Janna's post has me thinking...

Discussion in 'General Parenting' started by totoro, Oct 20, 2007.

  1. totoro

    totoro Mom? What's a GFG?

    So reading some of your histories like MWM and SRL and Sara PA and Janna as well as a bunch of others... I am sitting here thinking OK we all seem intelligent. Although how much did we know in the beginning?

    What were the missteps in getting a missed diagnosis for some of you... how do we know if it is accurate if people like Janna can go through all of this and then get the diagnosis changed, does this also involve a changing child/hormones etc. Does this just happen sometimes?

    When we were starting, not very long ago, it has been a little over a year since we have honestly been looking for answers. The one Psychologist, who specialised in Autism, gave K the Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis, without barely talking to us, he gave us a shortened Vineland scale... never met K at that point. Told us she would need to be on Risperdal.He also told us she didn't need a psychiatrist! I was like what in the He11 are you talking about? He then went on to explain that the diagnosis really didn't matter, but to take his diagnosis because it would get us into the special services faster and easier!?!? Little did I know he was right!!! Ethical or moral maybe not, but he was right... and I don't believe she was or is truly in the spectrum, or at least that is not her biggest problem...
    She is basically textbook BiPolar (BP) from what the author of the Bipolar Child and psychiatrist1(From Chicago) have said...The author of The Bipolar Child said her symptoms present as a textbook BiPolar (BP) case...
    But psychiatrist1 saw her unmedicated... now psychiatrist3 has only seen her medicated. She is a different child medicated. He has taken his time to get comfortable with the diagnosis, I think he was trying to treat the ADHD first and now he sees that it is much more than that...

    I guess I am just wondering do most of you feel comfortable with your diagnosis's? What if it was changed tommorow? For me N seems more on the Spectrum right now than BiPolar (BP)... She may even just have sensory stuff and very high functioning Autism?
    But like SRL we have adapted our lives and home... alot of people don't get it, but they don't live it!

    I just am wondering out loud here... I mean I have the history... the family, myself... K presented all of the symptoms, even with the voices, those came out on their own, she brought those up herself, no-one prodded her. Her talk of wanting to die has been most times not during a rage, just slowly sinks into despair and depression... she has had the violent talk of dying also. When I think of myself as a kid and read the BiPolar (BP) books it is all so clear... scary but clear. And K is so much like me and the books, I wish she wasn't. I don't know which diagnosis is "better". For me to see all of the medications and the possibility of suicide and who knows what else... If someone could prove to me that she was not BiPolar (BP)... and Autistic, I might be happier. I know she might still need some medications...but. But I don't know someone with an Autistic child might feel the opposite? The suicide is always haunting me...I would rather take all of the diagnosis's away...

    I just don't know what these psychiatrist's saw or didn't see or were oblivious to?

    As a parent what could those of you who did have diagnosis's changed could have done differently? If anything? Could you have seen it before hand? Did you know deep down inside?
    Do you feel like the diagnosis is accurate now? Are there any of you out there that think your child's diagnosis is wrong????
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Your child, if hearing voices, likely has more going on than Autism Spectrum Disorders (ASD), however many spectrum kids also have bipolar. They seem to run together and often are both in the same families. But I'll relay how I feel about our diagnosis. since that's what you asked.
    I always felt my son was on the spectrum. He had a speech delay, he echoed, he rocked himself to sleep, he swaddled himself with clothes, and, yes, he had bipolar-like rages, but that is part of the spectrum too. He got better as soon as he learned to speak in complete sentences with seemed to happen overnight at age 4 1/2. He still has trouble with transitions and sensory stuff and he is fourteen, but he is much better. The bipolar diagnosis. ticks me off. Me and hub kept arguing against it and were told we'd be "bad" parents if we took him off the medications because he OBVIOUSLY had it. His birthmother had been a drug addict and that PROVED she was medicating bipolar. Of course, there is NO chance that she was medicating autism (uh huh).
    When I went to a meeting of parents that I met online, bringing our kids with us, they all noticed right away that he was NOT like their kids and a few asked about autism. LOL, I'll tell you a funny story about that meeting. My son was sitting on a chair playing his GameBoy Advance (hand held video system). One of the kids, a fifteen year old child who is obviously bipolar AND violent, wanted to get a rise out of him, so he picked up the front legs of the chair that my son was sitting on and kept waving the chair to it's back legs, up and down. Lucas was so into his games that he didn't even pay attention, and everyone was laughing. The fifteen year old got mad and dropped the front legs of the chair again and shouted, "What are you, retarded????" My son finally "came to" and looked at him and said, "Thanks, a LOT, N! You just made me die!" Then he went back to his Game Boy Advance. Seriously, he wasn't like the bipolar kids...lol.
    I will thank the parents who asked about autism them forever. They made me take a stronger stand and go see a neuropsychologist. I am positive we have the right diagnosis. He is just a typical Autism Spectrum Disorders (ASD) kid, unmedicated, and in no way appears bipolar. Since I *do* have a mood disorder, I can spot one quickly. This teen is even-tempered unless faced with an Autism Spectrum Disorders (ASD) challenge (like a transition). Then we hve to do it carefully. He still no longer rages. He is better off without medications than with them. They did nothing but sedate him, so OF COURSE he seemed like an angel. He could barely move, he was so drugged up. I think sometimes our kids seem better on medications because they are zombied out. Lucas actually does not act worse off of medications. He still has a basically sweet nature.
    Unfortunately, I think many kids AND adults are misdiagnosed. I recommend going to a neuropsychologist and beliving him the most. At least they try to do intensive evaluations. To me, that beats the hell out of listening to your symptoms and talking to the kid for an hour and pulling a diagnosis. out of the air. Bet if you took a survey here, most people are MOST satisfied with the neuropsychologist exams. At least they can accurately pinpoint problem areas of functioning and they aren't always medications happy. Really, I think many time there is a quick jump to medications before we even know what's wrong with our kids. JMO
  3. totoro

