Tuesday, June 26, 2012

perfect timing

I debated whether to post anything on this blog that isn't happy or fun.I wanted to be able to print this at the end of the year and look back at all of the wonderful memories we have had. Sadly, we have had a few days that I could hardly find anything positive to say about. But, today, I feel lead to share something that I don't talk about much. As many of you already know, my oldest son, Tyler, has been having seizures since July 2009. The first ones were "caused" by the lortab he was taking for a tooth infection. He was admitted to picu at USA where he spent one night and the following night we spent on the floor. We were told there was no need to see a neurologist, because it wouldn't happen again. Of course, that didn't settle well with me. I had this feeling that we would be down this road again, but I prayed and moved on with life trying to convince Tyler, and myself, that he was ok.

But, one morning the following December, I was up early editing pictures when Tyler came into the living room shaking all over. I'll never forget his words, "momma, we have a problem." He thought he had a seizure in his sleep. My husband and I tried to convince him that it was just a bad dream. But he couldn't stop shaking, and he was very flushed. I had read that anxiety could trigger a seizure or even mimick one, so I thought the goal was to calm Tyler down as quickly as possible. I gave him a dose of benadryl. (Something he had taken many times before, but is no longer allowed to take b/c as I have now learned, it lowers the seizure threshold.) Within minutes, Tyler was having a seizure right in my arms again. I'll never forget the way I could feel his heart pounding through his back as I held onto my baby praying that God would let him live through it. Meanwhile, our other son, who was 2 1/2 at the time, became really afraid and even hit and pinched Tyler during this seizure. We brought Tyler back to the hospital where he had his first eeg and then was released to come back home.

In Jan, we followed up with a pediatric neurologist and had the full scope of tests; mri, 72 hour ambulatory eeg, and even a sleep study. Thankfully, everything turned out ok. I brought up the idea that this perhaps could be anxiety and the neurologist thought I was probably right. We felt ok with this b/c anxiety seemed to be treatable and we thought that by keeping him calm, we could prevent any more "episodes" as we called them.

A few months later, Tyler left with his aunts and grandpa for a vacation in Orlando. Having a newborn, Kyle and I stayed at home with the little ones. I was a little worried about the plane ride sparking some anxiety, but when he arrived safe and sound, I felt that Tyler was going to be ok. He was having so much fun, he barely wanted to talk to me at night when he called home. My stomach turns just thinking about the call I received Thursday morning, June 23rd (Kyle's birthday.) It was Kyle, who should have been at work. I knew instantly something was wrong. He told me he was on the way home. And, with lots of questioning, he finally told me that Tyler had had another seizure. About that time, I got the call from Tyler. Lisa tried to tell me what had happened, but all that I heard was Tyler had had many seizures. I could hear him crying in the background and my heart was breaking into more pieces than I ever imagined it could. He tried to talk to me, but I couldn't understand anything he was saying. He sounded like a drunk person trying to talk, but I understood that he wanted me to come get him and I knew I had to go.

It turned out that Tyler had at least 7 seizures that day. But, thankfully they started before everyone headed out to the pool; because, as you can imagine, that would have been much worse. It took us 12 1/2 LONG hours of driving in the worst conditions to get to him, but around midnight we finally arrived. Lisa had taken Tyler to the ER and he was prescribed tegretol. When we arrived, I rushed straight to Tyler, and I instantly noticed a rash all over him. As I read the RX insert, I saw that patients could develop a serious, and sometimes fatal skin rash. We brought Tyler back to his neuro and put him through yet another eeg that showed nothing. He was prescribed zoloft for the anxiety and we were told the rash was indicative of an allergic reaction.

A month later, Tyler woke up around 5:30ish and told Kyle and I that he had had another seizure in his sleep. At this time, Tyler was sleeping on the floor beside our bed because he was too afraid to sleep alone. So we were pretty sure that he had not had one, but yet he was shaking uncontrollably and I felt that one was on its way. Sure enough, within a few hours, Tyler had another seizure. Every time we saw the neuro and he asked questions about the seizure, but I could never really answer them or describe the seizure. I never timed them or anything because I was just in such shock over what was happening. But this time, I knew I had to to do something. I stood and watched as Tyler gasped for air and snorted in an occasional breath. His face appeared puffed up like a cabbage patch doll. This episode lasted a few minutes and then he had another within the hour. I was beginning to believe that perhaps, these weren't anxiety attacks as I had wanted so badly to believe. But, the neurologist ordered another 72 hour eeg which once again showed nothing. And, then he ordered a third 72 hour eeg, which had to be done at his office in Pensacola. Still nothing showed up.

