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View Full Version : Back from the Dev Ped.... more questions now than answers


TraceyS/FL
07-29-2009, 12:19 PM
To say that wasn't overly informative is well.... an understatement.

I had taken the time to provide him with copies of all our evals to date, provided samples of her writing and a few other things i though might be helpful ahead of time for him to have.

I was told he reviewed everything before seeing patients - so all that was provided in addition to his 20 pages of forms i had to fill out.

So he hadn't reviewed anything but the test results that someone scored on the computer. Hadn't looked over the results and accommodations for the other evals, wasn't "getting" the broad spectrum issues that are sending red flags up to everyone else.

The OT wants a Neuro workup to rule out anything, the Ped wants one, the Dev optometrist wants one..... i didn't ask the Audiologist that question - but why am i thinking that since she has broad across the board low APD results he would agree?

He says that there is no reason for a neuro eval (all they'd do is an EKG & MRI of her brain), she has ADHD and would require meds to go into a classroom environment., oh but she can't go on meds because they slow growth down - and she is going on Growth Hormones to try to help her grow already.

Well maybe i flipping WANT the MRI & EKG (or is that EEG?) of her brain to make sure there isn't anything there??

The Ped didn't want to refer to the local Neurologist because she feels he only does ADHD patients (he's also practicing as a Ped). Well, that is all i felt i got today....

He even said, he was shocked at how well she just sat there on the table for over an hour. Normally ADHD kids can't do that - 10 minutes is there max, but he still feels it's ADHD.

Everything else he addressed on her scoring - is explained by other diagnosis. Seriously, if i'd gone to him FIRST, i'm not sure i would have gotten to get the rest of the evals done.

He did say he was sending her for Psycho-educational testing, but joy of joys, that department is backed up to about a 6 month wait.

Great.

We won't even cover the statement that she obviously learns best in a one-on-one teaching environment, but might learn more from another teacher. I won't go on more about THAT because this will be used in court. Right now most of her classes are distance learning with Bob Jones. I'm not the one fully teaching anyway - i'm the facilitator sitting there pausing the class, clarifying the directions, taking her compositions down as she dictates them, and on and on. Who does THAT for her in "the classroom" (all things that other doctors/professionals have said are needed accommodations for her right now.)

Anyway, i'm not sure where to go from here..... stupid HMO. I'm going to try to find a neurologist accepting patients and work from there.

But i'm not going to accept the ADHD (and he stopped short of calling her mentally retarded, but kept using it over and over, AND blamed all her other issues on her Turners Syndrome, but the geneticist says that isn't the case).

Dobela
07-29-2009, 04:19 PM
:grouphug: I am so sorry. I know you had hoped for so much more from this appointment. I think you are right to get a second opinion,and a third, if necessary.

If you ever have time, you may also want to write the clinic/hospital board and let them know how disappointed you were with the visit and why.

TraceyS/FL
07-29-2009, 04:32 PM
I did have high hopes, and those were also echoed the Ped, the OT and the Nurse Car Coordinator, which makes it more shocking.

I"ve talked to STBXH and he expressed how glad he wasn't there - because it didn't sound like he would have been able to sit there quietly. He agrees that she isn't ADHD and certainly NOT M.R., and that obviously this isn't the guy to help us pull this all together. Which is good - i needed to know i wasn't the only one thinking he was in left field.

I'm not sure where to go next... we see the geneticist next month and she might have a better feel for what to think about doing. I have to change their PCP to another office to get to the one i like so much (same group, different building), so it's going to be hard to see her until Sept 1 (HA, just called - they will do it for Aug 1!!! Great news!!!).

It's just a big bummer, i'm not sure how the heck to see about trying to see a Neuropsych either, they aren't in the book.... sounds like another phone call.

newbie
07-29-2009, 05:07 PM
I did have high hopes, and those were also echoed the Ped, the OT and the Nurse Car Coordinator, which makes it more shocking.

I"ve talked to STBXH and he expressed how glad he wasn't there - because it didn't sound like he would have been able to sit there quietly. He agrees that she isn't ADHD and certainly NOT M.R., and that obviously this isn't the guy to help us pull this all together. Which is good - i needed to know i wasn't the only one thinking he was in left field.

I'm not sure where to go next... we see the geneticist next month and she might have a better feel for what to think about doing. I have to change their PCP to another office to get to the one i like so much (same group, different building), so it's going to be hard to see her until Sept 1 (HA, just called - they will do it for Aug 1!!! Great news!!!).

It's just a big bummer, i'm not sure how the heck to see about trying to see a Neuropsych either, they aren't in the book.... sounds like another phone call.

Lots of hugs, it is a hard road going through ins. or even ps. Most of the time it is best to pay private.

Psych ed testing should be done by a neuro psych. Yellowbookforkids.com has info. for neuropsych in your area. I hope.

krisp
07-30-2009, 10:59 PM
I'm sorry you didn't get more from your appointment (reminds me of the neurosurgeon we saw with my dd....who told me that we needed to watch for incontinence in a non-potty trained child :001_huh: ). Hopefully you can get in to a neuropsych soon....waiting is the hardest part (other than bad appointments with no answers).

TraceyS/FL
07-31-2009, 06:43 AM
That is funny. My m said to me that he sounded like a few of the neurosurgeons my dad has seen over the years!

I'm not sure how to get to a neuropsych yet, I'm going to make an appt with the primary & see where to go.

Ugh. I'm still just flabergasted at the whole thing.