Just dumbfounded...need any advice/help

[SunnyNC]

I called my difficult child's neuropsychologist's office Friday to see if the dictated final report was completed yet. I was told that it would be ready about 2 weeks after our last appointment, which was to go over all of the test results. My son was tested over 2 days earlier this month. The first day was to be the ADOS test to test for PDDs including Autism Spectrum Disorder. The second day was to be the NEPSY test, WISC-IV, CPT II, and VMI. Anyway....when I called the office Friday, I spoke with the neuropsychologist's tech. She told me that the dictated report was indeed ready. I asked her if I could come by and pick up a copy for myself. She told me should would print it off for me and have it ready. I asked her, since she was looking at the report, if she could check and see if a certain test was done...as it was not indicated on the written/rough draft of my initial test results report that I received at my results appointment. I told her I am sure it was just an oversight. She looked at the final draft in front of her...nope, it was not listed on that copy either. She put me on hold as she went to pull his file.

She returned moments later and was shocked when she found out that the test that she scheduled....a test that the neurologist who refered my son wanted done....was never administered. It was one of the most important tests that needed to be done....the ADOS test! The referral from the Neurologist plainly says...rule out Pervasive Developmental Disorder (PDD) and/or behavioral disorders. Of course the neuropsychologist is out of town for a couple of weeks (I knew this) and is unable to be reached. The tech was VERY apologetic, saying she has no idea why this test was not done other than the neuropsychologist must have had seen or felt something enough to decide not to do the test. I told her...prior to that day of testing...she had only met my son and I for one hour. During that one hour, she explained the ADOS test to me and assured me that even though he is verbal, it would pick up any Pervasive Developmental Disorder (PDD) symptoms..so I have no idea why after that meeting, she would suddenly decide to go against the referring Dr's request and not administer the test. Her tech also didn't know why. I said...what DID she do during those almost 2 hours my son was back there with her!?!?! Her tech said she didn't know other than she could see where a couple of questionnaires were done. I told her...I was billed for 3 hours of testing...and the scheduled test didn't take place!!!

I told her...after that "test" was supposedly administered, the neuropsychologist pulled my husband and I into an office and explained to us that she did not feel difficult child had any sort of Pervasive Developmental Disorder (PDD) or Austism Spectrum Disorder as he was very talkative and gave some witty answers to fill in the blank questions such as, "My mom should____" He said,"give more desert." She said she did not see ANY sort of eye contact issues AT ALL! I immediately questioned her about this, as EVERYONE has seen this but apparently her. I told her that difficult child was seen by another therapist who wanted to diagnose him as ADD and immediatly medicate him based on his lack of eye contact. Her only response was "there seemed to be a disagreement there." However, in her final report, there are multiple notations about his poor contact with the beginning of each test but since it seemed to improve over time, she felt it was anxiety related. Sure, that is possible...but that is a far cry from the "not at all" she gave us face to face in the office. The point is...never ONCE did she tell us she did not adminster the ADOS test that day...or any other day! I found out when I ASKED why it was not circled on the written/rough draft!

The tech of course says this test needs to be done...duh! The earliest they can now get him in to have it completed...the end of June! I told her this is just not satisfactory as I have to meet with the school the middle of the month to discuss these test results and to get an IEP/504 in place for next year...as well as discuss an appropriate teacher placement that will best suit his needs! I also voice my concern that this neuropsychologist seemed to have made her mind up after our 1 hour inital appointment/interview what my son's diagnosis was/were and it didn't matter what the neurologist or anyone else for that matter wanted ruled in/out. My conern now, was that I would not get an impartial testing/reults from her with the test. How convenient that she is the only one in the area that can do this test. I have put a call into the neurologists office to discuss if they want to have this test even done now or just go by what is in the report...as it does suggest the possibility of a Pervasive Developmental Disorder (PDD), but the diagnosis given was not such. (see the laundry list in signature)

I am just dumbfounded...but I am now waiting on a call from the neuropsychologist's office once the neuropsychologist gets back in town or if the neuropsychologist checks in with the office, her tech will discuss this with her..and call me back then.

