Failed medications, starting from scratch...

Discussion in 'General Parenting' started by gcvmom, Jun 16, 2007.

  1. gcvmom

    gcvmom Here we go again!

    difficult child 2 had a really rough year in 4th grade -- thank goodness it's finished. He is lucky to be blessed with a lot of smarts -- his grades were great but his behavior marks were AWFUL. His ADHD medications and mood medications have not worked, so we have stopped everything and will start from scratch next week.

    In November he started having trouble with stimulants (started on Adderall five years ago and went from Concerta to Focalin XR to Daytrana) not working -- we seemed to continuously titrate up until it got too scary and the medication was acting like water, then we switched to a different stimulant.

    He was also on Risperdal to help with his angry outbursts and "stuck" or "obsessive" thoughts, and for a while it seemed to help a bit, but then the rages and obsessions started getting worse . So we dropped the Risperdal and added Abilify, gradually working up to 15mg.

    Started showing problems with jitteriness, nervousness during the day, and ADHD symptoms were becoming worse, along with the mood stuff (especially if he thought you would prevent him from doing something he was "stuck" on -- then he'd have a nuclear meltdown for about 20-30 minutes, no matter where you were). In May we dropped Abilify and added Tenex, but as that was titrated up he became more and more talkative and fidgety.

    On Wednesday this week it peaked -- he really seemed to have the typical "flight of ideas" -- talking a bluestreak with barely a 30 second pause between disjointed verbal eruptions, and his body was constantly moving. He looked like someone on crack -- no joke. We were at the therapist's office and before going in, he told me his head felt like a beehive with lots of bees buzzing around that had eaten too much sugar! Therapist was alarmed enough to call psychiatrist to report it.

    psychiatrist wanted to add Abilify back to the Daytrana/Tenex mix, as well as increase the Tenex. I felt so overwhelmed and so fed up with the list of medications we've tried over the past five years that I asked to take a break and start all over, which psychiatrist agreed was fine to do.

    No one is saying BiPolar (BP) diagnosis yet -- just that it could be a possibility down the road.

    I'm just so frustrated because I feel like we've spent five years spinning our wheels with trials of so many things without having found the right combo that works! Meanwhile, difficult child 2 has NO friends, and has pissed off his siblings so much even they don't want anything to do with him...and even I'm near the end of my patience and it's only day three off medications (!) Right now he's intrusive, distracted, paces or just wanders around waving his arms in the air or running them along the walls, inattentive, goofy, hyperactive, reckless, careless. He acts like he's 4 instead of 10. He is exhausted by the end of the day and falls asleep FAST (so not like he's needing LESS sleep like I read about for typical BiPolar (BP)), and in the morning he has a hard time waking.

    Anyone have any similar experiences? It seems like even when they work, the stimulants make him too anxious -- he tried Zoloft in first grade with Concerta and it made him manic, so psychiatrist doesn't think that class of drug would be helpful at all. And now the stims don't last very long and when he comes off them he's horrible to be around.

    psychiatrist is so dang swamped with patients we can't get enough face time to discuss this at length, so I'm left relaying messages through voicemail and his assistant. Fortunately, we've found a fairly decent therapist who is trying to help sort this out, but he's no MD.

    I want to put all his rx bottles under my pillow so the psycho-pharma-pfairy will come and leave one magic pill to make it all better :wink:
  2. flutterbee

    flutterbee Guest

    I'm sorry you're going through such a hard time. I'm no expert of course, but what you describe makes me think of mania. Has your son had a full psychological evaluation? It may be time to get a multi-disciplinary evaluation or an evaluation by a neuropsychologist. At the very least, a switch to a psychiatrist who will take the time needed may be in order.

    (((HUGS))) It's not easy.
  3. AllStressedOut

    AllStressedOut New Member

    My 11 yo. son has very similar problems. If you find a magic pill, fill me in. He also doesn't have any friends and has also pissed off his siblings so much they avoid him like the plague. He's on Straterra, Zoloft and Seroquel. He just went in to be removed from Seroquel and put on another medication for sleep aide. Of course the name fails me now at 3 am.

