chmmr
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Hi Everyone i have been lurking for awhile and figured it was about time i registered and introduced myself.
I am the mom of a 3 year old little girl with a seizure disorder/epilepsy.
She was born 6 weeks early , with her twin brother, and spent 3 relatively uneventful weeks in the NICU before coming home. 6 days out of the NICU we were in our dr's office for her twin brother and he went to do a well baby check on her and she had her first "presumed seizure". I say presumed because it's been a bit of a gong show the last 3 years and different neuros have said different things from sleep myoclonus, to partial seizures to .....???
Anyways here's the brief (or not so brief)run down on her:
Had the first seizure at 4 weeks of age (i think a tonic clonic but may have just been clonic), had an eeg within a few hours and it was abnormal ( sharp waves (epileptiform abnormalities) over the right mid temporal with involvement of the ear and paracentral region on the ear electrode paracentral region without clinical accompaniment. ) They were going to start her on meds (phenobarb) right away but wound up talking to the local childrens hospital who said to wait because they felt it could be sleep myoclonus and that the EEG abnormality was just a fluke. We did some testing, including an US to look for bleeds in her brain and all came back normal so we decided to watch and wait
The next number of months went on and we saw questionable events from her, including one tonic clonic in the tub, and bounced back and forth with the ped and the neuro etc, eventually decided to put her on clobazam at 6 months old for "partial epilepsy" (her EEG was still abnormal while on it but much less than it had been so the clobazam obviously helped). Really long story short they kept trying to tell me she was having sleep myoclonus and i said then she shouldn't be medicated. When she turned 1, we did an MRI, a week long of EEG monitoring (continuous) and a lumbar puncture and they didn't see anything (although her EEG continued to be abnormal) and we hadn't seen the "behaviours" since a few months before so we took her off the meds and hoped that the EEG abnormalities were related to her prematurity and as her brain matured the abnormalities would disappear. We didn't have any big events, lots of little maybes but i tried hard to block it all out like they told me to for the last 18-20 months.
As the end of Feb, we had our repeat EEG because she had turned 3-this was supposed to be our "reprieve" and then we would be free of all of this. Not so much-her EEG was actually much worse, and had "Broad based sharp waves almost continuously at T6 and infrequently at P4 and C4 with no clinical accompaniment". When my pediatrician saw the results and said this was not good, that she was either headed for a huge seizure that could cause permanent brain damage, or she would have so much activity that the background activity was interrrupted and she would wind up with regression and brain damage that could be hard if not impossible to reverse and she recommended meds. Then surprise surprise she talked to the neuro at childrens hospital and they said nope let's wait for her to do something so now we are waiting and watching for "weird things" because i guess posterior temporal seizures can manifest in weird ways, especially with kids and now we have to have full neuro exams every 2 months to make sure everything stays status quo.
Long enough?
I am the mom of a 3 year old little girl with a seizure disorder/epilepsy.
She was born 6 weeks early , with her twin brother, and spent 3 relatively uneventful weeks in the NICU before coming home. 6 days out of the NICU we were in our dr's office for her twin brother and he went to do a well baby check on her and she had her first "presumed seizure". I say presumed because it's been a bit of a gong show the last 3 years and different neuros have said different things from sleep myoclonus, to partial seizures to .....???
Anyways here's the brief (or not so brief)run down on her:
Had the first seizure at 4 weeks of age (i think a tonic clonic but may have just been clonic), had an eeg within a few hours and it was abnormal ( sharp waves (epileptiform abnormalities) over the right mid temporal with involvement of the ear and paracentral region on the ear electrode paracentral region without clinical accompaniment. ) They were going to start her on meds (phenobarb) right away but wound up talking to the local childrens hospital who said to wait because they felt it could be sleep myoclonus and that the EEG abnormality was just a fluke. We did some testing, including an US to look for bleeds in her brain and all came back normal so we decided to watch and wait
The next number of months went on and we saw questionable events from her, including one tonic clonic in the tub, and bounced back and forth with the ped and the neuro etc, eventually decided to put her on clobazam at 6 months old for "partial epilepsy" (her EEG was still abnormal while on it but much less than it had been so the clobazam obviously helped). Really long story short they kept trying to tell me she was having sleep myoclonus and i said then she shouldn't be medicated. When she turned 1, we did an MRI, a week long of EEG monitoring (continuous) and a lumbar puncture and they didn't see anything (although her EEG continued to be abnormal) and we hadn't seen the "behaviours" since a few months before so we took her off the meds and hoped that the EEG abnormalities were related to her prematurity and as her brain matured the abnormalities would disappear. We didn't have any big events, lots of little maybes but i tried hard to block it all out like they told me to for the last 18-20 months.
As the end of Feb, we had our repeat EEG because she had turned 3-this was supposed to be our "reprieve" and then we would be free of all of this. Not so much-her EEG was actually much worse, and had "Broad based sharp waves almost continuously at T6 and infrequently at P4 and C4 with no clinical accompaniment". When my pediatrician saw the results and said this was not good, that she was either headed for a huge seizure that could cause permanent brain damage, or she would have so much activity that the background activity was interrrupted and she would wind up with regression and brain damage that could be hard if not impossible to reverse and she recommended meds. Then surprise surprise she talked to the neuro at childrens hospital and they said nope let's wait for her to do something so now we are waiting and watching for "weird things" because i guess posterior temporal seizures can manifest in weird ways, especially with kids and now we have to have full neuro exams every 2 months to make sure everything stays status quo.
Long enough?
I was on phenobarb as an infant, and also had the lumbar puncture.
I do consider us lucky-we have 4 kids including her and her twin brother, and all my other kids have been relatively healthy. Not to mention there are so many worse kinds of epilepsy (i have a friend whose daughter has dravet syndrome) so i do know we are very fortunate. That said i would just like to make sure my baby girl (and my only girl of my 4 kids) has every chance at a normal life and as problem free as possible. If that means meds right now i would far prefer that to some kind of damage and regression.