    totoro Mom? What's a GFG?

    I agree MWM-

    Our Nuero-psychiatric had all of the diagnosis's that we still have now, he also had ODD but we all know how that one is and since medications and behavior mods she is basically ODD free, for the most part...

    I didn't like his diagnosis it scared me, but it fit... he watched the videos he spent time with K, tested her and talked to her and us...
    husband fought the genetics... but the nuero-psychiatric said she is still exhibiting all of the signs of BiPolar (BP) even with out the genetic factor... it was just so hard to swallow at the time. I think for all of us.
    This has made it easier to deal with my own "stuff" though as well as husband... you want to be better for your kids...
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    None of these diagnosis. are a picnic for our kids, hon. We just have to hope for the best. I have bipolar and I've been stable for a long time. And medications are only going to get better. (((Hugs)))
  5. Janna

    Janna New Member

    Well, I think there are alot of misconceptions about what Bipolar looks like. In general, overall, at many places I go to speak to parents. Mainly, mania. That is in terms of Bipolar.

    Many of the diagnosis have similar things, like ADHD, Bipolar, Autism kids are all hyper. Many/most are inattentive. Many have Obsessive Compulsive Disorder (OCD) type tendencies. Many are self harmers (i.e. head banging).

    I know why my son has been given the diagnosis'es he has over the years. When he was 3, and the psychiatrist at that time said ADHD, what he saw was a very hyper 3 1/2 year old boy, bouncing from activity to activity in his office, and gave me a script for Ritalin. The only thing Dylan was doing, at that point, was head banging. And he had the speech delay. Maybe that psychiatrist didn't know much about Autism. He was a much older man (late 60's, if not older).

    I know why the psychiatrist in 2002 gave Dylan the Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis. Told me, go home and read up on it. I did. Some fit, some didn't.

    In 2006 I took Dylan to a neuropsychologist. He said Dylan was Pervasive Developmental Disorder (PDD), for sure, 100%. Recommended Occupational Therapist (OT), the school said "nah, he doesn't need that", but he did, and I allowed the school to tell me he didn't, and didn't follow through. That won't happen again, and yes, he's getting it now. Anyway ~ the neuropsychologist said he didn't know what to make of the diagnosis of Bipolar. I took that report, the whole 21 pages, to the psychiatrist that said Bipolar, and he said "he's entitled to his opinion". He was firm Dylan was hypomanic. This psychiatrist says no.

    I know parents that go on many message boards and talk and talk about how their kids are insane, crazed, raging, messes, and you'd think "oh my God, that sounds just like Bipolar". But until YOU are IN that HOUSE, seeing WHAT is leading UP TO the raging mess, you do NOT know anything about that child. I have friends who's kids are completely undisciplined, and they go to the psychiatrist and tell them they are firm, strict, rules, etc, basically lie, and the psychiatrist thinks the kid has massive issues, and really doesn't.

    That, by the way, isn't directed at anyone here, or to imply anything about anyone here. Let me get that out of the way now. Remember, I run a Childhood Bipolar Support page on MySpace with almost 400 friends now. So, yeah, I talk to alot of people.

    I feel comfortable with my son's current diagnosis because my son is under 24 hour a day, 7 day a week watch by 7 people on a team that he cannot get away from. The behavior mod is consistent, firm, strict, and there is nobody there that will give Dylan 2nd chances, or that he can manipulate, like any child would with a real parent. The staff do not have empathy.

    Having said that, these people are seeing my son at his finest. Yes, many, many children honeymoon. Dylan is still honeymooning. It's getting to the point now he can't hold it together anymore. He punched a kid on Wednesday. The kid kept teasing him. He kept teasing him. Dylan gave him 3 chances. Finally, Dylan walked up to the boy, calm as could be, told him "I gave you three chances, you didn't leave me alone" and punched him. Was he wrong? Dunno. Does that make him Bipolar, Autistic or anything else? I don't think so. He got the :censored2: of this kid bugging him. He told him. He warned him. Kid didn't listen. Oh well. Bet he won't do it again.