    I'm just hoping to do well enough that when they are grown, they still want to come home and visit sometimes and they don't spend their adult life in therapy over how badly I messed them up!

    Wish I knew what to tell you to make it all better...I hope it helps to know your mysery has company.
  4. smallworld

    smallworld Moderator

    gvcmom, your experience sounds similar to what we've gone through with our difficult child 1.

    A few questions: When your difficult child 2 had his recent "beehive buzzing" episode, what medications/doses was he taking? I ask because high doses of stimulants can cause this type of reaction, even if the child does not have bipolar disorder.
    When he had his reaction to Zoloft, what specifically did you observe? How much Zoloft was he taking? How long had he been taking Zoloft before the reaction occurred? I ask because I recently had the opportunity to talk with a child psychiatrist who researches childhood anxiety and bipolar disorder at NIMH in Bethesda, MD. He said some reactions to SSRIs are not true mania but rather related to the specific medication or dose prescribed.
    Has he ever been evaluated for an Autistic Spectrum Disorder? I ask because you mention he has no friends and he gets "stuck" or "obsessive" thoughts. These symptoms can indicate Autism Spectrum Disorders (ASD). And some kids with Autism Spectrum Disorders (ASD) are very difficult to medicate, and instead do better with intensive therapeutic and school-based interventions.

    A few thoughts for you:
    When a child undergoes a medication wash, there is frequently a period when the child's behavior seems worse. After a few weeks, things tend to settle down and you are able to get a true read on baseline behavior.
    Anxiety can frequently be confused with ADHD. You are right in observing that stimulants exacerbate pre-exisiting anxiety. In some cases, long-term use of stimulants can lead to depression.
    When you struggle with the medication roller-coaster for five years, it's time to get a new evaluation (probably with a neuropsychologist or a multidisciplinary team at a university or children's hospital) to make certain you know what you're dealing with. And it's probably wise to get a second psychiatric opinion as well.

    In terms of my own son, he did have a prolonged intense manic reaction to Zoloft after taking it for three weeks. Even after discontinuing Zoloft, his nightly raging, violence and aggression toward family members continued for two months until his psychiatrist prescribed Depakote. After taking Depakote for six weeks at a therapeutic level, the reaction stopped dead in its tracks. My son has been able to tolerate low doses of stimulants for inattention at school, but his tics and anxiety increase with higher doses.

    You have a lot on your plate. I hope you get some answers soon.
  5. SRL

    SRL Active Member

    When nothing has worked for years, my first thought is to do a total reevaluation with a team that hasn't laid eyes on the child before. We've seen way too many missed or parital diagnoses come through the forums.

    I have a kiddo with Autism Spectrum Disorders (ASD) traits who needed medications for anxiety and while the first trial worked for a time, side effects became unbearable so we had to discontinue. The second time we used Zoloft and it was a total disaster by day 6. As smallworld mentioned, we did see manic behavior throughout the very heightened anxiety episode but when we added zoloft it went so far over the top that it made me start questioning whether he had BiPolar (BP). Once the medication reaction wore off and he was stabilized from anxiety and all of the negative effects from the downward spiral were gone (I'm sorry to say but it took a year) all thoughts of BiPolar (BP) left my mind. medications were such a failure and so disruptive to our familylife (the sibs begged us not to go there again) that we went to extreme measures on other interventions and it's been very successful. But our original diagnosis was right on target so we had a good grasp of the issues at the time.

    I'd also mention that sometimes manic looking behavior is a sensory seeking behavior--what kids with this issue need isn't the proper medication but to have a designated plan for handling their unique sensory needs. This direction gives more options, for instance, the most hyperactive child I've ever seen (even while on full dose of Ritalin) was able to sit in the desk at school by having a gel ball that he squeezed nearly all the time.

