Anonymous wrote:

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.

+1

On testing for a disability and to note the date of onset, testing for diagnostic reasons can happen age six on.

Hiwever, if if a delay is suspected one can have a screening done at age 6 months or after to see if one would meet the criteria for a developmental disability waiver and placement on the Developmental Disability Waiver Waiting List. Note: This is information in Virginia and it is just a basic screening and does not come with an official label of a disability until testing is done as mentioned. It also does not qualify one for Medicaid. Under age 18 that would in most cases be bases on Parent(s) income and resources.

— A screening in Virginia would be done by requesting the local Community Services Board to do an intake. There is no charge for this service. It uses the VIDES screening tool which has a tool for young children and can be found online.

— It is wise to do this as the CSB if a delay is found can tell you about local Early Intervention Services and how to connect to them. And/or you would have some information to share with private providers if you chose to use them. This screening would in no way take the place of a more comprehensive early evaluation, but it could be an early guidepost.

— View these steps as a proactive measure to see what can assist your child in meeting developmental milestones and putting you in touch with area resources.

Anonymous wrote:

Anonymous wrote: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?

Who is taking care of him. Is it you or someone else. If it is not you, then you might want to reconsider and take care of him directly.
Mother usually has the best results when taking care of special needs child. Nobody is as invested and does a great of a job and give enough
attention and provides enough stimuli and the right exposure to the world like mom.

OP, ignore this poster’s efforts to guilt working moms of kids with SN. Moms do what is best for their families over all and some kids with SN don’t even have moms! DD’s close friend has two dads —one of who has ADHD himself. He’s an amazing advocate for 2E kids.

Anonymous wrote: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.

Please don’t minimize the importance of play. That is how children learn and develop. There is nothing “woo woo” about it.

PP again. Your child is probably too young to be diagnosed with an intellectual disability. A person is diagnosed through a combination of a low IQ score and difficulties with certain activities of daily living (like tying your shoes) that I think your kiddo is way too young to test for. But someone else should correct me if I’m wrong and they can test little kids for ID.

NP. You probably know this, but I just want to be sure you understand that “intellectual disability” is an umbrella term that encompasses a lot of different diagnoses. For example, Down Syndrome and Fragile X both come with an intellectual disability. Intellectual disability is what we used to call mental retardation.

By the way (CP mom again), with kids with motor disorders, you often have to be the initiators and "stage hands" of their play. Let your child tell you with his eyes what he would like to do. Let him be the director while you move the legos, magnatiles, etc.

Mom of child with cerebral palsy. (Actually, I loved the "celebrating" palsy!)

A developmental physician cannot rule out CP on examination. I would take your child to the movement disorders clinic at Kennedy-Krieger in Baltimore. Alec Hoon is the best at evaluating whether your child has a motoric disorder.

With kids with motoric disorders who cannot explore their world effectively (reach out and grab things, point, communicate effectively), it is too easy to label their problems as intellectual. I'm betting you have a smart cookie there.

How about some alternative communication help? Is he in speech therapy?

Key question:
Agree with PPs.
What do they think they will see in MRI and would it change course of treatment?
Risk of MRI are diabetes and other lifelong illness. At what age would that risk go down?

I would hold off on the MRI *FOR NOW.* eventually, yes, but it won’t change treatment at this point.

I honestly think it’s way too early to rule out autism, which often can’t be solidly diagnosed til 6-7. Eye contact and loving his parents doesn’t rule out autism. But the other stuff could point to it.

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?

Agreed. My friend had to do the full genome workup which takes 5 months to identify the rare genetic abnormality. How old is your daughter OP? Does she still have delays? That would almost certainly point in the direction of needing a workup.

Anonymous wrote: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.

MRI is very serious business with kids, can do more harm then good.

Anonymous wrote: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?

Who is taking care of him. Is it you or someone else. If it is not you, then you might want to reconsider and take care of him directly.
Mother usually has the best results when taking care of special needs child. Nobody is as invested and does a great of a job and give enough
attention and provides enough stimuli and the right exposure to the world like mom.

Is your child in PT? Children with hypotonia can experience what you've described. Private therapy is incredibly important. Hope you can get some answers.

My child did not walk until 20 months. Pediatric neurologist advised against an MRI, as regardless of the findings, physical therapy was needed.

My friend's daughter had a full genetic work-up as she failed to meet communication milestones, developed anxiety, and began having sensory issues. A genetic duplication was found, but regardless of this finding, therapies would have been started regardless.