Newly diagnosed 6 year old

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Hi! My daughter is 6 and was diagnosed with cyclic vomiting syndrome at 2 years old. We have lived with that diagnosis for Years. She worsened about 8 months ago and the meds that had been helping no longer helped. We were referred to many doctors, one being neurologist who did an eeg. It turns out my daughter is having seizures in her sleep. She has no outward signs of a seizure... she can talk, walk, no abnormal movements etc. Is this normal? The doctor believes my daughters seizures are causing her nighttime vomiting episodes. They are extreme, vomiting 10-15 times with severe stomach pain / nausea. Does anyone have any experience with this? I could use any help or advice. We never expected her to have epilepsy. I am still reeling from that and feeling a lot of confusion and concern. She will begin Keppra asap. Please advise and thanks so much!

Comments

so there are a lot of ways

Submitted by Amy Jo on Fri, 2017-07-28 - 14:15

so there are a lot of ways epilepsy shows up. it is definitely normal that family is blindsided and people around (or even the patient themselves) don't see or recognize seizures. I can't catch most of my child's seizures, a lot are just her perception is altered or (when meds were lowered) they were so so brief or they were just brief fumbles. I did know something was not normal, but not everyone knows that. you can't tell by looking at someone that they have many medical conditions so if you think that's how it should work, change your thinking asap. there is no fairness in medical situations, there's just love the child you have without planning their lives for them in advance (and then having your expectations crushed). one of the neurosurgeons who has treated my child often would jump to CVS as likely issue (it didn't match up, but I had to read bunches on it to get there, grrr). I would associate CVS with migraines and some increased chances of other genetic neuro issues (anxiety, seizures, or more). epilepsy is more common in people on the spectrum, there's stronger associations with migraine and other neurological issues so not really a big reach. if the meds that worked before were antiepiletics, maybe it's part and parcel of the same thing or maybe she just has two different conditions - they may figure out links between later, there's no going to be a lot of definitive info with epilepsy, there's a lot of vague grey zones. some epilepsies have seizures that impact the autonomic nervous system so related brain-gut issues are not outside of possible.vomiting with seizures is where a regular neurologist might jump to Panayiotopolous Syndrome (ok, I often mess up vowels in greek names). but anything related to autonomic seizures is possible to worry about so and sometimes those are dangerous (stops breathing, high pulse, etc). it sounds like your child had at least an overnight EEG, or was it just a sleep deprived test that included sleep? did they see any other affects on her aside from vomiting, did they actually record seizures or just associated activity? are you working with an epileptologist or a regular neurologist?

so there are a lot of ways epilepsy shows up. it is definitely normal that family is blindsided and people around (or even the patient themselves) don't see or recognize seizures. I can't catch most of my child's seizures, a lot are just her perception is altered or (when meds were lowered) they were so so brief or they were just brief fumbles. I did know something was not normal, but not everyone knows that. you can't tell by looking at someone that they have many medical conditions so if you think that's how it should work, change your thinking  asap. there is no fairness in medical situations, there's just love the child you have without planning their lives for them in advance (and then having your expectations crushed). one of the neurosurgeons who has treated my child often would jump to CVS as likely issue (it didn't match up, but I had to read bunches on it to get there, grrr). I would associate CVS with migraines and some increased chances of other genetic neuro issues (anxiety, seizures, or more). epilepsy is more common in people on the spectrum, there's stronger associations with migraine and other neurological issues so not really a big reach. if the meds that worked before were antiepiletics, maybe it's part and parcel of the same thing or maybe she just has two different conditions - they may figure out links between later, there's no going to be a lot of definitive info with epilepsy, there's a lot of vague grey zones. some epilepsies have seizures that impact the autonomic nervous system so related brain-gut issues are not outside of possible.vomiting with seizures is where a regular neurologist might jump to Panayiotopolous Syndrome (ok, I often mess up vowels in greek names). but anything related to autonomic seizures is possible to worry about so and sometimes those are dangerous (stops breathing, high pulse, etc). it sounds like your child had at least an overnight EEG, or was it just a sleep deprived test that included sleep? did they see any other affects on her aside from vomiting, did they actually record seizures or just associated activity? are you working with an epileptologist or a regular neurologist?

so there are a lot of ways epilepsy shows up. it is definitely normal that family is blindsided and people around (or even the patient themselves) don't see or recognize seizures. I can't catch most of my child's seizures, a lot are just her perception is altered or (when meds were lowered) they were so so brief or they were just brief fumbles. I did know something was not normal, but not everyone knows that. you can't tell by looking at someone that they have many medical conditions so if you think that's how it should work, change your thinking asap. there is no fairness in medical situations, there's just love the child you have without planning their lives for them in advance (and then having your expectations crushed). one of the neurosurgeons who has treated my child often would jump to CVS as likely issue (it didn't match up, but I had to read bunches on it to get there, grrr). I would associate CVS with migraines and some increased chances of other genetic neuro issues (anxiety, seizures, or more). epilepsy is more common in people on the spectrum, there's stronger associations with migraine and other neurological issues so not really a big reach. if the meds that worked before were antiepiletics, maybe it's part and parcel of the same thing or maybe she just has two different conditions - they may figure out links between later, there's no going to be a lot of definitive info with epilepsy, there's a lot of vague grey zones. some epilepsies have seizures that impact the autonomic nervous system so related brain-gut issues are not outside of possible.vomiting with seizures is where a regular neurologist might jump to Panayiotopolous Syndrome (ok, I often mess up vowels in greek names). but anything related to autonomic seizures is possible to worry about so and sometimes those are dangerous (stops breathing, high pulse, etc). it sounds like your child had at least an overnight EEG, or was it just a sleep deprived test that included sleep? did they see any other affects on her aside from vomiting, did they actually record seizures or just associated activity? are you working with an epileptologist or a regular neurologist?

Oh yes, my son had a lot of

Submitted by mereloaded on Sat, 2017-09-09 - 10:02

Oh yes, my son had a lot of unexplained vomiting before he got diagnosed with epilepsy. He would vomit randomly for no reason at all. Then he had a partial seizure. Then a tc. The vomiting was the early warning sign, as auras can make people dizzy and nauseous resulting in vomiting. I never expected epilepsy as a diagnosis but it came as a relief as well because we finally knew what we were dealing with.My son is completely normal other wise, normal intelligence, athletic ability, etc.