Help us get the most out of our first developmental ped. appointment
June 19, 2015 8:03 AM   Subscribe

Micropanda is 4 1/2, has great verbal skills, some mild delays in motor skills, and is a total space cadet in the absence of direct 1-on-1 adult interaction. He's in occupational therapy for sensory processing disorder. He is underweight and hates eating. We're coming to the end of our six month wait to see the developmental pediatrician, and the appointment's next week. Please tell me what to expect, help me think through prioritizing concerns, and offer any suggestions you have about how to get the most out of this appointment.

The office had us fill out a bunch of online questionnaires in advance of the appointment, to help identify the major issues and things we want to address. I've been thinking about it too, but we've waited six months for this appointment, y'know? I feel a lot of internal pressure to do it right. He's a wonderful, sweet child, and so exhausting to parent.

I guess my two biggest areas of concern now are the eating and the attention. We've gotten his meltdowns mostly under control through a combination of occupational therapy and schedule changes to get him home earlier in the afternoon so he doesn't get as overwhelmed. I took him to a multidisciplinary feeding clinic because his weight-for-height is less than 1 percentile. The speech pathologist didn't see anything wrong with his chewing, the nutritionist felt he was eating an acceptable variety of foods, the gastroenterologist didn't have much to add beyond giving him pediasure, and told us to see the developmental pediatrician and possibly a child psychologist. The kid's just not motivated to eat. Sometimes it seems like he can't focus on his food for long enough to eat. (When he does eat it's with constant reminders to stop doing X and take a bite.)

From an attention perspective, his teachers consistently said this year that he lags behind his same-aged peers in completing work. He starts, gets distracted, and wanders off to watch someone else. He's bright, and with 1-on-1 adult involvement, he functions quite well. But as soon as there isn't an adult continually redirecting him back to the task at hand, he wanders off. One thing that's been increasingly frustrating for me lately is that he cannot dress himself with any kind of consistency, despite being offered highly coveted rewards (like extra time building together with Mom's legos). He starts motivated and excited, but makes one half-hearted effort and then decides he'd rather not have the reward. With adult supervision, he can eventually dress himself, although it is hair-rendingly frustrating to keep him on task. The dressing skills are especially frustrating, because we've been working on breaking it down into little manageable steps every day since he turned 3 and it just won't stick. (In contrast, he decided a few months ago that it was time to start reading, and has progressed from the first BOB book to J/K level books with minimal input from me beyond daily reading to him and sitting down to listen every time he asks to read me a book.)

He's not super active unless he's doing something difficult and then his whole body goes into motion, twitching, fidgeting, flopping. He usually dislikes challenges. He tends towards the anxious. Socially he does fine. He sucks at transitions, more so than his peers but not appallingly so. He is very inflexible about things like who is going to put him to bed. His play area is always messy, and it seems hard for him to put things away.

Besides dressing, the main milestones he's not hitting are:
- drawing a person with reasonable number of components (most of his drawings are scribbles. That said, he can write sentences. But only if an adult is sitting next to him. Not necessarily telling him what to write, just sharing focus.)
- He just learned to hop on one foot, so maybe he squeaks by there. Thanks, OT! But it didn't come easy.
- Catching. He can catch a balloon the size of his torso, but nothing smaller or faster-traveling. Believe me, we've been practicing.
- Alternating feet when walking down stairs
- pedaling
- climbing. Has always lagged behind peers. Is finally attempting it a little bit, but I don't think he's close to catching up.
- brushing teeth (he is completely incompetent at doing this on his own. He just kind of flails the toothbrush in his mouth for a second.)

So, there's a lot here, and I guess I feel like it's important to hone in on the biggest priorities.
The input I'd welcome most is:
- experiences with seeing developmental ped, because I don't know what to expect
- things that strike you as being high (or low) priorities
- if you have an older kid, things you wish you'd started investigating sooner.
- Or things that worried you a lot when your kid was this age, but that they then outgrew without further intervention
- Should I bring up my concerns about ADHD, or wait for the doctor to bring it up? (then again it's such an obvious question maybe it doesn't matter)

On a daily basis, I feel somewhat like the parent in this recent ask about ADHD. And the comment about the little sister being "the dandelion to his orchid" nearly made me cry. Our little sister is a bit young for that yet, but I can already see aspects of it.
posted by telepanda to Health & Fitness (9 answers total) 4 users marked this as a favorite
I really want to be encouraging and helpful, but I don't have relevant subject knowledge. (Except that my kid was under 1% weight as an infant, which was upsetting.)

