What do you do when...

Discussion in 'General Parenting' started by cupcakes, Feb 25, 2009.

  1. cupcakes

    cupcakes New Member

    What do you do when each professional you go to see gives a different diagnosis? We have been to many different psychologists, psychiatrists, neurologists, neuropsychologist etc, and they all have a different opinion on my son. It makes it hard to know which direction to go in.....I want to do a signature to let everyone know what he has, but I can't because everyone says something different!!
  2. slsh

    slsh member since 1999

    Just my opinion, but sometimes everyone gets so caught up in the "diagnosis" they forget the whole point of getting a diagnosis in the first place, which is to find a way to treat/educate our child so s/he can function. My kid's been diagnosed with it all - ADHD, depression, Intermittent Explosive Disorder (IED), childhood onset schizophrenia, ODD, CD, bipolar (I'm sure I'm forgetting a few -thank goodness, LOL). At the end of the day though, the issues in our home were how to deal with the violence and noncompliance and ultra-rapid mood swings. I didn't care if they called it gfgitis - just help us figure out how to safely live with our kid and teach him to learn to live with ... whatever it is he has.

    It may boil down to trial and error, just as it does so often with medications - look at the recommendations rather than diagnosis. Try them out and see what works. Follow your gut, too. If you've already done the reward chart thing and it doesn't work, skip it. Or if you've got a kid (like mine) who has an incredibly negative reaction to any positive reinforcement, skip *that*.

    While a diagnosis can point you in the right direction in terms of treatment and medications, it's really not the be all end all. It's a starting place.

    It's a horribly inexact science and terribly frustrating.
  3. Janna

    Janna New Member

    Ahh, yes, the mixture of diagnosis. And, everyone's little "guess". Interesting, huh?

    Welp, as far as psychologists go - I, personally, don't take their diagnosis'es. Ever. They've never given us anything more than ADHD/ODD - every time. It's almost a guarantee.

    I don't know anything about neurologists. But, neuropsychologists are usually pretty good, because of the amount of time they spend with the child.

    Then, of course, you have the big ole' psychiatrist! Oh yeah...he's the M.D. Oooooooooooooooooooooooooooooooooh!


    They take all your symptoms and roll em up and grab the DSM book. If they believe, say, Bipolar exists in kids, you might get that. Or, you might get a psychiatrist that is totally against it, and you'll never see it. One might say ADHD, because he spent what? 5 minutes with your kid and watched him jump around. Not even thinking..."wow, maybe he's manic?". Not even taking the time during your 30 minute evaluation to notice she didn't give eye contact and maybe it's Autism? Nahhhhhhhh, can't be.

    BUT, the neurospych will say yeah it is.


    I went to a board certified M.D. psychiatrist that spent 16 months with my son swearing up and down and across the way the boy was Bipolar. Nothing else. BIPOLAR!!!!!! During that time, I take my boy to a neuropsychologist, who spends countless hours with D, and says "that doctor is crazy, your son is developmentally delayed, he's on the Autism Spectrum" and diagnosis'es him Pervasive Developmental Disorder (PDD)-not otherwise specified.

    I take THAT neuropsychologist report BACK to my board certified big dog - you know, the M.D. who LAUGHS at the report and calls the neuro "nuts".

    And 3 years from now, I bet his Axis I doesn't look ANYTHING like it does now, because our current psychiatrist spends a whole 2 minutes with him every month. And like, wow....she knows nothing. BUT, she can still give him a diagnosis. LOL!

    I used to really care. I did, I was searching hard for that diagnosis. Until I learned how pathetic it is. Now, I really don't care. It's like, just treat this problem (i.e. anxiety or anger, whatever) and let's move on.
  4. Marguerite

    Marguerite Active Member

    It sounds like the blind men and the elephant. You know the story - a number of blind men were taken to meet an elephant. They each touched a different part of the elephant and drew their own conclusions: the one who touched the trunk thought the elephant was like a hose; the one who touched the tail thought it was a rope; the one who touched the body thought it was like a wall; the one who touched the ear thought it was a sail; the one who touched the leg thought it was a tree. They were all partly right, and all completely wrong.