    I have alot of concern when I see a 4 year old kid diagnosed with Bipolar. I won't lie to ya. I'm not a psychiatrist, therapist or anything else, T, but that bothers me. Because yeah, look - 9 years later with my son, he's not Bipolar. And you know what? I believe them. I believe he's Pervasive Developmental Disorder (PDD) - with some mood stuff because of the inability to express himself, and he gets frustrated. That makes sense to me. That fits him more than the BiPolar (BP). I questioned the BiPolar (BP) all this time along because he is not depressed. Never has been. The current psychiatrist said that should have made me wonder. But the old psychiatrist said "hypomanic" and I believed him.

    I think, too, alot of people (and I was one of them way back in 1999) go into a psychiatrist looking for a drug (as I commented on another thread, not always the way to go) to make their kid calm down, listen, be good, and not throw tantrums. There isn't a pill to do that. There aren't two pills to do that. And if you have a child that is a behavioral issue (i.e. ODD), there are no drugs for that. It's a long, heavy, drawn out fight. I'm telling you, cuz I did it. It was horrible. It was awful. I had to change everything around. It wasn't easy. But you know what? I CURED his ODD.

    I, personally, think there is alot about childhood mental illness that is misconstrued, misunderstood, and I think alot of parents just don't know.

    If your child goes to school and kicks the teacher in the knee, that doesn't mean your child is manic.

    Time. Patience. And more time. Quite honestly, my best "in hindsight" advice is, CHILL ON THE PILLS, look for therapy and interventions, and spend LOTS of time with a COUPLE of psychiatrists, to have TWO opinions. And a neuropsychological evaluation can't ever hurt.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Janna, ICAM. I get nervous with some bipolar diagnosis. We had a nine year spell of "wrong diagnosis." too. And stubborn psychiatrists that wanted to only medicate him. I think we need to go with our guts and not believe the doctors or, even worse, teachers are infallible. They have no blood tests and they are only guessing. I'm "iffy" about the hypo-mania too. We were told Lucas had "hypo-mania." He was just a hyper kids. Pervasive Developmental Disorder (PDD) kids tend to be hyper. They can rage if they have to transition or do something they're afraid of. They have "seperation anxiety." They have Obsessive Compulsive Disorder (OCD) tendencies to the max, and it's NOT a good idea to try to get rid of the Obsessive Compulsive Disorder (OCD) tendencies of Autism Spectrum Disorders (ASD) kids. medications to stop it are not good for them. I think a lot of Pervasive Developmental Disorder (PDD) kids are on Lithium, like Lucas was and, yes, Janna he peed in his bed every night on Lithium. Right after he weaned off of it, never again. Ever. And never before. And he gained almost fifty pounds on all those medications that he DID NOT need. Please see a neuropsychologist. They tend to not have "diagnosis of the day" mentality. I think Lucas got caught up in "diagnosis of the day" which was bipolar, at least for psychiatrists. Autism Spectrum Disorders (ASD) can only be found by specific tests and NeuroPsychs do so much more testing than other professionals. How can you spot ADHD, bipolar, ABCD or anything in an hour of talking to Mom and watching the kid? My neuropsychologist tested and observed Lucas for twelve hours. That doesn't include that he made me fill out a billion forms and read ALL of Lucas's school records and old psychiatrist records. He took the time to get to know my son and formed no opinion or preconceived ideas until he was almost finished testing him. As he told me, "I worked ten years at Mayo Clinic and they make mistakes ALL THE TIME. It's a guessing game. To the best of my ability to diagnose your son, he best fits Pervasive Developmental Disorder (PDD)-not otherwise specified."
    And he does, and he's doing great. I'm glad he's off medications. God knows what they've already done to him. Not against medications at all--I take them myself and need them--but my son never needed any. Just because nobody took the time with him, he was put on medications from age three until eleven. And nobody would listen to our concerns.
  7. meowbunny

    meowbunny New Member

    I'm one of those who truly doesn't care what the diagnosis is ... just give me a treatment plan that works! Whether that's medications, behavior mod or both, or whatever else you can think of to throw in the mix, just give me something to help my child!

    When she was younger, her Dxes were all over the place. None really fit. I finally started researching on my own and found info on Reactive Attachment Disorder (RAD). THAT FIT! Brought it up to her psychiatrist and therapist. The psychiatrist said, yup, no question she had that. I asked why he didn't mention it. He said he didn't want to see me give up. I'd already gone so much farther with her than he expected. He also said if I hadn't gotten through to her, he would have recommended I disrupt the adoption.

    I do buy into my daughter's present Dxes, but I also think Fetal Alcohol Effects (FAE) is a factor. Sadly, there really aren't any medications that worked because of her drug sensitivies or even really would have worked without them (besides putting her into a manageable stupor) for her issues. For us, it was a very long, painful haul up an extremely steep hill.

    So, I'm a firm believer in the big picture -- whatever works, whatever gets you the help you need, grab it. Actually, I would probably ask a psychiatrist to do the necessary treatment for something like BiPolar (BP) but ask that the label not be attached if I had any doubts. It is hard to remove a label once it is attached and some labels like BiPolar (BP) can be create difficulties in adult life.
  8. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm with Meowbunny. I want a treatment plan that works-doesn't matter the diagnosis. In our case I do agree with the many dxs of difficult child. I have great confidence in the psychiatrists and neuropsychologist. he has seen. Like meowbunny I also think Fetal Alcohol Effects (FAE) is a factor for my difficult child. For my difficult child I also think there is ODD and he has never had that diagnosis.

