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horner's syndrome

My 3 year old daughter was diagnosed with acquired horner's syndrome last year. she has had numerous urine tests, mri's and cat scans to look for neuroblastoma-all have been negative.
Her doctors have determined that it may be idiopathic. My question is, if they cannot determine what damaged the sympathetic nerve, what could have caused this? she has all of the classic signes of horner's: droopy eye when tired, half flushed face and no sweating on one side. This was not present at birth. also, will this be something she has for the rest of her life? i have only spoken with one other parent who has a child with this. I have read numerous info. where this has happened after surgery or injury to the neck. This is not the case here. I am really looking for some answers as the not known is very frustrating.
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Avatar universal
i have a 4 1/2 y.o son who also has horner's syndrom for no apparent reason... he too has the droopy eylid, lack of sweating,etc.   he has had all the tests as well, and they have concluded that it is congential as well.  it is sooo hard to get more info.  now he is having surgury for a hernia, and i am scared about using general anesthesa, I am still not a peace as to why he has the horners
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Avatar universal
In children there are three major categories for causes of Horner's syndrome: congenital, acquired due to a medical procedure, or acquired without a medical procedure. It seems that this was not present from birth, and you have mentioned no medical procedures. Therefore this could be due to a problem anywhere between the brain stem, spinal cord, and the peripheral nerve leading to the face. Horner's syndrome invovles the interruption of the sympathetic nerves to the face (part of the autonomic nervous system). To evaluate this problem your child may have a MRI of the brain and cervical spine, evaluation of the blood vessels of the neck, and an imaging study (MRI or CT) of the chest/neck. These test will exclude many of the causes, such as tumors, injury to the blood vessels, and inflammatory lesion in the brainstem or spine. A test of the pupil function with different eye drops can also help to determine where the problem may be. To exclude neuroblastoma a metaiodobenzylguanidine (MIBG) scan would be helpful. You could ask your neurologist or neuro-ophthalmologist about these tests. After all the testing is done, there is still patients who have no identified cause. Follow-up with a neurologist periodically would be recommended. Regarding prognosis, without knowing the cause I could not speculate. Good luck and sorry for the delay.
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