Tyler describes his seizures as painful attacks where he can't breathe. He is alert during them and he does remember them afterwards. He once told me it felt like, "monster claws" digging up his legs. He told the ER that it felt like electric shock. After they are over, he can't move and we have to roll him over because his muscles are so worn they don't even function. Many times, we have even had to hold up our 11 year old son to use the bathroom because after a seizure and sometimes even during an aura, he can't stand up on his own. He feels a burning in the back of his neck and hears a buzzing sound. All of these things lead me to believe that he was not having anxiety, but truly dealing with seizures. But there was no evidence to suggest that.

A few months later, we had taken the family out to see the circus. The boys were having a blast until the very end. Tyler started getting anxious. He told me that he felt like he was going to have another seizure that night. Thinking we would distract him, we decided to take the kids to McDonald's for dinner. We enjoyed our dinner inside and then headed out to the car. While Kyle was buckling Caiden in, I looked over and noticed a strange looking man laying on the ground. I told Kyle to quickly get in and get out of there, but Kyle didn't move. I looked back and realized, this man was not just laying on the ground, he was having a seizure. He was apparently a homeless man who came out from behind the dumpster waving his hat at us and some others in the drive through as another man ran away. We were afraid to go to him at first because, unfortunately, there are many crazy people in this world who come up with crazy schemes to rob people or even worse, hurt them. Of course, Tyler witnessed the whole thing. The convulsions, the moaning/screaming, the bleeding from where he hit his head straight on the asphalt. Tyler got really upset and even had to be taken to the bathroom. We called 911 while some other adults tended to him and we left just as the ambulance arrived. I just knew this would trigger another episode for Tyler. But, to my surprise, it didn't. I just couldn't understand why we would have been in that place at that time. I began to believe that God was trying to tell me something. This man had a seizure that looked and sounded just like Tyler's. Anxiety, which was at it's peak, didn't trigger a seizure for Tyler that night. But most importantly.... my eyes were opened to what the future may hold for an adult with epilepsy. I prayed that Tyler would never be in a situation where someone would not want to help him for fear of their own life. I prayed alot during the next few weeks and felt so much guilt for being afraid to help this man. I worried that we were wrong about Tyler, but still had no evidence to show otherwise.

December used to be such a happy time. But this December, 2011, was clouded by memories of last December, and Tyler's seizures.... I prayed every night that God wouldn't let Tyler have another seizure. It seemed so silly, but I had this huge fear that he would have another one. A fear that prevented me from enjoying many of the things that I love. Call it a mother's instinct or whatever you will, but on December 9th I was sitting on the couch holding a sick baby who couldn't sleep when Tyler woke up and came to me with that look. I knew what was about to happen as I saw him fall. He gets an aura, always in the night, and it causes him to NEED to pace the floor. However, his feet get weak and literally fall out from under him every few steps. My heart was so broken and there was nothing I could do to help. Once again, I sat back and watched helplessly as my sweet boy convulsed for several minutes struggling to breath and with a heart that is literally pounding out of his chest. But then I decided something had to be done. I quickly grabbed the video camera and recorded the episode. He had another one a little bit later and I recorded part of that one as well. It was the most difficult thing I've ever done to sit there and record such a traumatic thing, but I knew I somehow I had to let the neuro know what was going on.

We called the neuro and they were able to work us in that day. But we were warned that he only had 10 minutes for us b/c he had a meeting. Dr Suhrbier took the video into his office to review it again. He came back within a few minutes. His words stung. He said, in the most sincere way, " I am so sorry. I've had a change of heart. After reviewing this video, I believe Tyler has what is called nocturnal frontal lobe epilepsy." blah blah blah, "He will require a HEFTY dose of medication." He explained that neurologist aren't "lucky enough" to catch these seizures on EEG because they occur so "deeply in the brain."

