Eden update...

Eden started having seizures on Thursday April 5th.  She typically has up to 3 clusters a day.  By 'cluster' I mean each time she clinches down, she is having a seizure.  She will clinch down numerous times for 3-7 minutes at a time, up to 3 times a day.  By Wednesday the 11th we were in Iowa City for an EEG.  I tried to talk to someone on Saturday but the doctor wasn't available and the person I did talk to said we could come and be admitted to the hospital if we wanted.  With Easter the next day we decided to just wait until Monday to call again.  Another day was wasted as we waited for the doctor to call us back.  Monday night while we were at gymnastics Eden had a seizure and Shea (her kids attend gymnastics also) who is Eden's doctor, was able to see it.  She was concerned and said she would call the next morning too.  I called right away in the morning and was told I would get a call back right away and I did.  That's when Eden got scheduled for her EEG.  At her EEG it was awful.  They had us lay her down on the bed where they wrapped her in a blanket to keep her arms out of the way.  The guy drew all over her head to mark where to put the wires.  She did pretty well during most of this time as long as Brian and I talked to her.  She got really tired of it toward the end though.  It took about 45 minutes to get her all hooked up.  They have to use special, really smelly glue and then use really cold forceful air to dry on the wires.  She hated it and cried so hard the whole time.  She was more than ready to sleep by the time the study started which is how they wanted her.  She conked right out!  It was the sweetest thing.  I will never forget the way she looked that next hour.  Aside from the wires coming out of her head she was so sweet!  I rocked her to sleep in my arms and then laid her on the bed and I laid next to her.  I stared at her almost the whole time.  She woke up herself after about 45 minutes which is good because they need to also monitor her while she's awake after she's been sleeping.  After getting all the wires taken off (they use an even smellier chemical to get them off to dissolve the glue and she cried the entire time again) we headed to our appointment with the doctor.  They said she hadn't entered into hypsarrhythmia (a pattern of high voltages that are best described as a constant seizure even if you can't physically see it) yet so that was excellent news, but that her EEG definitely wasn't normal.  After seeing the video we recorded of her having them and looking over the results of the EEG, they were confident that what she was/is having are infantile spasms.  This was the missing piece needed to give Eden a sure diagnosis of Aicardi Syndrome, so as scary as it is, it has been confirmed.  The doctor is having her start a very high dose of steroids to try to stop the seizures.  She has to take 40mg/day along with 5mg of Prilosec to protect her tummy.  This is no small feat.  I feel like she is having a meal when she takes all this medicine.  And she has to have it first thing in the morning so it is hard to give her prilosec and then wait a half hour for that to work and then feed her and give her the steroid.  The steroid is about 1.5 teaspons and the prilosec I have to mix with 2 Tablespoons of water and then give it to her.  The first time I gave her all this I was so angry and upset.  The steroid was supposedly supposed to be cold according to the pharmacy (I later found out it does not have to be refrigerated), and it took me over 20 minutes to get her to take all her prilosec.  I called the pharmacy the next day as I am reading the directions on the box for the prilosec and it says 2 teaspoons.  The pharmacy confirmed that 2 teaspoons was correct...big difference people!  It is now Friday and she is still having seizures.  They said it could take 3-4 days before we see some results.  Sunday would be day four but I will wait and call Monday if she is still having them.  We really need prayers that the steroid begins to work and that the side effects are minimal.  The doctor said side effects she could receive from the prednisone are: fussiness, hunger, sleeplessness, puffiness (especially in the face), stomach ulcers, etc.  I am so worried to give her so much medicine.  Pray for peace for both Brian and I.  I know God has a plan for our little girl, it's just hard to rest in that sometimes.  If you are interested, here is a video of her having a cluster of seizures...

Stats at EEG on April 11th are as follows:

Weight: 11 lbs 8.5 oz.

Height: 24"

Head: 41.5cm