Developmentally delayed 18 month old- need help understanding it

[Anonymous]

I have an 18 month old that is considered developmentally delayed in gross motor, fine motor and speech. He sees a developmental pediatrician, a regular pediatrician and is seeing various therapist through the county. This is all new to me and I find that everyone is really trying to not worry me or can’t answer my questions. So I will ask here, hoping someone has experience or advice. Are some children just developmentally delayed with no cause? Do these children just catch up to their peers? Will these delays be apparent in early elementary school? I’m sorry if I am not making sense or asking silly questions. I am truly trying to understand everything and get him all the help he needs.

[Anonymous]

If I could go back I would start seeing private therapists. They have been some of the most helpful and often had the best advice. I don't know what the future holds for your child but I'm 9 years in and still searching for answers.

[Anonymous]

Hi. I understand how you are feeling, but I think we need more info before we can give you a better answer. For example, how severe are the delays, and do you have any diagnosis?

Without knowing the details, I would try to get your child into an early intervention program as soon as possible (the ones offered for free in each state), and try to get a diagnosis from a reputable hospital.

We went through a similar experience with speech delay. We started speech therapy before he turned 20 months old, and around 22 months old we realized his delay was related to social delays associated with autism. We received a formal diagnosis when DC turned 2.6 from Children's National Hospital in DC. That diagnosis set a lot of wheels in motion (therapies, services, etc.) which have been invaluable to our DC.

Of course I'm not suggesting your child may be on the spectrum. But trust your gut, and keep asking until you get an answer that satisfies you. Just make sure you are asking the right professional/expert.

[Anonymous]

There's always a "cause" but you may never figure out what it is.

Do the therapies, as much as you can afford and make work. For our child, with the same delays as yours, it was lots of speech (private and county) and physical therapy (county only), occupational therapy (private only).

Our child was still 'delayed' in speech and gross and fine motor in early elementary, but also had some areas of real academic strength.

Agree to supplement county therapy if you possibly can with private speech and PT, if needed.

[Anonymous]

Some kids do catch up and graduate from therapy/interventions. Some kids don't but eventually their parents find the root cause of the delays (my case). Some kids don't catch up and their parents never learn what the cause is (what seems to me the worst case scenario). My kid had the same profile as yours. 18 months is when, generally, you start to get referred to other kinds of providers when milestones aren't met. I had tons of questions then too and it was really hard getting used to the I&T people in my house (hated that), finding private therapists, figuring out insurance issues, figuring out next steps, which other docs to see and the like. In our case I had a hard time talking to friends and family because I had nothing but questions and so did they. And I was tired of thinking about that stuff literally all the time. It does get easier and even routine but now as you are figuring out what's what it's a really hard time. If you haven't already take a look at the ongoing pediatric studies at NIH and see if your kid fits any of them. We are lucky to be close--all the care is free and you have access to the smartest people in the medical community.

[Anonymous]

OP here. Thank you! To me, he seems to be on the level of a 12 month old. He can stand alone for a few seconds but can’t walk or take steps. He just learned how to go down steps. He only says “night night,” and will lay down when he says it. He will say dada and mama, repeating it, but does not understand that it is us. He feeds himself but won’t point at things, like a dog, or whatnot, to get my attention. Therapist and doctors say it is too early to tell anything and to stick with the county therapist and revisit the possibility of private therapy in 6 months. They said they do not see signs of autism. What more can I do or should I do?

[Anonymous]

I would strongly suggest you do private therapy in addition to county therapy. Early Intervention is key and private therapy is a great way to start!

[Anonymous]

My child was delayed at that age. There was a medical diagnosis as the cause, but at by first grade, DC was caught up to peers and is doing fine. (Continuing medical diagnosis notwithstanding.)

[Anonymous]

I don't agree with what they told you. Supplement with private therapy ASAP! It's amazing how much knowledge a good therapist has.

[Anonymous]

Anonymous wrote:I would strongly suggest you do private therapy in addition to county therapy. Early Intervention is key and private therapy is a great way to start!

Having the same trifecta that the op has, county services are fine as long as a kid is making progress. Not all EI therapists are created equal, some are more interested in filling out forms and not much on effort. But most are good.

So op, trust your gut. If you feel like the therapists working with your kid are effective, please don't stress about private therapists at this point. You can always request a different therapist if you think you've hit a dud. There's only so many hours in a day and more or private doesn't always mean better.

In a way, it's not a bad thing that it's a developmental delay of unknown origin--that may mean things will resolve.

[Anonymous]

This is 13:15.

