Special Needs

Help with Dev. Pedi. Appt. Please.

I somehow was luckily enough to get an appointment at Riley Children's Hospital on Tuesday to meet with a developmental pediatrician.  This is so sudden, and I'm not sure what to expect or what to ask.  The intake paperwork is very minimal.  It asks about rolling, crawling, sitting, and other large milestones.  It isn't very in-depth like I was expecting. Also I was told to expect the appointment to last only one hour.

I was hoping that someone could help me out with what I should expect, questions to ask, maybe some resources I could look at (like a checklist or anything)?

My background:  My son is 9.5 months old. I have been seeking help since he was 6 months old.  I first noticed that he wouldn't ever reach for anything.  He is behind physically.  He still doesn't reach.  He cannot sit up, roll over, or even lift his upper body up a little when on his tummy.  We are currently getting OT for him.  We have also found out he is delayed in his speech and we are starting therapy for that next week too through early intervention services in my state.  We have feeding issues.  Each meal is a battle unless he is really drowsy.  He just moved up to the 3% for weight from 0%.  He screams bloody murder during baths.  This is my first child and I have never been around children before, so it is hard for me to know what to tell the doctor because I don't know what is normal and abnormal (besides the obvious). 

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Re: Help with Dev. Pedi. Appt. Please.

  • We saw a dev pedi when my daughter was 7 months old as part of her CI candidacy testing. I do remember the intake questionnaire being very short. During the appointment the doctor asked a few questions but mostly tested her with different tasks covering gross motor, fine motor, problem solving, etc. I remeber it including tasks like pouring things out of cups, stacking blocks, pulling a string to bring a toy closer, holding more than one object in one hand. The doctor was working from a long form and had a kit with all of the test materials in it. She was able to tell us the age range she scored in for the different areas. She also did an examination to check her muscle tone, joints, etc and checked for syndromic features. If she felt there was an issue she would refer for more testing, like an MRI.

    Good luck! I was anxious about this appointment because I already knew my daughter had some delays. It was very reassuring though and it helped with her getting the therapies she needed.

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  • The test she used was more in-depth than this, but it includes some of the tasks: https://www.terralindapediatrics.com/easqq.pdf. That is the questionnaire our regular pediatrician uses so it might be helpful to you.
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  • We saw our developmental pedi first a month ago when Alex was 3y9m. It was a very different experience but maybe because he was older? Their intake paperwork was quite lengthy and thorough and the first visit was 5 hrs long. I know there's a lot more to assess with an older child though so that might have something to do with it. I would do some reading up on milestone checklists for his age and infant development, and also ask any therapists you've worked for for how they would describe his strengths, delays and concerns since they have more basis for comparison than you do. Hope the appt goes well! (And I'm from Indy btw. :))
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  • He's very young still so the appointment will typically not be as extensive as an older child. They will likely interview you about your pregnancy/birth (looking for potential issues there that might indicate a potential CP diagnosis), his current skills and when he learned to do things, and then look at him for things like muscle tone, body imbalances, reflexes, facial characteristics (could indicate potential genetic disorders), etc. Based on their exam they may recommend just continuing with EI for now or doing an MRI (looking for brain injury), blood work (muscular dystrophy/genetic testing), etc. They should help you look for why he's behind, help evaluate his current therapies for appropriateness and/or recommend adjustments and should refer you to additional specialists as needed.
  • I see I am late to the party on this thread.  How did the appointment go?
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  • I posted this on my BMB so this is a quick copy paste from my phone.

    Yesterday we drove 2.5 hours down to Riley's Children's Hospital to have Grant seen by a developmental pediatrician.  We were called back right when his appointment was scheduled and the doctor spent over an hour with us.  He asked me a slew of questions about my pregnancy, his birth, and medical conditions.  He wanted to know when I felt like something was wrong and what I saw as red flags.  I had a list for him with things that were currently happening that concern me and our OT.  He asked me family history questions including in depth questions about my brother, his development, and his mental capabilities my brother is pretty normal, but I wouldn't say he is super smart or anything. 

    The doctor had his "bag of tricks" and pull each thing out and observed Grant.  He looked at his eye tracking, hearing, physical capabilities, etc. He asked me how old I thought Grants abilities are at, this is question I had already thought about, so I immediately answered around 4 months.  The doctor basically said that was about right, but a little optimistic.

    He said that Grant is Globally Developmentally Delayed GDD and has severe Hyptonia low muscle tone and is at risk for Dysphagia swallowing problems.  He said that 3 things could be the cause 1. Genetics 2. Neurological 3. Metabolism/Mitochondrial.  He ordered a genetic screening, an MRI, and a video feeding study.So, here's where things get crazy.  They took 8 vials of his blood while we were there.  He was surprisingly a champ and only cried for 30 seconds when they pricked him and sat there wonderfully while each vial filled with blood. 

      We have the MRI scheduled Wednesday and his video feeding study scheduled for Thursday.  So, I will have to stay in Indy overnight with my dad. I feel lucky that I am getting appts so quickly because I know it usually isnt easy. I'm trying not to over think it too much.... like does the doc suspect something serious and that's why everything is happening quickly. He said to stay off Google.

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  • He said that 3 things could be the cause 1. Genetics 2. Neurological 3. Metabolism/Mitochondrial.  He said all 3 are equally as likely and wasn't more specific than that.

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