    You're at the alphabet soup stage of diagnosis, I suggest. Mankind tends to like labels, we have classified all living things we've been able to describe, and tried to pigenhole it all (when not all can be pigeonholed). We need to recognise that the labels are often nothing more than that - a description. Just because it sounds official doesn't mean it's a diagnosis.

    For example, my youngest son difficult child 3 - he has a diagnosis of high-functioning autism. His original diagnosis was mild to moderate autism spectrum disorder. We were also told he had ADHD into the bargain.

    BUT - he also presents with Obsessive Compulsive Disorder (OCD), Sensory Integration Disorder (SID), ODD, extreme anxiety, hypermobility, hyperlexia, some degree of medication-related anorexia and probably a few other things besides. But all of it comes under the one big beach umbrella of the autism. Which itself comes under a bigger umbrella of Pervasive Developmental Disorder (PDD) (Pervasive Developmental Disorder).

    If I took each label and tried to find a therapy or treatment for it, we would find ourselves chasing our tails and achiving nothing. For example, the more we try to treat the ADHD, the worse we risk making the anxiety and the anorexia. We have to compromise. Also, the Sensory Integration Disorder (SID) affects what he chooses to eat because of the texture of his food, so the Obsessive Compulsive Disorder (OCD), the Sensory Integration Disorder (SID) and the anorexia all combine here, too. Again, anxiety comes into it if he is afraid we will not have food he likes, available for him. The hyperlexia and the Obsessive Compulsive Disorder (OCD) come in with his schoolwork and entertainment, because he insists on having subtitles on everything to help him understand.

    difficult child 3 is a package deal. In theprocess of trying to get a diagnosis, you need to accept that what you are probably getting back from doctors is simply a more official-sounding repetition of what you just told them. "You say he lines up his toys neatly all together, with millimetre accuracy? And he refuses to wear certain clothes because of the scratchy feel of the label? Then he has Obsessive Compulsive Disorder (OCD) and Sensory Integration Disorder (SID)."
    It's like my going to the doctor complaining of a sore throat and a stuffy nose, and having the doctor say, "You have rhinovirus. If you follow my advice, you will be fine in about ten days."
    Mind you, if you don't follow the doctor's advice, it will take a week and a half.

    A diagnosis is useful when it comes to getting support funding or other services. You will really need a letter from a GOOD doctor who is prepared to put his feedback in writing, so you can get whatever services you feel your child needs. But otherwise - your child is always your child, no matter what he's labelled. You walk out of the doctor's rooms with the same child you walked in with. If you have a letter in your pocket labellnig that child, it makes no difference to how you respond to that child, and vice versa.

    As things stand now - you're dealing with differentpeople ewch only looking at their own area. You need someone who can look at the whole picture and pull it together. Maybe you could say to these people, "Here is the list of labels we've been given. Please help us find one overall label that covers it all." That at least shouldensure that whatever label you're given, is the most appropriate and comprehensive. Then use that officially, but in your day to day stuff - talk to parents, to therapists, to your child, to your partner, and work it out from there. Because how you handle your child is not going to be exactly how I handle my child. What we all do - we inform ourselves, then take what we feel will work for us, and discard the rest.

    Glad you found us, sorry you needed to. But we're here to help one another.


