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Took DS to a neurologist for a consult. Here's the update...

Submitted by an LD OnLine user on

Took my quirky dyslexic inattentive son to a neurologist for a base line consult. For anyone not familiar with us, he is one of those kids with traits of many disorders , diagnosis of almost nothing. He is in a special school for dyslexic children, and has trouble attending so we wanted to proactively discuss him with a neurologist who specializes in these types of kids. He also developed mild motor tics this past year, and that was part of the reason we did this.

Well, he took a long history and did a brief neurological exam. I’d be curious to compare notes wiht anyone familiar with neurological testing ‘cause there wasn’t enough time to ask all my questions!

Although my son sometimes has traits of NVLD and Aspergers he basically ruled them out. He said if you have an anxious kid who’s maybe ADD and has some language LD they can present with social problems like an AS kid. This particular doctor puts alot of weight on if the person wants to connect socially despite their difficulties.

He basically thinks my DS has anxiety with OCD tendencies (Tics are often co-morbid with OCD) and wouldn’t recommend stimulant meds for the inattention. Would approach it more from an anxiety standpoint or straterra. Not even thinking he’s really ADD from what he could see.

It was interesting, but not conclusive I think . While the doctor seemed very intuitive, he did base alot of his opinions on our input. Thoughts anyone?

Submitted by Anonymous on Wed, 08/04/2004 - 11:17 AM

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Hi Karen,

<<For anyone not familiar with us, he is one of those kids with traits of many disorders , diagnosis of almost nothing. >>

As an adult who is in a somewhat similar situation, I also refer to that as the “Almost this, not quite that syndrome”

<<Although my son sometimes has traits of NVLD and Aspergers he basically ruled them out. He said if you have an anxious kid who’s maybe ADD and has some language LD they can present with social problems like an AS kid. This particular doctor puts alot of weight on if the person wants to connect socially despite their difficulties.>>

As an FYI, many folks with NLD and/or AS want to connect socially but don’t know how to. As a result, they may start to give up as they know something isn’t right. Therefore, this gets misperceived as not wanting to connect socially.

I am not sure what your son’s neurologist was saying but I know several other professionals use that criteria to rule out NLD and AS when that may not be the case. Of course, there is alot more to diagnosing these disorders than just considering the social issues.

Good luck in sorting it all out as I know how frustrating it can be at times to not neatly fit into any diagnosis.

PT

Submitted by Janis on Wed, 08/04/2004 - 9:21 PM

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Anxiety symptoms certainly overlap a lot with ADD symptoms. We had a hard time getting our son diagnosed. I’ll never be sure we have a great handle on it even now. I do think there are kids misdiagnosed ADD when they really have anxiety, though. Been there….

Janis

Submitted by KarenN on Wed, 08/04/2004 - 11:12 PM

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I still really think my son has a bit of both. But the exam was interesting.

He had him touch each finger to his thumb and showed us that DS has the tiniest bit of “cross talk” between the 2 sides of his brain. (this is shown when you are moving your left index finger, but your right finger moves as well…) The dr. said he sees that alot in LD kids.

Also did the test where you right numbers in the palm of his hand, which DS did perfectly. Not sure what the purpose was though.

I find this all fascinating and it was interesting to get another perspective on the whole thing. All the many many experts we’ve seen have a slightly different perspective, but all the opinions are actually compatible.

Submitted by Janis on Thu, 08/05/2004 - 10:42 PM

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I had to run go ask my child to touch her fingers to her thumb before I replied! She didn’t move her other fingers.

I do think kids can have both issues. I think my son may have a little ADD, anxiety, and sometimes I think maybe OCD. Lots of overlap.

Janis

Submitted by Anonymous on Wed, 08/11/2004 - 11:19 AM

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Tics, anxiety and OCD traits could = Tourettes. Has TS been ruled out?

Interesting that the neuro’s recommending staying away from the stims. Many doctors suspecting bipolar do this also. Has your son been eval’d by a psychiatrist? Maybe a neuro-psych would give you more info.

FWIW - I don’t know many people that’ve responded well to Strattera.

