Being educated about Livia’s syndrome is something I am confident to say, we are educated. We have prepared ourselves in knowing what to expect. Or, what the books say will happen to her. This knowledge is stored away, and not focused upon. One of the things that gave me some peace when we received her diagnosis was, we were told that when “changes” occur with Liv, or life altering situations arise, they won’t just all of a sudden happen and we will have to make big adjustments. They will be gradual, and we will be able to be prepared. I thought I was prepared. I mean, I knew and had mentally gave myself pep talk after pep talk that we can do this, and we will do what it takes to give her the best care and keep her comfortable and safe.
I must have needed one more pep talk.
Two weeks ago I received a phone call from Livia’s school. I missed the call but heard the voice mail. I needed to call the school as soon as possible, and that Livia was ok, they just needed to talk. I called back right away and got her teacher. She explained to me, calmly, that she was pretty sure she had just witnessed Livia having 2 seizures back to back. She described them like a “pee shiver” all over her body with about 15 seconds of unresponsiveness afterwards. Twice. No pep talk could prepare me to actually hear those words. The rug was pulled out from under me and my mind started to race. What is she feeling, how long have these really been going on, is she in pain, is it really true, is this causing faster digression, I need to get to her, I don’t know anything about seizures, call the Dr., and pray. I felt completely out of control and nervous. The teacher, Thank GOD, was so calm and knew what she was dealing with. She is educated in special needs and has dealt with seizures. I trust her 100%. The school nurse was involved at this time, and she was a previous ER nurse. I still needed to get my girl. After our phone call ended I immediately called Livia’s geneticist. I explained what was going on. I had to wait for a phone call back from them as to what we needed to do. In the mean time I called Jake and told him what was going on. He left his school and went and picked Liv up and brought her home. We just needed to be together. Calls to family were made. Liv was fine that afternoon, and thank goodness for a random trip to the grocery store and running into amazing friends that told us to just come over. The kids played, we were distracted, and they fed us. It was just what we needed. To be taken care of.
The next day, Jake and I decided to send Livia to school. We both felt like she was in better hands with her teacher and school nurse. They knew seizures better than we did, and knew what to do. I needed to keep our schedule as routine as possible. That morning, I heard back from the geneticist that Livia needed to be seen by a neurologist, but can’t be seen until 6/17. Not cool. That afternoon I got another call from Livia’s teacher that she saw 2 more seizures. This was Thursday, Monday was a holiday. I knew nothing more was going to get done in regards to getting her seen in Chicago right away. I had to have faith and just be calm. Livia’s nurse practitioner, here, had given me her personal cell phone. She told me awhile ago to just call her if I needed anything, or just to talk. I decided to call her on Friday to tell her what was going on. She agreed that waiting until 6/17 was uncalled for and she would be making phone calls first thing Tuesday morning. Sure enough, I heard back from Liv’s NP late Tuesday morning and she got an EEG scheduled for Liv on Thursday. If the EEG showed something, the thought was, her appointment would be moved up. However, the neurologist in Chicago heard what was going on and called me on Wednesday that he wanted to see Livia after her EEG and he would squeeze us in. THANK YOU!!!!!!! We had to keep Livia up until midnight on Wed. evening, and wake her at 4am. They wanted her sleep deprived for the EEG. Ideally, they want a child to fall asleep, but Liv did not. Really not a big deal, she was relaxed and calm during the test.
The EEG did not show a seizure while we were there, but it did show something called “slowing.” This is what occurs after you have a seizure. So, with Livia’s teacher’s description of what she had seen 2 days in a row, and with the “slowing.” The conclusion is that Livia is having seizures. The neurologist gave me 3 different options for medication. I was so nervous about this. 2 of the medications cause irritability. This immediately sent me into a tail spin of emotions, and the tears flowed. I expressed to him how I didn’t want a medication to change who Livia is. I explained to him that children with MPS are typically not happy kids. Behavior is usually an issue. I then, through my tears, told him that Livia does not have this typical MPS behavior. I told him that Liv is so loving, laid back, and social. I didn’t want that to change. Then something amazing happened. He shared a personal story with me that I will forever remember and find so much comfort in.
He started to tear up.
He said “I can see that Livia is a very pleasant child. I can see your concern about these medications and agree that, by your reaction, these medications are not the right choice. Let’s try this other very safe, low side effect med. I want to share something with you about a former colleague. This women was a neurologist that contracted something that changed her cognitive function in a severe way. She lost the ability to pretty much do anything. She could not practice medicine anymore and depended heavily on others for care. She was in attendance at a review of her peers. She was asked to draw a simple picture of a bicycle. She could not perform the task. Here, a women with her Ph.D in physics, could simply not do it. However, she was still pleasant to be around. Her soul remained, who she was did not change. Livia’s soul will never change.”
I wanted to jump out of my chair and hug him right then and there, but I didn’t seeing as this was only our first time meeting. I did thank him for sharing that story with me. Learning that your child is having seizures is scary, but receiving an assurance that who she is will always remain, that is peace.
Don’t forget to read part 2~