Getting a diagnosis through Kennedy Krieger?

[KimPM]

Has anyone had any experience getting their child a diagnosis through Kennedy Krieger (in Baltimore)? (For spectrum and/or anxiety - SPD isn't an "official" diagnosis) I'm wondering if I should attempt this, if it would even be helpful. What should I expect? What was your lead time? How long does the diagnosis take...is it an all-day thing, or a couple hours or what? What do they do to diagnose...observe play, observe interaction with other children?

He's already had feeding therapy privately, and he's probably gotten all he can out of that. What I'm seeing he needs now is something to help him with social interaction, social anxiety, as well as understanding social cues on how other people feel. He only "gets it" when it's very very obvious, like a big smile or a big frown. Anything else and he's lost. I'm not sure what kind of therapy would help that, and I'm certainly the wrong one to be helping him there.

[goobergrl6]

We have now had appts in 4 different departments at KK. With 1 more, OT at the end of May. I called and made the first appointment telling them some things about William. The first appointment was in the developmental delays department. That was about 2 hrs. She talked with me and did some things with William. She then referred me to the audiologist, Speech, and OT. The audiologist got me in in just a couple weeks, Speech was a little over a month out but when I went for Aud, they had an opening for the next day so that was nice. For the speech we were there about 3 hrs. There was talking to me and a bunch of testing for him. Then she recommedened that we see a behavioral psychologist and they got me in a little over a week later. That was just us talking for the first appt while he played in the room. Then on the 21st we FINALLY have our OT appt. I think he has SPD. The OT eval should be about 2 hrs. If you have any questions let me know.

[Climbergirl]

Kim,

Just wanted to give you a hug! My first cousin is autistic and my nephew has sensory integration issues. It is always an uphill battle it seems.

I don't know of local resources, but I can post on the national HMN loop if you like. Just shoot me an email and I can put it up and then send you the responses.

Let me know

Sedj

[KimPM]

goobergrl - you really drove a good distance to get to KK - and two days in a row. Are you doing all the therapy up there as well, or is the behavioral psych local to you? So far, it sounds like it's been mostly data gathering on their part...not much therapy yet(?) What do you think of their diagnosis and opinion so far, do you feel they are approaching it the right way?

Sedj - yeah, it has been pretty much uphill for the last 4 1/2 years, though things have kind of leveled off a bit this past year. I'm just taking it one day at a time. Not sure what else I'd ask for on the HMN forum. Guess I'm just not sure who we need to see right now. Since KK is known for their work in this area, I kinda figured they might be the ones to get an official diagnosis from, whether or not we do any treatment for it. I was hoping they might at least point me in the right direction.

[kme]

My son was evaluated at KK Center for Autism and Related Disorders. The intake questioning was fairly extensive and I think that's how they decide who you will see, how extensive the eval will be, etc. After the intake call, they call you back later with your appt and the name of the doctor you will be seeing.

Our eval was with a neuropsych and lasted all day. She did testing in the AM, we had a break for lunch and then she did testing again in the PM. She evaluated him alone (not with us and not with other kids.) Afterwards, she sat down with us for a little while to give us her impression.
About 2 weeks later we got her written report which was fairly extensive and we had a follow-up phone appt where she went over the report.
She did pretty much dismiss SPD, which bugged me a bit since that is his primary problem and he has since been diagnosed with SPD as his primary diagnosis (she dx ADHD and a language disorder). Despite this, I did think it was a good eval and I would recommend them. I understand SPD is not a vaild dx and therefore many practitioners are not going to diagnose it. That's just the way it is.

We had to wait about 9 months for the appt. She wants to see him again in 2 years for a follow-up and I will definitely take him back for that.

Good luck!

[KimPM]

kme - thanks for the great review - is he getting any therapy for those diagnoses?

[kme]

He goes to OT (which the KK doctor did not recommend - she said most kids with dx like ADHD, ASD, etc have sensory issues and OT doesn't really do anything) and Speech therapy. He was already doing these therapies when he was evaluated at KK. He is still doing both.

I took her SPD/OT comments with a grain of salt. She is obviously not a "believer" of SPD and that is OK. I do believe in it and I think that is my son's main problem (as I said, he has since be dx with SPD by a developmental pediatrician).

The testing at KK revealed my son's slow processing speed which has been key to understanding him. While his IQ is normal, his processing speed came out at around 80 (normal is 100). This put him at around the 20th percentile. In a few isolated areas (language related) his processing speed was at the 1st percentile which of course is greatly affecting him. He is always a few seconds behind everyone else. It takes him longer to process any type of info - whether it is auditory, visual, etc and then act on it. So his communication, motor planning, etc are all affected. The KK doctor gave us a list of recommendations to help deal with that as well as his other symptoms.

I have found going to several different doctors with different backgrounds has given me a more complete picture of what is going on with my son - who doesn't have a clear-cut dx and whose symptoms are kind of a grab-bag from so many different disorders.

