Worn out looking for answers

Discussion in 'General Parenting' started by FredGeorge, Jun 29, 2011.

  1. FredGeorge

    FredGeorge New Member

    I started writing this post while sitting in Alex's (not his real name) bedroom, waiting for him to finally fall asleep. He would have been happy to go to be alone, since I later found my smartphone once again hidden under clothes in his closet. But in the last week, he has broken one of his bedroom windows, gouged several holes in the drywall throughout the house, thrown eggs in our living room, and jumped the backyard fence to "unplant" the neighbor's vegetable garden.

    This is the more serious behavior. I've come to expect the daily organizational chaos that includes scattering Legos around the house, taking kitchen utensils in the backyard to dig holes and then smear dirt on the house.

    When I look at what I've described, he sounds like an unsupervised monster, but all this happened when my wife and I, and our other three kids were home. It's gotten to where, today, I literally wouldn't let him out of my sight, other than to use the bathroom, and even there I watched the clock to make sure he was coming right back.

    And yet, he can be delightful at times--for a moment here and there.

    We first fostered him at 6 weeks and then adopted him at 1.5. He was neglected by his birth mom, who drank and used drugs while pregnant. He came to us withdrawn and resistant to affection. Through a lot of TLC and Occupational Therapist (OT), he came out of his shell considerably, but has always had a hard time socially, combination of withdrawn behavior and sensory-seeking behavior: he's either by himself or trying to jump on someone to get them to play with him.

    At 3, he aged out of early intervention services and began receiving school-based services in pre-school, then kindergarten. He had an IEP, but he is so smart and met his goals so well that he started 1st grade this past year without an IEP--big mistake. He had behavior issues almost from the outset and wouldn't sit to focus on any academic work. The fall was a total loss. In January, we got an IEP back in place, which helped tremendously, but still had significant social/behavioral issues throughout the year. If we didn't have such a great elementary school who was really committed to work with him and us, he would have been out on his ear.

    He's also been on medications for the last two years. We have a psychiatrist who first worked with our older son, who has mild ADHD and is impulsve. Vyvanse worked great for "Sam"--giving him the mental room to focus and consider his actions before committing to them, and we were hopeful we'd find a similar experience with Alex. Because the doctor believed some of Alex's aggressive behavior was anxiety-related, he started him on Zoloft first. We later added Concerta to help with the ADHD symptoms. Since then, we've gone back and forth, tweaking the dosages on those two medications when things seemed to be getting worse again. This past January, we switched from Concerta to Vyvanse and saw some improvement on the academic front, but not much change on the behavioral front.

    Things seemed to get worse after school ended, and we briefly tried upping the Zoloft, which didn't help at all. At the checkup where we considered increasing the Zoloft, the doctor also mentioned that we might need to consider another approach, perhaps either Guanfacine or Abilify. The Guanfacine would be an addition to what he's currently on; the Abilify would be a replacement.

    A week ago, he started a 1 mg dose of Abilify, although the doctor decided to at first keep him on the Vyvanse and Zoloft. I thought I saw a big difference the first 24 hours--calmer, more social, easier to reason with--but since then he's continued to exhibit the same negative behaviors, with little to no impulse control (which is the aspect of his behavior we are most concerned about right now). When he does something he knows is wrong and is caught and disciplined (time outs, loss of play privileges), he is first mad, then contrite, and then he goes and does the same thing later the same day. He even says that his brain is just not in his head--it's gone somewhere else.

    So I don't know what to do, but I know we've got to get a handle on this over the summer, or second grade is going to be another disaster. I don't know if Abilify is the right path but we haven't found the right dose yet, or if we should stop everything and then see what to add back in. With his prenatal and developmental history, I know he needs medications as part of a multilayered approach, but with him it's hard to pin down a diagnosis and course of action. Officially, he's ADHD, but many of his symptoms are consistent with Fetal Alcohol Syndrome (FAS) and Asperger's.
    It's not that we haven't tried environmental interventions as well as medications. All four of our kids are adopted, three of which we fostered, and three of the four are special needs, so we're well-versed with the world of therapists of different stripes (SLPs, OTs, PTs), and I'd like to think I know what I'm doing, but with Alex I've hit a wall (not literally, at least not yet). I'm writing both to get this off my chest and to ask for help. If there's someone who's been where we are and has some wisdom, I'd love to hear it.

