Our girl is three years and - for now- she only has à big syrinx in her spinal cord, no cause found yet. She can be also very grumpy, but she can explain herself every month better and on her bad moments she's now explaining she's in a lot of pain. Sometimes she Just cannot move her legs or arms and is also very grumpy about that. We are daily dealing with kidsbehaviour or real symptoms, and this combination is every day a challenge. Whish you all the best.
The hoarseness is definitely a Chiari symptom, as is clumsiness, and she could be spitting out her food due to difficulty swallowing. The latter could be either the sensation of pain even though her throat looks normal; or actual difficulty swallowing due to no gag reflex, e.g.
I had these particular symptoms, also my ears always hurt, but looked normal.
Poor baby; no wonder she's grumpy. I would be--and am!
It's good that she is developing normally!
The good news, i think, is that pediatric neurosurgeons seem more aware of Chiari than the ones for adults. Can you try tylenol, to see if it reduces her pain?
Well some oddities are she has a very hoarse voice for such a little girl-it sounds like she is a 45 year old pack a day smoker or has a sore throat all the time-she holds her food in her mouth when eating quite often and spits it out (is it a toddler issue or a chiari swalloing problem-hard to say?) she falls alot again is it toddler clumisiness or chiari? She has the happiest silly girl personality until she is grumpy and then she is extremely grumpy for no easy to explain reason. I wish you could hear her voice though its so hoarse....We have found a highly recomended pediatric ns in Cincinnati but its just such a long wait and see....
Hi....I do not have a little one with Chiari but with all of us that chat on here I know we all get grumpy when we hurt...and children act out b4 they can express how they feel so acting grumpy is a way to let u know "I do not feel well"
Does she also have GERD/reflux issues?
Have they done a sleep study on her yet?
There r so many related issues that they can get overlooked...it seems when Drs r focused on one thing they do not see other things that r related and only want to deal with one thing at a time....I would suggest researching Chiari specialists....seizures r not uncommon in children and some adults with Chiari....
Hang in there <3