Submitted by Anonymous on Wed, 08/11/2004 - 2:04 PM

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KarenN

My 7 year old sounds a lot like your son. Has a little of this and some of that syndrome.

We’ve been to 2 Pediatric Neurologists, 4 Psychiatrists and a lot of Psychologists, all with different diagnoses. From ADD, ADHD, ODD, OCD, Aspergers, Tourettes, Bipolar, unipolar and just stressed. All subjective.

We’ve tried every alternative method (really) except neurobiofeedback. All with some success, especially the Holistic allergist.

He has had adverse side effects to every medication he has been on. He has been on Adderal, AdderalXR, Concerta, Risperdal, Clonidine, Straterra, Wellbutrin. All a short time because of the side effects. Straterra was given 6 weeks and caused tics. He can tolerate a very small dose of Adderal but still has mild tics.

I don’t have to tell you how confusing, frustrating and upsetting it is. And how sad it is to watch your child suffer with these difficulties.

FINALLY!!! We end up at an Educational Psychologist and she finds he has some vision issues, he is now in glasses, and needs vision therapy.
He has auditory and language processing problems ( no wonder he appears to be not listening and gets frustrated!).

We just got back from seeing a Developmental Behavioral Neurologist, who did brain mapping, physiological assessments, cognitive assessments, psychological assessments,and some blood work. Two days of testing. My son has OCD and Auditory, language and memory processing difficulties some attentional issues but not ADD or any of the other DX’s. The Doctor showed us objective findings, and reasons why he came to these conclusions. And why the meds were either ineffective or caused the side effects.

I can not tell you how grateful I am to this doctor and the Ed. Psych. They saved us years of pain and searching for help and answers. Now I can help my child with the difficulties that he has.

This is just my experience, each child is different and has their own unique makeup. What works for one person may not work for another. I pray you all find what helps your children.

Submitted by Anonymous on Fri, 08/13/2004 - 1:47 AM

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When it comes to understanding developmental differences, we’re still in the dark ages. I think the human brain is capable of every possible combination and degree of quirkiness. One of the quirks is our desire to have everything fit into nice, neat little packages. This is autism, that is Asperger’s, the other thing is OCD, then there’s processing disorders, learning disabilities, etc… and if it’s something in between the lines, you end up with no DX at all. Even if the doctors commit to a specific DX, they take your money without telling you what to do to help your child. I’ve been lucky, not only was my son DX but I have found parents, online and off, that have children like mine. The parents are the experts. They are the ones that help each other understand what the children need and how to deal with the schools.

Submitted by KarenN on Sat, 08/14/2004 - 9:47 PM

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Alex’s mom - I couldn’t agree more. We don’t know how it all really fits together. Every now and then I meet a parent of a child that is just classicaly dyslexic, or NVLD or whatever. But there are plenty (as we on this board know) of children that don’t fit into a box.

We know its not technically TS (tourrettes) b/c he has no vocal tics and that is a diagnostic criteria. I think the neurologist emphasized the OCD b/c of the tics, that is, he see’s alot of kids with TS and OCD is usually comorbid. My son doesn’t have OCD, but has what the doctor called an OCD style of thinking. Which I do not disagree with. He certainly gets stuck on things but doesn’t have the rituals etc of classic OCD.

What I can’t understand is how anxiety can completely explain his inattentive behavior. I get how anxiety can make a person appear inattentive in a social situation, or in a classroom where there is something to be anxious about. But even on a totally relaxing vacation he can just zone out - lost in his own thoughts. It doesn’t seem like anxiety in those moments. Ah well…..

Submitted by marycas on Mon, 08/16/2004 - 4:11 AM

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Having just returned from vacation with one zoned out kiddo, I had to respond

Is it possible that the daydreaming is a mechanism he has developed along the way to deal with stress and now has become a habit? Perhaps it is just a part of him now that no longer needs a stress trigger

My son missed 3 days of Strattera the first week of June;I went from part to full time work and well, the household schedule fell apart. Hes been off meds all summer as a result and, now, if I want him back on for school, I need to get in gear

Being with him 24/7 on vacation I certainly noticed how much he is in his own little world. He did not engage in pretend play until the age of 7 but now is fully “into it” 3 months away from 13!!!!

