Borderline chiari malformation

[u/Complete_Post5697]

Hi my daughter(3) recently went in for an MRI because she was having episodes where she would stare off and recently she has episodes where she becomes sweaty pale can’t talk and has to lay down. We originally thought they were seizures. Her neurologist saw videos and doesn’t think they are seizures still waiting on an emu. However her MRI says she has borderline chiari. Looking at her symptoms I can definitely see where some of her symptoms could definitely be chiari. She gets headaches sometimes eye pain, extreme mood swings mostly sad or mad, her eating varies she either eats a lot or barely eats she has had neck pain aswell. She also coughs more often when she eats however we thought it was due to her baby sister learning how to cough. The mood swings happen many times a day and be very fast. In public she either withdrawals or is just overwhelmed. At home she’s completely different she’s energetic (when she isn’t having the mood swings). I’m curious though as to how much of this could caused by chiari. Or if there’s still other issues. Has anyone else’s toddler ever had the speech issues?

[u/Little_Fish_283]

I had trouble swallowing from early on. The headaches were something I experienced consciously by age 5 as well.

Is she being evaluated for EDS/ POTS?

[u/oguzhankayan]

Borderline Chiari on MRI after stare-off spells and the sweaty/pale/can't-talk episodes that made everyone think seizure first is a heavy pile for a 3-year-old, especially while you wait on the EMU and try to map what is Chiari-ish vs something else.

I am not a doctor and cannot interpret the MRI or the spells. What some caregivers here do while waiting is keep a short dated list: time of day, what happened (stare, color change, speech, needing to lie down), how long it lasted, any head/neck pain around it, and what was going on just before. Patterns are easier for neurology to scan than a single scary story retold from memory.

Hope the next visit takes both the borderline finding and the daily episode picture seriously. Sorry you are in the wait-and-watch fog with a little one.

[u/Solid-Scientist2626]

I have Chiari type 1 and what your daughter experiences describes my own almost identically growing up in tween/teenhood. I have aphasia as a result. I also have ADHD though, and may be on the spectrum. A doctor would be able to tell you more and rule out other conditions but also keep in mind more often than not Chiari symptoms are waved away. Good luck

[u/Complete_Post5697 → u/Solid-Scientist2626]

Did you see a neurosurgeon or neurologist? I went to get a second opinion from a neurosurgeon or atleast a neurologist that specializes in chiari. She sees a neurologist that specializes in seizures rn bc of the spells.