Neuro test results are in

Discussion in 'General Parenting' started by zba189, Nov 16, 2010.

  1. zba189

    zba189 Guest

    difficult child's test results are in. Here's what we've got: His IQ test comes back 108 verbal 83 nonverbal. Reading is above grade level. He did great on all the tests, he worked hard, and tried to please. His need to do things perfect hindered his outcome on some portion of the tests. He can't recognize facial emotions. He can't sequence. His gross and fine motor skills are lacking. He has a math learning disability.

    So you would think that we have a simple( ;) I mean that totally tongue in cheek) Autism Spectrum Disorders (ASD) going on right? Nope, the psychiatrist says he was too willing to please, too social, and in too good of a mood to qualify. He scored 13 out of 15 on the Autism test. She said that if they still believed in nonverbal learning disability that would be what he has but they don't so he's in the gray area.

    Here is what worries me. His therapist (who is amazing, we have found a great fit) said at his intake interview, he is such a classic Pervasive Developmental Disorder (PDD) kid. His psychiatrist (not the one that did the test) says that he sees difficult child's anxiety driving most of the meltdowns (I totally agree). Yet, we have a dignoses of a mood disorder not otherwise specified. We have been told the Residential Treatment Center (RTC) gave this diagnosis because insurance won't cover anything on the Autism Spectrum Disorders (ASD). That is where it came from. But we keep running into bipolar questions and it scares me to death. His reaction to Prozac is what sends the red flag up (psychiatrist says). He has now had a reaction to Beniprone as well. He doesn't seem to cycle through. He isn't depressed, he isn't manic unless we throw a drug at him that causes issues. He is still on the Risperdal and we are trying to work up the courage to wean him off of it to see what we have since the Residential Treatment Center (RTC) did not do a medication wash and we don't know what kind of difference the medication is making.

    On a good note, difficult child is doing well. Not perfect but so much better. He started a special needs karate class two weeks ago and he loves it. It's the first activity that he has enjoyed and not been so worried about not being perfect. He loves school. His teacher is a saint who sends me a note every week that always includes the phrase "let me assure you he is doing great and I'm so happy to be his teacher" and she really means it. He is doing really well at telling us what is bothering him and we are doing better at seeing the signs before a meltdown happens. We have been "The incredible 5-point scale" with him and it is amazing the results. He is super clingy to me but I think that has something to do with the fact that he was gone for six weeks and he's six. He is still running on about a scale of 7 for anxiety which must be so tiring to him but we are trying to support him all we can.
  2. timer lady

    timer lady Queen of Hearts

    God bless you ~ you're just starting out on the diagnosis journey. in my humble opinion, & in my experience at this young age the psychiatrists, tdocs, neuro tdocs, etc, never agree ~ even after neuropsychologist testing. Keep in mind many of these professionals go by the book ~ the dsm criteria. If your difficult child doesn't fit it to a tee it then the disagreements begin.

    Your difficult child is at such a tender age ~ over the years diagnosis's will come & go. Medications will be the same. As the autism spectrum disorder came up I'd be looking for treatment in that area. Really building on that. Many times autism spectrum isn't a stand alone disorder - there may be a combination of other disorders going on along with the Autism Spectrum Disorders (ASD).

    You're doing a wonderful job ~ get some treatments/interventions/supports in place while you sort out the rest. Keep us updated, please.
  3. HaoZi

    HaoZi Guest

    ??? Exactly what is that supposed to mean?
  4. flutterby

    flutterby Fly away!

    Who doesn't believe in NonVerbal Learning Disorder (NVLD)? That psychiatrist? Cause I'd be finding someone else. My daughter has NonVerbal Learning Disorder (NVLD), diagnosed by a neuropsychologist, and receives services through MR/daughter because of it.

    By choosing to "not believe" in something that has been rigorously studied is doing a major disservice to your child. He's 6 now. Just wait a few more years until the world starts expecting more from him and then you'll really see what NonVerbal Learning Disorder (NVLD) is. That's what you'll have to look forward to without interventions.

    Sorry. That comment just really set me off.
  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I was going to ask when they cured NonVerbal Learning Disorder (NVLD)

    Like TL, I would be going for treating symptoms since he has such a mish mash of "what could be's" Probably most medications will treat the same diagnosis's because the symptoms are going to be the same no matter what the diagnosis is.
  6. zba189

    zba189 Guest

    Thank you for the link. I actually looked at that site when we first got started on this journey. I understand what you are saying. I have every intention of getting the interventions that T needs. I don't know exactly what those are and I would love it if you would consider giving me some advice on what I should be pursuing.