    If this were me I would want the works on a child with this history and no progress: pediatric neuropsychologist to do a full battery, neurologist, occupational therapy, speech to see if there are social issues getting in the way of his forming friendships, at minimum. in my opinion, any child who hasn't responded to medications after this long deserves the benefit of the doubt that maybe doctors have been barking up the wrong tree.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I agree with SRL. I'd take him to a neuropsychologist. He has symptoms that could be related to:
    1/ A bad reaction to the medications he is taking/medication induced mania
    2/the mania side of childhood bipolr
    3/he has some autistic traits that may or may not be medication related, and that should be looked into also. His sensory issues can not be medicated away. He needs interventions for that. Obsessions are part of Autism Spectrum Disorders (ASD), but can also be seen in other disorders. What kind of obsessions does he have? My son would be unable to stop doing Thing A to transition to Thing B. That would cause a Pervasive Developmental Disorder (PDD) meltdown.

    I am one who looks elsewhere if a certain diagnosis and treatment has not worked. Professionals do misdiagnose and a totally fresh opinion never hurts. I favor neuropsychologist testing.

    Good luck!
  7. pepperidge

    pepperidge New Member

    Ditto everything that has been said above. Your child sounds like a combination of my two.

    Here's where we have been. difficult child 2 has tried stimulants of all sorts (made him more anxious, irritable, whiny, cried etc), Tenex (provoked manic reaction), various mood stabilizers to little effect, and Abilify. Abilify is the only one that worked at low dose. Too high, too many tics, and other undesirable side effects. He tends to be impulsive, irritable, and to meltdown when he doesn't get way. He also gets very stuck. Has been evaluated up the wazoo, no autistic spectrum stuff. Probably has mild Fetal Alcohol Effects (FAE) and who knows what else. we are entertaining the idea of a medication wash too. only class of medications we haven't tried is SSRI and the psychiatrist doesn't want to go there.

    difficult child 1 had major anxiety issues, that seemed like ADHD. We had good results with Adderall, but rebound was really bad and didn't deal iwth depressive mood symptoms. Prozac made him too disinhibited, we had to raise Adderall to deal with that, but that provoked too much anger and aggression. Also tried Abilify but didn't help. Finally got a good psychiatrist, and finally got on the right mood stabilizer (Lamictal) and he has turned around. We still find that the low dose of Adderall really improves concentration at school and his general ability to go along with the flow so to speak.

    Don't know that this helps you. But I was struck reading your medication history that you are seeing the same kind of cycle that we did with stims, SSRIs, Tenex, etc. I think you are right to consider a medication wash, and then I would seriously discuss a trial of a mood stabilizer. Try one medication at a time so you can see. I don't think either of my kids fits the typical profile of BiPolar (BP) at all, yet they clearly have mood issues.

    There has been some discussion of a new diagnostic category under research called severe mood dysregulation (search in archives) that seems to fit both of my sons better than the BiPolar (BP) label. In any event I wouldn't get too hung up about about the diagnosis at this point (except to rule out autism), but many of our kids exhibit a certain inflexibility shall we say that isn't autism.

    I guess my question is since your psychiatrist seems to want to go the stimulant-SSRI type route, is he/she comfortable with prescribing mood stabilizers? Does he have lots of experience with them? Is he kind of anti-BiPolar (BP) type diagnosis's?
  8. gcvmom

    gcvmom Here we go again!

    It just may be time to get another pair of eyes to evaluate him...

    While I have tremendous respect for our psychiatrist, and he's often a speaker for our local CHADD group -- in fact, just gave a very good talk on BiPolar (BP)/ADHD and how they are similar, different, can occur together, etc. -- I think he's maybe stumped by this as well.

    We've got a university hospital with a children's hospital in it, so I think I'll try there first. There aren't any "neuropsychs" listed, but there are neurologists and psychiatrists... so who do I see?
  9. gcvmom

    gcvmom Here we go again!

    Knowing that you all understand is sometimes enough to get me through the day :smile:

    I was a baaaad mommy today -- not enough patience to go around. Tomorrow will be better.
  10. flutterbee

    flutterbee Guest

    Both. Plus a child psychologist, an Occupational Therapist (OT), and a neuropsychologist if you can. On the FAQ board there is info on a multi-disciplinary evaluation.
  11. gcvmom

    gcvmom Here we go again!