    I know the medications aren't a cure for my difficult child (wish they were). I do know they help.
  9. smallworld

    smallworld Moderator

    T, I've thought about this topic a lot. In my son's case, I don't think we got the diagnosis wrong as much as the diagnosis morphed as he grew and changed. He was always a challenging child, but in 3rd and 4th grade he hated school so much that our pediatrician suggested he undergo neuropsychologist testing. The diagnosis then was ADHD and anxiety, and he did well on Concerta for 1.5 years. (The difference in his ability to complete homework on Concerta was amazing.) In 6th grade J became anxious and moody so we took him to a psychiatrist who prescribed Celexa (he felt tired and apathetic) and then Prozac (3-hour rage reaction after 1 dose). When this psychiatrist became spooked about prescribing medications for J, we switched to a new doctor who prescribed Zoloft in the fall of 7th grade. After 3 weeks he had an intense manic reaction that lasted for months until Depakote could stabilize him. J's new psychiatrist (since November 2005) believes J has bipolar disorder, but he said we will not know for certain until he gets to the other side of puberty.

    We also redid J's neuropsychologist testing in December 2006 because so much had occurred in the 4 years since the testing was first administered. J has no learning disabilities, no psychosis and no signs of Autism Spectrum Disorders (ASD). The neuropsychologist said the mood issues are huge and need the most intervention. He even told us that "ADHD is the least of your problems," but we continue to use stimulants because J has such a hard time attending to schoolwork and homework. J's psychiatrist feels that as long as stimulants help, we should go for it.

    I recently talked to a child psychiatrist about the difference between mood disorder and BiPolar (BP) because that's the only diagnosis differece I'm concerned about with my children. The psychiatrist said some children have depression with mood dysregulation, but don't actually grow up to have BiPolar (BP). Other children really do have BiPolar (BP) and grow up to have BiPolar (BP) as adults. It is very difficult to sort out what is what with children, but both groups tend to be treated similarly with mood stabilizers and/or atypical antipsychotics.

    In our case, my kids would not be functioning without medications. In fact, we had 3 psychiatrists tell us we had "no choice" but to put our kids on medications (J because he was suicidal and raging nightly following his reaction to Zoloft; A because she was suicidal and suffering from daily nausea and headaches; and M because she completely stopped eating and ended up in the hosptial being fed via NG tube). But medications are not the entire solution -- my kids also see psychiatrists for weekly psychotherapy. My hope is that the combination of medications and therapy will help them grow up to become healthy, happy and productive adults.
  10. jannie

    jannie trying to survive....

    However, kids can be on the spectrum and have a mood disorder--I know many kids on the spectrum who may become easily frustrated and agitated, but do not have significant anger/mood issues and I know others who have both disorders. Some kids as they mature and recieve therapy seem to be better able to regulate...so perhaps no longer need medications. However when they were younger, were unable to function without medications--There is not clear cut way to diagnose--perhaps just saying mood disorder-not otherwise specified is enough--I don't know what my child "truly" has but right now he needs medication. A year or two ago, Janna was thrilled with the benefits of medication...she frequently told everyone how well the lithium/abilify combo helped her son....For the time that it worked well--she was pleased--now with supports he is trying to function without medications--I say just do what works--
  11. Marguerite

    Marguerite Active Member

    It's different again for us. In Australia they are very reluctant to even consider bipolar in a child. Plus, I don't think we have anything resembling a neuropsychologist.

    We've had wrong diagnoses before. difficult child 1 was diagnosed ADHD when he was six but I never felt it explained most of the problems. I would ask, "Please can you tell me why he is so withdrawn? Why does he scream if you try to get his head wet? Why is he so terrified of animals? Why does he get so upset when he has to stand up in front of other people?"
    I never got any answers that made sense, or helped.

    easy child 2/difficult child 2 was assessed at age 4. She was a VERY bright kid, driving me crazy with her demands to go to school. She had already done the pre-school course for kids beginning school the following year, and done well. She was ready for school but the law said she was too young.

    I got the law changed. She was actually a test case in the new guidelines. She tested as IQ of 145. Vineland score gave her age equivalent of 6. She did well at school for several years but behaviour became more odd. She was still demanding - things had to happen a certain way - the same demanding kid who insisted she should be in school, would now insist she had to have her ear to the floor while the other kids were marching, so she could hear and feel the vibrations.

    But she is very bright. She aces IQ tests. She has a few sub-tests where she scores much lower, but most are scores of 17. This means she adapts fast. This makes it really hard to assess for Pervasive Developmental Disorder (PDD), so despite what we believe, nobody will diagnose Pervasive Developmental Disorder (PDD). "Asperger's traits" is all we can get. And ADD.