Is that normal? Probably not! Is it normal for someone who was 5 yrs late in developing dramatic play skills? Makes sense to me

I assume that he is doing some version of pretend play in his head-some fantasy-in fact, hes pretty open lately about just what he IS daydreaming about and its usually some “if I had a million dollars” or “if I was a SWAT officer” or “if I was bigger and stronger than my brothers” ;)

I dont know. Part of me finds it incredibly charming-he is my youngest and I am in no hurry for him to grow up. Yet I also realize how inappropriate this is and how it interferes with school learning

No more part time work option for me means no more homeschooling(which was a huge success for him in 6th gr last year)

Sorry, didnt answer your concerns as much as address my own. I am worrying away as school approaches so quickly

I honestly dont know that my guy used fantasy to reduce stress and then developed a habit, even though I acknowledge that as a possibility in this post

I was very much the same way well into adulthood( :oops: trust me when I say WELL into….). I just needed to occupy my mind with something more interesting to ME than what was going on around me!!!! I, however, managed to still do extremely well in school.

Is it really the daydreaming that makes our kids different? Or the LD that doesnt allow them the luxury???

Submitted by KarenN on Mon, 08/16/2004 - 12:58 PM

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thanks marycas - your post made me smile.

Yes, I have thought that the fantasy is now habit as well as coping mechanism. We weren’t aware of the inattetnion until 1st grade, when the learning problems became apparent. He always has had an unusual imagination and fantasy life though. Part personality, coupled with chemistry and neurology I suspect. But how to address it? Noone thinks traditional ADD medication is appropriate and I dont’ feel the anxiety in and of itself requires medication either. He’s sub-clinical in every area, and yet is missing out in the classroom and socially.

He’s about to start his 2nd year at his LD school - I think this year will be very telling.

Submitted by Laura in CA on Mon, 08/16/2004 - 7:26 PM

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Karen,
I just got the report for my son’s neurological testing (which was done prior to summer so she was quite late with this report!). Just trying to read the tests is difficult and sadly, even though I have a “diagnosis” per say: Reading Disorder, Disorder or Written Expression, Learning Disorder, NOS - Executive Functioning, processing speed and (yikes!!!) Depressive Disorder (thanks to a HORRIBLE year in 4th grade where he was teased and tormented so now he’s afraid of people :cry: ), I still don’t feel like I have a concrete answer. All the testing did was give me documentation showing that my son really has a problem which hopefully the school won’t continue to ignore.

It’s kind of upsetting not to have a neat little packaged answer. At some point we just have to do the best we can with the information we have. The neuropsych told me my son has HF autism, but she didn’t want to include this in the report because she didn’t want to “label him.” So why did she bring this up in the first place and tell me to get books about HF autism? How frustrating!

Marycas, my son didn’t start pretend play until around age 7 as well. I think there are probably a lot more boys than we think who fit in this late-blooming pattern.

Submitted by victoria on Mon, 08/16/2004 - 7:51 PM

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A thought on daydreaming:
A famous chemist, von Kekule, fell into a semi-doze on a streetcar, and had an inspiration about the form of organic molecules that is the basis of modern organic chemistry from plastics to everything else. Einstein daydreamed constantly and figured out the basis of relativity with several “thought experiments”, experiments which could not be done in reality but which logically led to the concepts needed; one of these was to imagine himself sitting on a light beam, facing back towards Earth, and watching a clock to see what happened to time. Leoneardo da Vinci daydreamed all the time, thought up all sorts of things from water systems to helicopter baldes. Every writer and artist and architect in the world starts out with daydreams, picturing “what if …?”.
This is NOT to say that every kid who daydreams will become a famous scientist or writer or artist, but really, it is creativity, a normal and highly desirable part of life. How else do you think up how to build on that house addition, decorate that kitchen, plan that lesson, make that costume, start up that new company, solve that problem (in math or in real life) or do anything else to improve your life and world? You absolutely don;t want to stop someone imagining and creating, just help him find a way to control and direct it and to turn his attention outward when there are important things to attend to.

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