The next few days were a blur, but we managed to get through them. The medication he was prescribed also causes a very serious and sometimes fatal skin reaction, especially if it isn't introduced VERY slowly. We started at 1/2 tab each night and increased by 1/2 tab every two weeks. It took 3 months to get up to the minimum starting dose. Just a few weeks shy of the minimum starting dose, I was beginning to feel safer. That's when it happened. February 9th, Tyler woke up again with an aura and after pacing the floor for several hours had more seizures. Then again on March 13th, he woke up around 2am with an aura. This was one of the worst, because it was my birthday. I wasn't upset because it was my birthday. I would be just as upset no matter the day, but Tyler was devastated that it was my birthday. He felt that he was ruining my day. He cried and begged God to take it away. He banged his head on the door and said he would rather be dead because at least he won't have any more seizures in Heaven. He paced until he couldn't walk anymore. He would fall every other step and I had to pace beside him to catch him. When he was too tired to walk, he would just crawl in circles around the room. Kyle had to leave work to help take care of the two smaller children. We finally heard back from the neurologist and we were told to give him a new medicine. He took it around noon and finally at about 2:30 that afternoon, 12 hours later, he couldn't walk anymore. When he finally relaxed into Kyle's arms he had the seizure. It wasn't as terrible as the previous ones and didn't last as long. But, the 12 hour aura and seizure had left him so worn out that he slept for several hours. When he woke up, he wanted to step out in the front yard, so I went out with him. I spotted something out there that stopped me in my tracks. It was only a single purple wild flower. But, it was so much more. I believe it was a message from my angel momma. Before she passed away, we picked these very same flowers for her from behind my dad's shed as we had done for many years before. At her funeral, each of her 6 children placed a few of the purple flowers into her coffin with her. I felt so much peace just from seeing that single flower.

A message from above

After that episode, our neuro doubled the lamictal. I was back to feeling safe again, but somwhere deep inside, I kept feeling like we were not done. On June 14th, Tyler woke up at 3am with yet another aura. This time, emotionally, he handled it better. He didn't want another seizure, but he was able to stay calmer than before. The neuro increased his medicines again and told us to give another dose of his second medicine. Tyler had his aura until noon when he finally had a seizure. But, he continued to have more auras for a few more hours. I obviously pray for Tyler every day. I beg God to heal him completly, but I also came to accept that God will do so in His own timing. Sometime during all of this, I changed my prayer from please stop this seizure to please give us comfort during this seizure. But there were some truths to which I held onto dearly. "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10 and "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I have a daily devotional that I enjoy reading each day, but somehow, I had lost the November issue. I found it a few days ago and yesterday, I happened to read one that just hit home. It was titled "The Master's Silence." It was the story of the Canaanite woman who approached Jesus begging for mercy for her daughter who was, "cruelly tormented by demons." (as a side note, people with epilepsy were once considered cursed by the gods, possessed by demons, and even accused of being witches. Therefore, it is very likely that her daughter was having seizures.) Jesus ignored the woman, gave her reasons for not helping her, and even insulted her. But she did not back down. She continued to beg for mercy and humble herself before the Lord. She was rewarded for her persistence when Jesus finally answered, "O woman, great is your faith! Let it be to you as you desire." Mathew 15:28.

I want to be more like that woman. I will not give up. I will persist in my request and I will praise Him through the storm. I know that God is good and everything He does is good. I know that there is a reason for the torture Tyler is going through, but I will not accept that this is our final answer. I will pray without ceasing for my son to be completely healed. And, I would love for anyone who would be so kind as to join me in my request to please do so. The Bible tells us that when two or more agree on earth concerning anything they ask, it will be done for them by the father in Heaven. (Mathew 18:19)

Last night, as I quietly prayed for Tyler to get some rest and for God to ease his anxiety, Tyler sat straight up and said, "mom, did you just pray for me?" Stunned, I asked why. His answer amazed me. He said, "because God just told me it was going to be ok and He reminded me about the park tomorrow" WOW! I will continue to do what I can as far as keeping Tyler's sleep routine as consistent as possible, feeding him the healthiest foods that I can provide, and ensuring that he receives his medications in a timely manner. But I will not give up the faith that God will heal my son. I will not stop begging Him for complete healing. And, I will not stop praising Him through this storm. He is in control and I know that He has a reason for this.

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