As I said, I did like KK and will return for the follow-up.
Good luck!

[goobergrl6]

Sorry I read this one day on my phone and ment to come back and reply and I forgot. LOL

Yeah it is a hike. I do not mind though because I know I can trust them. Right now everything has been an eval. We will be starting private speech (he gets some at school right now) and that will be local. Also if he need OT it will be local. We are going back for bahavioral but since I live so far it will most likley be only once a month or every 3 weeks. Whatever I feel like we need she is willing to do so that is nice. Also the developental doc we saw first would like to see him every 6 months to see how we are and monitor him for anxiety which she thinks he might be at higher risk of developing which I had never thought of but TOTALLY agree with.

So far I am ver happy with everything. I think it has been a wonderful experiance and everyone has been great. The OT is this Friday and I am very nervouse/anxious/excited. It is going to be a long day since we also have the other behavioral appt in the afternoon but I think it will be ok.

Overall I am really happy with everything and would recommend them in a heartbeat!

[heatherdeg]

Originally Posted by kme

My son was evaluated at KK Center for Autism and Related Disorders. The intake questioning was fairly extensive and I think that's how they decide who you will see, how extensive the eval will be, etc. After the intake call, they call you back later with your appt and the name of the doctor you will be seeing.

That was our experience, too. In fact, at the time, we didn't even suspect autism. Ds was just profoundly delayed and they specialized in all of it. They reviewed his Early Intervention evals at some kind of "roundtable" I guess and determined where he best fit--and it just wound up in CARD. Unbeknownst to us, the Dr. we saw cleared room on her schedule to see ds... so we waited like 4-6 weeks.

Originally Posted by kme

Our eval was with a neuropsych and lasted all day. She did testing in the AM, we had a break for lunch and then she did testing again in the PM. She evaluated him alone (not with us and not with other kids.) Afterwards, she sat down with us for a little while to give us her impression.
About 2 weeks later we got her written report which was fairly extensive and we had a follow-up phone appt where she went over the report.

We drove from NJ for his evals and they always set us up to do evals in the morning, lunch break, then the neuro (who reviewed the morning eval and added his own few things) in the afternoon. We got reports from both within 2 weeks but never a phone follow up. That being said, we were there for re-evals every 3 months for that first year. When he aged out of that group of specialists, we were way less impressed with the next group and just stopped going. At that point, he was about 2-1/2 years old or maybe 3 years old and other than our school district's testing (which was pretty extensive last May when he was 5yo), he wasn't neuro eval'd again until this last fall and we did it here in NJ.

I was very pleased with their reports in that they're so detailed that I was able to advocate or Early Intervention services and district services better with their reports to back me up. They kinda can't argue with KK.

[KimPM]

Thanks heatherdeg. That's very helpful information.

[BetsyNY]

How do you all do this? Did your insurance cover it? We need feeding help with our son; he has a very limited diet, constipation, sensory issues, etc...we're five hours away from KK but it's possible, we'll do it.

[KimPM]

Originally Posted by BetsyNY

How do you all do this? Did your insurance cover it? We need feeding help with our son; he has a very limited diet, constipation, sensory issues, etc...we're five hours away from KK but it's possible, we'll do it.

You may be able to find someone locally instead of having to travel to KK (unless you just want the diagnosis). We didn't need a diagnosis just to do feeding therapy. Both OTs and speech therapists can do feeding therapy...but not just any OT or ST. Apparently feeding is a specialized cross-discipline that requires extra classes and training, as well as extra patience and interpersonal skills to get it just right.

For feeding therapy, we started with EI services (he was 11 months old when we started) - we tried them for about a year. However, in our case they didn't turn out to be helpful. Then I waited months for the Children's Hospital feeding program in DC, and they were no help either. (They told me the breastfeeding was the problem , and their therapy was totally behavioral. I wasn't impressed with their nutritionist either.)

So I looked for a local speech therapist who specialized in feeding therapy. (They are few and far between!) We found a great one locally (who came to our house!). She did not take insurance, but we submitted receipts anyway (we have a PPO plan that has some out of network reimbursement) and they paid some. It was worth it, since feeding is so important. I called around to ALL the PTs and OTs I knew or even just knew of (check your insurance listing and call all kinds of therapists with questions). I asked them specifically for the kind of therapist I was looking for. I needed her to work with our breastfeeding, and not tell me that was what was causing the problem. I also didn't want behavioral therapy, I wanted play-based therapy, which worked well for our DS.

When we go to KK, I am specifically going to avoid having him do further feeding therapy through them, as I understand it's behavioral there. I am going for the diagnosis, and to help his social and anxiety issues.

[BetsyNY]

Is there another kind of diagnosis they could give him? He's ADHD/SPD, anxious, etc.

