Neurodevelopmental ped appoinenf coming

taryn30

Ladies, my son is 3.5 years old. He has low muscle tone with speech and fine and gross motor delays. He had torticollis as a baby. He does get speech, pt, and ot at preschool. We had seen a physiatrist who recommended a geneticist so we have that appointment made as well.
How does the first appointment work with the neurodevelopmental pediatrician? What happens?
I am trying to think of things that would be important to tell the neurodevelopmental doctor of his behavior. There are just so many things that I've observed and who knows if they are really important?
One thing that seems concerning is he will roll his hot wheels car off a table (like as many as he can). So repetitious. Does he like the noise? He, at times, doesn't want to change his clothes. Sometimes his diapers. Eating has always been an issue. Hates brushing his teeth. Hates blankets. He tantrums.
It just seems like everything depends on his mood. Any advice before the appointment next week?
Thanks so much!

kcisthebombdotcom

It's going to be a very long appointment so make sure you bring a drink or snacks if it falls in that timeframe. We sat in a room with a doctor and an intern. The intern played dolls with her and the doctor watched how she interacted while asking me about a gazillion questions. After the question part was over she did some testing with her. It was very play based--doing puzzles, blocks, etc. it was over two hours. I would keep a log of all the concerning behaviors you see so you don't forget to tell the doctor anything. Videos don't hurt either if you can. Sometimes I freeze up on the spot--I remember being so nervous I couldn't calculate how old I was when I delivered. Lol. Good luck!

typeset

I filled out a thirty-page packet ahead of our visit. The blog I kept when he was little was useful for remembering when he sat up, crawled, etc. A tip I got from another parent was to check the CDC milestones page for your kiddo's age. This is what they're supposed to be able to do by the third birthday: https://www.cdc.gov/ncbddd/actearly/milestones/milestones-3yr.html. The pedi chuckled when I pulled it out at our recent follow up, but then she realized it was helpful. Might help you start framing your concerns. You can also walk through a typical day in your head and write down what he's struggling with. 

kcisthebombdotcom

I filled out a thirty-page packet ahead of our visit. The blog I kept when he was little was useful for remembering when he sat up, crawled, etc. A tip I got from another parent was to check the CDC milestones page for your kiddo's age. This is what they're supposed to be able to do by the third birthday: https://www.cdc.gov/ncbddd/actearly/milestones/milestones-3yr.html. The pedi chuckled when I pulled it out at our recent follow up, but then she realized it was helpful. Might help you start framing your concerns. You can also walk through a typical day in your head and write down what he's struggling with. 

I'm glad I wasn't the only one who had to do the 900 page packet. Did it make you stabby that they asked the same freaking questions in the packet that they do during the parent interview? It's like why make me spend twelve hours answering questions you're just going to ask me in person? Ahhhhhhh

typeset

KC_13 said:

I'm glad I wasn't the only one who had to do the 900 page packet. Did it make you stabby that they asked the same freaking questions in the packet that they do during the parent interview? It's like why make me spend twelve hours answering questions you're just going to ask me in person? Ahhhhhhh

Worse: we went to different hospitals for the initial Dx and the second opinion. Reams of paper. My favorite questions involved my weight gain during pregnancy and whether we BF or FF.  

kcisthebombdotcom

-auntie- said:

KC_13 said:

I'm glad I wasn't the only one who had to do the 900 page packet. Did it make you stabby that they asked the same freaking questions in the packet that they do during the parent interview? It's like why make me spend twelve hours answering questions you're just going to ask me in person? Ahhhhhhh

Sometimes repeating a question is a function of doing an actual assessment like the Vineland, CARS or GADS that is in the format of a parental/care giver interview. Within the GADS for instance, the same information is sought using different versions of the same question. Part of the repetition is to determine the quality and consistency of the reporter. A parent in denial or unfamiliar with typical skill levels sometimes isn't as honest as is needed.

