Aa
Aa
A
A
A
Close
Avatar universal

Anyone have experience w/young child and chiari?

My daughter has a chiari malformation-it was originally found during a MRI from Febuary when she was 11 mths old. They however missed it (it was a MRI for seizures) and only found it when her MRI was re examined in a peer conference in April. We just had a cine MRI done to get better information. Our neurosurgeon appointment was originally supposed to be in August (took 3 mths to get in) but due to unrelated medical treatment had to be cancelled (she was in the hospital for something not related to Chiari). Now her appointment is not until 10/31! Anyways she seem on target for devolpment-hitting her milestones....but she is a very grumpy girl. So grumpy in fact she has chased away 2 of our baby sitters. Do you think she could be having headaches related to her Chiari? Her cine MRI did show mild restriction of her CSF flow...and moderate crowding at her craniol junction. She is too little to tell me if her head or anything else hurts (just turned 18 mths).
4 Responses
Sort by: Helpful Oldest Newest
3684562 tn?1347873826
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.
Helpful - 0
Avatar universal
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?  
Helpful - 0
Avatar universal
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....
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  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
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?1671273328
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