    The psychiatrist stated that "they" don't diagnose NonVerbal Learning Disorder (NVLD) anymore. Who this collective "they" is I don't know but it really doesn't matter. I wonder if psychiatrist comes from the school of thought that NonVerbal Learning Disorder (NVLD) is a form of Aspergers. I have heard that theory. Yet it was made very clear by her that he wasn't on the spectrum. I don't know.

    difficult child is going to need help and I'm going to get it for him. I believe in him and I believe that his future is too important for me to not step up and do what I can for him.
  7. susiestar

    susiestar Roll With It

    The diagnosis merry go round is usually confusing. The "experts" often do not agree and it can limit what your child receives. The key is to not get so tied up in the actual diagnosis but to concentrate on what is helping him.

    The reaction to prozac is one that happens to MANY children. My daughter is so incredibly NOT mood disordered but if she takes prozac or zoloft she is high as a kite. Literally acts stoned. Her fourth grade teacher had a hard time not laughing one day because Jessie's "manic" behavior. Jessie adores school, is usually complimented on her beautiful behavior, is often seated next to the most hyper kids because somehow she can get them to focus with-o it interfering with her own education. The third day she took prozac (the last day) she led her entire fourth grade class in a sort of conga style dance line for ten minutes when the teacher told them to get books out to start a lesson! Thankfully her teacher was awesome and knew what was going on, so Jessie didn't wind up in any trouble. Our docs, every single one we have seen, all say that this is a VERY common reaction to prozac in children. And to other SSRI/SNRI medications. It does NOT NOT NOT mean that your child is bipolar. People with bipolar do react that way to those medications a lot of the time, but the reaction does not mean they are bipolar.

    Often diagnosis's are tossed in because insurance companies will pay more if they have this one instead of that one. Children with Aspergers are frequently given adhd dxs even though in their case the hyper behavior is a SYMPTOM of the Aspergers instead of a true separate disorder. It justs opens doors to more treatments. Ditto for Obsessive Compulsive Disorder (OCD) diagnosis's for Aspies. They get fixated, even obsessed on something and if that needs to be treated because it is interfering with daily life then they tag on Obsessive Compulsive Disorder (OCD) so that the ins co's will be more willing to pay for the services needed to help with the obsessions.

    As long as whatever they are doing is helping your child, let them call it whatever they want and don't get too wrapped up in the name for it. Names are important and it does help to have a name for it. It makes you and your child feel like there is hope because someone knows what is going on. The only time to get really worried about a diagnosis is if it keeps your difficult child from getting something that he needs.

    As far as NonVerbal Learning Disorder (NVLD) not being "real", what did the doctor say was replacing it? WHY is it not "real" when so many people so clearly have it? There are life coaches making HUGE amounts of money helping people learn how to handle NonVerbal Learning Disorder (NVLD) and other disorders. It is NOT gospel that it doesn't exist. You clearly see it in your child, and in his test results. A second opinion may be needed unless they are willing to work with him to handle the NonVerbal Learning Disorder (NVLD) even if they call it something else.

    Have you read any of Tony Attwood's books? Temple Grandin also has some amazing and very helpful books that will help you understand more of this. Children CAN have Aspergers and be social, esp at such a young age when so little is really demanded of a child as compared with what is required in later years. My Aspie had friends, his teachers generally liked him and a few loved him. He STILL had Aspergers, even though he cooperated on tests like your son did. Again, a second (or third) opinion might be helpful.

    You have instincts that tell you if something is right or wrong for your child. They are real and they are there for a reason. YOU are the top expert in the entire world on your son. You spend oodles of time with him, live with him, and the "experts" spend a few minutes every few weeks/months with your child. Yes, they are needed to help figure things out, but they are still NOT NOT NOT the experts on your difficult child or any child of yours. If something is suggested that just feels wrong, or makes you uneasy in any way, don't do it. No matter what they say. The ONLY times I have done things with my kids that I really strongly regret were times when my instincts said NO WAY and I did it anyway because the doctor pushed. Trust your instincts and yourself. You are his mother for a reason, and you have those instincts as part of the design of life so that you can be the best parent and advocate that is possible.
  8. zba189

