Just Seizures

Well....last weekend was another ER trip. What started out looking like seizures changed course on me yet again and had me questioning just what I know about seizures and my son's health in general. When you are dealing with two different issues.....a shunt AND seizures in some cases the distinguishing factors can't be distinguished....it gets a little tricky. For example....the onset of a shunt malfunction causes pressure on the brain. Since David is non-verbal....I have to go by his facial expressions and behaviors....and apparently when something is going on in his head, his expressions are the same regardless of shunt or seizure. A shunt malfunction can also cause a seizure. Seizures can cause some of the same symptoms of a shunt malfunction. He will get very pale, sometimes feverish (depending on the type of seizure) and his vital signs drop. Since you don't want to mistake one for the other as a shunt malfunction is life threatening, I have learned to live by the motto....When in doubt....get him checked out. It does however make me feel some better when I take him in to the ER and the drs. themselves can't make a judgment call between the two without doing blood work and CT's.

Luckily....this weekend we were just dealing with seizures again and were sent on our merry little way. I said that to a friend....that it was just seizures and that we could handle that at home and she laughed at me. Just seizures? She asked if I remembered David's first seizure and his second one where I was almost too scared to take him home from the hospital and even last summer when I thought I would go crazy with all the mini seizures he had? And now I am using the word just with the word seizure and acting like it is a relief. It did sound funny....even to me.

The truth is, it is amazing what we learn to adapt to and live with and even eventually deem normal to our daily lives. I guess the fact that David can and likely will have seizures has become our norm. Probably too knowing that 90% of his seizures are mini-seizures lasting only 30 seconds and that he then goes on with whatever he was doing no worse for the wear helps me to usually not get overly alarmed any more. That and all the straight forward talks Dr. Shah has given to me. Dr. Shah is a little man (maybe 5'4") who speaks with what I believe is a Pakistani accent. He is very serious (unless around David.....but that is another story for another time) and very soft spoken and yet there are times that man has made me feel about an inch high. We have butted heads on several occasions and a couple of times he has put me in my place in no uncertain terms. Over the years though....I have learned that he truly cares about David and he ALWAYS has David's best interest at heart. Being David's mother though and having a vested interest in his survival.....if I don't agree with something or question it where David's health is concerned.....I don't hesitate to speak my mind. This does not make me a favorite amongst drs. Luckily....David's personality seems to make up for my big mouth.

So back to this friend who thinks my just seizures remark is hysterical. In the same conversation....she asked me if I felt I had learned a lot about seizures in the last 2 plus years. I had to stop and think. Hmmmm.....going from not even thinking about seizures and having a mental visual of someone writhing on the floor, their eyes going back in their head and their tongue swelling....to actually watching my child have seizures, giving him his meds and going on with the day.....why yes.....I do feel like I have learned a little. What have I learned? Glad you asked.

I have learned:
There is more than one kind of seizure and in my home we have dealt with febrile (brought on by a spiking temp), mini, staring, blinking and silent.

Seizures can happen all over your brain or just in various areas. Only an EEG can tell from where the seizures originate.

Different meds are required for the different kinds of seizures and for the different area's of seizures.

Often times not just one med will do the trick. In David's case he is on three different meds most given three times a day.

Seizures can be undetectable or last anywhere from seconds to hours.

Most seizures do not do damage unless they go an hour or longer.

Mini seizures can usually be halted by diazepam (valium)

Seizures lasting over 2 min. need a good dose of diastat (adavan) to stop them.

Having a seizure lasting more than 5 min. is like that person running a marathon. Their body is just exhausted and their muscles are limp. Often times they will sleep straight through the following 24 hours.

Because a pro longed seizure plays so harshly with the body....it also does a job on the emotions. There is usually a good 48 hour period where the individual is just an emotional mess. They experience everything from anger, agitation, sadness, laughter, and even a bit of aggression.

A febrile seizure can trigger other kinds and types of seizures.

Anyone can get seizures but kids with cerebral palsy are often very susceptible to them.

For someone with seizures, seizures can be triggered by exhaustion, bright sunlight, light reflection off water or snow/ice, certain video games, strobe lights, flashing/blinking lights, hormones, a cold or flu, missing a med dose or taking anti-biotics without adjusting seizure meds.

Sometimes since seizures are a type of misfiring in the brain....an individual can come out of seizure being able to do things they couldn't do before. In David's case....he started saying Mama after one seizure and was able to put on gloves after another.

There is usually little if any memory of the seizure and as I said above....usually no permanent damage done.

Often times kids grow out of seizure activity when they grow out of the hormonal teenage years.

While scary (especially at first) seizures are livable. Of course precautions such as meds should be in place, but just like with anything else....a new kind of normal can be established.

So have I learned a lot since David's first seizure in 2008? Much more than I ever wanted to or thought I would. Is there more to learn? I know there is literally tons I don't know about seizures and the way my life goes.....I am sure I am going to get plenty of hands on....on the job training. But for now, there was no shunt malfunction...and before we left the ER on Saturday.....David was back to pretty much his old self. So yeah....for now, I take a big sigh of relief  knowing that the med change is working and that life will go on because we are simply dealing with.....just seizures.