The stuff about coordinating both sides of the body seems serious to me. The stuff about focusing on work doesn't. (Yes, I went to preschool, but I don't think I did much work as a four year old.) I also think having a messy room seems normal.

Disliking eating makes me consider food allergies. (But sensory issues related to texture and flavor also make sense.)
posted by puddledork at 8:38 AM on June 19, 2015

Be balanced about letting the experts be the experts but also your own expertise as the person who knows your kid best (plus parent's intuition). Go in with an open mind and try to find the specialists that will walk this road with you.
posted by k8t at 8:40 AM on June 19, 2015

Best answer: I would group everything under 3 priorities - attention, weight/eating, and motor delays.

For attention, I wouldn't go in suggesting ADHD (doctors often don't like it when parents come in telling them what they need to diagnose). Instead focus on how his lack of attention skills is affecting his life. Be specific.

For the eating, again don't try to have some diagnosis in mind. Describe the specific nature of the problem, what has helped and what hasn't.

For the motor delays, let the doctor decide if that's an area to start addressing now or if he wants to see how he develops over time first. Your job is to provide specific information - how does it affect his daily functioning?

Even though I said be specific, that doesn't mean be long-winded. You don't need to tell them everything, but give really specific details. So not "he doesn't seem to pay attention like his peers" but "he can't finish any task at school without constant and continuous adult intervention".

My background: Caretaker and teacher aide to those with unique needs and significant disabilities
posted by Aranquis at 8:57 AM on June 19, 2015 [3 favorites]

I love that they had you fill out that information ahead of time. It speaks well of them that they are thorough and want to gather up a good, organized bit of information ahead of time to avoid putting all of that on you. So a developmental ped is a physician whose job it is to help you identify and monitor where your small person is deviating from what is typically expected in development. They can help manage some issues in house (e.g., like medication for ADHD, for example if that is something that ever seems like a road that it makes sense to go down), but also help identify and prioritize what things should be addressed (if any) and in what order. The other thing that can be really, really helpful is that they act as a "medical home." Kind of the hub that manages and coordinates your other care and services. So you need OT, they'll help keep an eye on how that's going. Do they think other services are warranted? They'll give you some direction and make sure it's happening.

At this point, I think walking in and explaining what your concerns are is all you really need to do. "He's a wonderful, sweet child, and so exhausting to parent." is a fantastic place to start. You can prepare a couple of items you'd like to talk about, but they should be pretty good at asking questions too. This should feel like a conversation and a collaboration to figure out the right intervention plan for Micropanda. Best of luck to you all!
posted by goggie at 8:59 AM on June 19, 2015 [1 favorite]

Best answer: Micropanda sounds very, very much like my eldest at that age. He is now 18 and I promise you things are going to get better! We saw a developmental ped a bit later than you are, right around my son's sixth birthday. As you are probably well aware, early intervention means everything.

If I were you, I would take everything you wrote here and have it ready to refer to if necessary. The ped will likely address all of your concerns before you even have a chance to bring them up yourself. And if you feel like something important hasn't been discussed, you've got your list right there with you. I would even make it into a checklist and physically check things off as they're discussed.

What I wish I knew then: that my child was going to be okay, in the long run. All the therapies, doctor visits, school meetings, was all worth it. It was so, so hard, but it all paid off. And we have a little sister, too. Sometimes I felt like she was getting the short end of our attention, but with a little effort, we made sure she had her ways to shine.

Please feel free to memail me. As a parent on the other side, I'd be happy to be a sounding board for you!
posted by cooker girl at 9:03 AM on June 19, 2015 [2 favorites]

Sounds like you're with an excellent group! Be aware that they may have a protocol to perform certain medical/genetic studies (however unlikely they think it may be that the child actually has such a condition, they may still want to formally rule it out) and, if so, insurance may be a factor in having these done.
posted by beaning at 10:20 AM on June 19, 2015

Best answer: I am so excited to answer this askme that this may not be particularly well organized. Feel free to memail me with more questions.