    When he described his little "beehive" head, he was on 40mg Daytrana and had taken 1mg Tenex in the morning (dosage 1mg twice a day... this was his second week into it, titrating from 0.5mg twice a day for a week). His body twitching and flood of speech had only worsened on the higher dose of Tenex, although his teachers have commented for several months that he often seemed nervous and shaky. Could be the Daytrana is too high.

    Back in 1st grade when he tried the Zoloft, and my memory may not be perfect here, I think it was after less than a week when I saw the "manic" behavior: hyper-hyperactive (not jittery like now), taking more physical risks (climbing way too high in a tree, jumping from high places (top of swing set), swinging baseball bats carelessly around others (I was afraid to let him out of my sight when other kids were around), lots of "sexual/bathroom" talk and handling his genitals, aggressive, VERY impulsive, (shorted an electrical plug in his room by laying a metal necklace across the partially exposed prongs -- blew a fuse in our house -- I finally realized what caused it a few days later when I saw the burn marks on his bedroom wall). Got stuck on wanting me to buy him a particular pair of shoes and once he got going would not stop talking about it. The kicker was when we were at his t-ball game and he started to tell me about something and said "Can you hear them mom? Can you hear what they're saying?" Freaked me out because I could not figure out who or what he was talking about.

    He did really well on Concerta and Risperdal for about two years. It was only this past November when things noticeably began to change.

    I think another opinion would be worth pursuing now, as much as I like and respect our psychiatrist. I don't seem to find any "neuropsychs" in my area, but there are plenty of neurologists and psychiatrists... where to turn first?
  12. gcvmom

    gcvmom Here we go again!

    Got it -- thanks! :smile:

    Well, he goes for his third session with the child psychologist next week -- and since he'll have been medication-free for a week, hopefully we'll get a good idea of where to start.
  13. gcvmom

    gcvmom Here we go again!

    Funny that you and some others here would mention Autism Spectrum Disorders (ASD). The child psychologist said something about Asperger's, but then in the same breath discounted it because difficult child 2 was able to do X (sorry, but I just don't remember the specifics right now).

    Anyway, he's always had sensory-input-seeking behaviors. Before his ADHD diagnosis, when he was about four years old, I started taking him to Occupational Therapist (OT) because he was ALWAYS trying to do headstands and for several months had begun showing similar signs that difficult child 1 had shown at that age who already had the ADHD diagnosis and was doing Occupational Therapist (OT) and ST. Occupational Therapist (OT) helped him a bit, but after a couple of years they discharged him saying he was doing much better and I could continue some of the things they'd taught me at home. Well, I'll be the first to admit I have a very hard time following through on that kind of thing.

    Plus, he went for "vision therapy" (turned out to be a waste of money) -- he was having trouble tracking, and is ocular fine motor was a bit delayed. Lo, and behold! When we started medications for ADHD, he was cured! Even the optometrist was amazed at how dramatically his condition improved once he'd started the stimulant.

    When his stimulants were working, this kid was in great shape. For some reason, he's developed a tolerance, or whatever you want to call it -- AND he has a hard time with his moods now.

    I agree, it's time for some fresh eyes to look at him.

    Thanks so much!
  14. gcvmom

    gcvmom Here we go again!

    Our psychiatrist does have experience with BiPolar (BP), and he is very well-known in our area for his expertise with ADHD. He recently spoke to our local CHADD group about BiPolar (BP)/ADHD and how they often occur together. I went because I figured I'd learn more than I could in our 45 minutes with him every three months! Very informative.

    I wouldn't say he's ANTI-BiPolar (BP) diagnosis, just cautious about being too quick to jump to conclusions, especially since ADHD and BiPolar (BP) share many symptoms, and we already have ADHD in difficult child 1 and husband, both whom respond very nicely to stims (although husband DOES have anxiety that seems to have evolved into spontaneous mini-panic attacks over the past four years).

    The psychologist was actually thinking to suggest adding Topamax or Tegretol to the mix about three weeks ago when he met difficult child 2 for the first time -- his diagnosis for difficult child 2 was Generalized Anxiety Disorder (GAD) along with ADHD.