    zba189 Guest

    susiestar- Thank you. Clearly I'm new to all of this and I wish that was an expert but I'm getting there slowly but surely. I have read Atwood's book and I also read the "Quirky Yes, Hopeless No". They rang very clear to me when it comes to T. We are currently parenting T like he is an Aspie. I believe that he is a mimic. He has an older brother (by only 17 months) who is very social and has taken T under his wing since he was little to help with social things. My husband explains it really well. He says it's like T has a tape of correct responses but once he reaches the end of his tape he's lost. I think as a Mom, I just want a game plan. I tell my Mom all the time, I would love to fast forward and just see what this journey is going to bring and then I'd gladly go back. I just want to know what I'm up against. His therapist is the best in the state when it comes to Autism Spectrum Disorders (ASD) and she is amazing. My favorite line from her on our first meeting was, "I'm going to create a trusting relationship with T because it will matter now and 10 years from now when I'm working with him".

    timer lady, HaoZi, flutterby and Dammit Janet- thank you all for your responses. I truly appreciate the kindness more than words can say
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hate to break this to your doctor, but a NonVerbal Learning Disorder (NVLD) exists. It is a large discrepancy between verbalization and performance. People who have NonVerbal Learning Disorder (NVLD) sound extremely intelligent and are very verbally astute, however they tend to have problems performing tasks at the same level. Therefore, teachers and employers are impressed by their verbal intelligence and expect them to do well. Often they can't (I was diagnosed with a NonVerbal Learning Disorder (NVLD)). And that is what used to happen when I'd go to school then, later, apply for a job.
    I'd be heading for the hills if this person decided that he/she doesn't "believe" in NVLDs. Unfortunately, not all diagnosticians are created equal. Some are good, some aren't.
    Beware of the bipolar diagnosis. It is often wrong...nobody has concluded how bipolar looks in kids. My son was misdiagnosed bipolar first and put on a slew of drugs he didn't need and had bad reactions to for four years. He's been medication-free for six years now and much better now than when he was all drugged up. And no way does he have bipolar! Do your homework, is my best suggestion and question, question, question!
    As for whether your son is an Aspie or not, if it walks like a duck...jmo. Have you read up on Aspergers? :)
  10. Fran

    Fran Former desparate mom

    As you can see from my signature, my difficult child seems to be very similar to the labels that are being given to your son. It's all sort of vague because they haven't been studied enough or for a long span of time.
    My difficult child was given a mood disorder diagnosis but they believe it is just an overlapping symptom of his other diagnosis'. He certainly isn't manic and he isn't depressed.
    He is extremely social and very verbal.
    So you aren't the only one with a lot of confusion. I picked the label that got the most services, was the biggest obstacle and he had the most symptoms of and let all the other stuff get dealt with as we went along.
  11. ML

    ML Guest

    My son is Mr. personality (class clown), verbal to the point of annoying and very charming. He's also aspie (among other things lol). Interestingly the Autistm Clinic also said he didn't have it when he was tested here about 4 years ago. It is soo frustrating!
  12. flutterby

    flutterby Fly away!

    I'm sorry it took me so long to respond.

    The interventions are essentially the same as you would have with an Aspie child. Our children are deceiving because they are highly verbal (it was like talking to a 40 year old when my daughter was 2), and are very good at mimicking and compensating. They do get to an age, however, when it becomes harder to do - generally the upper elementary grades when they are expected to work more independently. However, as you know, those are only the issues that everyone else sees. We see the differences way before.

    I am still surprised by the things that "stump" my difficult child (for lack of a better word). She is very literal. For example, if you say, "We'll play it by ear", she has no idea what that means. It's funny because when you break it down and explain these things, you realize how silly our expressions sound. It's just that we've always heard them and understood what they meant. When you have to explain them, well they don't make any sense. And that's how they perceive it from the get go.

    Other things -

    It took years for her to get sarcasm and if there isn't enough inflection, she still won't. When she was younger, I had to be overly animated when I was being facetious.

    Repetition is key with these kids. They *do* get things, it just takes them longer - especially more complicated tasks/problems. Things have to be broken down into very simple steps. We recently told my daughter's teachers that when they explain things to her (schoolwork), explain them as if she were a 7 year old. She is very smart, but you really have to break things down. She doesn't catch things that are implied, or inferred, and if you leave out a step, her mind won't take that jump.

    Social skills are generally quite lacking, though they crave friendship. This has caused a lot of hurt for my daughter. There are social skills books that can help with this.