    We've gone from wanting a diagnosis that's appropriate for each kid, to making up our own minds and dealing with the problems we identify for ourselves.

    I don't think this is an issue of parental intelligence as much as parental confidence and determination. I was talking to another parent of a difficult child today. Her son's funding was cancelled when he was going into high school. I've known this to happen with other families; if you appeal they usually reinstate the funding. They're just trying it on, to save money. The parent I talked to today never appealed, she didn't know she could. She is very intelligent, but she is also someone who does what she is told. I am not. But even so, I have still toed the line when I should have argued. I have learnt to not be so reticent to disagree with a teacher, a doctor, a specialist. If I think someone has got it wrong, I will say so. If they persist in doing something which I feel is VERY wrong, I get heavy. I don't like bullying but I will become one if I am desperate to rescue my child from an intolerable situation. Become one with a clear conscience, too, if I feel nothing else has worked to stop someone bullying or harming my child.

    In general, however, I have rarely needed to get this heavy with someone. In the past I always held back too much and decisions were made which I disliked, which generally WERE shown to be the wrong decision in hindsight. All this has given me the confidence to say, now, "I know what I am talking about - do it my way." I am now far less tolerant of a situation I feel is a waste of time and effort as well as damaging.

    I loathe injustice. Always have. Now I'm even worse about it. I recognise that people sometimes make mistakes, but when they continue to make the same ones they will find me tapping on their shoulder.

    I have to be careful to not kick rear ends when my kids don't want them kicked. Sometimes I have to let my kids fight their own battles. Having to take a step back and watch them struggle is very hard, but when that ask me then I do it.

    Life and parenting is a steep learning curve. Parents who simply parent by numbers never learn because they think they're already doing it right. They can't be told, so I stop trying to tell them. Same with teachers - a teacher like that is someone I now will go to great lengths to keep away from my child.

    It's tough, but we learn. Every day, we learn more.

  12. timer lady

    timer lady Queen of Hearts

    I think too many times we can get "stuck" on the right diagnosis & not see that something is or is not working.

    I'm with those - give me something that makes a positive impact on my children. kt & wm's diagnosis's have changed over the years. Some due to complete incompetence; others due to an awareness of childhood mental heath issues.

    I've said here on CD board & I've told psychiatrists outright - call them pregnant just treat them with something that will work.

    We had one therapist who finally said after 2 years of ineffective therapies, [email protected], now we'll have to start treating the Reactive Attachment Disorder (RAD).

    Why did we waste time on parenting techniques that weren't effective with Reactive Attachment Disorder (RAD) children? Why, why why? I was so frustrated.

    I am a firm believer - treat the symptoms. Tell me what you want me to do to help my tweedles & if I can do it & it is effective I'll do it.
  13. SRL

    SRL Active Member

    I'd like to add a heaping dose of luck (or whatever you want to call it) to that. My pediatrician listened to me the first time without question. He referred us on to a specialist that recognized right off what was going on--even the Hyperlexia which a lot of docs hadn't even heard of, much less would acknowledge on reports at the time. It was a straight shot to a correct diagnosis that just required an addition of Sensory Integration Disorder (SID) later on. Had we been referred to a psychiatrist or therapist for behaviors instead of to a developmental pediatrician to assess for Autism, I'm not so confident the path would have been so smooth since my difficult child was on the fence diagnostically.

    Totoro, when a parent arrives on the early childhood board describing a child with spectrumy sorts of traits I try and give them some extra help in exploring that aspect first. No doubt at first it looks like I'm trying to push an Autism Spectrum Disorders (ASD) diagnosis but what I'm really after is for them is to do their homework thoroughly, to challenge Autism from all angles to either recognize it or rule it out in their child, as well as to make sure the first specialist that sees the child has expertise that includes assessing for ASDs. The primary reason for my treating parents in this way is that you don't want to miss Autism Spectrum Disorders (ASD) the first time around. undiagnosed and untreated Autism Spectrum Disorders (ASD) kids frequently look bipolar and let's face facts honestly--what often lies ahead for a young bipolar child is a few years of a medication merry-go-round until the right medication combination is found and/or the child changes enough so that the medications work. For a child whose primary issue is Autism Spectrum Disorders (ASD), that medication merry-go-round usually further destabilizes them, in essence emphasizing their difficult behaviors even more and minimizing the quirky Autistic behaviors. With Autism treatment is usually a matter of therapeutic interventions first, then medicate later if functioning is severely impaired. With BiPolar (BP), it's nearly always medication first with parallel interventions. The stakes are so high for the child and family in taking the wrong path, that it's well worth the time, effort, and often money to rule out Autism Spectrum Disorders (ASD) first if a number of traits are present because most of the other diagnosis's that we see here nearly always point to medications.

    If I remember correctly, you worked the Autism lead over thoroughly first before moving onto BiPolar (BP)?

