Aa
Aa
A
A
A
Close
Avatar universal

Infant with developmental delays related to Chairi Malformation type 1?

I have a 22 month old, she's been diagnosed with Chairi type 1. She is developmentally delayed...has not crawled, walked, started talking (only Mama).

We've had her in PT, OT, and speech since she was about a year old.

We see a neurosurgeon next month, for a second opinion. We've already been told by one neurosurgeon that that Chairi isn't the reason why she is so delayed although that is the only thing they have found wrong with her yet.

We are also getting genetic testing done hopefully in October.

Anyone else out there have a child that can relate?

Mom here, is getting so discouraged with the progress we've seen with therapy so far..

Thanks in advance!

Brittney J.
1 Responses
Sort by: Helpful Oldest Newest
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chairi forum
I know it is easy to get overwhelmed and frustrated trying to navigate this condition since it is hard to know what all is going on  when there are so few Drs that are well informed and educated on the condtion and comorbid conditions.
It's possible the symptoms relating to her Chiari is causing the delays.....for example, when I was an infant my mom would put me down for a nap and try to alternate which side I slept on, left or right side of my head....everytime she would change my position and came in to check I was turned back the other way....the Drs told her not to worry if my head was flat, I was a girl and my hair would cover it.....my point is, even thought I could not say what my symptoms were, I knew enought that something hurt with my head turned a certain way, so I moved to avoid the pain. I am sure that your little one may be avoiding  how she feels doing certain activities which may cause or lead to a delay...most Drs are only looking for a clinical DX or reason instead of connecting the dots as they were.....

Does your little one spend a lot of time on her tummy? Or in a seat of some sort? I am not sure this helps you or not....but once you find a true Chiari specialist , things will begin to fall into place as to her delays, and a course of action for her.
Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease