OP in testing have you had a full hearing screening done and a complete visual screening done? Her doctors did not want her to have any screen time due to her vision. Your DD sounds like another toddler I have heard about since birth. This little girl is similar in motor skills and is seeing a private PY and is now using a stander to build up weight bearing strength etc,
Working with a PT.
There has been initial genetic testing done, but after nothing found, due to her global delays, they did the paper work with insurance to get a more detailed profile. They are working with someone at Johns Hopkins.
You need to be sure that DD will get access to all therapies that she might need as there is a push in early intervention to have one therapy and other needs met by this person supposedly as a cost saving measure. This approach for a child with global delays is not good as one may need PT, ot, and speech. A full neuropsych evaluation might be helpful at some point.
Get information on when your child can start any center-based preschool programs. In ArLingtton, I know it is 2 years old for those with multiple needs, but it may be 3 years old in other divisions. Overall, best approach is to have no limits on what your DC might be able to do and put in the one-to-one time as give your toddler time with other youngsters in natural settings as the more stimulation the better with others. As you find a connection that clicks then reenforce and build on it.

Anonymous wrote:I'd get an MRI - my son had to have a sedated one recently and I was so nervous about it but at Hopkins they assured me they do them all the time and while they cannot guarantee complication free, there are certain risk factors for complications we just didn't have. I think one was diabetes, maybe heart issues, family history with anesthesia, etc.

You might get some information that would provide you an opportunity to do some early intervention to help while your child's brain is still forming. I'd totally do this without hesitation- the upside could be significant.

adding this to say - maybe do a consult with a neuro and then let THEM order the MRI- don't feel like you have to only stop with the ped at this point. They can provide more of an informed risk / benefit analysis.

I'd get an MRI - my son had to have a sedated one recently and I was so nervous about it but at Hopkins they assured me they do them all the time and while they cannot guarantee complication free, there are certain risk factors for complications we just didn't have. I think one was diabetes, maybe heart issues, family history with anesthesia, etc.

You might get some information that would provide you an opportunity to do some early intervention to help while your child's brain is still forming. I'd totally do this without hesitation- the upside could be significant.

My preemie son had similar symptoms, except his eye contact was problematic and he would go off in his own world - I would wave my hand in front of his face at 14 months old, no reaction. Cerebral palsy was ruled out first. We did do the MRI, and extensive genetic testing to rule out fragile X, etc.

He was diagnosed with global developmental delays, and had intensive physical, occupational, speech and "play therapy"! Yes, apparently play therapy is a thing. PLEASE DO ALL THESE THINGS, OP, THEY WILL SAVE YOUR SON. And don't just do the weekly or biweekly therapies. Take notes, and do practice sessions yourself at home several times a day, every day! Buy the material, or make it at home, whatever you need to do. Early intervention and intensive practice is critical. The speech method I used at home with him was "It Takes Two To Talk". You can buy it on Amazon.

One day the physical therapist and I were chatting and we realized 14 month old DS had laid out all the little sensory balls she had brought in order of size and color, in a grid. He had no speech but could pronounce in a recognizable way all the brands of cars whose logo he saw passing by. My father printed them all out and spread them on the carpet, and even upside down, this toddler could recognize them instantly. We suspected high-functioning autism at the time.

Years later, he was diagnosed with inattentive ADHD (the daydreaming kind, symptoms were clear from the beginning!), and some learning disorders associated with it, like dyscalculia (specific issue in math). His IQ is actually in the low part of the gifted range, at 130. He is a high schooler now, taking all advanced classes, with an extra time accommodation for tests and special counseling services to keep him organized.

Jury is still out on the high-functioning autism. We didn't get the testing for that, because he was getting all the services and accommodations he needed with his ADHD label at school. He is introverted and not very social, but that's fine - we're all like that in the family

Best of luck, OP. You have your work cut out for you, but if I could do it, so can you!

OP have you looked in to the Hanen Method of speech therapy? It may help you to see ways that he is actually engaging with you that can lead to play/reciprocal communication. The PT's comment that she's concerned about his lack of play is kind of weird, I think. The main point is developing his communication skills and ability to interact with the environment. OTs (and maybe PTs too) can be a little woo woo and one of the woo things is about "the necessity of play" etc etc.

Anonymous wrote:

Anonymous wrote:OP here. Sorry meant to say cerebral palsy. Did not proofread what I wrote and just hit send.

We did do genetic testing and they came back normal. The development pediatrician said that the MRI would be able to tell if there are any structural issues with the brain. We have an in person visit with the neurologist to get a more thorough physical examination. The pediatrician doesn’t think he has neurological issues but he thinks it’s worth checking out. Based on his cognitive and physical abilities, he puts my son at the 9 month old mark.

Normally I'd say no to an MRI but I'd do one in this situation. Hopefully the neurologist will help. I'd also try to get private OT, PT and ST if your insurance will pay.