  5. cupcakes

    cupcakes New Member

    ok!! Thanks for your replies, you all describe everything I am feeling. I am def. not hung up on the labels, BUT because we are dealing with the school district and others who seem to REALLY care about the diagnosis it is frustrating. They all want to know "what's wrong" with him so they can place him approproately. Because the diagnosis are all different it makes it hard to know which one to concentrate on and which professional to put more weight in. I mean I have one saying he is totally fine, no need for medications, another says bipolar, another says depression, another says ADHD, ODD, CD, another says anxiety, one says NO ADHD at all, some say learning disabilities yes, some say no. It makes my head spin. AND it is hard to have a conversation with each DR. knowing that the last said something different. I realize I must make my own determination as to how to manage him and we are trying to do that. It is all the other talking heads that are pushing for a diagnosis so they can do what they are leagally required to do.
  6. Stella

    Stella New Member

    You walk out of the doctor's rooms with the same child you walked in with. If you have a letter in your pocket labellnig that child, it makes no difference to how you respond to that child, and vice versa.

    I am totally agree with this and I have actually stopped being so obsessed with getting a diagnosis. One child with ODD or ADHD or whatever could have completely different needs to another child with the same diagnosis. Every case is as individual as a personality so it's really all about finding out what works best for your child and seeing as you are the one who lives with your difficult child you are going to figure this out better than any professional!
  7. slsh

    slsh member since 1999

    Cupcakes - The SD really *doesn't* need a diagnosis to determine placement. They should be basing that on his level of function and need for support. Not a single diagnosis you've received defines those 2 things.

    For example, my oldest has "cerebral palsy". A completely worthless diagnosis in terms of educational need or placement. CP can run the whole range, from minimal effects to really severe. Placement and services shouldn't ever be based solely on a diagnosis. It has to be based on need. Think of autism - some kids are really high functioning and require minimal supports in the reg. ed. setting while others are significantly impacted and need max supports in a sped setting.

    It sounds like the SD agrees there's a need for sped services. Don't let them get hung up on a diagnosis, especially if your kiddo is young because it may change. Focus on current level of functioning, goals, and supports needed to reach those goals.

    My oldest's "diagnosis" as far as the SD was concerned until around 2nd grade was developmental delay; since then it's been other health impaired . Catch-all phrases that justified the need for sped but didn't button hole his disability. My difficult child's has always been emotional disability. Doesn't matter what they call it, as long as appropriate services are provided.
  8. Stella

    Stella New Member

    i just got a phone call from difficult child's psychiatrist. He has spent about 4 weeks with her now in one on one hourly sessions and now believes she has an "autistic spectrum disorder". I told them that a long time ago but they had to see it for themselves i suppose. Still doesn't offer any solutions in how to manage her behaviour. I'm quite upset though, maybe its the fact that it has actually been confirmed for the first time....:anxious:
  9. Marguerite

    Marguerite Active Member

    Stella, what I said above still goes. Your child is no different today with the diagnosis, than yesterday, without. As for a diagnosis of autism - once you realise that's the label, it can change how you manage it. Look up Tony Attwood and read what he's written on the topic, it should make you feel a bit more positive. There are a lot of very wrong, outdated ideas on autism, it's actually a much 'nicer' diagnosis than you could have been given, because although you get a lot of problems with it, it brings unexpected gifts and joys. Have hope - it WILL get better.

    As for the doctors giving different labels - you will probably find the number of different differential diagnoses evaporate when you ask them to put it in writing. And it really doesn't matter if you get ten different letters from ten different specialists, each one giving a different diagosis. Because if the SD wants a label, they can have ten if thye want, any one of which should give them sufficient justification to apply for support. But when it all boils down, what you will get the support for, is the way your child presents and exactly what the specific issues are day to day, according to your own observations and those of the teachers.

    So ask the doctors to put their thoughts into an official letter. You may find a lot more correlation, then.

  10. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    I second.

  11. cupcakes

    cupcakes New Member

    The only reason I have concern is that the school district and the educational placement specialist we hired both are telling us we need new information and a specific diagnosis to guide the placement process. We are trying to determine which out of district placement is appropriate and they all seem very set on knowing a diagnosis (including my attorney) Is there another way we can go about determining appropriate placement without a definitive diagnosis especially when they are all over the place with them?