I've done all three of those assessments and those kinds of questions weren't in the paperwork I had to complete for the neurodevelopmental pedi appointment.

kcisthebombdotcom

typeset said:

KC_13 said:

I'm glad I wasn't the only one who had to do the 900 page packet. Did it make you stabby that they asked the same freaking questions in the packet that they do during the parent interview? It's like why make me spend twelve hours answering questions you're just going to ask me in person? Ahhhhhhh

Worse: we went to different hospitals for the initial Dx and the second opinion. Reams of paper. My favorite questions involved my weight gain during pregnancy and whether we BF or FF.  

We've done the rounds at the local children's hospital--we have a neurodevelopmental pedi, geneticist and neurologist there. I remember genetics sending me the 5,000 forms for family history that I had to do for our initial neurodevelopmental Eval. Naturally the geneticist has our whole file and then proceeded to ask me all the same questions I already answered in two different forms. Ahhhhhh.

kcisthebombdotcom

-auntie- said:

KC_13 said:

-auntie- said:

Sometimes repeating a question is a function of doing an actual assessment like the Vineland, CARS or GADS that is in the format of a parental/care giver interview. Within the GADS for instance, the same information is sought using different versions of the same question. Part of the repetition is to determine the quality and consistency of the reporter. A parent in denial or unfamiliar with typical skill levels sometimes isn't as honest as is needed.

I've done all three of those assessments and those kinds of questions weren't in the paperwork I had to complete for the neurodevelopmental pedi appointment.

They were a part of the intake at CHOP's Regional Autism Center, but that was years ago, so perhaps this is no longer done.

I'm surprised you have done GADS, that's not normed for a child your DD's age. I did GADS within the year as part of a beta test for a revised edition, so it's fresh in my mind. 

Maybe I haven't done GADS. I've done no less than six parent evals recently that I'm losing track of all these acronyms! but yeah, when dd was referred the only person who had autism on their radar was me. DDs pedi has always felt she's not on spectrum. At her 18 month well check she sat with the pedi, looked at her while she read a book and pointed to a picture in a book and used a word to label what she saw which she thought disqualified her from an autism dx. I pushed for a developmental pedi referral and her pedi said trusts parents since they see their children everyday but she thought I was way off base. On the intake they just got that dd had language delays so I wouldn't think they'd send the usual "autism" paperwork--it was mostly qs about family history, when she hit milestones, and yes/no questions of what she did/didn't do. I actually even mostly got laughed out of her first neurodevelopmental pedi appointment as being the crazy parent who assumed language delays equal autism when my daughter played dolls for an hour and a half with the intern and had a tea party with all the adults in the room. Only when dd started reading did my autism suspicions gain any sort of credibility.

kcisthebombdotcom

-auntie- said:

@KC_13

You filled out 6 forms? That's very different than what many parents experience, especially years ago. I wonder if this is something that is changing as ASD and developmental clinics have ever longer waiting lists. 

Many of the ASD specific and more general behavioral, social and adaptive skill scales were written to be done in an interview style. So while I did complete pages of family hx, pregnancy hx and questions about milestones/concerns- I did not fill out the actual scales when working with either Coplan or Sohn. In fact, it's only in retrospect that I knew that the questions were part of a trademarked assessment product. When DS was evaluated for learning differences, which was overseen by a developmental neurologist, we did not physically fill out any scales. 

It was only when DS was transitioning to secondary that his rather harassed school psychologist sent home a packet of forms to fill out after asking me to not reproduce them or share them with anyone else. By this point, DS had a firm dx in place for 6 years from a dev pedi, a psych and an educational dx from her when he transitioned to public school. She explained that certain ones, I think the Vineland and BASC, were meant to be done in the office with her in the form of a parental interview. I know DS's teachers submitted hers DIY as I did, but DS's self report of the BASC and one other one were done interview style. At the meeting to go over her findings prior to the IEP, she showed me the forms we completed because they were unusually synced- the teacher and I submitted nearly identical answers which she felt led credence to both our list of concerns.

I didn't do those forms in a parent interview--I just brought them to the school psych, she graded them and sent them off to the neurodevelopmental pedi along with notes on her observation of DDs behavior. I haven't done those forms as a function of getting a meeting with a neurodevelopmental pedi--they've been done as a transition from EI/as a means to dx autism.