1 year old with gross motor delay and poor appetite. Constantly told everything is “fine”

@dan_ Thank you for responding I’ll look into your suggestions. My daughter luckily hit all her milestones but was late just on these ones listed above. Was it similar in your daughter’s situation? Does she also struggle with appetite?
 
@boanerges1989 Appetite isn’t an issue for us personally but feeding issues can be a sign of something genetic underlying. I don’t expect that you will have the exact same type of genetic quirk as my daughter as it is quite rare. Other genetic anomalies can present with a whole range of issues. Developmental delays involving gross motor skills seem to be the prompt for several families to get tested however, hence why I suggested it. My daughter has now hit almost all the milestones she did not meet at 6 months old now but knowing what we were dealing with has helped us get referred on to specialists who can support her better.

Another thing to maybe read into and see if it fits is perhaps ARFID?
 
@dan_ I suspect my son (eating issues, extreme constipation, not walking at 17 month) might have some underlying issue- hypotonia was on my radar. We just had bloodwork done- I’m curious what part of your daughters bloodwork lead to a diagnosis, if you don’t mind sharing?
 
@boanerges1989 My two both had ties (treated) and my youngest was also refusing food. Turns out the tongue tie treatment (I went with electrodes methode) gave him pre verbal trauma. We are now getting treatment from a pre speech therapist and she is amazing! He went from purees and rice krispies size things to now gobbling up slices of watermelon (currently 17 months, in therapy for 7-8 months)
 
@boanerges1989 It wasn't me who realised! Our therapist asked if our son had been in NICU with a feeding tube after birth. I said "no? Why?" And she said she was treating him like patients that have had a feeding tube. She then asked if some other events occurred, as she saw a lively little dude, exploring, happy, not shy. But as soon as something would get towards his lips he would all tense up. Move his head, kept his mouth closed etc. I then mentioned the tongue toe and treatment and she said she was under the impression he has pre verbal trauma from it.
 
@boanerges1989 where is this?

Gross motor delay is indeed a dx. That you then say it isn't is confusing, how'd the doc determine this?

A delay isn't necessarily indicative of something permanent, the issue is if it is so or if it is just the typical variation in development. Sounds like you need both clarification and a second opinion.
 
@brightflame It isn’t a true diagnosis as compared to something like cerebral palsy. There are some ICD-10 codes for it though, you’re right. But also, based on the numbers given, this child wouldn’t qualify. But I agree with the parent, it sounds like there’s more underlying stuff.
 
@sunshine Thanks for commenting. Would you mind clarifying what she wouldn’t qualify for? If that’s the case (i’m guessing because these issues aren’t considered severe), do you know how I can argue to have this looked into further?
 
@boanerges1989 A month and a half late isn’t really late, broadly speaking. Mind you, I’m not invalidating that something might be wrong. I’m just saying that small a delay doesn’t meet the criteria for a motor delay. For example, you’re not considered a “late walker” until after 18 months. What I would maybe focus on is the fact that you are seeing delays in so many areas. That is more indicative of a potential concern than a single delay in any one area.
 
@sunshine Ok thank you. Yes she is not delayed for walking at this point in time. She was a bit late to stand and cruise along furniture is what I was mentioning. But yes, looking at the many issues overall makes sense.
 
@boanerges1989 Yeah, not disagreeing with that at all. And I wish you luck. Maybe get a big list of ALL the things you see, and get a second opinion based on that, rather than one thing. Maybe listing all the issues together will spur more reaction.
 
@brightflame We’re in Quebec, Canada. The system is beyond bad. The pediatrician just told me she “has a gross motor delay” for the reasons listed above. I questioned and she’s basically taking the wait and see approach by pushing physio. I want another opinion badly. Trouble is, most kids here only get to see a GP, not even a pediatrician right now.
 
@boanerges1989 Can you pay for a second opinion?

it's rightly terrifying when parents hear unexpected things/confirmation from a doc or other authority, even if they're accurate, without any context. Saying "Gross delay" is scary, and then to add 'wait and see' is both poor bedside manner and inadequate to address their diagnosis. Preferable to describe in more detail what the delays are w/o buzzwords and scary adjectives, and then offer up both a plan and a prognosis.

at 1 year, its too early to determine if this is just "Normal variation' in infant development or something that might be a longer lasting impairment based on a quick look see by the GP/pedi, so a second opinion, even if you have to pay, is worthwhile, if only to assuage your anxiety, or, provide a clearer road map for early intervention.
 
@boanerges1989 My niece has mild hemihypertrophy

I’m not sure about the appetite, however it could account for the motor delay and favouring one side.

Apparently it can be hard to diagnose, she was only diagnosed by chance by a midwife noticing one of her thighs was slightly chubbier than the other a few weeks after birth.

Apparently it is hereditary and you mentioning your leg difference is what made me think of it. Some people in our family also had that and it’s possible we had mild versions of it as kids and it luckily sorted itself out.

She is fine now but has needed specific physio and some other help. Possibly will need surgery when she is older depending on how her bones develop after growth spurts.

This can also put the person at higher risk of other things so it is worth mentioning to a doctor.
 
@boanerges1989 I suggest trying to get referred to (or if you don't need a referral, just go straight to it) a pediatric occupational/speech therapy clinic. With the general health history you've explained, there would be several things they would likely want to watch for.

We recently had my son evaluated (and approved for) both speech and occupational therapy. He had tongue ties that we thought were addressed when he was born, that are still affecting him now at 4 years old, and have apparently been contributing to a lot of his eating behaviors, and other stuff. The occupational side was approved due to his sensory seeking/avoiding behaviors, and troubles with his grasp.

I would be really hopeful that one of these types of clinics could greatly help you.
 
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