Why does Philippe have seizures?
Sadly, we don't know. We haven't received a formal answer from the doctors so we've only had a few assumptions, when he was born he had the umbilical chord wrapped around his neck and wasn't breathing, he was all purple and gray, the doctors where able to get him to breathe, and to this day, we tend to think that the lack of oxygen might have caused some damage to his brain cells. But unfortunately, that is just a guess.
When he was 5 months old.
What are Philippe's seizures like?
He can usually feel them coming and gets scared and screams. Once the seizure starts kicking in his eyes start glazing over and get locked, same with his jaw. His arms and legs are extended and locked as well. He holds this for about 5 seconds and then releases the tension on his limbs. He will relax for about 5 more seconds and then tense up again. This will go on for approximately 15-20 mins with the intensity getting lower towards the end.
How long are Philippe's seizures?
15-20 minutes
How often does Philippe have seizures?
It varies, sometimes he's had two in one day, the average is one every 3 days and rounding up to anywhere between 4 - 12 in one month.
Is there a specific time of the day when Philippe seizes?
Usually it's in the morning, within minutes of him waking up. However he has had them during the day. When they happen it always is after he has taken a nap or slept for a while.
How have the seizures affected Philippe's development?
They have caused a great impact on his development, he learns everything at his own pace. Christmas 2010 he started crawling, when he was 1 year and 1/2 old. Christmas 2012 he tried walking for the first time. So as you can see, it is completely different to the other boys. Currently we are working a lot with communication, Philippe can only say a few words (mama, dada, wawa) and knows a few signs (please, more, up), because of his limitation in communications he gets very frustrated sometimes and will bite himself or things around him.
What have you tried to help the seizures stop?
You name it! Ketogenic diet, different medicines, different therapies, natural medicine, etc.
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