    I'm sorry it's been such a tough road for K. Personally I do think that for many families BiPolar (BP) IS tougher to deal with than Autism, mostly because of the medication component. But Autism isn't always a cakewalk either. When we were in the heat of the age 5ish anger problems we were going through the diagnostic process and difficult child was really, really difficult to handle. I remember reading something a mom had written--a dreamy, flowery essay in which she claimed that even if she could she wouldn't change the Autism in her son because it made him who he was. All I could think then was that she surely had a mild mannered Autistic kid because no mother in their right mind wouldn't want to flip a switch and turn off the behaviors I was dealing with 24/7 for months on end without relief! And the reality is that adulthood is often a very rough go for individuals with high functioning Autism Spectrum Disorders (ASD) such as Aspergers due to challenges in the social and employment realms.

    In our situation I have to say that labels have been really helpful. Hyperlexia wasn't well known and the label gave us the direction we needed to research and seek out other parents. It gave us validity with the school staff since it was a total unknown to them. And eventually we did change difficult child's educational label to Autism from speech language because (gasp!) the school has done such a good job in Autism training for their staff that the label helped them to immediately recognize and hopefully understand what to look for and how to help him.
  14. Fran

    Fran Former desparate mom

    I think we do a disservice to ourselves and our kids to think any diagnosis or symptom would be so black and white. Seldom is any child "clear cut" anything. It would be impossible that our children not have any variance from one another.
    My difficult child's symptoms changed/morphed over years. So have his diagnosis'.

    Remember also what your child's behavior is like at present may not be true in a different environment or at a different developmental level.
    Janna's son who is doing so well, may come out of a very structured environment and not be able to maintain. I hope not. Many kids, young adults do better in structure but no home can maintain that lifestyle. No human can keep that level of structure themselves. It would have to be imposed by others.
    Many times my son did wonderfully on a certain medication, certain school, certain environment only to fall apart as time went on or situations change. This is life isn't it?

    It's very difficult to assess our child looking only at this day and time. It really requires looking at a lifetime of behavior,symptom, function to really be accurate but that is called 20/20 hindsight.
    We have to stay on our toes and continue to research, evaluate and implement what helps our kids to function and grow. No answer lasts a lifetime. In my very humble opinion of course.
  15. Janna

    Janna New Member

    I really like what you said, SRL. The more Autism mothers I speak to, the more I find that Autism Spectrum Disorders (ASD) issues are just as hard to deal with as Bipolar ones.

    I think the labels are important. I've always thought that. I have no GOOD reason for why I want to know what my son's diagnosis is, but I want to know. When I need to address someone regarding interventions, medication, therapies or anything else for Dylan, I want to be able to say "he's Autistic", or "he's Bipolar", or he's whatever. It doesn't SEEM to me, just from discussions, that the interventions are the same for these disorders. If Dylan was ADHD, he would not get NEARLY the same interventions he would being Autistic. Trust me. Jared is ADHD and he gets nothing. Regular ed. No IEP. No therapy. Doesn't need it. He needs a pill, that's all he needed ~ life is good. Dylan would NEVER function that way. He can't handle regular education, at least not now. I see him, I see a kid that needs someone to help them through every day in school.

    Another reason I think labels help, I am trying, busting my TAIL, to find help for him. During our last ISP meeting last week, the insurance company asked about interventions for Dylan upon release. Hmm, I dunno. Well, you know, there are 1,000,000 agencies around for behavior modification/Wrap Around, etc. If you have a kid that doesn't listen, throws tantrums, and is disrespectful, I could get 100 people here (so, basically kids diagnosis'ed with ODD type stuff). But, when I say "Autism", I haven't found a soul. Nobody. But that's what he NEEDS. AUTISM INTERVENTIONS. AUTISM THERAPY. Not Bipolar. Not depression. Not anything else.

    Doesn't mean that's the same for everyone.

    I would like to also think the label would help with medications, but really, it doesn't. Dylan has incredible success for 16 months on Bipolar medications. The Lithium was his saviour for a long time. Why? Dunno LOL! Although, our previous psychiatrist always did say it was a "working" diagnosis (the Bipolar) at first, an "optimistic" one. Meaning, treating as Bipolar, and see what happens. So, the Lithium worked, he said yep, he's Bipolar LOL!

    The whole thing is confusing. Is there one answer? Nope. Dylan has morphed over the last 9 years, like Smallworld was saying about her son. I think he has matured alot, at least as much as he can mature, which has helped alot with his current diagnosis. He doesn't rage like he used to. He used to rage multiple times a day, 15 minutes to 3 hours per rage. Haven't seen that in a long time, even with the decrease of Lithium, nothing yet. I think some of that is maturity. He's getting alot, and I mean ALOT, of therapy where he is. Keep in mind, again, he is in a treatment facility. 7 people, 24-7, watching him, intervening every minute when he needs it, FOUR therapies, four days a week, horticulture, art, equine, pet, plus individual and family, once a week, plus the music, dance, art therapies. He is in a place that therapies him to death LOL! You figure, in this type of environment, things are alot clearer for him. It's not always that way for every other child. Some parents see things and go to the psychiatrist, psychiatrist thinks they're crazy. Some parents get to the psychiatrist and tell the psychiatrist things that maybe aren't the whole truth, and get diagnosis'es that aren't true. Some people see psychiatrist's that don't believe in Early Onset Bi-Polar (EOBP). Some people see psychiatrist's that don't believe in alot of medications. You see what I'm saying? Every situation with every child is going to be different.