I am in need of advice here...should I allow them to do the test? Would YOU trust her to give your child an impartial evaluation at this point? What questions should I ask when they call?

I am a bit stuck when it comes to choices of 2nd opinions. One...this testing was VERY expensive and I can't afford for someone else to start all over. My insurance only covers 4 psychiatrists in the entire area...this office was one...and one other that we went to prior to this neuropsychologist was the lady who wanted to medicate my son on the spot without any testing for ADD based on his lack of eye contact...no way! The other 2 names on the list...the pediatrican had never heard of.

Thanks for any and all thoughts...just when I thought we had answers....I find out that all I have is part of the puzzle.

Have a great day!

 

[flutterbee]

I would have your neuropsychologist go ahead and administer the test. You've already come this far. I would hope that s/he would be professional and maintain their objectivity with this test.

I can certainly understand your frustration. You're waiting on pins and needles for this report in order to be able to help your child, and they seem to act like they have all the time in the world. Frustrating to say the least. I really like and respect the neuropsychologist we used, but it took forever to get the written report. I was beyond ancy about it.

 

[Hound dog]

You've come this far and you're insurance has already been billed for a test that wasn't given. I'd still have the evaluation done. If you don't agree with the results another can be arranged somewhere else at another time.

That said, excuse me? What does the eye contact and social thingie got to do with it? Not all Pervasive Developmental Disorder (PDD) kids have trouble with eye contact or can't answer questions that are put to them. (such as in an evaluation) T would look this neuro psychiatric in the eye and answer immediately. Doesn't mean his answers would necessarily make sense, but he wouldn't hesitate. And T often attempts humor. T's neuropsychologist and neurologist didn't feel this affected his Pervasive Developmental Disorder (PDD) diagnosis. Not all kids display the same symptoms, nor each of the "classic" symptoms. It's the matter of severity of the symptoms T has that cinched his diagnosis. (I hope this makes sense as it's late and I'm fairly brain dead lol)

Hugs

 

[smallworld]

I'd go ahead and have the test administered as well. You should be aware that anxiety disorder, Sensory Integration Disorder (SID) and ADHD-like symptoms can all be part of an Autistic Spectrum Disorder so I think it's imperative that it be ruled in or out. If you don't get a satisfactory answer from this neuropsychologist, I'd recommend taking your difficult child to an autism clinic at a university or children's hospital. You might have to travel a distance, but I think it would be well worth it in the end to have a definitive answer (especially to make certain he gets appropriate school-based interventions).

 

[Marguerite]

That's our current beef as well - pediatrician insists easy child 2/difficult child 2 is not Aspie, because he says her eye contact is fine. No tests, nothing. Just his opinion. Increasingly, we're seeing problems which should be long in the past, where she's just not coping because life is too challenging, people are too hard to cope with.

In your case - the test is paid for, should have been done. If the neuropsychologist says there's no need, point out that the referring doctor wants it done and to ensure a complete, THOROUGH evaluation, it needs to be done.

Something to consider - you may not have been billed for this test. Three hours of testing can still be insufficient for a full battery of tests. Be prepared to be charged even more, for this extra test.

If you chose to go elsewhere to continue the assessment, you should be able to ask for test results already done to be forwarded to another specialist, for them to analyse. To re-test too soon (such as within two years) is just plain wrong, should never be done. A change in doctor should also mean a reanalysis of test results, not necessarily retesting. They should ALWAYS check how long since the last tests, before doing it again.

That was one of our beefs with difficult child 3 - he had been tested halfway through Year 5 by an independent research team. The test results and copy of the report were sent to the school counsellor, who tested him again, without my knowledge or permission, early in Year 6. When I t old her that this was inappropriate because it was too soon after his previous test, she said, "What test?"
I said, "If you had asked my permission to test him again this time, I would have reminded you about last year's test, the results of which should be in his file and which I handed to you personally." (which could be why the test results aren't in his file!)

