My 5 year old has been having seizures.  Since about the same week that I miscarried, we started noticing that she would stop abruptly, put her hand up to her face and later tell me that her eye hurt or that her face felt weird.   As time went on, I realized that her face was actually spasming.  She wouldn't lose consciousness and could hear us the whole time that it was happening, but it was definitely concerning!  I took her to the doctor and he just diagnosed it as a facial spasm and said it would probably go away in about a month and if it doesn't to come back.  I wasn't really satisfied with that.  I knew that it wasn't right and seemed more than just a spasm. 

As soon as I left the doctor's office, I called a chiropractor that specializes in pediatrics.  She got us in the same day.  She adjusted her but didn't know that it would help or not.  It didn't end up helping and the next day, she had 20 episodes in one day!  While at the chiropractor, she figured out that it could be a problem with her eyes, so we took her to the eye doctor the next work day we could get her in.  The eye doctor figured out that they were triggered by light and was able to see 2 episodes while in the office but she didn't feel like it was due to a problem with her vision.  As time went on, we noticed that she was sensitive to brushing her hair, immersing her head in water, blinking lights, loud noises and pain.  They could all potentially set it off.  That's when I was really believing that it was a seizure.  I called my doctor's office back and explained all the things that can cause it and the "nurse" said tha the doctor thinks she'll be fine but they set us up a referral appointment with a neurologist for our peace of mind.  Almost like she thought we were overreacting, but if we need peace of mind, here you go. 

I did some checking on the neurologist that they referred me to and decided I didn't want to go to this man, that I wanted to go to a pediatric neuro.  Reagan is nervous around new people and she needs someone who is used to handling kids.  I requested help in getting her into a pediatric neurologist and the soonest they could get us in was over a month later that the nurse scheduled.  I requested that the nurse help us to get into one of these earlier(one of the ped neuros had told me that my dr's office can get me in sooner), but she would not go any more out of her way for us.  She kept saying we should go back to the doctor they had originally referred us to.  It was as if she was saying that if we were going to reject their referral, she will no longer help us!  SO.. we started going on our own calling to try and get in sooner and found one that could get us in a week earlier.  We decided to make the appointment as they said that they'd work us in earlier if they could.  We actually kept both appointments hoping that one would work us in soon.  Of course, why would they if my doctor's office is calling this a muscle spasm? 

Before Christmas, we went to Silver Dollar City in Branson and while we were in Springfield, we took her to another doctor for a 2nd opinion.  She agreed with us that it was seizures.  She thought we were OK waiting until the EEG that we had scheduled on the 2nd.  Later in the day, we got a call from her and she said that she was researching cat scratch (we had told her we'd gotten a cat about the time that the seizures started) and discovered that one of the atypical signs can be seizures and that she wanted to treat her for that just in case.  Finally, we're getting somewhere and someone wants to try something to hopefully help.....even if it doesn't help, it's nice to have a possibility of what's causing it on the horizon.   

The next day, her seizures started getting worse but after she was on the medication the frequency wasn't as often.   Could it really be cat scratch fever?!  She had been having 10-12 seizures a day but the day she started meds, they went down to about 8...then 7.....6......4.....3......4.....and today 2!!! (during waking hours....she does have some at night but we're not sure we're catching them all so we only count the ones while awake)  The problem is she was now wetting herself every time and becoming more upset after each seizure.  Of course, it was most upsetting if someone she didn't know well had been watching her.  We've got her in pull ups for now and that's definitely helped her emotional status. 

Earlier this week, we had a particularly bad day where her seizures no longer gave her advanced notice that it was going to happen.  She fell and hit her head 2 or 3 times.  Before she had enough time to brace herself and get herself to the floor.  Now they're very sudden.  We've not been letting her go anywhere alone in case this were to happen and cause a serious head injury.  She is often holding someone's hand from one end of the house to the other.  At one point, she had just gotten out of bed to get a drink of water when a seizure came on... and she had hit the floor faster than I ever dreamed possible! 

After this day, I called the pediatric neuro and explained what was going on and they said they'd work us in the same day to see the neuro when we get the EEG.  What a relief!  We now will FINALLY get to talk to someone who knows a little something about seizures and hopefully figure out what's going on.  After all, I found out that seizures are just a normal part of a neurologists life.  :D  I guess it's a normal part of mine, too!  She's got to be sleep deprived with only about 5 or 6 hours of sleep and no sugar or caffeine in her system.  She normally has about 10 hours of sleep, so this should be interesting.  I'm hopeful that it was only cat scratch fever and so very thankful that no serious injuries have happened!  We go to the doctor on Wednesday, January 2nd.  I know that God has been there with us along this journey and that He is healing her.  Please be praying for us and for the doctor to know just the right thing that Reagan needs!  I'll try to post an update on this blog as soon as possible.