neurologist vs. neuropsychologist vs. therapist vs. psychiatrist ...

[OneStepAtATime]

DS's pediatrician (who has only met him once) referred him to a neurologist.  Even though we talked about the need for evals for the dysgraphia and auditory processing issues, they referred us to the neurologist and wrote on the referral that it is because he has been having issues with depression and anxiety (which he has).  I suspect ADHD but that did not come up during our conversation since the doc was lobbing questions at me regarding other topics.

 

So do we go to the neurologist?  The neuropsychologist we intend to take DS to (another city) said she would prefer to wait to see DS until after he has had extensive vision therapy (VT is supposed to last 10 months).  We have not found a local therapist I would even trust my cat with.  What would a neurologist be able to do?

 

Keep in mind I don't trust the medical community where I currently live and the referral is to a local neurologist.  The neuropsychologist is several hours out of town but comes highly recommended and will be evaluating DD in the fall, and probably would evaluate DS sometime next summer.

[PeterPan]

Wow, I must really misunderstand what a neurologist does.  A ped once suggested that for my dd, but that's because she's low tone.  Is he saying he wants a brain scan done?  He suspects something is going on?  You don't want to miss something, but if this doc is actually thinking there's something serious going on, I'm with you that it would be good to go to a major city and get it figured out.

 

I think, just in general, it's no shock for someone with ADHD and SLDs to have anxiety and depression.  The anxiety *can* improve with ADHD meds, ironically enough.  I know sometimes it makes it worse, but sometimes it's the opposite.  Maybe have that ADHD discussion with someone else (another ped) who is better about actually talking?  You know i'm all for psych evals, but given his age and the level of frustration and that you're saying you need to do significant interventions, I think I would do the ped screening for the ADHD, get the meds for that, see how much of the APD symptoms and anxiety that improves, and use that improved function to make all the other therapies go better.  That would be a way to triage it.

[OneStepAtATime]

I guess I will cancel the neurology referral I'm just baffled at the neurology referral. I specifically suggested an OT evaluation for his dysgraphia issues and I wanted an evaluation for CAPD. I guess this is who they think we need to see first? But they didn't even mention those on the referral, just the depression and anxiety. I suspect they are clueless about learning issues. Unfortunately our original pediatrician left (nice but also clueless but at least she actually knew my kids) and the one we have now is never available. Seen him the one time then it was nurses after that.

Edited June 8, 2016 by OneStepAtATime

[VinNY]

We saw a pediatric neurologist. They can diagnose motor planning issues like dyspraxia etc and rule out other neurological issues. It was one stop among many to fill the file. 

[geodob]

Neurologists specialize in the brain, spinal cord and the central nervous system.

Who don't have training to deal with depression and anxiety.

So that the neurologist will probably be puzzled why your DS was referred to them, with depression and anxiety?

 

[Lecka]

Could he have filled out the referral form wrong?

 

Could he have just entered the wrong code into the computer?

 

I have had that happen when referral forms have come back and seemed strange.

 

I think sometimes the person inputting the code into the computer will not recognize a mistake, or some kind of factor that would mean they need to enter a field differently.

 

To me, I would call and talk to someone in the office, who would look on the computer, if I honestly thought it might be a mistake.

 

I would hesitate to cancel in case it is legitimate or a required hurdle, though, to "rule out blah blah."

 

But if you are having a co-pay I would want to know more.

 

I mostly do not have co-pays, but I do have to follow a bureaucracy that does not always make sense or that requires things to be ruled out in a certain order.

Edited June 8, 2016 by Lecka

[OneStepAtATime]

Could he have filled out the referral form wrong?

 

Could he have just entered the wrong code into the computer?

 

I have had that happen when referral forms have come back and seemed strange.

 

I think sometimes the person inputting the code into the computer will not recognize a mistake, or some kind of factor that would mean they need to enter a field differently.

 

To me, I would call and talk to someone in the office, who would look on the computer, if I honestly thought it might be a mistake.

 

I would hesitate to cancel in case it is legitimate or a required hurdle, though, to "rule out blah blah."

 

But if you are having a co-pay I would want to know more.

 

I mostly do not have co-pays, but I do have to follow a bureaucracy that does not always make sense or that requires things to be ruled out in a certain order.

Good point but the reasons were written by hand onto the referral sheet so I assume they were writing what they want checked.  I am planning to call the neurologist's office tomorrow and see if I can get some additional information.  Calling the pediatrician has proved fairly useless in the past.  He is only at this office twice a week, 3 weeks out of every month.  He is in another city the rest of the time.  

 

We do have a deductible to meet so I am trying to conserve resources.  I still haven't gotten the word on whether insurance will cover any of the VT (kind of doubt it).

[PeterPan]

And they would want a neurologist before VT???  If you're paying for both, that's pretty ouchy.  Around here a hospital neurologist was like $350 an hour.  I turned it down for dd.

 

I definitely hope you can get figured out why you're being referred, mercy.  Let us know.  :)

[OneStepAtATime]

And they would want a neurologist before VT???  If you're paying for both, that's pretty ouchy.  Around here a hospital neurologist was like $350 an hour.  I turned it down for dd.

 

I definitely hope you can get figured out why you're being referred, mercy.  Let us know.   :)

:laugh:   Yeah, I hope so too.  This drives me nuts.

[prairiewindmomma]

OneStep, I'd wait for the neuro-psych (and if they are good and in my neck of the woods, would you pm me the name?).  I am having a dang hard time finding someone that I think is worth the time, money, and waitlist we have to go through.  

