Hello... I'll start with the old line of "I'm new & looking for some advice, guidance & support.." I'm a single mum of a beautiful girl, Makaede (pronounced Mah-kay-dee) who is nearly 11 months old. We've been on this journey since she was around 4 weeks old. But seeing Dr's since she was around 6-7 months old. (Her activity only increased just before 6 months, until then I thought I was just being a "first time mum"). Mak has been diagnosed with myoclonic jerks. But the Dr's are hesitant to diagnose her with full epilepsy because of her age & the fact that her seizure activity does not require medication as yet (read it is not affecting her development). We have had a 1/2 hour EEG where she was the perfect patient & slept for 15 minutes, was awake for 15 minutes & she did a jerk during her light test. It was all videotaped. The neurologist said there were "sqiggles" during her jerk. However, all other brain activity was normal. They did not feel that she needed medication. Mak will cluster jerk up to 30 times an hour on a good day for every other hour in that day.. I think it's a lot, but apparently it isn't.
My Mother (she's a special needs teacher) thinks she has absence seizures & has since she was born. I worried about this too as she stares off & goes somewhere else. But she is a very calm baby, which makes it hard. But you can't bring her back sometimes..
I've found it hard to obtain any information on babies that aren't having major seizures.. or absence seizure. I guess I'm looking for information from those who experience it. It's also been hard to find information on babies with myoclonic jerks. I guess because of the difficulty (hesitance?) in diagnosing babies with anything whilst their brains are developing.
Mak's fathers Aunt was diagnosed with epilepsy at 50 & Mak's birth was considered a hard, traumatic birth in that I pushed for 2 hours (I still thought it was ok - I had nothing else to compare it to!). I don't know if these directly contribute, I'm just giving a bit of history..
I keep a diary of her activity & know that she has alot more activity when she is overtired or overstimulated (& definitely both!). I guess my questions are: Does anyone else have experiences with babies that have myoclonic jerks with abnormal brain activity that they would like to share? And.. should I be doing further invasive testing to get an official diagnosis or wait until, if, the activity increases? I really don't want to put her on meds if I don't have to. I don't know when the seizure activity is strong enough to warrant meds..
Thanks in advance for any advice..
My Mother (she's a special needs teacher) thinks she has absence seizures & has since she was born. I worried about this too as she stares off & goes somewhere else. But she is a very calm baby, which makes it hard. But you can't bring her back sometimes..
I've found it hard to obtain any information on babies that aren't having major seizures.. or absence seizure. I guess I'm looking for information from those who experience it. It's also been hard to find information on babies with myoclonic jerks. I guess because of the difficulty (hesitance?) in diagnosing babies with anything whilst their brains are developing.
Mak's fathers Aunt was diagnosed with epilepsy at 50 & Mak's birth was considered a hard, traumatic birth in that I pushed for 2 hours (I still thought it was ok - I had nothing else to compare it to!). I don't know if these directly contribute, I'm just giving a bit of history..
I keep a diary of her activity & know that she has alot more activity when she is overtired or overstimulated (& definitely both!). I guess my questions are: Does anyone else have experiences with babies that have myoclonic jerks with abnormal brain activity that they would like to share? And.. should I be doing further invasive testing to get an official diagnosis or wait until, if, the activity increases? I really don't want to put her on meds if I don't have to. I don't know when the seizure activity is strong enough to warrant meds..
Thanks in advance for any advice..