    Oh and also everyone has put their diagnosis in writing.... everyone of them, and they all are different...
  12. Marguerite

    Marguerite Active Member

    So see what the SD and your attorney say when you present them with all the diagnosis's in writing. I guess they'll just have to take things as they are, at least for now. Ten labels are maybe preferable to none, if a label is required. Indecision is also preferable to the wrong diagnosis. In a way, it's good to know the docs are all sufficiently confident in their diagnosis to put it in writing.

    Over time, perhaps there will be more consensus.

  13. Janna

    Janna New Member

    Honestly, in our experience with schools, diagnosis *does* matter.

    Because, if you go in to a meeting with a diagnosis of ODD or some type of Mood Disorder (or even ADHD, which is what we almost faced with J), here in this S.D., they put you in an Emotional Support classroom. That is a smaller (or at least, it's supposed to be), structured setting with a teacher and an aide. They work on behavior modification type things, like charts and rewards and all that good stuff. There, you have behaviorally challenged kids that throw chairs and curse the teacher out and things of that nature.

    If you go in with an Autism Spectrum diagnosis, ESPECIALLY low functioning, you can look at Autism specific classrooms, where you can get a 1:1 and get Autism specific interventions.

    But, not every S.D. is the same. Maybe some throw everyone into 1. I dunno. That's why I have been working so hard at getting D's diagnosis clarified. I don't want him in the Emotional Support classes. He doesn't belong there. There's no good fit. He needs to be with other Aspies. So, yes, in that case - for us - it makes an enormous difference.
  14. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    I think we are more comfortable with "diagnoses" because it's something we can define, research, learn about. Our psychiatrist has told me much of what has been said here, the diagnosis doesn't really matter, and isn't even always exact, it's deciding the course of treatment and seeing if it works. Some of the time, the diagnosis comes FROM the treatment... if this works, then the diagnosis is probably that. There is no blood test for bipolar, or depression, or borderline personality disorder. It's an educated guess based on symptoms and the effectiveness of treatment. Consequently, it can be incredibly frustrating trying to figure it out, especially as a parent (or a patient!)

    It might be helpful to lay all those diagnoses in front of you.. and look for a common thread ... even as a layperson. Maybe even pick a new professional (HA!) and see what they think of the melting pot.... ?

    Not very helpful, probably, but my 2 cents.
  15. Stella

    Stella New Member

    I am a bit confused about the diagnosis. the psychiatric "thinks" that she has an autistic spectrum disorder. Does this means that she is autistic or almost autistic?? He seems confused by the fact that she manages to mix well with her peers and has a good group of friends and this is not congruent with a child with Autism Spectrum Disorders (ASD)??!!

    Also as Janna mentioned I am concerned about the implications this will have on her schooling? Will i have to find her a specialised school? It's probably a miracle that she has survived up to 5th class in a mainstream school as she is quite far behind the others in her class. She received 5 resource hours per week though, behaviourally is fine and has nice group of friends in this school so if it's not broke im not gonna fix it. It really is when she reaches 12 and goes to secondary school that i am worried about!!
  16. cupcakes

    cupcakes New Member

    It might be helpful to lay all those diagnoses in front of you.. and look for a common thread ... even as a layperson. Maybe even pick a new professional (HA!) and see what they think of the melting pot.... ?

    Not very helpful, probably, but my 2 cents.

    actually CrazyinVA that's a very good idea!!
  17. Janna

    Janna New Member

    That is the case alot - that children on the Spectrum have social interaction/peer relation issues.

    in my opinion, psychiatrist saying "I think....", from my own personal experience means one of two things. They want to monitor the child for a longer period of time (this would mean having to TAKE the time to really MONITOR the child - notice the key words) or, they don't know.