Too-frequent testing is badly biased - the subject gets really good at remembering the questions and often in the meantime has checked up on the answers. We have a software package called "Boost your IQ" (came with a bundle of stuff) and the more you test yourself, the more you can remember previous correct answers. I fairly quickly got to the 100% correct stage (allegedly equal to IQ of 200 - I doubt it!).

It's a blasted nuisance that you have to wait for testing to be done properly, after all your careful organisation. I would suggest you work on the assumptions of the referring doctor - if he requested Pervasive Developmental Disorder (PDD) to be considered, then the IEP needs to provisionally consider it. When school goes back you will have a more official report which can then be used to modify the IEP (if that is needed). Meanwhile, you can put in place as much as possible, given the SNAFU which is NOT your fault and for which difficult child should not be penalised.

Marg

 

[oceans]

An other option is to try TEACCH which is autistic spectrum clinic through UNC. They have a long waiting list, but it is free for NC residents.

 

[SRL]

I agree to have them complete testing and I'd push to have it done sooner. They should free up a spot for you (especially seeing as how it's already been paid for) or give you a cancellation appointment.

 

[BusynMember]

I would insist, although if the neuropsychologist only spent two hours with your child, I'd wonder about her competence. Most NeuroPsychs spend hours on observation and testing. My son had twelve hours and the neuropsychologist saw different things each time. My son wasn't just given ADOS--he had a ton of tests for everything under the son. My son can be witty and "get" jokes. He makes eye contact sometimes, not always. He is more social than many kids on the spectrum. He was diagnosed, after an intensive twelve hours testing block (six two hour appointments) with Pervasive Developmental Disorder (PDD)-not otherwise specified because he is on the Spectrum, but doesn't fit into classic autism or Aspergers. He also had a full IQ test, all sorts of Learning Disability (LD) tests, and I had to fill out a billion forms :smile: He read all the school reports. He tested Lucas on a computer for ADHD. He was able to give us a complete overview of our son's strengths/weaknesses and a reason as to why he felt he was on the spectrum. My son IS on the spectrum. We figured that out way before most professionals did. It took this intensive evaluation to show the professional WHY. In a two hour span, I'm sure the neuropsychologist would not have seen all that he did. in my opinion two hours of testing is not nearly enough and she needs to observe your child over a much longer length of time. I hate when professionals see a kid for 1-2 hours and try to diagnose or rule out. I would have her do the nine yards of testing. Ask who is taking patients for this doctor while she is out of town. Maybe her fill in is better.

 

[SunnyNC]

I think I need to clarify the amount of time on testing...to be fair towards the neuropsychologist, BUT to not pat her on the back because the amount of time SHE saw him in my opinion pales in comparison to what it seems like many of you have had the doctors see your children before a diagnosis is given.

The pediatric neurologist set up the referral and the neuropsychologist's office contacted me to set up 4 appointment times. The first was an initial evaluation to "present my son" so to speak wich was blocked for 1 hour. The 2nd appointment was for the ADOS test..time blocked was 2 hours. The 3rd appointment was for the behavioral test, administered by the tech (psychomotrist)which I was told could take anywhere from 2-4 hours depending on what tests the neuropsychologist wanted run after the ADOS test was completed. We also set up an appointment to go over the test results...time blocked 1 hour.

My son and I had our first initial evaluation/interview appointment with the neuropsychologist which was a 1 hour appointment. This was by FAR not enough time, as I had 9 years of information to cram into this hour...and of course we ran out of time (she had other appointments).

The 2nd appointment was to be ONLY for the ADOS test...2 hours. About an hour and a 1/2 and my son was back to me and she pulled my husband and I into the office to explain her thoughts (see above). At no time did she mention that she never did the test. She billed us for 3 hours of testing this day...including 1 hour to calculate results.

The 3rd appointment was for the behavioral testing; done by the psychomotrist. The NEPSY, CPT II, WISC IV, VMI testing were done this day by the psychomotrist (neuropsychologist tech). All testing took about 2 hours to complete.