I have a different opinion. The MRI would not reveal any information that would change the treatment, and it does post risk and expense. I declined an MRI for those reasons (different symptoms but the MRI was not going to make a difference in the course of treatment.) Ask the Dev Ped and neurologist what knowing about "any structural issues in the brain" is going to do other than satisfy their own curiosity/desire to "do something." MRIs are for when you think there's actually something to operate on (like a brain tumor) not just delays, in my opinion.

Anonymous wrote:There are many levels of genetic testing and depending on the sensitivity you may get a clean result when the problem is actually genetic. What kinds of tests did you run? You said a neurologist ordered it? The really sensitive tests need to be ordered by a geneticist (insurance issues--a gastro guy for example can't just go and order a bone scan). A full in-office workup by a geneticist is a very thorough exam. If you haven't had one I recommend it. Ken Rosenbaum is the guy to see at Children's but he's difficult to get in to see. There are other people as well. We did the MRI at 2 at Children's and my kid did fine. I wouldn't do it outside a hospital for first time anesthesia though. What was the flag to get you into EI at nine months?

OP here. My older child was in Early Intervention for gross motor skills. She walked at 16.5 months. I could see from early on that my son was like her and was not moving at 9 months. I wanted him to get therapy early on. Unbeknownst to us, his issues run deeper than just a delay in gross motor development. My older DD though did not have the other delays. She had quite a few words by 17 months and no issues with playing or following directions.

There are many levels of genetic testing and depending on the sensitivity you may get a clean result when the problem is actually genetic. What kinds of tests did you run? You said a neurologist ordered it? The really sensitive tests need to be ordered by a geneticist (insurance issues--a gastro guy for example can't just go and order a bone scan). A full in-office workup by a geneticist is a very thorough exam. If you haven't had one I recommend it. Ken Rosenbaum is the guy to see at Children's but he's difficult to get in to see. There are other people as well. We did the MRI at 2 at Children's and my kid did fine. I wouldn't do it outside a hospital for first time anesthesia though. What was the flag to get you into EI at nine months?

Anonymous wrote:OP here. Sorry meant to say cerebral palsy. Did not proofread what I wrote and just hit send.

We did do genetic testing and they came back normal. The development pediatrician said that the MRI would be able to tell if there are any structural issues with the brain. We have an in person visit with the neurologist to get a more thorough physical examination. The pediatrician doesn’t think he has neurological issues but he thinks it’s worth checking out. Based on his cognitive and physical abilities, he puts my son at the 9 month old mark.

Normally I'd say no to an MRI but I'd do one in this situation. Hopefully the neurologist will help. I'd also try to get private OT, PT and ST if your insurance will pay.

OP here. Sorry meant to say cerebral palsy. Did not proofread what I wrote and just hit send.

We did do genetic testing and they came back normal. The development pediatrician said that the MRI would be able to tell if there are any structural issues with the brain. We have an in person visit with the neurologist to get a more thorough physical examination. The pediatrician doesn’t think he has neurological issues but he thinks it’s worth checking out. Based on his cognitive and physical abilities, he puts my son at the 9 month old mark.

My friend's son was like this. He had gross motor delays and gross speech delays. He ended up diagnosed with a very rare genetic disorder. It took several visits to the mayo clinic. He's 3 now but at about the cognitive and physical level of a 18-month old. He's absolutely making progress but the prognosis is similar to down's syndrome hopefully with less physical ailments.

First big hug.

Op, it’s probably too soon to determine a definitive diagnosis barring any genetic testing results.

Keep doing what you’re doing. Early intervention helps with pretty much any diagnosis.

Also know that there are respite organizations. You and your spouse need tlc too.

This was my brother in the mid 80s. He was my mom and dads 3rd so my mom knew by age 18 months he was disabled. Back then it was called mild retardation. He has the intellect of about a 9 year old. He has a great life, is loved by many, and his struggles have been more ours than his (meaning he doesn't ever get down about them because he doesn't have capacity to) and he is an essential part of our family.

PS: The no pointing is the number one thing that stands out to me

Its very concerning and I would do the MRI. I would be very concerned about sedation but at 18 months, no speech and not walking or pulling up is concerning. I'm sorry you are going through that. It may or may not be an intellectual disability. I would think it was neurological.

My 17.5 month old has significant developmental delays. He’s not walking, still not pulling to a standing position, has not one word and most troubling is he doesn’t know how to play. He’s been in early intervention since he was 9 months old and he was recently evaluated by a developmental pediatrician. The doctor ruled out celebrating palsy and was also baffled by my son. Despite having significant delays, he has above average stranger anxiety. He is however very attached to me and DH. The doctor said he doesn’t think it is autism as he is very attached and affectionate with us and has very good eye contact. He recently did some genetic testing ordered by the neurologist and they came back normal. The neurologist suggested getting a MRI but we are hesitant as he would need to be sedated. His PT is also baffled and doesn’t think it’s autism either. Of all his delays, she said the most worrisome is the lack of understanding about the concept of play. He doesn’t wave, point, nod or shake his head. He can babble. The only thing I can think of is intellectual disability. Any thoughts? Does it sound like he had this?