    P.S. even though I know the alphabet soup of therapy acronyms, I guess I'm a newbie here and don't know what difficult child or easy child means in the context of these discussions.
    Last edited: Jun 29, 2011
  2. wintak

    wintak New Member

    Hello and welcome. Glad you found us and yet, sorry you had to find us. Lots of great advice and things to ponder. My son hasn't been on any of the drugs you mention except Concerta which I didn't think did a darn thing. The teachers said they saw a difference but by the time he came home after school it had worn off and I got the wrath.

    I'm sure you'll get some great tips here.
  3. Marguerite

    Marguerite Active Member

    If you roll your cursor over the acronym, a question mark appears. Click and it should tell you what it means. difficult child means Gift From God, the kid that brought you here. easy child means Perfect Child, although we know none are perfect really.

    It sounds like something really serious is going on and not just impulse control. The medications may also be part of the problem - we're just weaning difficult child 3 off an anti-anxiety medication which, now he's getting off it, he now says was making him "fuzzy". Especially with a younger child, they don't know what normal is and so can't really tell you if the medications are not helping or causing problems.

    The WOW factor is a good one to watch for, with medications. If you start the kid on a new medication and see, "Wow! What an improvement!" then you keep using it. But if there is no huge wow factor, you need to reconsider whether the medication is worth the hassle and expense.

  4. HaoZi

    HaoZi Guest

    Hello and welcome. Dropping in quickly to say hi and hang in there. There's some parents of Fetal Alcohol Syndrome (FAS) kids here, I know they'll have some good info for you. Hopefully your school has learned that intelligence has nothing to do with these kids needing an IEP. I got the whole "but she's too smart" for this, that, and the other until the behavioral issues took the front line over her charisma and intellect.

    If he's also an Aspie that will often become more apparent in the next few years as more complex social interactions are expected from him. Social training can be a huge help, and it's not a go once class kind of thing. Don't give up if it doesn't take right away, either. Two years ago anger management and social classes were a waste of time for my kid, nothing came of it but more grumpiness. She's trying them again this summer, and *ding ding ding* we have progress. How much of that she'll hold on to and use when it really counts is anyone's guess, but right now it is helping.
  5. ready2run

    ready2run New Member

    my difficult child has a similar history. it really bothers me as his BM was my neighbour when she was pregnant for him and used to carry around a mirror to do lines on with her everywhere she went. i also allowed her to drink(one or two light coolers) in my home knowing she was pregnant. well, soon after moving out of her building i ended up with husband and not until 2 years after that did we find out that he was the father of this child. she is now denieing her drug use and we can't get that fit into the diagnosis without proof(an admission from her) of her use. he came to us from foster care after being bounced back and forth from BM to foster homes. he was already 2 at the time and once he came to our home it was obvious he had problems. right now we have him on 2mg risperidone 2xday. it seems to be helping alot but there are still alot of issues. he is also one to make holes in walls and is generally creative in his destructiveness. i wish i had more answers for you. we are also dealing with two other special needs kids that are mostly manageable, some difficult child's are just more difficult than others.
  6. smallworld

    smallworld Moderator

    Hi FredGeorge,

    Welcome! I'm glad you found us.

    Have the behaviors actually worsened since he started Zoloft and Vyvanse and then Abilify? Or are the behaviors about the same? These are important questions because some kids do a lot worse on stimulants and antidepressants. Furthermore, Abilify can be an activating atypical antipsychotic rather than a sedating antipsychotic. So there's a chance your son's medication mix is revving him up rather than calming him down.

    Has your son ever been evaluated by a specialist in Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE)? It might be helpful in terms of determining a treatment plan for him.

    Again, welcome.
  7. FredGeorge

    FredGeorge New Member

    It's hard for me to answer this question. In general, he has tolerated any of the medications we've tried well--we were told which side effects to be watchful for, and haven't seen him have a negative reaction. He's been on Zoloft for 2 years, and it's either been effective (less aggression) or after a period of time seems less so, at which point we've upped the dose at intervals (several months or close to a year at each level). Each time, there's been an initial improvement that seems to offer diminished returns over that several month period. Kinda the same story with the Concerta and Vyvanse. The Vyvanse seems to have worked better than Concerta. The aggressive/impulsive behavior I described began to worsen about a month ago, so when we had a recent checkup, we decided that, since it had been quite a while since we'd upped the Zoloft, that we'd try that. We didn't really see any improvement, and his level of activity seemed to increase, which we knew could be a side effect, but as I'm sure you can appreciate, how do you judge? Normal doesn't seem to really exist in our house, so I don't always know what to attribute symptoms to.

    difficult child's main symptoms that we've been trying to address through medications are ADHD (Vyvanse), Aggression (Zoloft), and Impulsivity ( ? ). Because we were told that the Vyvanse and Zoloft can help with impulsivity but that it's not their strong suit, we're at the point of either trying to add something like Guanfacine to specifically address impulsivity, or to switch to Abilify, with the hope that it could address all 3 needs. I can't say his behavior has worsened in the week we've been on Abilify, but it hasn't improved, either.

