neuropsychologist appointment

Discussion in 'General Parenting' started by Dara, Apr 7, 2007.

  1. Dara

    Dara New Member

    We just came back from the neuropsyhcologist. I have no idea what the heck the guy was talking about! He went on and on using big dr words that neither of us understood. The only thing we got out of it was that he did a test showing that sammy did have heightened anxiety. However that did not help us much because he gave us no ideas on how to handle his, i quote now, "volcanic like behavior"
    :smile:
    SO now we sit here saying ok, now what? He might be anxious a lot but what do we do about it? We now have to wait until may 30th for his developmental pediatrician. I know that appointment will at least tell us where we are developmentally however, shelling out the 750 bucks...
    I have had it with these people :grrr:
    Dara
     
  2. smallworld

    smallworld Moderator

    Dara, I'm sorry. You sound so frustrated.

    How much time did the neuropsychologist spend with you? How much time did he spend with Sammy? What kind of testing did he do on Sammy? Did you fill out any forms or questionnaires for the neuropsychologist?

    My kids are admittedly older, but for each of their neuropsychologist evaluations, I had to fill out tons of forms and questionnaires. I also gave a 30-minute verbal developmental/medical history to the neuropsychologist. The neuropsychologist then tested the kids for 8 to 10 hours over a few days. The neuropsychologist met with husband and me for an hour to go over his findings. He then wrote an 18-page report detailing his findings and recommendations for intervention.

    Standard treatment for kids with anxiety is medications and/or therapy. I'm guessing that a child Sammy's age would need to be engaged in play therapy.
     
  3. Dara

    Dara New Member

    We spent about an hour or so there. We had no paper work to fill out and really had minimal interaction with Sammy. THe only test he did was put these electrode things on his fingers to measure his anxiety levels in his capalaries or something like that. He had my husbands measured too so he could show what normal would be. Sammys levels were high so that makes sense. But that is the only thing that made sense. There was no recomendations for how to handle his stressed and anxious explosive behavior. NOTHING! This was the biggest waste of time and money ever!
    The developmental pediatrician. We are looking forward to because we know he has delays and we will see how far along we are there. I dont think we are going to find anyone to help us here!
    Dara
     
  4. shutterbunny

    shutterbunny New Member

    Dara,

    that's pretty half *something'ed* if you ask me...was this guy board certified in pediatric psychiatric and pediatric neurology? Also, I'm wondering who referred you to him...insurance company, pediatrician, neurologist, friend? In searching and searching for answers for our difficult child, we finally got lucky when we had some great neurologists and our pediatrician all recommend the same neuropsychologist. He's expensive and of course doesn't take insurance, but he's been worth it. He spent 1.5 hours with us the first visit and he asked for any forwarded medical/personal evaluations to be held until after we left. He said he'd rather go in not "knowing" and talk to us and difficult child and make his determination, then look at the medical/personal evaluations (on his own time, not charged to us) and see if they agreed or not (if so he said great, if not, he said he'd do another evaluation. of over an hour for the 15 minute price). He did spend the first session talking mostly to us, but then had some time to inneract with difficult child (he was great) and then back to us to tell us what he thought. Second visit was 90% spent with difficult child and 10% with us...all phone calls returned within hours...our latest visit (yesterday) was scheduled because of some perseverating difficult child's been doing that has worried us...he charged us a 15 min. appointment. but stayed with us for an hour, most of that time he talked with difficult child *4 year old* and getting a handle on why he might be stuck on some distressing thoughts/actions.

    I only say this because of the three neuropsychs we were told were "good" possibilities, we chose the one we did because after talking to our pediatrician and all of the neurologists, this guy got the best recommendations for being compassionate and helpful, not just smart...I think if his only "diagnosis" possiblity is something a machine told him, he's not taking enough time to learn about his patient, and that's close to being neglectful in my mind. Is there any way you could ask around about this guy's reputation for digging for answers and exhausting possibilities? Perhaps if all of these "reviews" are favorable, you could call and ask him to talk to you via the phone for a few minutes because you had questions about the evaluation...then you could ask him if he can find a way to at least give you a plan...if that plan doesn't work, ok, then you go to the next plan, but you need to know that a map exists, if you wanted to be told something you already knew without any idea of where you should go, I'm guessing you could have just sat down with your husband and figured all of that out by yourselves! No expensive equipment required. An hour with him for initial evaluation with only one observation that you could have told him before the meeting started and no help lended to you isn't really what is supposed to go on...he should have at least given you a starting point to work from. Our neuropsychologist still says he's not entirely certain about a specific diagnosis but he's sure it is going to fall under one or two "umbrellas" of mood disorder categories...he gave us non-medication options to try as well as a few medications to think about and we went over the pros and cons of each and decided on a point A to start...so far it is helping but we'd never have reached that point without him giving us a place to start. When you go to the dev. pediatrician, I'd have some things written down...outline of behaviors that bother you as well as anything the school system or other professionals have thought about, and I'd tell the guy up front, look, we've been asking for help for "x" amount of years and we need something more than just "he's anxious." We know that but we need a plan. Sometimes if they know you aren't going to accept half baked attempts at taking your money with no return on your investment, they'll be more apt to put their thinking caps on. Seriously, I'd call the neuropsychologist's office and tell the person who answers the phone that you need a few short minutes of his time in the next 24-48 hours and then I'd tell him, hey look, we spent a lot of time and effort and money to get in to see you, and you basically told us nothing new, you're supposed to at least give us a plan...maybe not the right one, but at least give us something to try! (but then again, I'm a pushy broad!)

    Best of luck...if you were closer to my neck of the woods, I'd tell you to dump the guy and check out our guy...Best of luck to you.
     
  5. Dara

    Dara New Member

    We found this guy ourselves. The only other neuropsychologist that we found no longer exists. All of the school districts no of him and they had nothing bad to say about him. I think our real problem is that Sammy is too young. He will be 3 in june but still, most pshych dr wont even make an appointment with him until he is 4. The only thing that every dr we have seen agrees with is that Sammy does not seem to be autistic in any way. I read this book called <u>[/u]QUIRKY KIDS </u>and that seems to sum Sammy up. I know that the dev pediatrician. appointment will help us figure out where we are now. Maybe once we get that done we can figure a plan of where to go next. I am actually surprised that Texas Childrens hospital doesnt have neuro psychiatric doctors on staff. If anyone in Houston knows of any good doctors let me know!!
    Thanks for your reply, I appreciate it!
    I must go get sammy his nap has ended!
    Dara
     
  6. shutterbunny

    shutterbunny New Member

    Dara,

    We started looking when difficult child was 6 months...you're right, a lot of psychiatric won't see children younger than 5, and because of that we started with a neurologist. I'm not sure if you've gone that route, but if not, it's worth a try...our neuro started with eeg's to see if there was any brain-wave abnormality and if so what region of the brain it came from (ie, areas that control impulse and rage) and other tests to rule out environmental issues, etc...our pediatrician was involved only as far as giving us referrals where needed to neurologists, psychologists (maybe for when difficult child is older, but not overly helpful when he was a year old)sleep specialists, etc. We stayed under the neurologist's care for years because of some findings on his eeg and then when we were ready to stop seeing the neurologist (he was helpful but not getting us where we needed to be) difficult child had a huge grand mal seizure...needless to say, the neurologist is staying on board for the foreseeable future, but after all was said and done, he was at a loss to recommend anything else to help with what he clearly saw was a problem that had a definite neurological base and thus asked us to see a neuro-psychiatric. I know they are definitely hard to find, but many neurologists know of two or three that they have worked with, and having a neurologist on the case may help (if you haven't been down that road). Just a thought.

    You're in my thoughts and prayers, really, I know how hard it is to feel like you're on an island with no professional help...it's enough to make you question just about everything. Hang in there and I hope you get some answers.
     
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Dara, hate to tell you this, but the neuropsychologist was a bad one. Our son was tested for twelve hours in two hour increments, observed, tested and we had to fill out a gazillion forms. Does'nt sound like your usual neuropsychologist exam. I'm soooooooooooooo sorry. We checked around and asked people for a good neuropsychologist, so we didn't just go in cold.
     
  8. Dara

    Dara New Member

    We do have a neurologist. We have had 2 others before we found the right guy for us. The last one who came highly recomended yelled at us because we had concerns with getting a 24 hr EEG. Sammys behavior was so bad we couldnt imagine doing this in our home. Needless to say, He wouldnt listen to our concerns and look at Sammys best interest. Sammy had seizures at 11 days old and was in the NICU for 4 days. They found no cause for the seizures after doing every test they could think of... Needless to say, this behavior is not being caused by seizures. This neurologist said unless he has 2 brains, this is not a seizure problem. Sammy is perfect for other people and violent for us.
    The neuropsychologist is known in our school district and they had nothing bad to say about him. I dont know.
    The dev. pediatrician will be a worth while visit to get a second opinion from our original tests in october and also to see where he is now. We are not sure how much language he is understanding. It is a very strange thing. I know that that visit is at least 3 hours and we allready filled out all of the paper work so... and this guy was recomended from our dr and the school district so..
    I dont even really need to hear what it is that he has at this point, I just want help in dealing with his behavior.
     
  9. smallworld

    smallworld Moderator

    Dara, my understanding is that not all causes of seizures can be identified. Has Sammy ever had seizures you've noticed since the episode at 11 days old? Was he ever treated with medication for seizures? Does he ever get dilated pupils or a blank look in his eyes?
     
  10. Dara

    Dara New Member

    He was on medication until he was a year. He has had EEGs since then and MRI and everything always comes back normal. He does not have the blank stare or anything like that. I had childhood epilepsy so I know what to look for and pretty paranoid and probably overly cautious about it. The reason they are saying it is not seizures is because his behavior is so controlled to the outside world. They were thinking for a while that his behavior was being caused by seizures. However, this is not the case. We do have another appointment for sept. With the neurologist.
     
  11. smallworld

    smallworld Moderator

    What medication was it? Did his behavior worsen once he went off the medications?

    You may know that many of the medications used to treat epilepsy also treat mood disorders.
     
  12. Dara

    Dara New Member

    He was first on phenobarb but they changed it within a month because he wasnt sleeping and screaming all of the time at 1 month old. Then he went on trileptal, his behavior and no slppe continued. He went off trileptal when he turned a year and his behavior stayed the same
     
  13. Dara

    Dara New Member

    I wanted to say the more I think about yesterdays appointment, the angrier I get! :grrr: We literally just flushed 250 bucks down the toilet. That was not an evaluation.. I dont know what the heck that was. I AM SO MAD!! Calling and complaining to this dude wont help because I dont trust his opinion at this point anyway. THIS MAKES ME FURIOUS!!!!
     
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