    Our kids have trouble with organization, planning, and setting goals. When you ask your son to do something, tell him one thing at a time. For example, instead of saying, "It's time for you to put on your jammies, brush your teeth, and get your things ready for tomorrow", first have him put on his jammies, then tell him to brush his teeth, then have him get things ready for the next day. The former is too many things at once and it will be overwhelming and he won't know how to plan it out. You can also use a checklist so he knows what he needs to do every night and can mark it off. They also do better with structure - which is a hard one for me because I'm not a structured person.

    When he interrupts you on the phone and you say, "I'm on the phone", and he responds with, "I didn't know", and you're wondering how could he not know cause you're holding the phone in your hand - he really didn't know. He didn't see it. Well, he saw it but his brain didn't process it. Which is why they are horrible at looking for things they can't find. My daughter still calls me in because she can't find something in her room and I move one or two things and there it is. She has gotten better, but I've had to repeatedly show her how to look under things, behind things, move things, etc.

    Those are just things off the top of my head. Each child's strength and weaknesses are going to differ, but I think those are some pretty common ones.

    Hope this helps.
  13. susiestar

    susiestar Roll With It

    I did a fast google search asking if NonVerbal Learning Disorder (NVLD) is in the DSM. Apparently is it not in the current version of the DSM. NOT sure why as it seems asinine to me to not have it in there. It IS real, I have seen it in quite a lot of people of widely varying ages.

    Fran's approach is very wise. I strongly recommend doing what you can to use her approach. Regardless of what they call it, as long as he is getting the help he needs the important things are being handled. Heck, as long as they helped Wiz learn to manage the anger that ate him alive years ago they could have diagnosis'd him as pregnant. I would not have cared if it got him the help he needed.

    It may sound flippant, but I am dead serious. as long as we got what Wiz needed I just couldn't waste time worrying about the diagnosis. I worried when the diagnosis would lead to medications or therapies that were not appropriate, like giving him more self esteem classes when he already thought he was the most valuable person in the world and everyone else was a "commoner" there to be his "serf" and take care of his every need and desire. Yup, he told me that. Idjit boy. Last thing he ever needed was classes in boosting his self esteem. grr.
  14. Marguerite

    Marguerite Active Member

    Sorry, that does not exclude autism AT ALL. I speak from experience - difficult child 3 is highly social, very gregarious, loves other kids and will chat happily and tell intimate secrets to total strangers. He also had significant language delay (both expressive and receptive) which he has now overcome.

    When a child is clearly not able to demonstrate ability that is clearly there, then the test results have to be taken with a large pinch of salt.

    difficult child 3 also reacts badly to antidepressants. So do I. That doesn't make either of us bipolar.

    I still think the working hypothesis needs to be autism in some form. At least until you get answers tat make more sense and explain everything with a better fit.

    Your husband said, "it's like T has a tape of correct responses but once he reaches the end of his tape he's lost". That is just like difficult child 3 was at that age. Let me assure you - as he gets older, his tape, or store of things to say, greatly increases. difficult child 3 and difficult child 1 both did this. It's OK, it's normal but it is far more obvious in the kids with language delay.

    Also note - difficult child 3's language delay was big. He was still severely language delayed when he started school at 5. But now his vocabulary is at university level, as assessed when he was 14. However, due to the language delay, his brain was older when he learned to talk and so there are fewer connections in his head between ideas and concepts. Thismeans he will always have word retrieval issues.

    Face blindness - it goes with the Pervasive Developmental Disorder (PDD). I have not heard of face blindness as a symptom of bipolar. Of course it is possible to have two separate disorders, but Ockams Razor states that the simplest explanation is always the most likely, and the simplest explanation is for there to be only one disorder, one that explains it all. Pervasive Developmental Disorder (PDD).

    Unfortunately, diagnosis is subjective to a certain extent. And if a particular group of health professionals have deleted certain disorders form their charts, then you are left with a smaller number of possibilities and often a less accurate fit.

    It's like testing with a key - you answer the questions, and with each answer, the number of possibilities shrinks until only a handful are left. Think - playing "Guess Who?". You delete all the faces with glasses. All the ones with beards. Eventually you are left with only one possibility. But if, before the game begins, someone comes along and flips down this face and that face because "we have decided we don't play with those ones any more" and it just happens to BE one of those, you will never get an answer that really fits.

    In other words - I think these docs are playing "Guess Who?" with an incomplete deck...

  15. HaoZi

    HaoZi Guest