A frustrating look into the life of a family dealing with epilepsy.

Day 4 – Monday Discharge Day

Today we got more info, but not without pressing for more than “we are working on it”. Todaythespecialistsaid she is definitely having Petit Mal Seizures and they are happening a lot. I asked how many on average daily and got no definitive answer. Later her NNP told me it was hard to tell where the clinical (see it) seizure activity ends and the non-clinical (can’t see it) seizure activity begins. In other words, she’s having seizures so often that at times they are merging together. Some we see and some we don’t. Some last for 10-20 sec with some motor activity and some are just brief starring episodes lasting 5 seconds. Sometimes she’s aware of them and sometimes she’s not. This was happening without any changes to her meds.

Now we are able to start changing medications, but it will be a very SLOW process. That is very hard to deal with. It’s only been at least 1 year since this increase in seizures started.

I want so much for her to be independant and be happy. Go to college, do normal stuff. Is that so much to ask? It’s what most parents want for their children. If only those parents of normal, healthy children knew how lucky they are to not have this worry.

I am so lucky to have my daughter. I’m grateful for every minute with her – good or bad. I’ve been blessed every step of the way with her. She’s beautiful, smart, creative and most of all, the best daughter. I only want the best for her.

Tomorrow – Tuesday we are seeing a Metabolic / White Brain Matter Neuro specialist to review the underlying cause of her increased seizure activity. After that appointment, we should be on the road back to GR. I anticipate being home sometime around 10pm. Tuesday evening.

I will write more later,

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