Your 4.5 year old sounds very, very much like my 4.5 year old. My 4.5 year old was referred to Early Intervention at 10 months for motor development issues -- specifically strength, weight, both-sides coordination -- got therapy through those services until he was 3, and was then placed in our school's developmental preschool for children with special needs. The help he's received has been tremendous and I am so, so glad for it. OK on to your specific questions.

experiences with seeing developmental ped -- we saw a neurodevelopmental ARNP at Seattle Children's Hospital. They had a number of very specific questions and evaluations that hadn't occurred to me. Make sure your child is as well fed and rested as possible; we had to table my kid's evaluation and pick it up later because he was too hungry to focus. If feeding him adequately before the visit is difficult for the reasons you cited, mention that specifically to the pro. They did an interview with me, a physical evaluation of my kid, asked him a series of questions, did some sensory evaluation, and then took him down the hall to do a Bayley test. In my son's case, they took blood to evaluate for thyroid, anemia, and muscular dystrophy; be prepared for that. They did not recommend an MRI or other neuro-anatomical investigation.

things that strike you as being high (or low) priorities the things I would stress to them is that his troubles with focusing and coordinating his motor skills are affecting his activities of daily living, his adaptive skills. As he is right now, he can't feed himself, dress himself, or appropriately manage his hygiene. I know that sounds dire, and the temptation is to say "but he's only four!" but a typically developing four year old *can* do all those things. (And so can my son, now, with a little support, because they were all IEP goals for him this year. Because early intervention is magic.)

if you have an older kid, things you wish you'd started investigating sooner We were lucky, we got services very early. The both-sides coordination was an area of grave concern; my son couldn't cross midline at 10 months, although we managed to fix that with very intense effort. He still has some midline perceptual issues, too -- he fell off the couch and bit his tongue and came running to me and said "Mama, mama, I broke one of my tongues!!" Uh, just how many do you think you have, buddy? Turns out he experiences his tongue as two separate structures that are joined together, not as one thing.

Also the low frustration tolerance -- there was some discussion of whether this was just a personality thing for my kid, or whether it was part and parcel of his other issues. When we started addressing it therapeutically, it improved so rapidly that I think that question answered itself.

Should I bring up my concerns about ADHD, or wait for the doctor to bring it up? (then again it's such an obvious question maybe it doesn't matter) Bring it up, sure, otherwise it'll be the elephant in the room. The way I did it was to say "At what age is it reasonable to consider evaluation for ADHD or other things like it? Is that something I should be keeping an eye towards, or do you think that's not likely on the table here?" That way I could bring it up in a way that wasn't like "I have diagnosed my child and I want you, the medical professionals, to back me up!"

Please feel free to memail me if you want to know more about our experiences. Also, people who knew my husband as a child have commented about how much like him our son is, physically and behaviorally, "although {husband} was much, MUCH worse." My husband is now a successful and self-directed adult who can brush his teeth and get himself through tasks and ride a bicycle and everything, although developing those skills would doubtless have been 1000x easier if he'd had access to these kinds of services as a child. So don't worry yourself TOO badly.
posted by KathrynT at 11:07 AM on June 19, 2015 [4 favorites]

Just a heads up from my experience with our developmental ped -- the first appointment was lots of formal assessment, setting up referrals etc. It wasn't until the follow-up appointments several months later, and after seeing some of the specialists she'd referred us to, that she really got a good sense of my son's issues and how best to address them. I know that when you've been struggling and waiting half a year for the appointment, there's so much pressure to get it all presented and right, but yeah. Be sure to insist on a follow up in a reasonable time frame and also get the Dr's email so you can be in touch!
posted by bluebelle at 7:50 PM on June 19, 2015

In addition to the above, ask the peds doc for a referral to child psychiatry. Your child may have an anxiety disorder, which could explain much of the above. Anxiety can look like all sorts of things, including ADHD. Ask for a referral to a psych who prizes a CBT approach and not so much medication (which is still an option, of course).
posted by Chaussette and the Pussy Cats at 8:53 PM on June 19, 2015 [1 favorite]

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