    I'd see a neuropsychologist if your psychiatrist isn't sure about the Autism Spectrum Disorders (ASD). My .02.
  18. Stella

    Stella New Member

    Well he does intend to monitor for longer and she will contiue to go to him on a weekly basis. He has even bought himself a Nintendo DS and her favourite (Mariokarts) game to use as a catalyst to build up a rapport with her. For the first time last week she went into his room without screaming the place down. He said he even got a few smiles from her this week! He has noticed things already - for instance he tried to change games at one stage and she was having none of it - hence he has noticed how "rigid" she is about things. Also she refuses to sit down while in his office. She has made up her mind that she will NEVER sit down whilst there - her way of retaining some control of the situation i suppose.

    Unfortunately neuropsychologist's are VERY few and far between in Ireland. I rang the main children's hospital in Dublin and asked about getting a referral to one I was told they "used to have a Neuropysch there but he is gone" - so now they don't have ANY neuropsychologist's at all in the hospital.

    There is only one children's psychiatric hospital in the whole of Dublin and there is only 8 beds in it. 70% of kids here who end up going to a psychiatric hospital end up in an ADULT psychiatric hospital which i can imagine could be traumatising for a child. Our health system is a farce!!
  19. compassion

    compassion Member

    I have been hearing a lot about "Otherhealth impaired": it is general but still allows, at least ideally for individual accomodations. I have always homeschooled so have never had to deal with IEP before. Since difficult child is in Residential Treatment Center (RTC), she will have IEP , I have requested a MDE (multidispinary evaluation). I have also arranged for neurpysch testing that will not occur until the summer. I have detailed waht I have foudn to be helpful with her. They mostly deal with being very concrte, one on one, clear transitons, builsing on strenths(math,science, computers,art), encouraging trhough weakness (language,social skills, feeligns, communication). It looks very spectrum like to me. Structure works great for her. She has been doing work sheets shich work great. The more concrete the better for her. I am wanting psychosocial consideratins to be involved, not solely behavioral. Moavemnt is also essential for her, and someone to 1 on 1 her to keep her focused and encouraged.
    I am chedking into the high school classes at the community college for next fall. They seem very structured . It is possible it could work.
    I have been doingonline high shcool classes wih her the past 3 years and I break it down to about 20 minutes a day a subject.
  20. Marguerite

    Marguerite Active Member

    difficult child 3 has "autism spectru disorder" mild to moderate. That was his first main diagnosis. It means he is autistic. However, it wouldalso cover Asperger's. It is all rather subjective, but it's probablty that the docs in your area would consider your child to have full-on autism if she has a history of language delay (even if she's talking OK now). My descriptions here are a bit fuzzy because frankly, the labelling is very fuzzy andconstantly being polished up. Asperger's is also an autism specrum disorder, so someone with Asperger's can also be described as autistic. There can be different degrees of severity in autism and Asperger's. For example, difficult child 1 is Aspie, difficult child 3 is autistic. But I think difficult child 3 has a better prognosis.

    Whether the label means your child has to go here or there - where your child goes is up to you. You don't have to send her where you don't want her to, if you feel it is a wrong placement. You always have choices. It depends on your child.

    As for being social - difficult child 1 was always shy and withdrawn. difficult child 3 is outgoing and gregarious. He loves people. He's often very inappropriate with people and doesn't really understand that other people aren't privy to whatever is going on in his own head, but he still enjoys being with other people. He does find crowded, noisy rooms a bit hard to take, though.

    easy child 2/difficult child 2 is, in our opinion, Aspie. But her pediatrician says she's not because she makes good eye contact. I think he's wrong in this - first, good eye contact with someone she knows is irrelevant. Second, she doesn't make good eye contact with people she doesn't know, she has to force herself to. She also has some face blindness and is also incredibly egocentric, breathtakingly selfish-seeming sometimes. But underneath it all she has a heart of gold and is very loving.

    See if the doctor who thinks it's Autism Spectrum Disorders (ASD) will put it in writing. Maybe afterhe's observed for a while, perhaps. But te issue isn't being socially withdrawn, it's being socially inept. Sometimes very different.