    We don't have a specialist in Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) where we live, and from what we've learned over the years, we wouldn't be able to get a definitive diagnosis without an admission of use by the BM, who's long been out of the picture. Two of our other kids (different BM, similar prenatal scenario) also have Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) symptoms, and also wouldn't be able to be diagnosed as such, so we've just operated on the premise that they do have it to some degree and have educated ourselves accordingly.

  8. JJJ

    JJJ Active Member

    in my humble opinion taking 1mg of Abilify and expecting it to tame aggression is like taking a sip of beer and expecting to be wasted.

    What doses of Vyvanse and Zoloft is he on? How big is he?

    (All of mine are also adopted from foster care. One with confirmed in utero exposure to alcohol and cocaine. All 3 others 'suspected' but not confirmed.
  9. AnnieO

    AnnieO Shooting from the Hip

    Hi there!

    Jett was diagnosis'd with Fetal Alcohol Syndrome (FAS). I think it's more effects, but that's up for debate as I am NOT a doctor. However, he's the sweet one... I'm pretty sure Onyxx was exposed to prenatal alcohol, and possibly drugs as well. We'd never get an admission of this from BM, but when all the clues are there and a neuropsychologist determines it... There are other issues as well, but this follows.

    in my humble opinion - I was on Lexapro for almost a year. At the beginning, it was a wonder drug for me. Later, not so much. So my doctor switched me to Zoloft - and it was like I wasn't taking anything, like I was back on the NON working Lexapro. Due to other things, I stopped taking it. Surprisingly, I've done better OFF of antidepressants in the last 18 months.

    Jett was on Concerta, and it was horrible. Horrible. Sleepwalking, severe brattiness... Back off of it, and he's doing much, much better. Onyxx, on the other hand, wanted stimulants - that was definitely a NO, as her whole "I think I have ADHD too" stopped entirely when I talked to husband (in her hearing, LOL) about NON-stimulant ADHD medications. She responded really well to risperidone... But refuses to take it. So... *shrug*

    Based on what you've said, the medications may be helping, but there's more that needs to be done, or you will be ripping out your hair. Have you have him evaluated by a neuropsychologist at all?
  10. keepongoing

    keepongoing Guest

    My son is on the autism spectrum. I also work in a school with students with Fetal Alcohol Syndrome (FAS) and the behaviors you describe (impulsivity, 'stealing' and 'lying', hyperactive, very sweet heart but violent temper, sensory integration problems, needing high level of supervision, little learning from consequences, constant rifling through things and leaving trails of mess and chaos) sounds very familiar. No real advice beyond that you are doing the right things. It is tough. In my state you do not need an Fetal Alcohol Syndrome (FAS) diagnosis to receive specific services. My district has a few programs specific to kids with Fetal Alcohol Syndrome (FAS) but most kids are receiving services under Autism Spectrum Disorders (ASD) (autism spectrum) since behaviors can be similar and kids with Fetal Alcohol Syndrome (FAS) tend to profit from the same type of interventions that work for kids on the Autism Spectrum Disorders (ASD) spectrum.

  11. dmf

    dmf New Member

    Hi FredGeorge,
    Just wanted to say hi and sympathise. My own son is 8 and sounds very similar in behaviour to yours. It is hard and exhausting, but we will get there in the end with lovely functioning grown up boys (at least I have to keep telling myself that).
    I am only new to this site and so far have gained some comfort from other peoples stories and empathy.

    Keep your chin up and take one day at a time. You and your wife sound amazing and so loving and caring. Your kids are lucky to have you both.
  12. FredGeorge

    FredGeorge New Member

    Interesting response about 1 mg of Abilify. It has been our first week, and we were given a sample pack of 7 2mg tabs and told to try him at 1mg/day to see how he tolerated it, then consider upping to 2mg. I'll be calling in tomorrow to check in and see where we go from here.

    He's on 40mg of Vyvanse a day and 50mg of Zoloft a day. He's 7 and is scrawny, though eats all the time--weighs 39 lbs. Sometimes hard to explain to 11-yr-old easy child why he and other difficult child (12 and also scrawny) can have all the milkshakes they want but she can't--though we've explained that, with their medications, it's important for them to get some extra calories.

