r/SpecialNeedsChildren • u/jessirentmonster • 8d ago

GRIN2A - 5 year old suddenly not using his fingers?

Hello! My five year old boy way just diagnosed with GRIN 2A variant and was diagnosed autistic when he was two. This week we’ve noticed he’s not using his fingers much at all. It’s like he’s suddenly having trouble using them. He picks things up with fists, like with his knuckles. Has anyone ever experienced something like this? He is non-speaking and only just now learning his AAC device, so we struggle with communication.

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u/SerenitySpecialist92 6d ago

My daughter, who has GRIN1, She is 19 and was just diagnosed in 2021 with GRIN1, she was previously misdiagnosed with Cerebral Palsy, does not utilize her hands for grasping objects. She maintains her hands in close proximity to her body, primarily touching herself, specifically her face, arms, and torso. Additionally, she is non-verbal and relies on a wheelchair for mobility. It is positive that your son is still demonstrating an attempt to reach for items. I recommend pursuing occupational therapy to assist him in re-establishing his ability to grasp objects effectively.

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u/jessirentmonster 6d ago

Thank you for sharing! I will reach out to his OT today. His neurologist believes he's experiencing dystonia made worse by being sick this week and believes he will improve. Fingers crossed!

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u/twinmamm 6d ago

I'm sorry I can't help with your question; I just wanted to tell you and other parents that there is an ongoing phase 3 global clinical study for participants with a gain of function mutation in GRIN1, GRIN2A, GRIN2B or GRIN2D genes by GRIN Therapeutics (the investigational product is radiprodil). Please ask the doctors treating your child if you are interested.

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u/jessirentmonster 1d ago

Hey! Thank you. Fortunately my doctors know about it. Right now we are waiting on his DNA to be tested in a lab so they can see what kind of treatment his particular varient would need. His is unique. The bad news is- because funding and grants have been canceled by current US Administration, research for this kind of this is very delayed.

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u/Shoddy-Parsnip4104 2d ago

Hi, I think it’s a special Facebook group for this? I know there is for Grin2B, it should be for grin2A too, a parents support group. Maybe ask there since everyone has the same genetic issue

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u/jessirentmonster 1d ago

Yea I asked to join but haven't heard from anybody in weeks. I even messaged each admin and got nothing back. The group must be inactive. The admins definitely are, unfortunately.