    I have been looking for the medication answer all these years. That's been alot of our problem. Mainly my problem LOL! I still insist Dylan needs medications. He's here this weekend, and I am fully exhausted from his constant movement. He hasn't stopped talking. Even does it in his sleep. My head is pounding, I have a migrane, and it's only 8:20 AM. He goes back today. Whew. He is bouncing all over the place. Wants to draw - no, wants to watch tv - no, wants to go outside - no, never mind, I'll draw - no, never mind, I want a snack. Within 60 seconds, all this changes. It's wild.

    So, I know I said about the pills, and I read what Jannie said too, about Dylan, and yeah, the pills were great. But, in HINDSIGHT, we got 16 good months, yes, but, what kind of reprocussions will this have on him that are lifelong? And yeah, the Lithium was great, BUT, it caused hypothyroidism, it caused massive weight gain, it caused enuresis. The Risperdal caused encopresis - held his bowels TEN MONTHS. Was it worth it? No. All the wild side effects from everything. Was it worth it? In hindsight - no.

    So, yeah, I feel like I have the right to tell people, in my opinion, to chill on the drugs. If you walk into a psychiatrist office for the first time, he sees your kid 15 minutes and writes a script for something, STOP. That comes from experience. Doesn't mean anyone has to listen to me either. Doesn't mean if your kid, or someone else's kid, is diagnosis'ed Bipolar, that is going to change later on, just because mine was. But, for Dylan, it makes more sense, because I've always had doubts. I THOUGHT I saw Bipolar mania, because that's what I was steered to believing it was. But it wasn't.

    I don't know if I'm just rambling, if anything I say makes sense. We have the power of the internet, that's a big help to us. I would make sure, no matter what your child's diagnosis, you go online and read. Read and read and read. There are alot of pages that explain what Bipolar mania looks like in kids. Depression, Obsessive Compulsive Disorder (OCD), the whole nine. There are pages just for Autism. You have NAMI. You have MySpace. Go to MySpace and you'll find hundreds, I mean HUNDREDS of pages, dedicated to Autism with information all over the place. Some for Bipolar. TONS for depression, SI, all of that. The Autism Society has chapters everywhere. There is no good reason for ignorance today.

    So, the more I read about Autism (due to my ignorance, all I've read about is Bipolar), the more I see Dylan. Although, no doubt, he's got ADHD, too, quadrupled LOL!

    I know, too, it's hard to go slow when your kid is wigging out. You want a pill to calm him or her down. You want immediate help. You hope you're gonna get to the psychiatrist, get the pill or pills that are going to work the first time, every time, and life is going to go back to normal. That doesn't happen. That's not realistic. But, I think people need to slow down. There are alot, I mean ALOT, of kids being diagnosis'ed Bipolar, and that diagnosis morphs later over time. Again, I have talked to so many people in the last week that say to me "my son started out BiPolar (BP) and turned out to be xyz as he got older". I'm not the only one. This concerns me.

    So, although it may not seem that way, say here at this board, there are so many other communities and people out there that have gone through what I have gone through.

    Hope I made some sense here. Migraine is getting worse lol, need to get aspirin. *hugs*
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I want to jump in and say I'm relieved my son is on the spectrum rather than bipolar. I have bipolar and it wasn't a few years of medications and then walla...perfection. It was thirty years of suicidal thinking, rage, anger, wrong medications, medications that worked than pooped out, toxic reactions, three hositalizations etc. The structured environment of a hospital neither helped or hurt my conditon as an adult. I still felt sad until--and it was a total accident--one psychiatrist tried medications that worked. And I'm lucky they haven't pooped out.
    My Autism Spectrum Disorders (ASD) son needs structure and will need it as an adult. My goal for him is NOT total independence. That's in my opinion for people who are not on the spectrum. I either want him in assisted living or some good group home (we have both out here). He will always need "typicals" to help him do the day-to-day stuff---like bathe, brush his teeth, changed his clothing, etc. plus he will need reminders to go to work and would stay by himself unless forced to socialize. And I don't see this as a horrible thing at all because he's a happy person. That's the bottom line. He is happier than I ever was because he doesn't have to fight swinging moods that take you to the dark pit. Bipolar is a hard disorder for the person who has it. Autism Spectrum Disorders (ASD) is worse, in my opinion, for many parents than for the child, depending on the level of severity of the child and, of course, the child's own frustration level. Many kids seem to cross from one diagnosis. to another, but my son NEVER acted bipolar and to this day I wonder why the psychiatrist didn't listen to me. And I wonder why I took so long to finally tell him, "You're wrong" and take him for a new assessment. If I hadn't finally done it, he'd still be on heavy duty bipolar medications. Four years off the medications, it's clear he never needed them. He is the same basically even-tempered kid as he was on them, but he's jumped academically by leaps and bounds. My guess is the medications cognitively dulled him.
    I'm kind of rambling too, but the bottom line here is I don't think bipolar is an easier thing to live with--I have it, it zapped the majority of my youth. Autism Spectrum Disorders (ASD) is a chronic condition too, and most Autism Spectrum Disorders (ASD) kids need help as adults, but that doesn't make them failures or pitiful, at least not in their own minds. Both disorders affect one's life and I'm with Janna--labels help, in my opinion. When you're an adult, they REALLY help, especially if you know you or your child need Disability, job placement help, or help with living arrangements. Without a diagnosis. you'll get nothing.
    I'm on Disability. I have never been able to hold a job. The real reasons I have trouble with work are a NonVerbal Learning Disorder (NVLD) plus a visual processing disorder which make it impossible for me to understand anything visual. I'm also Face Blind. However, what got me the Disability was the Bipolar diagnosis., even though it's no longer really a factor in my life. I was told by my friend, who works in Disability, that Bipolar is almost always an automatic Disability "yes" because they know that people with bipolar explode and often are disruptive at work and can't hold jobs. That is so NOT why I have trouble working, but that's probably why I got Disability the first time I applied. JMO
  17. smallworld