The 4th appointment was again NOT nearly enough time and we again ran out of our one hour timeframe discussing results with the neuropsychologist. At no point again did she mention to us that she never did the ADOS test with my son that day. It was not until I spoke with the psychomotrist almost 2 weeks later (Friday) and asked about the ADOS test, that I found out it was never administered...which had me begging the question...what on earth did she do with my son during that 1-1/2 hours she had him back there!?! You better believe I will find out...when she gets back in town. :smile:

I hope that clears things up....but it certainly doesn't make it any better. haha

 

[BusynMember]

Ok, I have an issue with the tech performing any tests. How can the neuropsychologist see how your son responds to the tests if she's not there? What is a "tech" anyways? That would bother me. I also don't think she gave you or your son enough time. Looks to me like she only saw him two hours and the tech saw him for an hour. Guess what? That's not enough time. We had a neuropsychologist who had worked at Mayo for ten years, now relocated in Wisconsin. He told us, "Mayo makes mistakes every day, since there are no blood tests. That's why we take time to do the best we can and run every test. Even so, we make mistakes." I thought that was really honest, although we believe he nailed our son, as our son has never been better. However, even under the best of circumstances it is hard to figure out what is wrong with our children, and every diagnosis is a guess on the part of the professional. It does help to take more time and observe the child, in my opinion. Kids go on honeymoons with professionals too, but after twelve hours they pretty much may revert back to themselves. I never heard of anyone BILLING for writing out results. Jeez. Our neuropsychologist wrote us fifteen pages and didn't bill us for that. I hope you get what you need from this woman.

 

[smallworld]

For our neuropsychologist, we were not billed by the hour, but paid a set fee (quite high) for 10 hours of testing, report writing (18 pages plus 15 pages of test results), and a 2-hour interpretive conference with parents. I'm sure every neuropsychologist has his/her own method of billing for work completed.

The neuropsychologist spent 5 hours with difficult child 1, and his psychology associate administered the remaining 5 hours of testing. So it is not unheard of to have someone else help the neuropsychologist perform the testing.

 

[SunnyNC]

I had to look up the official definition of a psychometrist haha! She explained her postion to me as a psychology technitian who administered many of the testing. Here is the offical definition I guess of a psychometrist. It sounds like she should be pretty competent to administer the test...and in my opinion that is PROBABLY where the notations of eye contact issues at the beginning of each test came from...not from the neuropsychologist's observations, but I will ask.

I will ask about her certainty with all of these diagnosis when I talk to her next since the time that she observed him was so short. Very interesting indeed...and maybe that is why she was asking me questions at the Results meeting, regarding the ASQ (Autism Spectrum Questionnaire...which my son apparently scored as having many symptoms of an Autism Spectrum Disorders (ASD))....AFTER all testing was completed.

Of course, with what is noted in the Summary part of the report...the neurologist might give their own diagnosis too? I don't know...

I will call them tomorrow and accept the appointment for June 28th to have them do the test "again." I was mostly concerned that reguardless of the test results, the neuropsychologist would not be willing to change her diagnosis IF my son were to test on the spectrum...since her mind was apparently made up after our 1 hour initial appointment that he was just an inflexible child (her words).

Have a great day!

 

[SunnyNC]

Shoot...I forgot to put into my post what a psychometrist was

A psychometrist is a person who has received training in psychology or related field with an emphasis in tests and measurement. The basic function of a psychometrist is to administer and score psychological tests under the direct supervision of a clinical psychologist.

 

[TerryJ2]

Oh, dear! So sorry the test wasn't done. You should have rec'd an explanation from the neuropsychologist.
You've gotten some good comments here. Nothing I can add except support.

 

[SunnyNC]

Thanks Terry and all! It sure is great to have support from those who have been there done that. It has been quite a crazy experience so far!

I completely agree....I think we should have been told...SOMEWHERE along the line that the test was not going to be done..and why. Now I am on the defensive and since communication obviously was not even passed on to the psychometrist, even she did not know the test was not done and has no idea why. Yeesh!!

Have a great day!