    I think I may ask the psychologist for some suggestions on who else to see in our area for a second opinion, especially since he used to work at our local children's hospital.
  15. gcvmom

    gcvmom Here we go again!

    The psychologist did feel that what he was seeing was a medication-induced mania. But next week he'll get to see difficult child 2 medication-free, and so it will be interesting to get his interpretation of the situation.

    As for obsessions, it usually goes like this: difficult child 2 gets it into his head that he wants to acquire or do something and he does not let go of that thought, and will talk about it a lot, and will get very mad if he thinks you are not going to facilitate this thing for him, getting worked up and arguing and screaming and jumping up and down or being physically violent to the point of a nuclear meltdown that can last 20 to 30 minutes. This was going on pre-Tenex (was on stimulant and Abilify at the time), and typically would peak when stims had worn off or if they were not working well for him that day. A few years ago when he was on stims and Zoloft, he was stuck on wanting to get some special shoes. He didn't get violent or mad, but would cry and get very emotional if he thought things weren't going to go his way. After Zoloft, he went on Risperdal, and that helped for some time, but we had to increase his dose and when it was approaching 4mg and he was still having problems with emotions (crying, getting frustrated a lot), psychiatrist switched to Abilify.

    He still got this way a little bit on the Tenex, but no where near as severe when on the stims and Abilify.

    I probably would have sought help sooner, but the past year and half was consumed with difficult child 1's Crohn's disease diagnosis, treatments, and he was supposed to have major surgery next week but it was cancelled at the last minute since tests showed his condition had improved dramatically. What a blessing for everyone, since difficult child 2 REALLY needs my attention now!
  16. SRL

    SRL Active Member

    I would go for the neurologist plus go beyond the local hospital to find a neuropysch. If there's not one in the area insurance companies will often cover someone out of the system if you have a referral. You will rarely get as thorough of an evaluation from a psychiatrist and you've been that route already.

    If some AS symptoms do seem to fit, I would research that more fully just to be sure. The co-author of one of the most recent diagnostic tools for AS (the ASDS) told me that there's a lot more variation seen in AS than the diagnostic criteria suggest. Also, if he does lean in that direction but falls short of the criteria or is atypical, you can still find a ton of good help from that camp. Mine fits that description but thankfully the first diagnostician we saw put us on the right track. Also FYI, there are kids with ADHD who brush up against the spectrum.

    Whatever it is that is that's going on, I'd get the works done and get as clear of a picture as possible.
  17. smallworld

    smallworld Moderator

    A few thoughts about the medications:

    While the maximum dosage of Daytrana allowed for kids 6 to 12 years old is 60 mg, there is a good chance 40 mg is too high for your difficult child. Stimulants are dosed by clinical response, not by weight or age. So if a kid starts getting jittery, talking too much, acting like he's on crack, that reaction is consistent with too high a dose. It's like when you or I drink too much coffee (another stimulant). We get jittery, high-strung, too talkative. Same kind of response.

    There are some kids (about 15 percent) who don't respond positively to stimulants, even if they have ADHD. Then there are some kids who don't respond positively because they don't actually have ADHD, but another disorder whose symptoms mimic ADHD. And then there are some kids whose attention increases on stimulants, but whose mood is affected negatively. My own son falls into that latter category, although he has done the best on low doses of Focalin XR, which we use for school days only.

    In terms of Zoloft, when I recently spoke to the child psychiatrist who is a researcher at NIMH, he said there are three kinds of common negative reactions to SSRIs. First, within days the child becomes impulsive and more active. This reaction is related to the medication and/or dose, and the reaction stops when the medication is discontinued. This reaction is not an indicator of bipolar disorder. Second, within days the child experiences auditory or visual hallucinations, again related to the medication and/or dose. The reaction stops when the medication is discontinued, and again is not an indicator of bipolar disorder or schizophrenia. Third, after weeks (typically 3 when the medication truly kicks in) the child becomes aggressive, violent, in "mission mode" and/or suicidal, and the child rages for hours. Even after the medication is discontinued, the child does not settle down. This psychiatrist believes this latter type of reaction is more indicative of true mania associated with bipolar disorder and treats it as such. My son experienced this type of reaction after taking Zoloft for 3 weeks, and it did not stop for months until he was prescribed a mood stabilizer (Depakote). Although we will not know for certain whether he has bipolar disorder until he gets to the other side of puberty, his psychiatrist is treating him as such because of his symptoms.