    smallworld Moderator

    I think it's counterproductive to try to determine which disorder is worse. All of us on this board, parents and children alike, have individual struggles with and hopefully in time triumphs over our various disorders and disabilities. We are here to support one another, not play one-upmanship.
  18. Stella Johnson

    Stella Johnson Active Member

    I don't think the diagnosis is as important as the treatment. Treat the symptoms and I could care less what they call it. My difficult child has had several different diagnosis's.

    Yes saying she has this or that helps sometimes to get services but at school they already see what she is doing. We all work together and find things to help.

    Just because one person's child has been considered bipolar and then not bipolar doesn't mean everyone's will. If you take 10 kids with a diagnosis of bipolar or AS they will all have different symptoms and issues.

    Some of our kids would be completely different in a structured, rigid environment. Doesn't mean they are cured. That has to be proven when they are in several other environments after the structured one. I think it also depends on the parenting style.

  19. Janna

    Janna New Member

    I don't think any disorder is worse than another. I hope by my coming here and saying that he's Autistic, not Bipolar, didn't come across that way.

    Being Autistic over Bipolar is no "Get Out Of Jail Free" card.

    This isn't Jenny McCarthy's ignorant version of "my son is Autistic and I cured him" (oops, did I say that out loud? pardon me). This stinks big time, just as it did before, it's just that his label is different, and the interventions are different, and we're gonna try to ditch the medications.

    Additionally, there is no guarantee he's off the Lithium forever. I can pray. I dunno that I'll go that route again because of the side effects, but he may still NEED mood stability medications.

    I hope whatever I've said doesn't make people think I've gone from a hard road with a kid to an easy life and he's changed to normal (whatever that is). I've got the same life long, very long, road ahead of me now as I would have had Dylan continued with the BiPolar (BP) diagnosis.

  20. totoro

    totoro Mom? What's a GFG?

    In my original post I said- "If someone could prove to me that she was not BiPolar (BP)... and Autistic, I might be happier. I know she might still need some medications...but. But I don't know someone with an Autistic child might feel the opposite? The suicide is always haunting me...I would rather take all of the diagnosis's away..."

    I honestly didn't mean that to be taken in a one is better that the other kind of way... I was basically thinking out loud... with my mother's suicide and my father's issues sometimes I really hate this disorder, but I have to stop and see myself and remember that I have dealt with it and even thought K is worse than I was at that age, which scares me alot also... I have to keep the hope.

    I think If I was Autistic and I had lived it I would have a right to hate it also... because I have not lived the Autism life it is not something I "know"... niave... I do know that it is not better. I realize that some people with mental illness can function with minimal medications, some kids with ADHD need more than just a medication... some Autistic kids are higher functioning and some are not....
    If it was easy I don't think any of us would be here, doing anything possible to help our kids.

    Yes SRL I understand where you are coming from. I have a stack of books on Autism!!!LOL I have read books on almost disorder... I think I first got the Autism books because of you!!! But you know what they do help, because alot of the symptoms of BiPolar (BP) and Autism overlap and a lot of the therapies for Sensory Integration Disorder (SID) and BiPolar (BP) and Autism all help!
    We use the social stories and I get Sandbox learning for ideas... those are all geared towareds Autism, but they help us!!!

    I think everyone has made wonderful points and views from the heart... I asked these questions partly because even though I feel comfortable with K's diagnosis... how do you ever know 100% and I thought this could help those who are new to this whole game... I know how it feels to come here and have the words Autism and BiPolar (BP) thrown out and it is so scary... to understand why, like SRL stated. If there is a chance our kids need early interventions...

    As I sit here typing I have a 3yo lining up little fake eggs... and making an intracate display with the nest and birds, while sticking her toungue out and humming....

    While K is doing a "make believe" dance show/karate show for all of her "friends" this has escalated into a frenzy of semi mania... the dance MUST be done!!! it has been 2 hours preparing for it!!!LOL (think little miss sunshine)
    But they are both happy?!?!?

    Very different kids!!!