One thing that helped get my globally delayed kid walking was a Careplay puppy. You can buy them on Amazon for about $60. They are ride on toys that have handles on the back so that they can also function like a walker for kids who can get to standing. We got so much mileage out that thing and my kid loved it. They also come in squirrels and you can pick the color.

Besides NIH, if you are looking for causes, you might make appointments with Ken Rosenbaum (Genetics, CNMC) or Alec Hoon (motor specialist, KKI).

Also, one other piece of advice. You are probably getting a lot of advice and predictions now from some very smart people. Take all of them with a grain of salt.Some of these people will be wrong. We saw a lot of experts while we were looking for the cause of my kid's delays. Sometimes people, because they do this every day, were very cavalier with their predictions. I spent of lot of time weeping. In the end, much of what was predicted did not materialize and although my kid does still have issues he is a great kid who is highly functional. There is just so much that can't be known at this age and you just have to wait it out.

[Anonymous]

I have a 23 months old, and have speech & cognitive delay. He sees developmental pediatrician, and is on free early intervention services mainly for his speech. The developmental pediatrician have not found the causes of delay yet, but he is under watch for followups. 2 months has pasted, I think he understands a bit more what I say, but still no progress on speech(no new word), just babble a bit more. We are bilingual, but they all say it is not the reason for speech delay. Therapists are still working on his imitation sound skills, but no progress here at all. He is good at imitate actions though. Any tips?

OP, my boy's gross motor & fine motor skill is really good. A piece of advice here! You should get some toys to motivate him to work on his legs (bottom core) & finger skills, e.g. activity cubes is a good one to work on him standing longer holding onto something while working on his fingers skills.

A question here. My boy fully understands when I ask him if he wants me to clean his body parts e.g. hand/nose/feet/ear/face/mouth, he will respond to me "mm" as yes, and waving hands as "no". But how come he does not understand when I ask him to point at those body parts? I am confused on this one.

[Anonymous]

OP, this is a tough road... and unfortunately, it will be a lot of wait and see. I second the suggestion to see Dr. Rosenbaum (genetics) at Childrens. He has been by far our most thorough doctor. Our 5 year old has a brain abnormality that no one could really tell us much about. I had so many questions... will he walk, talk, be able to live independently? While we still have so many questions, we’ve learned that he will grow and develop at his own pace and meeting milestones becomes a much bigger celebration than for our other children because he’s had to work so much harder to meet them. Private therapies and infant toddler therapies are great, but so is just spending time playing with your kid and taking them to playgrounds and on play dates. Hang in there, mama!

[Anonymous]

Anonymous wrote:This is 13:15.

One thing that helped get my globally delayed kid walking was a Careplay puppy. You can buy them on Amazon for about $60. They are ride on toys that have handles on the back so that they can also function like a walker for kids who can get to standing. We got so much mileage out that thing and my kid loved it. They also come in squirrels and you can pick the color.

Besides NIH, if you are looking for causes, you might make appointments with Ken Rosenbaum (Genetics, CNMC) or Alec Hoon (motor specialist, KKI).

Also, one other piece of advice. You are probably getting a lot of advice and predictions now from some very smart people. Take all of them with a grain of salt.Some of these people will be wrong. We saw a lot of experts while we were looking for the cause of my kid's delays. Sometimes people, because they do this every day, were very cavalier with their predictions. I spent of lot of time weeping. In the end, much of what was predicted did not materialize and although my kid does still have issues he is a great kid who is highly functional. There is just so much that can't be known at this age and you just have to wait it out.

Whoa nelly. You don't need to trot off to hoon unless CP is suspected. "Run of the mill" Developmental pediatricians can identify motor coordination issues. Rosenbaum or other genetic specialists aren't generally necessary if the symptoms don't justify it. Op, there are readily identifiable genetic disorders that may require screening, but the vast majority of kids who are identified as having developmental delays don't fit into that camp. Children's will send you for a generic microarray, which if not covered by insurance will cost you $4k out of pocket.

[Anonymous]

When we were in your place, we did only the EI therapies. Our son started walking a little before he turned two. Now, we are more concerned about his speech delay than gross or fine motor delays. (He's not yet 3.5 and talks like our older child did at 2.5.) So now we are adding intensive private therapy. I'd wait until your son is almost 2 and start private speech and/or physical therapy then if you think it's needed. I know you are in a tough spot right now because you have no idea what the future holds. No one does, so no one can reliably tell you what therapy is "best" or "enough". That is hard to accept. But your child is still quite young, and age 2 is still early intervention. Good luck!