you're not comfortable with your son's medications, the docs should be able to explain it to you. And good luck with the school -- I hope you're able to get the services you need.
  9. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Hi April,
    Welcome to our corner of the world. I know how frustrating the weight gain can be. We are going through that right now with our difficult child although it is due to another medication. I agree it is definitely a good sign that the school is calling. I'm really hoping you have a better school than the one you came from; just because someone is really smart doesn't mean they don't need Special Education services.
  10. april222999

    april222999 New Member

    Well his other school called me all the time to the problem there was they had no say in Special Education. The complaints are he refuses to talk in class or do work, he will go off into corners and just draw in a book or hide under desks anything not to be in the mix. Hes been seen rocking in class as well and they were toying around with mild asbergers but nobody agrees on anything.

    The place he was going to was a pediatric clinic he saw a therapist weekly and a Psychiatrist monthly give or take but they changed doctors like every other month. he is taking 36 mgs of concerta, zoloft 150 mgs, and risperdal I think its 1.5 its 3 small pills he takes everything in the morning with the exception of one risperdal at night. I was told it was definitely the risperdal affecting his sleep. hes up in the middle of the night and ridic early says he cant sleep. The eating thing he is starving all the time I cant even afford him he devours everything.

    I really dont know if the risperdal is helping anymore everything becomes a blur you know and when you talk to docs they just up the medications and I feel awful giving him all these pills everyday! I have alot of people family and friends who have opinions that make no sense such as if he was my kid i would straighten him out he needs discipline and blablabla as if they know what its like. Sometimes i am at my wits end and I want to snap at there ignorance.
  11. HaoZi

    HaoZi Guest

    I see Autism Spectrum Disorders (ASD) flags there, and Autism Spectrum Disorders (ASD) kids often do not react to medications in typical ways. You definitely need further and in-depth testing for him for proper help/support/placement. Her diagnosis's are very similar. While some here have had great success with risperdal, for us it was a nightmare. She did better on Zyprexa (though ate everything in sight), but for reasons beyond weight gain I had to have her taken off it and placed on something else (Abilify and back on clonidine is the present route for us).
  12. TerryJ2

    TerryJ2 Well-Known Member

    I agree with-the Autism Spectrum Disorders (ASD) signs: rocking and hiding under desks.

    We do clonidine (husband just found 4 tablets under a chair in the LR ... that explains one reason difficult child has been a jerk lately), Concerta, and Imimprimine. Every kid is different, but one thing to be aware of is that these kids are easily overwhelmed and anxious. That could explain a lot of the nonresponse issues in school. So sorry the teachers have been less than helpful.
  13. april222999

    april222999 New Member

    Its strange all of my kids show signs of asbergers but this one is the biggest problem its funny you say your son hid his medications and was acting like a jerk becuz I sware when my son misses he also is a jerk and thats exactly what comes to mind. I try my darndest to be patient with him but I tell you he pushes all the right buttons on all the wrong days you know? I just had a disagreement with my sister and her husband this weekend they are under the impression that putting him in Special Education is wrong and that all kids are "retarded" or "slow" which really annoyed me I mean there are so many aspects of Special Education and I don't think its fair to a teacher in regular ed to have to handle all my sons problems on top of a full class of kids.
  14. Fran

    Fran Former desparate mom

    Hi and welcome. I don't know how old your child is. Could you do a profile signature so we have some background info? Thanks.
    Our son's doctor said (when difficult child was 12)that the labels/diagnosis that are given is the best they can do with the information that we have at present. As science knows more, the diagnosis' will be fine tuned. We work on the problems and not worry about the labels too much. If my difficult child had an adhd diagnosis I tried to learn what the mindset is so that I could help him manage his obstacles. When we had atypical bipolar not otherwise specified, I learned everything I can learn about that and when we got AS or Pervasive Developmental Disorder (PDD), I learned a lot about that diagnosis. My difficult child is 26 and he is not a clear cut anything but he has many obstacles. He is pretty independent with supports in place. Not working but learning and growing.
    Risperadol was a big help for my difficult child. It was the single most effective medication he took. He has weight gain. It was the choice between functioning or obesity. I chose to go with functioning and help him work on the obesity.