    Had an interesting talk with difficult child in the car today. He volunteered that he has frequent talks with his brain, where it tells him "Alex, do this," or "Alex, take that." I asked him if it was easy or hard to say no to his brain, and he said he didn't know because he'd never done it. I explained that the new medicine was supposed to make it a little easier to say no when he didn't want to do what his brain wanted him to do, and I asked if he could tell any difference in the last week. He said (very seriously), "I think there's some difference, but I think there's still some ways to go (holding up his thumb and index finger to indicate how far he thought he still had to go).
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there. Welcome! We're always here to listen.

    I adopted four kids (five, but one was so dangerous he had to leave). I have to go along with thinking of fetal alcohol effects/syndrome. Actually, it has a new name now: Fetal Alcohol Spectrum. These kids are very impulsive and are not always capable of learning from experiences...but I'm sure you know all this. Hope the medications help. With these types of kids...sometimes it does/sometimes it doesn't. Sounds like he's your most challenging one.

    Glad you're here and keep us posted! :)
  14. FredGeorge

    FredGeorge New Member

    Thanks, everyone, for your encouragement and input. We started doing 2mg of Abilify yesterday, and it seems to be working better. He had an excellent night at church last night--willing to take turns, polite to other kids, etc, and right now he's cuddled up with other difficult child on the couch, watching TV together--emphasis on cuddled, together, and JUST watching--not tormenting or doing 5 other things at the same time. This doesn't happen much around here. We'll see if it lasts, but it looks promising.
  15. TerryJ2

    TerryJ2 Well-Known Member

    Hi, I'm late to this but wanted to welcome you.
    He sounds cute, the way he can hold a conversation and discuss his brain. :)
    I'm glad that you had a good night at church and with-TV and taking turns. Maybe the Abilify is already working? Wow.
    You've got your hands full with-3 kids with-Fetal Alcohol Syndrome (FAS). Amazing.
  16. Nomad

    Nomad Guest

    Welcome. Haven't read all the posts...perhaps someone has already told you that difficult child stands for "gift from God." I think information is provided about this and other acronyms on the main page. Also likely mentioned is that the ADD/ADHD medications can be activating for some children and therefore should be watched carefully for their potential side effects.
    Abilify has been a good medication for many of our children and sometimes needs to be increased. diagnosis's are not always accurate on the first "go around." Some kids are trickier than others and so their diagnosis, treatment plan and medications take a long time to adjust and even after you think you got a good handle on things, additional adjustments are needed. Along with the more "traditional" diagnosis's, some others, especially when it comes to adoption might include Reactive Attachment Disorder (RAD) and Fetal Alcohol Syndrome (FAS). If you are unsure if your doctor has considered all angles and/or if your doctor isn't working well with you, you might consider getting a second opinion. Additionally, if not now, then sometime in the near future, you might also consider talk therapy for your child and/or family therapy. If Fetal Alcohol Syndrome (FAS) has been confirmed, make sure you get LOTS of support.
    You might consider individual counseling for yourself.
    These diagnosis's/situations are not easy for anyone.... Hang in there. Sending goooood thoughts.
  17. susiestar

    susiestar Roll With It

    You have gotten great advice. It sounds like Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) to me, at least as much as other things, but that is at a distance and with-o experience living with someone with Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE).

    I would urge you to stop the zoloft. It is an odd medication. About six years ago my difficult child had been on it for about 9 months. At first it was great. Wiz is unipolar depressive with NO manic symptoms and actually has needed three different types of antidepressants to stabilize the depression, but he is now a easy child almost completely. At the time he was aggressive and the zoloft seemed to help. But after a couple of months he got mroe and more aggressive and withdrawn. Stopped enjoying anything but his obsession (violent pokemon and d&d stuff - and only the violent stuff). Another couple of moms here with kids taht were a few years older were seeing the same thing, but only in their boys. I have seen it on six boys that I know in real life through family or school, none related to us. There were I think four here on the board including WIz where we all saw it at once. Years later (two years ago) my mother asked me about it. Gfgbro's doctor put him on it (he trades yard work for psychiatrist services) and he became even more aggressive and unpredictable and she wondered because she remembered me taking Wiz off for some specific reason.

    It just seems that after a few months, two or three, males can get more aggressive and depressed on zoloft. Luvox, closely related to prozac, and many others have NOT done that to him. This is, of course, anecdotal, but it is something to watch for. I don't know that many kids on medications so to know as many as I do who reacted that way to zoloft and they were all male, well, it is something to be considered, in my opinion.

    Abilify maybe a good choice. It can be very good for aggression. I hope it helps.