I have a three year old who started having seizures in June. She had drop, myoclonic and a few real short grand mals. She was put on onfi after a four day visit to children's and that didn't help anything. So they added keppra and it stopped the grand mals. Went back to children's for another eeg in July and they added depakote and it helped tremendously with her drops but she still has some after her afternoon nap into the evening. Mostly head drops but a full drop here and there. Her eeg in… read more
My 9 year old daughter had and still has all the same type of seizures that you describe your child did and then some other kinds too. The keto diet worked wonders until we stopped it due to financial and family difficulties, it is a vey strict diet and there was too much going on I couldn't risk it, but being on the Keto diet for even only four months when she was three years old was amazing, because since then she hasn't had the seizures she had on a daily basis. It took many doctors and medicine changes and ups and downs to come to the conclusion that my daughter has a PCDH19 gene mutation and Dravet Syndrome. Once that was discovered, she was started on keppra, clorazepate, and zonisamide, and her seizures have been controlled to the point that she now has episodes of only 6-25 seizures in a two day period with only one day of what I call her recovery period afterwards but these episodes only occur on average between every two and five months now, and she has now only been hospitalized once in the last three years. This is awesome compared to her previous multiple ones, between 30 and 50 seizures per day for two-six days straight with a three to five day recovery period which occurred between twice each month to every two months, with her needing to be hospitalized every single time. Another great change from discovering the gene mutation is that we had to keep Diastat on hand all the time for her, but since this new regime started two years ago, we haven't had to use the Diastat at all. Her seizures vary in type and length, and include any combo of what I call the "four S's": stiff, stare, shake, and scream, plus drop seizures. I still can never keep track of the actual names of the seizures because she has a mixture at once and it's confusing for me to remember the terminology. Also, the heat especially affects her, but she is very sensitive to any type of temperature change, even slightly, and her seizures may or may not come with fever, but it is prominently with her right hand slowly raising, stiffening, and trembling that she starts almost all her seizures except the drop ones which always has her whole body stiffening then convulsing at once. She also pees nine times out of ten when she seizes, plus she will actually sometimes speak with them but it's kind of like a banter not conversation, and though her arm and/or body is stiff and/or shakes, her right hand almost always grabs something like my hand or shirt and squeezes. Also, each time she has an episode now, along with all this "usual" stuff, there is always something new even if it is slight, such as a different type of stare or her scream/cry will change in pitch, but these small things are important for the doctor to know. I'm sorry this is so long but I hope it helps.
If the meds she's on don't seem to work or if the side effects are too much , you may to try different meds. find out where exactly her spells are located. Are they near speech , language and memory center, is it frontal lobe , and ect. Talk to you, Dr. About all the different options and treatments. Have them lay everything out on the table for you. The more options there are the more possible directions you can discuss between each other and your . dr..
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