View Full Version : KKI Experience?

02-14-2011, 02:42 PM
Anyone go to KKI? What was your experience? I have to say I'm a bit miffed and disapointed by our experience. We went to their school aged clinic. I knew we were not seeing a devel ped right off the bat (but figured it's Hopkins, so they must have a certain way they do things). So, we saw a Nurse Practitioner. She talked with me for 1 hour (asking questions and marking stuff off on a sheet). She talked and did some testing with DS--math, reading etc.... After 1.5 hours of seeing DS she declares he has ADHD combined type (I wrote about this last week).

Here is what's bugging me. They want to see DS again in 6 months. Doesn't more testing need to be done (a neurologist and classroom visits etc...) to make a REAL diagnosis? Does 1.5 hours of seeing DS warrant a diagnosis. She basically told us to take the diagnosis back to our school and use it as a way to get DS services he needs.

I'm confused. Is this how it's done? What about seeing an actual devel ped? What about more testing?

Not that I want to put DS through more. I just thought there would be more indepth look at DS's issues other than just observations for 1.5 hours in a small exam room.

02-14-2011, 05:48 PM
I'm sorry KKI hasn't lived up to your expectations.

We didn't go to KKI, but I would be happy to share how our diagnostic process was done at our local children's hospital. Obviously our process is going to be different, since we were having a toddler/preschooler evaluated for ASD. But here is how it went:

DS was first seen by the developmental ped at age 2.5. At the first appointment we did a bunch of paperwork and the dev ped interacted with DS a little. We received a provisional diagnosis of PDD-NOS. (This was to allow DS to get services while the diagnostic process was going on.)

Over the course of several months, we had the following testing done:
- blood tests for genetic and metabolic disorders
- vision and hearing tests
- EEG to rule out siezure disorder
- OT eval
- Speech eval
- Evaluation by a child psychologist

Also, we filled out a some questionairres, as did DS's EI therapist and daycare teacher. They wanted adults from 3 different settings to participate in the paperwork.

About 6 months after our initial appointment, we saw the dev ped again and got an official diagnosis of PDD-NOS (later changed to Autistic Disorder).

Here is some interesting information from NIMH on how ADHD should be diagnosed:

02-14-2011, 07:00 PM
Ok, we sort of did things backwards. We went to KKI with the following already having been done:

OT eval
vision testing
county speech eval
mid-year teacher eval

The nurse practitioner had all this to read prior to DS arriving.

I've had over a week to think about things. We had a parent interview at a new school. We had to tell her about the ADHD diagnosis. She wanted to know if we were going to see a neurologist for further testing. I honestly have no idea yet as DS has been in a special school that make accomodations automatically and we have not heard from them that DS has issues during the school day (although their mid-year report did mention a few things--but they have never brought it up to us personally). This new school will not consider him ADHD (even with the diagnosis) until such time they see behaviors at school (they are a school for very bright kids to kids with some LD's and they do have extra support at the school for all the children). It just got me thinking. I was not really told what the clinic wants to do in 6 months (or see etc....).

Oh, and according to her checklist she said DS is not autistic and does not have Asperger's (she noted that he did not meet any of the criteria she was using to look for those--and per DS's medical history). I sort of had a feeling that DS might be a kid who just has SID (although I know it normally goes along with something) or SID and ADHD. Now I'm not sure what to think, but I'm at least armed with this preliminary diagnosis I guess.

Thank you for the link. I have to read it tonight.

02-15-2011, 09:12 AM
We didn't go to KKI either, but our experience was close to Gena's. We did speech and OT evals through Children's and the school system (and a hearing test), then saw a neuropsych for more complete testing, then a dev. ped. The dev. ped required 3 visits. The first was a parent interview, lots of paperwork, and a physical exam. Second visit was the actual testing. Third was when we went over things.

She ordered blood work for allergy testing and DNA, and rec'd therapy, etc.

We talked about a neurologist, but she wanted to hold off for a little while. We'll probably ask to see one at this point, b/c I think there's a possibility that DS is having absence seizures.

02-15-2011, 01:44 PM
I know plenty of people who go to KKI, but for a genetic bone condition, not ADHD type things, so I'm not sure how comparable the KKI visits would be. From what I've heard, it's quite common for people attending the clinics to basically be processed like a triage unit. They do rough evaluations just to determine who really needs to be treated there and who would be just fine with standard care, IYKWIM. I've heard a lot of people say they didn't get to see specialists until later on in the process.

Are you sure the person was a nurse practitioner or was she a fellow? Did she disappear for a while and then come back with the "results" or just she just make the diagnosis on her own? It could be that she did consult with a doctor prior to giving you the diagnosis, especially if she is a fellow.

My DD is seen by a specialist at Cedars-Sinai here on the west coast, and it always irritated me that every visit we'd go in and be interviewed by a fellow for almost an hour. Then the fellow would disappear for long time, the doctor would come in for a few brief minutes and that was about it. I was like "why am I wasting my time coming all the way here just to be seen more by a doctor-in-training instead of the actual specialist?" Then by chance when my DD had a broken arm, the ortho on call had done her fellowship at another local children's hospital (that operates like KKI). After talking with her at follow-up appointments I was able to get a better understanding of how things really work. She said a HUGE amount of discussion and diagnosis goes on behind the scenes instead of in front of the patients, so even though it seems like the doctors aren't involved, they actually are.

Do you know if there is a specific doctor in charge of the ADHD related cases at KKI? I know the doctor at KKI who deals with our bone condition fields emails and calls from people who aren't even patients of KKI, and he also has at least one facilitator who helps people with questions about the process of being treated at KKI. Perhaps there's a similar type of person at KKI who could answer your questions about the process for your situation?

02-15-2011, 02:46 PM
All I know is it was not a fellow. She made the diagnosis right with me (didn't leave to confer with anyone). I'm hoping that in 6 months when we are supposed to go back that more is done. I'm actually calling this week to find out what happens at 2nd appt.

03-28-2011, 11:27 PM
I was very pleased with our experience at KK for ASD eval.

03-29-2011, 02:12 PM
We are now also seeing a psychologist from KKI. Had our first visit last week and go back again in a few weeks for more. They said most likely 8-20 visits (they are not a long term program). And they suggested CBT plus helping us (DH and I with things we can do for him at home).

03-29-2011, 05:42 PM
We went to KK for ds. It was a second opinion. We saw a developmental ped. He met with us and did a few tests with ds as well as a physical. We had already had a bunch of blood work done to rule out various things and had a bunch of evals from other sources (EI, public schools, first opinion from horrid neuropysch). He was a prof. and had a fellow sit in with our permission.

He ruled out autism and autism spectrum based on that. He gave a very general dx, which amounted to "this kid isn't neurotypical" and gave us some general recommendations, ie continue speech and OT since they seem to be helping and otherwise do typical kid stuff (like go to kinder music, not music therapy). We had a couple of follow up appointments and got somewhat closer to a dx, based on our reports of ds and his observations during the appointments. We moved, but if we still lived on the East Coast we would still go to him for follow up.

He really nailed ds. He really got what the issues were, made good suggestions about what we should be doing and was right on about how ds would develop.

04-08-2011, 12:44 AM
My experience with KKI/JH was similar. While it was a follow up to confirm add and spd dx and rule out anything else in the spectrum, we expected more than np and interns. The suggestions of following up were unrealistic and they were unable to guide us on alternatives. Overall we felt dismissed and not like we were taken seriously there. We did change regular peds and our new one has done considerably more testing and guiding/offering suggestions than KKI/JH did.