[goobergrl6]

Well Friday we had the OT eval. It was a DISASTER! Not their fault though. We got there and we talked for a few while DS played. Then she tried to do some fine motor testing with him (which I told her we were not worried about and that the Development testing had done it already) but he would not do it. So we got him into the big gym...he kinda fluttered to and from everything for a bit just checking everything out. After about 5 mins she brought him back into the room to continue testing while I fild out some questionaires. Well he had a MELTDOWN! Nothing would calm him. We tried switching tot he little gym and nothing worked. It lasted about 30-45 mins and eventually we just left. She brought out a bunch of stuff to try and help calm him but nothing worked. I had filled out the huge form on one of the SPD sites (like 17 pages) so I left her with that as well. She does agree he has SPD. The form they give you when you check out has a diagnosis section on it they use for billing and such. It does not list SPD but the put it under neuromotor abnormality. It looked like a fun place to get OT at but with us being over 2 hrs away it will not work for us. So sady I can not tell you more about the testing since William would not do any of it.

[dleib001]

came 2500 miles, so worth it.

Hi,

My kids and I are leaving friday for a month at KKI, tuning up his home program. I do have to say his first doc was not real communicative, but he was suspected initially as having a metabolic dx, (her specialty) when that wasn't the case she just didn't get too involved. His new doc Wilms-Floet is FANTASTIC. She is very communicative, answers her emails, and has worked to get my four year old good care. We currently live in a backwater in eastern washington (great for my typical kid, and great for my ASD kid if he didn't need to be educated or have speech therapy). My husband used to be an attending at hopkins and I did rotations there, and we knew we would trust the diagnosis if it came from KKI. They are at the forefront of early intervention (there was a one year old from the Maldives there) kids from Lebanon, Senegal, South Africa, and even us from Washington come and get a good diagnosis and treatment plan then go back to where they came from and implement it.

We actually stayed seven months while he attended the Achievements program, which his their language preschool. His teacher was fantastic, she even let ben's home therapist come and get involved to pick up some tips. I can't tell you how much better the care is there than here. We hope to be moving in the next year to be closer to a therapeutic school. Do what it takes to take control of you kids care, every day is one less day of fluid, dynamic brain development. Jump on it with both feet!

Good luck,

Elle

[goobergrl6]

Originally Posted by dleib001

Hi,
His new doc Wilms-Floet is FANTASTIC. She is very communicative, answers her emails, and has worked to get my four year old good care.

Elle

Dr. Anna (much easier to say LOL) is who we saw there first and I LOVE her! William even let he look in his ears (he was not happy but he sat there and did not scream. He just gave her the evil eye) which is HUGE! He HATES people looking in his ears but he felt so comfortable with her he let her. She was also able to get him to do most of the testing she wanted him to do. I really attribute her to his new attitude with going to the doctor. Before that visit a mention of going to the doctor set him off with "NO! NO HURTA ME!" Now I tell him we are going to the doctor and he just makes sure he is going to get lunch out somewhere on the way there LOL.

We have an appointment there at the behavioral center (closer to the harbor) on June 18th if you would like to meet somewhere at the harbor for lunch. I know it must be hard being somewhere for a month where you do not know anyone.

[firsttimemama]

I haven't been to KK yet. I have called them though. My son may be on the autism spectrum. I am working with Infants & Toddlers. Is that who your feeding therapy was through.. your local Early Intervention type program?

[KimPM]

Originally Posted by firsttimemama

I haven't been to KK yet. I have called them though. My son may be on the autism spectrum. I am working with Infants & Toddlers. Is that who your feeding therapy was through.. your local Early Intervention type program?

Our first feeding therapy was through EI - Infants and Toddlers in our county in Maryland. In our case, the EI therapists just weren't helpful. I hope you find therapists better suited to your child's needs.

We did try the Children's Hospital feeding program in DC, but I just wasn't impressed with them either. We didn't get very far with that before I stopped going there. After the failed EI experience, I just didn't want to waste any more time with the wrong approach.

[KimPM]

I just wanted to resurrect this old thread and say that we finally got in for an evaluation at KK. They really seem attuned to subtleties on the spectrum. DS finally got an official diagnosis. I was pleased with the SLP evaluator and the dev ped evaluator. Unfortunately it's kind of far for us to go for weekly social therapies. I'll have to find something closer to home.

I also heard good news about the KK feeding program. It seems they have two feeding programs. The one at the downtown center is behavioral...however, the one at the center for autism and related disorders (CARD) is play-based . If we lived closer, we'd sign up for that.

[beachbaby]

Just bumping this up...

I made the initial call to KKI for DD (nearly 5 years old--with SPD, articulation disorder, low muscle tone, anxiety). I did the initial intake over the phone and am waiting for an appointment. We'll be seen in CARD for a team eval including an Autism eval. We'll be travelling 2.5 hours from the Eastern Shore of MD.

Just wanted to join the thread and say thanks for the info already posted. I'm nervous, yet hopeful we'll get some answers.