    In your shoes, I would not want to trial new medications until you are more clear about what you're truly dealing with. by the way, a neuropsychologist is what you're looking for, and they are frequently part of the Depatment of Psychiatry or Psychology at large teaching and children's hospitals. They may not be advertised as such, but if you call those departments, the staff there may be able to help you out.

    Hope you are able to get some answers soon.
  18. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Before you discount Aspergers for bipolar (or ADHD), let me tell you that psycologists tend NOT to understand Aspergers. For example, they may think because a child understands a joke, he can't be Aspergers. That's so NOT TRUE. I know many Aspies since my son is on the Spectrum. Also, please note that bipolar mimics Aspergers in many kids, so you REALLY need a neuropsychologist to figure out what's going on. My son was on more than ten medications. He is better OFF medications. The stims and antidepressants only made his symptoms worse. I suppose he could focus better--kids have been using stims for eons to study for tests--but his behavior was so aggressive and off-the-wall, in my opinion, it wasn't worth it. Both kids with bipolar and Autism Spectrum Disorders (ASD) can't focus well, unless they are very absorbed. The only way to pick apart what disorder is what is to see a good (and I mean one with a good rep) neuropsychologist. Psycologists are not trained enough and don't do extensive testing. We've been there done that with MANY Psycologists without the "Neuro" training, and it just didn't help us. Psychiatrists may or may not understand Autism Spectrum Disorders (ASD). Ours didn't and said my son had bipolar and put him on HEAVY duty mood stabilizers. I disagree with even going there until you have a good, 8-12 hour neuropsychologist test. You could be giving the kid the wrong medications. Obviously, whatever he is on now isn't working. We had to jump through many hoops to get our son to where he is now--happy and functional, albeit "quirky." He is still finally doing great. I strongly urge you to go the neuropsychologist route and not necessarily believe that the psycologist understands Autism Spectrum Disorders (ASD). They don't have that extra training in the brain that NeuroPsychs have, and they don't run the same sort of tests. Here's an online Pervasive Developmental Disorder (PDD) test. Good luck with whatever you decide to do. It's hard to figure our kids out.
  19. WNC Gal

    WNC Gal New Member

    We have spent the last ten months (our daughter's complete psychiatric history) watching her go through 10 separate hospitalizations, five different psychiatrists and too many medications to count. She is currently on 5+ medications - and they don't seem to be helping at all! She still has severe depression, is suicidal and has self-injurious tendencies. Now, in addition to her initial symptoms, she has acquired a host of new issues which I believe are all side effects of the medications such as weight gain (20+ pounds in just a couple of months), hand tremor, sleepiness during the day, communication hallucinations - she "mis-hears" what people are saying even though her hearing capability is perfectly fine; and most recently, several hallucinations about a horrible scene involving an injured little girl crying for help.

    We are approving her trial on a new medication (Remeron) as this class of medication has not been tried before, but if she doesn't show any improvement - her psychiatrist is in agreement that it may be time for a medication wash now that she is in a safe environment (PRTC).

    Anyone have amazing results after a medication wash? One can always hope!
  20. gcvmom

    gcvmom Here we go again!

    I agree there's a possibility that 40mg was too much Daytrana, but 20mg and 30mg was definitely not enough.

    He did well on Concerta for a long time, but the dose started needing to be increased to get the same effectiveness.

    He does great on 30mg short-acting Focalin, but it only gets him about 2.5 hours of decent coverage. Whereas his older brother gets a solid 4+ hours on just 20mg. These two kids taught me a long time ago that we all respond differently to medications :smile:

    We've got an appointment at a university hospital for a nueropsych evaluation in about three weeks -- I just don't know how I'll last that long!