Wednesday, May 16, 2012
Harlow's latest
Harlow went to the neurologist on Monday evening. He informed us the they think she has a condition called Focal Cortal Dysplasia, or FCD. From what I can gather so far it means that a part of her brain failed to properly form in utero causing epilepsy. Her neurologist, Dr. Asaikar is on the same page as us and does not want to medicate her yet. This is something that can go both ways, she can grow out of it which is of course what we are hoping for, or it can get worse. We go back to see him on the 4th of June and he will order more testing for Harlow so that means more time in the hospital. I will keep you all posted here. Thanks again for all you well wishes for Harlow <3
Monday, May 14, 2012
Wednesday, May 9, 2012
When it all began...
Not too long after her first round of immunizations, which due to waiting on new insurance wasn't until she was 6 months old, Harlow started doing this twitchy thing where she would lower her head to her right shoulder and be stiff there for a few seconds. I dint think much of it at first but noticed that it started happening more frequently with time. I then noticed at times when she was agitated that the head would still go to the right but it would also do a hard jerk back. I took her to her pediatrician but without seeing it there wasn't much she could do but refer us to a neurologist, this was in March, the neurologist didn't have any openings until late May. One morning in April I noticed the head jerking was pretty bad so I grabbed my phone and recorded it, took it to her pediatrician and showed her and she had us go in immediately for spine and neck x-rays which came up clear, also they moved our neurology apt. up to April 30th. With Chris being in Oklahoma my mom went with me and Harlow to the neurology apt. and showed him the video which he said right away was seizures and that she needed to have an EEG test done right away. An EEG is an Electroencephalogram, a test which measures brain activity. Chris flew in the next morning and a couple days later we checked in to the children's wing at Sutter Memorial downtown. They hooked close to 30 electrodes to her head, needless to say she did not make it easy on them. They wrapped her up with gauze put a beanie on her and she was plugged in to a computer that transmitted all her brain activity to an epilepsy watch center. They also had a camera on her at all times so they could monitor her. They wanted to do this for 72 hours but after about 26 Harlow and Chris and I were over it. It was really hard to keep a very active crawler in a bed for so long. Her neurologist wanted to do an MRI of her brain before we left so we did. That was really hard, after 4 attempts at holding my screaming baby down for an IV they had to gas her and put her to sleep first. That was the hardest thing to watch and go through. Being a parent there and being around other families that are going through similar things is very surreal. Having to be there and being one of those parents is something you never picture yourself doing. After the MRI Harlow woke up very happy from the gas. We went back to the children's center to get discharged and was told we needed to wait until her neurologist got there because he wanted to talk to us. That made me so nervous and was the longest 3 hours of my life. When he finally made it he took us to another part of the hospital where he views her brain activity and showed us that she is constantly having small seizures on the right side of her brain, every 30 seconds to a minute, and that it was Epilepsy. He said he only took a quick look at her MRI but there is nothing big on her brain that stands out but he would need to look at it more to see if there is something small that will have to be removed. He did not want to put her on medication because she is so young and her brain is still developing, which we agreed with. We meet with him again a week from tomorrow to make a plan for her. Unfortunately she will need more testing to figure out why she is having the constant seizures and how they can be on the right side of her brain and affecting the right side of her body. So I will do my best to keep you all updated here. We are currently researching if the immunizations could have triggered this in any way. Thanks for everyone that helped with Payton and Taylor while we were in the hospital and thanks for all your thoughts and prayers everyone. I can also add that after being in there and seeing what some kids are having to endure we are very lucky, it could be worse... a lot worse. Also I can not get the spell check to work so...sorry :/
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