    Ignorance of what special needs classes really are is getting better but there are still people who look from the outside of our world and think they know something more than those who deal with difficult child's. Don't take their advice. Be polite, pretend to listen and do what is in the best interest of your child. You owe NO ONE an explanation of what you chose for your son. Get support from parents who have walked in your shoes.
    Your role as difficult child's parent is to advocate for him to be in the right situation to learn and to overcome his obstacles to be an independent, tax paying, law abiding adult or as close to independent as he can become. Everyone else's view of parenting is of no consequence.
    Quit sharing the day to day struggle with people who are negative. You will find that there are a lot of people who know what's best for your child but only you see him and his struggles. Do what your child needs and ignore the rest. None of the do gooders stay to help your child have a better day. No one pitches in to give you a break. They are just talk. You will sleep better and have no regrets that you didn't do everything possible to help your child if you look to him for the direction you need to take.

    I often think that if I had as many obstacles and challenges as my difficult child, that I wouldn't even get out of bed. He continues to get up every day and try. He didn't succeed for most of those days but there were successes interspersed with set backs. Just keep asking yourself "what does he need to over come today's issues". No one else's input will guide you nearly as well as your instinctual maternal drive to raise your child to adulthood. Plus educating yourself.
  15. TerryJ2

    TerryJ2 Well-Known Member

    you owe NO ONE an explanation of what you chose for your son.

    Right on!
  16. HaoZi

    HaoZi Guest

    My impression of Special Education being the "slow kids" was the same, because that's how it was when I was growing up. My understanding of those kids and what Special Education covers has expanded a lot over the intervening years, to encompass everything from dyslexia to kids like ours and (in kiddo's school at least) the physically disabled kids and kids for whom English is not their first language that need some extra help. They may well have the same impression from their own days in school. You can educate them or tell them to stuff it and do what you feel is best for YOUR kid. They don't live with him, they're not responsible for him, and their currently unenlightened views shouldn't hold your kid away from things that could help him.
  17. april222999

    april222999 New Member

    I don't know I just made a sort of signature I hope its good enough. Anyway yea your right no one elses opinions matter because in the end they aren't helping me anyway. I just hate when people think they need to comment on something they know nothing about and it makes me defensive and I want to put some facts out there for them. I carry alot of guilt for my childrens issues because they don't have a father and you bet thats the first thing that gets pointed out in this scenario. Sometimes i feel like it gets dismissed that easily. In the meantime I have to work way to hard to get them what they need.
  18. Fran

    Fran Former desparate mom

    April, I understand completely about looking at one issue and blaming all behaviors on divorce, illness, alcohol or drug abuse, moving to a new area etc, etc, etc.
    My husband and I did it just like the text book would describe. Not one thing to point to as a reason for difficult child to be so out of control. Didn't make a bit of difference. He was the wildest most hyper active and impulsive kid in almost any group. It seemed professionals were looking for a reason, like we were hiding some deep dark secret. I commented on that to the evaluation team. If we had something considered out of the norm, that they would use it as an excuse but as it is, it was how difficult child was wired.
    It makes me very sympathetic to those who feel they did something wrong. Almost no one has a perfect home life and to imply that one thing (other than a big catastrophic event) causes our kids behavior is very small minded and ignorant.
    Just reshift your focus from explaining to others to working with a team of professionals and family who want to see your difficult child's succeed. Slowly those family and friends will slip away. They will judge you but, again, you don't owe them anything. Nothing you do or teach will change their mind if they chose to blame your lack of father figure or divorce or whatever the reason. Once I stopped spending my energy on others and refocused on what my difficult child needed it held much less power over me.
    Hang in there. It's a long road and we change and grow with each step.
  19. HaoZi

    HaoZi Guest

    April, my kiddo has He-Who-Doesn't-Bother. Needless to say, on the few occasions he does call, it stirs up her anxieties something awful if he promises to call her again on a certain and (as usual) fails to follow through. I think I finally got the message through to him last time we talked, when I said don't promise her and then not do it, it doesn't matter why you didn't do it. If something happens and you can't, scrape the change out of the couch and write her a letter so she doesn't feel you kicked her to the curb. Again. He made no promises last time he talked to her. She didn't have a meltdown about it, either. She doesn't ask when he will call again. She long ago gave up calling him.

    Is this her only issue? Not by any means. Does it contribute? In our case, most certainly. It also means I have to play Mom and Dad, nurturer and discipliner, have no one to "tag team" with if I need it. So yes, it affects us because of that, as well. Soon as I recently mentioned needing to test mine for autism I got the impression that he's not going to fight for any visitation whatsoever. Fine with me, less hassle overall and frankly I don't trust that he or his girlfriend could handle it and then mine would get blamed for the behavior the other kids pick up from her.

    As they get older they'll notice more about other families, and for a while kiddo was fixated on having a "whole" family. Then they'll get older and wiser and figure out that "whole" doesn't mean the same thing for every family, and that "happy" is the best one can reach for, no matter the circumstances. You're not alone, sometimes it just feels like it.