 

Have you thought about trying to find a developmental pediatrician?  My pediatrician is very, very good, but if he wasn't, I think I'd try a developmental ped. to try to find someone more conversant with the issues you are dealing with.

[momof4inco]

I would also wait for neuropsych eval, if that's what feels right to you. If they think you need to see a neuro, they'll tell you and recommend someone they are familiar with. It would get you around the local neuros at the very least (we have horrible neuros here, too).

 

On the neuropsych eval we had done for our son, they also recommended other things (therapies and doctors) that we might want to look into, as well as some services we weren't aware of.

 

It sounds like this pediatrician is new to you... Did you "click" with them? Did you feel like they were actually listening, or making decisions based on their impressions? I have found that a good pediatrician makes all the difference in the world. Our son would have been diagnosed with many things earlier, if we had just switched pediatricians.

 

Many years of cruddy doctors and unnecessary tests have made me trust my gut. You're the mom, go with your gut :)

[kbutton]

I would ask the neurologist you are being referred to if they usually get referrals for depression. I would maybe mention the other issues that might be in their wheelhouse (for instance, sometimes they do neurological testing along with audiological testing when they are trying to rule in or rule out CAPD). It sounds like it's coming backwards though--usually the audiologist would refer to the neurologist, I believe. I am not sure how neurologists feel about vision therapy--you might tread carefully with that information, but if you are looking at OT and CAPD, those are tangentially related to neurology. I would act like I was trying to clear things up with the neurologist ("I think my pediatrician made a mistake--we're concerned about depression, and we have some learning issues...do you normally see patients for these things, or do we need to get an OT referral and a referral for the depression? Just wanted to check before we waste your time and ours..."). Maybe you'll luck out and get a great referral to the right people from the neurologist (ever hopeful on your behalf...).

 

The ped sounds clueless or like they think all issues are brain issues that will show up on a report somewhere. Weird. 

[Citrusheights5]

I went that route. Ped recommend a neurologist, who did a scan and ruled out any physical problems who then recommended us to developmental Ped, and the testing that led to adhd and dyslexia. It's seemed silly to me, but by doing it that route insurance covers it all expenses. Unless it is to have insurance cover later testing it makes no sencE so see a neurologist.

Edited June 11, 2016 by Citrusheights5

[OneStepAtATime]

I was not able to talk to the neurologist directly but hopefully will get a call back on Monday.  In the meantime I did find out that this doctor is one of two on staff at a Children's mental health clinic (not local but in a nearby town).  Have only found one review so far. The lady liked him a LOT (did not say why they were there) but hated the nurses and office staff.  She felt they were rude, uninformed and uncooperative.  That is only one review, though.

[PeterPan]

Oh Onestep, somehow that really makes me laugh.  Just the idea that we're SHOCKED that medical staff would be rude, uninformed, and uncooperative, lol.  I think I've been in too many meetings.  I'm just jaded.  I don't even know how people sleep at night sometimes, like how they can stand themselves when they go home and actually THINK about what they did and how they treated people.  I don't think they do.  I think some people just turn off their souls.

 

Anyways, as long as that appt is not going to hinder your ability to have other appts, it sounds like it could be interesting!  Keep us posted!

[wapiti]

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Edited September 15, 2016 by wapiti

[OneStepAtATime]

Random aside/rant:  what is disappointing to me is that, while IMO it makes total sense to rule out physical problems with the central nervous system first (um and middle and last), I have very little faith that a typical ped neurologist can really do so.  What I mean is that the problems they'll look for are not cutting-edge enough - too little is known or at least "known" inside the context of current mainstream medicine.  Who I really want to see is a neuroimmunologist; for now we are stuck with a way-outside-the-box immunologist as the best we can do, though still that's just the one angle.  There are additional physical biological angles I prefer to consider, but no one doc seems to bring them all together at this point.  (ETA, holy cow, I just thought to google neuroimmunology and there is a department that is a subset of neurology at our local major research university hospital....  hmm....  I wonder whether it would be worth the price of a consult to dare tread with mainstream docs for a pandas kid)

That's why a friend of mine decided to bite the bullet and get a FULL work up for her children at a major clinic several hours away where there is a team of doctors in many specialties along with a coordinating doctor.  They run a whole slew of different tests in a specific sequence based on whatever other test results occur and they all meet as a team to keep lines of communication open and make a determination as to where to go next to get a fuller picture.  The workup is extensive and expensive.  We don't have the money to go that route ($10,000 minimum).  Even if we did, although having something like that in place seems like it would actually cut out a lot of wasted time and effort and frustration I would be concerned that my child was being put through the ringer unnecessarily if they were test happy.  My friend was very happy with the results, though...

[PeterPan]

OneStep, is it possible that your ds' symptoms actually have simple explanations?  I mean, mercy, at some point a system like that is only feeding the system.  It should not take $10K to diagnose ADHD and dyslexia.  I'm all for thorough evals, but that's a lotta change to be made the new standard for adequate evals.  

[OneStepAtATime]

OneStep, is it possible that your ds' symptoms actually have simple explanations?  I mean, mercy, at some point a system like that is only feeding the system.  It should not take $10K to diagnose ADHD and dyslexia.  I'm all for thorough evals, but that's a lotta change to be made the new standard for adequate evals.  

Yeah, I agree.  We won't be going that route.  She chose it because one of her children also has unusual and quirky health issues and they have the money so after a few years of nickel and diming and piecemealing their way through haphazard evals down here they gave up and started over with the full work up out of town and decided to run both kids through.